I think I've missed a day or two with updates and there are many people that I have neglected to call. I have yet to get through all the messages on my phone. All I can say is that this is THE most difficult thing I've ever experienced! If it weren't for my family and my friends I don't think I would be existing today!
Zeta had a great day yesterday. She was off the oxygen and didn't need the lights. We were able to hold her almost all day!!! They did a CT scan of her brain and everything checked out fine. There were no issues with the cerebellum as initially suspected. Steven and CHancelor got to come visit and I am so glad they were able to see her! I think they were initially concerned with all the wires and alarms but quickly became so involved with this little being that is their new little sister!
It was very disappointing to get there this morning and see that she had the cannula for more oxygen and was back under the lights. We were looking so forward to being able to hold her again! She had a few episodes with her breathing and they had to turn the oxygen up even more while we were there. They're afraid that if it continues she may have to go back on CPAP. They do think that some of her problems breathing may be due to her size, her small chin and soft cleft palate. She breathes better when on her stomach so they are keeping her that way most of the time now. I do like seeing her when they first put her on her stomach as this is when she is most active. She literally looks like she is trying to scoot out of the machine! The dr. heard a heart murmer so they did a chest x-ray and we will consult with cardio again. They have started some of the initial tests on her kidneys and found that she does have one multicystic kidney that is nonfunctioning and will eventually require removal. Her good kidney is low in the pelvis and is more prone to injury - I guess that means she cannot be a tomboy and we will have to teach her to be prissy :) They are also checking on the function ofthe good kidney as there may be concern with relux or obstruction. We are praying that there is not an obstruction as that would require surgery on the good kidney.
Stevie and I apppreciate all of your concerns and prayers more than you can begin to understand. I do apologize for not returning calls or messages the past couple of days, but we can't have phones when we are visiting Zeta and by the time leave we are utterly exhausted. Please know that we love you and that we do appreciate your calls....and you aren't bothering us at all (as some of you keep worrying) ... we sincerely appreciate hearing from you!!!
On a good note, we just called to check on Zeta and she has gained 2 oz. since they weighed her earlier today!! Yay Zeta!! Please continue to pray for her progress and God's hands on all the doctors and nurses involved in her care! Also pray for our boys as they are dealing with so many changes and ups and downs. Finally, please pray for God to continue to give us the strength to deal with the unexpected and the unknown. When you have a child your outlook on life changes. When you have a child with health issues your world is turned upside down and you realize just how precious life is!!!!
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Thank you
.by Angel Crim Brabham on Thursday, March 18, 2010 at 10:11pm.I cannot explain the gratitude I feel when I read your comments and emails and when I hear your phone messages too. The love and prayers are felt each day. Today has been especially hard if not only due to Zeta's current health status, but my emotional being as well. It is such a true blessing to know there are so many people praying for us. As I felt myself trying to "take control" from God again I finally prayed for myself and asked him to give me strength. I pray for my babies and my family every day, but I realized that I need to give God my thanks for all the we have. I cried for a family tody as I heard the doctors tell them their baby would probably never walk or even sit up - but God has a plan for that baby too! I rejoiced as I saw two babies get to leave the hospital today. The excitement poured out of my heart for these families! I pray that I will experience that emotion for my own family soon!! To all our family and friends we love you!!
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Zeta Update
.by Angel Crim Brabham on Thursday, March 25, 2010 at 7:57pm.I am overwhelmed with so very many emotions as I write this note. We are hoping that Zeta will come home early next week. This was mentioned as a possibility late last week, but then plans changed somewhat. I am more confident that it will actually happen this time. I am so very happy that my baby will finally be coming home and that our family will be together again. I am very nervous because of the constant, continual, and precise care that she will need. I am nervous because what my boys know as a normal life may change and they may not quite understand why. I am scared because of the many medical issues Zeta is going to have to face throughout her life. The doctors think that they may be coming closer to an answer as to exactly what is going on with her, but we won't know for sure for a little while longer. The most recent finding are issues with her eyes. She has seemed so well for the past few days. She is even finally gaining weight - 4 lb 6 oz. up from 4lb 3 oz. The greatest thing is that she is stable. The hardest thing is the waiting and watching to see how her disabilities affect her and whether or not all the medications continue to work while we wait for necessary surgeries in the future. So, who knew you could feel so many conflicting emotions at one time? I know that I am not the first person to have a child with special needs, but she is MY first child with special needs. I know that God has blessed us as her parents and her family, but I still (maybe disobediently) question why it must come at such a great cost to her. I have no doubt that she will love and be loved. I just want to take away all the pain she might experience. I hope that one day she truly does understand what a miracle she is and how many people love and pray for her. My heart overflows with warmth and gratitude for all that God has given us and for all of our wonderful friends and family and all the support you continually give to us!
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Zeta
.by Angel Crim Brabham on Sunday, March 28, 2010 at 12:22pm.The doctors had decided that Zeta would come home tomorrow so we got to room in with her (in her own room) last night. We were so excited, but she had an "episode" around 3 this morning and they had to move her back to the NICU. They told us that we would be here at least a few more days for them to observe her in the NICU before trying to going home again. We were a little disappointed that she is not coming home tomorrow, but very glad that they are going to monitor her more to make sure nothing new is going on.... So far she has been doing very well this morning:) I hope maybe last night was just something random and that all will continue to go well!
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CHARGE SYNDROME........
My baby has CHARGE syndrome. We've had the diagnosis for a few weeks, but for some reason I couldn't bring myself to tell anyone but a few that are closest to me. I don't know why......we knew all of her medical conditions and I knew even when I was pregnant that they were looking for some type of syndrome........it puts a more ominous tone to it when you say syndrome.........I cried and told the doctor that it didn't matter to me what she was like that I only wanted her to know how much I love her and I wanted her to love us too.....He told us that God was going to make sure of all of that. That is one reason I admire this particular doctor so very much - he puts faith in God and not just medicine.
To summarize CHARGE:
CHARGE is an acronym
C - Coloboma of the eyes
H - Heart defects
A - Artresia (narrowing) of the nasal passageway
R - Retardation of growth and/or development
G - Genital or Kidney problems
E - Ear issues
Charge is also sometimes referred to as Deaf/Blind Syndrome. Although not all children with CHARGE are deaf or blind they do experience significant difficulties with vision, hearing and other sensory areas.
Charge is a rare, random genetic disorder. There is not a whole lot of research on Charge as it is a fairly "new" syndrome named in the 80's I think. If you know anyone with CHARGE and they don't mind sharing their story please PM me and let me know. If you want to find out more there is excellent info at chargesyndrome.org.
Zeta exhibits characteristics in each of these areas. The hard part is that there is no way to know how vastly or how mildy the syndrome will affect her because a lot of it has to be monitored and watched as she grows. Thankfully her heart issues are very minor and so far she seems not as severely affected (I think) as could be.....I am very hopeful in assuming that she is starting to recognize faces and smile on cue as I feel I have seen her doing this the past couple of days......She already has her own little personality and I do believe she is the most content baby I've seen:)I am happy to share that although she is still not even on the growth charts she is making steady weight gain! THis is a very promising thing for us.
I know some of you have had questions and a lot of you have expressed concerns and have left lots of messages. Please don't feel like we're avoiding you........We appreciate everyone's concern and the numerous thoughts and prayers. I can't wait to share Zeta's story with her when she is older and share with others the miraculous power of prayer and how quickly prayer spreads. We have received so many well wishes - even from other parts of the country and some from people we do not even know. That shows the power of what is happening and how the request of His people can spread!.
Thank you, thank you for your continued prayers for our family. God has already reached His hands out to us by giving us this precious life and I know he will continue to watch over us and provide and protect us.
This will probably be the last update for a while as I found in our short time home last week that I have NO time for the computer when I don't have all the nurses around to help me........but, I know once we get in a good routine I'll be back to visit my facebook family:)
Where we are now...REALITY
.by Angel Crim Brabham on Saturday, May 1, 2010 at 1:55pm.I'm usually a pretty 'private' person. I don't like to put my business 'out on the street' for fear of people evaluating, critiquing, criticizing, or feeling pity. Maybe I don't always like to share things, because I don't want to make people worry or feel like I'm not the happy person who never leaves home without a smile. So why then have I felt the need to post such feelings now, throughout the short life of my baby girl? Is it to let people know why my child may be different, is it a need for support, a request for prayer or an invitation into my own self-imposed pity party? I really think it is a combination of all of these things. So it goes my life is becoming an open book.
Zeta had some more apnea episodes after we came home from the hospital last time. Her secretions were becoming more copious and causing a good deal of choking causing more fear of aspiration due to her swallowing difficulties. When I called to let the dr. know of the apnea and secretions she called me back and told me that we needed to be directly admitted to the NICU for a trach, fundo, and g-tube. Now, in the instant she told me these things I was not particularly alarmed becuase there has been talk of a trach and g-tube for some time. However, in the next instant I realized what kind of implications this may have - for Zeta - and for all of our family - but most of all for my baby, Zeta. Sure they had told me she would probably ONE DAY need a g-tube and trach, but once I got over the intial shock and was able to take her home I kind of chose to forget about it.
When we got to the hospital and after much debate and consideration, it was decided that Zeta would have some laser surgery in order to alleviate the collapsing of the top part of her airway. I begged many times for them to do the fundo and g-tube at the same time as the airway surgery, but scheduling all teams involved would prove to be difficult. It's kind of hard thinking about your tiny being put to sleep at all much less more than once in a short time period.
We could tell an almost immediate difference in her breathing. She did not seem to retract nearly as much and by the second day, the noisy breathing was significantly better too. That's not to say there weren't some scary moments after surgery - like when her heart rate would continue to bottom out each time she choked and when the dr. in the unit called the ENT to come back up and listen to her to verify whether we were dealing with post-airway swelling or airway collapse. Luckily it proved to be swelling and we got by with steroids, oxygen, and some morphine versus being re-intubated.
Now, the fundoplication (surgery to wrap the top of her stomach around the bottom of her esophogus) done for reflux and possiblity of silent aspiration- and the g-tube ( a more permanent form of tube feeding versus the ng she currently has in her nose). We have three doctors telling us that we need to go ahead and proceed with the surgery now while we are here. We have one professional telling us that we need to wait and a surgeon that we have yet to talk to in order to find out his opinion. The last thing that we heard was that the surgeon was going to talk to ENT about how long he needed to wait before he could go in because of airway concerns. So right now, I don't feel like we are really any closer to making a decision.
Meanwhile, Zeta has continued to be sort of out of it since surgery and I really found out yesterday how that was wearing on me. I felt as if, for the first time, I let reality sink in- again. That I have a child with a daunting diagnosis who is medically fragile. Sure, I have this feeling a lot, but usually it comes and goes. Yesterday, I could not get rid of it! This morning has proven to be somewhat difficult, but it is getting better. There are times that I seem to forget all of her problems, surgeries past and present, medications, etc and I just see my sweet baby girl. I think, you know she is really not that different and really at times she is not. We have yet to see how all of this will impact her as she gets older. Who knows what is in store for us? Will she be mildy or more severely affected? I don't know. I just know that I have to quit dwelling on that point and just enjoy the moments that we have together!
I've often said throughout this whole journey that God has sent me quiet whispers through various means. Right now, I'm learning that he has been practically shouting at me, but I've been running on survival mode and perhaps have been too selfish to see it. He has given us such wonderful, caring, and supportive families. I can only imagine the disruption to my and Stevie's parents' lives. Not only are they dealing with the feelings of a less than healthy grandchild, but they also shoulder the pain of watching their own children deal with emotional turbulance, and also being given the responsibilities of basically raising our tww older children (for now anyway). They have given us unnumerable amounts of emotional support and other resources that allow us to focus on Zeta and her health. We have many dear friends that understand why we don't always return calls or emails, but still they leave the messages. These are very true friends that know that although we aren't always available (emotionally or physically) to talk that we do very much need to hear their voices and have their support.Finally, there are countless friends and family, mere aquaintances and also other nameless people to whom we owe much. People have reached out to us in such a manner that we can only be infinitely grateful and hope to one day be able to 'pay forward' the outpouring of love, prayers and other support. I often think and hope that 'this too shall pass' during my lifetime and we will be able to take what we have learned and what we have gained and share it with others. See now why I feel like God has been shouting?
While I was holding Zeta yesterday, I looked into her eyes and asked, "God are you in there?" and she smiled - coincidence? Then on the way home I was searching through the radio station and it stopped on a Christian station. The message was about the power of a reslient mother and her strength. Was that message intended for me? After the message they played a hymn. For some reason I cannot name it and do not know all the words, but the chorus was "When you seek me you shall find me, I have plans of promise and not of harm.......NOW for those of you that I've talked with a lot about this you know where this verse comes from - Jeremiah 29:11 - that mysterious verse that seems to pop up each time I'm having an especially hard day. As a matter of fact it "popped' up not only once, but twice yesterday. I finally had to leave the hospital because I felt as if I could not take it anymore so I left and went to the bookstore for a while. I purchased, Be Anxious for Nothing by Joyce Meyer. I randomly opened the book and this is what I read, "For I know the thoughts and plans that I have for you, says the Lord, thoughts and plans for welfare and peace and not for evil, to give you hope in your final outcome." Jeremiah 29:11 prior to that verse Meyer writes, " THe root problem...is trusting ourselves mnore thabn we trust God. We love to have a back-up plan. We may pray and ask God to get involved in our lives, but if He is the least bit slow in responding (at least, to our way of thinking),we are quick to take control back into our hands. What we fail to realize is, God has a plan for us too- and His plan is much better than ours. " Again, I feel like this was a very direct message to me, because yesterday, I felt like it finally sank in that there is no magic cure for CHARGE syndrome and that there is no quick fix to all of medical issues and I did not like this realization.
Thank you for allowing me to share and for your kind and loving ways, thank you for continuing to pray for Zeta, for our boys, for the doctors and medical staff and for our family. Thank you for being a part of my testimony and helping me through all of these feelings. Thank you cannot adequately express the warmth of the love and prayers that I feel from each and everyone of you!
UPDATE
.by Angel Crim Brabham on Wednesday, May 19, 2010 at 2:49pm.Aaaarrrrggghhhh, Ugghhhhh, Seriously???? This has to be impossible!!!!!!!!!!
When we left the hospital on May 6th I told everyone that our goal was to stay out of the hospital for more than a week. Well, we met that goal.....Yay!..........BUT after 12 days Zeta is back in the hospital AGAIN!!!!!
We've noticed that Zeta's breathing has become more labored over the past several days. I even called one of the nurse practioners on his cell Saturday night just to ask him to tell me that everything was going to be ok. Two hours later I called the NICU and talked to one of the doctors and asked him to tell me that everything was going to be ok. Zeta really labored with her breathing Sunday night. SHe was doing a lot of fast, shallow breathing and seemed to be doing a lot more choking, but her monitor was not going off so I kept telling myself that everything was ok. Yesterday morning she seemed to continue to struggle so sometime between 10 and 11 I decided to start counting her respirations. Immediately after I began counting she began choking then she vomited and turned blue. She probably only choked/vomited/turned blue for a couple of minutes or so but it seemed like an eternity!
Now, to show you how dumbfounded (or numb) I was at the time, I have to tell you about my reaction after she regained her color and stopped choking. As I was still freaking out I thought , "Hmmm I need to call the dr." Then I thought, "No, I don't want to call because that means we will have to stay in the hospital again." Now tell me - how warped is that? Had I seen a person on the street turn blue I would have been dialing 911.... had either of my other two children turned blue I would have already been in the car and not having this conversation with myself. Regardless, I did call and when they put me on hold to get the doctor I just hung up and Moma drove us to Augusta.....and so we're here again at our second home...the NICU!
I think it is Rascal Flatts that has a song that says something like "life is a novel with the end ripped out". Well if that's the case then I want to rewrite the first three chapters of Zeta's life. I know she needs to be in the hospital, but a huge part of me feels like I need to protect her from the poking and prodding, the lights, and noises, and the sticks and surgery. Fortunately, everyone here is very compassionate and they try to make things easier. The nurses take a lot of care in handling her!
Zeta has had a good day so far. She has only had one episode in which she was sick and her stats dropped a little. They just did another x-ray on her stomach and have stretched out her feedings even more. We'll be talking with the surgeon later today.
Please pray for God's hands on the doctors and nurses. Pray for our family as we continue on this journey, and finally, continue to pray for Zeta. Pray that God will continue to give her strength and determination for all that may be yet to come.
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Zeta Update
.by Angel Crim Brabham on Wednesday, June 23, 2010 at 9:07pm.Wow this has been an exciting week! We have officially been home for 17 days now - hooray!! Zeta seems to be doing so much better since we've been home this time.
We decided to go to Edisto with my family for Father's Day. On the way there I felt like a little black cloud was following us.....Zeta was sleeping so hard that she had several apnea episodes and her monitor was going crazy. When we got into Walterboro I told Stevie to stop by Wal-Mart (as they are the only ones that sell the new formula she is on - just regular preemie formula - no more of that mixing up 4 or 5 different things) Stevie bypassed Wal-Mart because he was on the phone and took me to Piggly Wiggly instead. Well, they didn't have the formula so we turned around and went back to Wal-Mart. By that time it was STORMING and I ran to the door only to find that the power was out so I couldn't get in to get the formula:-( ....... It was time for Zeta to eat so I connected the tubing to her mickey button (the port in her stomach by which she eats) and (not so) cheerfully poured all of her formula into her CARSEAT.........I had the doggone secondary port open and was unaware that instead of feeding my baby I was feeding the CARSEAT!!!!!!!! Sooo.....here is my baby with a soaking wet behind and an empty stomach and me with little to no reserve left in my repertoire. By this time I was so exasperated that I decided these were all little omens that were saying we should definitely go home!!!!!!! Instead we braved the unkown..lol...and continued on our journey. Her apnea spells continued and MY NERVES steadily dissolved!!! By the time we got to the beach the sun was out, Zeta was awake, and I was ready to crawl under a ROCK!!!!! That all quickly changed as I was finally able to enjoy some scenery other than my own home or the hospital. It has been almost 6 - count 'em SIX whole months since I have left the comforts (or confines) of my own home or Zeta's 'city home' (the hospital)!!! I don't see how hermits and thoughtful, isolated, intellectual thinkers live like that!
During this week Zeta seems to have also developed an aversion to a lot of her medicines. Her g-tube feedings have been going very well up until recently. We've had to slow down her feedings a lot - so now instead of taking 5-10 minutes to feed her we are taking 20-30, but she still has a lot of gagging and retching when the meds hit her stomach. So it's back to being up for about an hour at a time again at 12 and 3AM. Stevie is very willing to help when he is not working, but after I beat him for 10 minutes trying to get him to wake up I am fully awake soooo I just as well save my energy and get up and do it myself. Needless to say this lack of sleep is causing me a lot of irritability!!!!!! I feel like that woman off the exorcist!!!! Hey, you have to see the humor in all of this don't you??? The blessing in all of this is that Zeta is such a great baby! She has always slept through the night, and if for some reason she does wake up she is so content and can sooth herself that she is not crying! She really is a happy baby! With all she has dealt with in her short life I don't see how she is not the one with the head spinning:)
We went in for a NICU follow-up today and found out that we will go back to Peds. Surgery tomorrow for some more info on what to do about the feedings and the meds. Zeta has also developed some granulation tissue around the g-tube site and they'll have to do a simple in office procudere to alleviate that issue.
We have several more appointments next week - we'll decide on whether or not to patch her better eye, meet with a new ENT, go back to the developmental specialist, and talk with urology and nephrology. All of that - along with the speech, PT, and OT appointments that will be starting soon on a weekly basis. Most days I don't know whether I'm coming or going and then I stop and think - if it's this overwhelming for me... imagine - just imagine - how it must be for Zeta!!!! So I have to suck it up and keep my head on straight:) After all I DO have the most amazing friends and family who have given me more support than I could even ask for and we have been lifted up in more prayers than I can count and I'm sure many more that we are not even aware of.....that is what keeps me sane! To top it off, I have the two most loving little boys ever!!
Just wanted to give you a broad update and glimpse into our lives since we've been home. Overall I think things are going better - or like I told the doctor today - I KNOW they're going better because we haven't been back in the hospital again yet!!! Thank you for your continued thoughts, prayers, messages, and phone calls - and don't forget - just 'cause I may not answer that phone doesn't mean that I don't want to talk to you - I just want to sound like myself when I talk and not that lady with the spinning head :)
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update
.by Angel Crim Brabham on Sunday, August 1, 2010 at 12:49am.They started trying to wean some of the sedating drugs this morning and we finally started seeing a little movement late this evening. They were finally able to do a spinal tap this morning too and it was clear. THey were worried about the infection being in her brain because of all the seizures she was having so this is very promising. We also found out that the EEG done on Tues (the day before she ended up in the hospital) looked good. The neurologist said that this was encouraging because there is a 75% chance that she is not having infantile spasms because the EEG looked normal. They will go ahead and try some drug therapy to prevent the previous seizure type activity though. The seizures she started Wed. afternoon are probably related to the high fevers and infection. We are hoping we won't see any more seizures as she is waking up from all of the drugs.
The past few days seem more like years to me. All I can say is that I am thankful that I have God, good friends and family, and doctors that truly care about my baby. There are so many things that I would like to share and perhaps one day I will be able to, but right now the emotion is too raw. The doctors told us that Zeta has a big fight ahead of her, but she has made it this far so that is encouraging. She has been fighting all her life and she will continue.
I should tell you about some texts I had coming in when I was up crying at 1 in the morning the other night - "For I know the plans I have for you....." Jeremiah 29:11 I received two texts back to back from two very special people. I don't know if they had any idea that I was awake or what I was doing, but those words came at exactly the right time because I was feeling like things were so out of control again and I felt like I was slamming my head against a brick wall because there was nothing I could do.\A couple of hours later I was still up and looked here on facebook and guess what those two friends had posted on their pages? You guessed it - they were talking about God's plan. I asked one of these girls today if they had planned to do this. She said that they had been talking prior to the things that were written, but they had not discussed sending the texts to me - it just happened - or rather God used them to comfort me and remind me that there was something I could do - trust Him.
I am so encouraged and comforted when I read all of your messages and you remind me of all the prayers that are being said for Zeta, our family, and the doctors, nurses and staff. It is great reaffirmation of my faith when I feel weak. Much love and thanks to all of you for your prayers and support. The prayers ARE felt and heard. I would like to especially thank all of you that helped or participated in the golf tournament today. We've heard so many positive things about it. When I texted Mandy that they were talking about possibly doing a blood transfusion she texted me back and said there was a group ready to come give blood if we needed it. You know, the awesome things people are doing and are willing to do for us is very humbling. It truly demonstrates that there are so many wonderful people and that love and compassion can be greater than our biggest obstacle!
You allowing me to share my thoughts and feelings is therapeutic. It enables me to get my feelings out and to let others know just what a great God we have. Many times I need YOU to remind me that He is greater than any storm! I have no doubt that God is the ultimate healer, but honestly, I am human, and I do get discouraged and I let fear take control. I recently told someone that fear is a 4 letter word and it really is. I am at my worst when I let fear overcome me and I don't like to be in that place and I am thankful I have so many people to remind me of His greatness.
Psalm 91
1 He who dwells in the shelter of the Most High
will rest in the shadow of the Almighty. [a]
2 I will say [b] of the LORD, "He is my refuge and my fortress,
my God, in whom I trust."
3 Surely he will save you from the fowler's snare
and from the deadly pestilence.
4 He will cover you with his feathers,
and under his wings you will find refuge;
his faithfulness will be your shield and rampart.
5 You will not fear the terror of night,
nor the arrow that flies by day,
6 nor the pestilence that stalks in the darkness,
nor the plague that destroys at midday.
7 A thousand may fall at your side,
ten thousand at your right hand,
but it will not come near you.
8 You will only observe with your eyes
and see the punishment of the wicked.
9 If you make the Most High your dwelling—
even the LORD, who is my refuge-
10 then no harm will befall you,
no disaster will come near your tent.
11 For he will command his angels concerning you
to guard you in all your ways;
12 they will lift you up in their hands,
so that you will not strike your foot against a stone.
13 You will tread upon the lion and the cobra;
you will trample the great lion and the serpent.
14 "Because he loves me," says the LORD, "I will rescue him;
I will protect him, for he acknowledges my name.
15 He will call upon me, and I will answer him;
I will be with him in trouble,
I will deliver him and honor him.
16 With long life will I satisfy him
and show him my salvation."
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Super Exciting News
.by Angel Crim Brabham on Wednesday, August 4, 2010 at 2:52pm.Ok, so, you know many of you have told me how it was good to use our experiences as our own personal testimony? I just got off the phone with my dad and he shared a wonderful story with me. He said that a friend of his has told him that although he isn't really into church he would say a prayer for Zeta each night. This past Sunday( after Zeta became so ill in Wednesday) he decided to go to church for Zeta. When he got to church he noticed she was on the prayer list, but they also said a special prayer for her. When Daddy called him Monday to tell him that Zeta was off the venitlator and doing better his friend told him, "I think that prayer must really work!" Daddy's friend is a very good man just not what you would call very religious I guess, but I'm thinking maybe God is using Zeta to talk to his heart. Isn't that just awesome!
We moved out of the NICU to a regular floor around lunch time. I know that prayer works!
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Did I say something about a plan???
.by Angel Crim Brabham on Thursday, September 16, 2010 at 12:09am.Yep. I sure did...I went back and looked at the last status I posted before Zeta went back in the hospital and it specifically says that we had some "PLANS" falling into place...I think I forgot again that WE aren't the ones that make the plans...lol.
Well at least I have two positive things to say about our most recent hospital stay this go round
1. This has was Zeta's shortest hospital stay ever - just 4 days- woohoo!!!
2. We finally accepted the fact that Zeta is no longer a member of the NICU crew -and it wasn't so bad- (although we still missed everyone tremendously!!!)
Anyway back to our plans. Prior to this last hospitalization we planned to go ahead with a kidney procedure at Emory on September 20. I don't know, maybe Zeta got nervous about going to a different hospital or something? She started running a fever with seizures on Saturday. Her initial lab work showed a possible uti so we assumed this was going to be another kidney infection, but the rest of the cultures came back negative.....soooo by the time we were discharged we still didn't have a clear idea of exactly where the fever was stemming from, but Zeta was doing much better. At first I was frustrated that we really had no idea why the fever started. Then I was thankful that she was doing better. Next I worried that she would be this sick with every little illness - as she had a very minor runny nose for 3 days prior to this and she could have "possibly had a little respiratory thing going on". Finally I thought just maybe our prayers were heard and we averted another stay like the last. You see she started off with fever and not a whole lot else but after she was admitted she quickly went downhill. It was starting to feel like an instant replay of her last stay, but then within 3 hours she was making a pretty big turn aroundr. How do you explain that?
We are so very happy to be home again!
Now back to the plans.......Our plans have changed again somewhat and you could say we have surely learned to expect the unexpected. I think maybe that is still part of His greater plan. Just when I think I have it figured out and I think that our faith could not be challenged anymore and I feel like I have reached my ulltimate potential in personal growth- He shows me again how precious life is and how blessed we are to have our children and each other each day and how blessed we are by the many people who pray for us every day. We've had the opportunity to build and strenghten ties to family and friends new and old. I think about how much I have learned from my sweet baby girl and all those who have reached out to us. I think about all the experiences I never would have experienced and all the people I would have never interacted with had she not been given to us. Does that mean that I don't wish she didn't have all the health issues? Does that mean that I don't ever question why she has to go through this? No, I do find those questions creeping in -some days more than others- but that is when I have to rely on faith more than any other time. Sometimes when we are at the doctors' I see little girls with pig tails running around and I can't stop myself from tearing up because I wonder if my little girl will ever be the little girl with pigtails and running around. (Don't ask me why about the pigtails but it jst hits me). Those are the times I know that I am never alone. I look at Zeta and that sweet sweet smile and I see the miracuolous work of God and I know that He will not leave nor forsake me! (and then I cry some more - can you see wehere my emotions are right now???? :)
Obviously I have digressed....the plans....we've rescheduled the kidney procedure, but that puts us waiting about another month to make sure there is no infection so as not to cause more problems. I'm asking lots of prayers for my baby to stay well so we can get to this next step and hopefully prevent more of everything she's been through.
Again, I cannot adequately express what we feel each and every day as the prayers go up and the kindness pours into our hearts....Thank you!!!
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where we started and where we are now....
.by Angel Crim Brabham on Monday, September 27, 2010 at 2:51pm
We have a routine at our house. I am in charge of the children and Stevie is in charge of everything else. Not really, but I'm sure you probably understand what I'm talking about. Stevie is really great about trying to do things for Zeta (well when I let him anyway). So, his job with Zeta entails giving her 9 pm and 6 am feedings. Letting him take care of the 6 am feedings and getting the boys up lets me get a few more minutes of sleep before getting up to check that the boys clothes at least match and see that my dad picks them up for schooll.
On Friday morning I was jolted awake by Stevie's voice. Really I wasn't fully asleep (Zeta is in a play pen right by my side of the bed) but I was pretty relaxed. The way Stevie nervously callled out my name I knew something was wrong. "She has fever" he said as he held the thermometer under her arm. Just a little over a hundred."
"Ok" I said more to myself than to him. "Take the blanket off. She's been having some trouble regulating her temp - hot or cold- the past couple of days." But I knew this was a true fever. When she gets overheated her temp never goes past 99.5. While he uncovered her I began dialing her pediatrician to let them know we were on the way to Augusta. The rest, as they say, is history.
She began (what we've almost accepted as being typical for her) the episodes - seizures, elevating temperature, and difficulty breathing. By the time we got to Augusta she was settling down and I was thinking (hoping) that this illness would be as easy as the last one just 10 days prior. Her pediatrician began making arrangements for us to be admitted to a room at the hospital. In the mean time we had to go to the ER for fluids and a urine cath. While we were there she had a few more "episodes" and quickly began going down hill. For a while it was like deja vue from the time when she got sooo sick before. Instead of a regular room we got a pass to the PICU. However, by the time she was stable enough to be moved up it was like she was completely back to normal. The staff in the ER even commented that the PICU staff were going to think they were crazy for having her admitted there instead of the floor.
I'm pretty sure they were questioning why we were in the PICU because she was acting pretty normal, her temp had stabalized and she wasn't seizing. She was still having a little trouble breathing, but nothing a low flow of oxygen wasn't handling, but that all quickly changed again when she had another "episode". Initial results from blood and urine cultures were showing another possible uti. All day Saturday went pretty much like Friday. We got to the point that she had been so long without an episode that we had our things packed and out in the hall waiting to be moved to a regular room when she had another episode. That bought us another night in the PICU.
After this episode I had to search myself and God for peace, trust, and understanding. I have to be able to trust those that care for her. By far I can say that this is usually not a problem, but during this episode there was a resident and nurse that were not familiar with Zeta's episodes and I'm sure they were just following typical procedure for typical seizures. I could not make them understand or listen to all I was trying to tell them. I was watching and explaining step by step what was happening - and what would happen if we did not get it under control soon. In their defense, I'm sure they had to follow some type of protocol with observation before they could do anything but I really feel some of it could have been averted had they been more familiar with her history and what previous drs and nurses had been doing to assure things did not get out of control. (I think I may need to pray a little more about this bitterness!!)
Right now we are in a regular room. She is stable. She hasn't had any episodes since Saturday night. We've been told that she may be experienceing thalamic storms versus seizures. Picture the electrical system in your car going haywire- windshield wipers going, radio turning on and off, windows going up and down all at the same time. It could be that her brain is telling her body to do all kinds of things and it causes her body to go haywire. We've found out that her urine culture is growing some type of bacteria -probably the same bacteria that caused the nearly fatal sickness the end of July. The great things are that her episodes seem contained and aside from the excessive sleeping she is acting a little more like herself. We're assuming the infection is getting under control.
I've prayed for Dr. Laffitte's family this week. He was definitely one of the doctors that cared. He cared for me from the time I was born until the time he retired. He was an instrumental player in God's plan for so many people. I cannot count the times I';ve heard people say, "We need more doctors like Dr. Laffitte." I picture him in Heaven (with that booming voice and smiling face) shaking hands and hugging everybody there. I know this poses little comfort to his family right now, but I know that Faith and the knowledge that He is always with them can - in time- help soothe their souls.
I feel as though I've rambled all over the place with this update but I would like to share a couple of things that have brought a smile (and a tear) to my face this week:
As my mom was picking up the boys from school earlier this week:
Chancelor: "Nan, I had a nightmare last night."
Nan: You did? What did you dream?"
Chancelor: "I dreamed I was stuck in a room with no windows and no doors and there were math problems everywhere!"
Stevie called to talk to the boys Saturday and this is what he heard:
Steven: "Daddy, I'm going to ask Santa Claus for a new 4 wheeler this year because mine keeps breaking down and it really is too little for me now but I know Santa Claus probably can't get me a new one this year so I think I'll just ask him for some parts so I can fix it."
Stevie: speechless
Steven really does have a more caring and understanding heart than we can give a 9 year old credit for....
Thank you for continuously praying and ministering to our family. Thank you for continuing to pray for Zeta's physical, medical, and cognitive strength and development. Thank you for continuing to pray for the stamina for our family to continue living apart and in emotional distress so often. Thank you for your continued kindness....where 2 or more are gathered in his name........
“Character cannot be developed in ease and quiet. Only through experiences of trial and suffering can the soul be strengthened, vision cleared, ambition inspired and success achieved.” Helen Keller
new update
.by Angel Crim Brabham on Friday, October 8, 2010 at 3:29pm.Wow! This has been Zeta's easiest procedure ever! The surgeon found some minor airway issues that weren't seen before and they put tubes in her ears. He also told us that she has some hearing loss and we will probably need to think about hearing aids (but we'll work on that more once we get the kidney procedure done that's coming up soon). We're just very happy that all has worked out well today and hopefully they will release her in the morning. She is such a tough little thing.....after she woke up from anesthesia she pulled out her IV and just kept laughing like she knew exactly what she had done! We are so very blessed!
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update
.by Angel Crim Brabham on Wednesday, October 27, 2010 at 4:41am.I went to bed last night saying to myself, "I want to do this, I feel like I have to do this, but I'm scared to death I can't do it anymore." I woke up this morning thinking, " I want to do this, but I think I'm going to fall apart". I know......this isn't about me. I have the easy job....... All I have to do is love her..........Zeta has the hard job. She has to overcome all that has been given to her. My boys have the hard job....... They have to give up their life and move from one set of grandparents to another and never know when Mommy and Zeta might be gone by the time they get home from school. I have the easy job........ All I have to do is love them and assure them that all of this turmoil doesn't change my love for them........ I have no choice but to keep it together.
This morning I checked my email and was drawn to two verses in an email from Mandy. God was definitely using her to speak to me. In her message she quoted James 1:2-4 "Consider it pure joy, my brothers, because whenever you face trials of many kinds, because you know that the testing of your faith develops perserverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything." and Romans 8:28 "God will work good out of the bad." Now, I can't say that I consider any of what we have been through to be 'pure joy'. However, I can say that I truly realize part of what is supposed to come out of this. My faith has continually been tested and strengthened and I have been able to share that with other people. If I were not going through this experience I can honestly say that I would probably not be as vocal about trusting God. Sure, I'm a Christian....I was saved at a young age and reaffirmed that decision throughout my life. I've never hidden my faith, but I haven't always broadcasted so loudly it either.
Please continue to pray for Zeta and for our family. I know that I continually ask for prayers, but I know that prayer works and I often feel it is the only thing that I or anyone else can do. Zeta has another long fight ahead of her and is dealing with a multitude of issues during this admission. Her bowels have basically shut down, she is experiencing repeated 'episodes' that are causing a significant amount of breathing issues. She remained blue for over an hour and a half during one of her episodes earlier. I've actually lost count of how many episodes she's dealt with today. She just had yet another episode around 2:30, but seems to finally be resting. They have a heliox mask on her in hopes of avoiding intubation, but she has continued to labor with her breathing. On top of all this she has developed a pretty significant kidney infection.
Please pray for the doctors and pray for their hand in trying to untangle the complex issues that Zeta has presented. Pray that we and they make the right decisions in Zeta's care.
I am especially thankful for Sandi, the respiratory therapist, and her part in ensuring appropriate care for Zeta today. I am thankful for the members of the staff - those that are very familiar with Zeta- and their open concern for her. I am thankful that I have such wonderful, supportive parents who never give a moment's hesitation to anything I ask. I am thankful for the numerous prayers, the outpouring of love, and the constant reaffirmation of faith that I receive from the many people who care for our family. I am thankful that we were given another day!
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A Better Update
.by Angel Crim Brabham on Wednesday, October 27, 2010 at 11:28pm.Amazing...nothing less than amazing!!! In the last few hours Zeta's condition is starting to make a huge improvement. She had a pretty rotten day with some more episodes and blue spells - doctors at her bedside most of the day and tests galore. We had already been told that she would most likely be intubated by the end of the day if her respiratory status did not improve and her hemoglobin has steadily dropped over the past couple of days.
Well, we all know Zeta - she is going to do the opposite of what you expect. She seems a hundred times better in our eyes, but of course still has a pretty long way to go. The last urine studies showed NO infection in the kidney NONE- a completely different result from the initial analysis!! They've started another culture just to be sure because it was just too hard to believe that the culture grew NOTHING. She has developed some pretty significant pneumonia though. She did wake up for about an hour tonight and was trying her best to smile. Her cough is really bad and she gets choked easily. Her breathing is still somewhat labored, BUT she is stable!!! God answers prayers!!!
We have so much further to go, but seeing this improvement today has truly eased some of our worry. There are still a lot of answers to be uncovered and we may not even ever find all the answers, but the doctors, nurses, and staff worked diligently today to try to figure out what would work for Zeta and how to stabilize her. They also worked all day to try to uncover our sweet little mystery. Hopefully, piece by piece, they will be able to figure her out!
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One step forward......fifty steps back
.by Angel Crim Brabham on Friday, October 29, 2010 at 2:18am.The past 23 hours have not gone as I would have hoped or expected. Zeta's breathing became more and more labored again around 3 am. At 2 pm she was put on the ventilator. Initially, I was relieved because we had watched her work so hard for the past 3 days and she was finally completely resting, but as the day wore on the impact of what was happening took its toll on me. We have also been working on trying to get her to MUSC to her ENT, but she has not been stable long enough to do so. Now that she is intubated we are hoping she will be transferred tomorrow (today, whatever?). The need for a tracheostomy is being explored once again. On one hand, I really want to hurry up and get it done. This is the second time she has experienced respiratory failure since August. We have watched her struggle on and off for almost 8 months. On the other hand....no one wants that for their child. I just try to remind myself that we have been praying about this for a long time and I have to trust that God will give us peace with our decision.
It's strange how we become so accustomed to things that we 'just do what we have to do'. When the trach recommendation was made Stevie was immediately disturbed. I, on the other hand, said "It's just another piece of equipment that we'll have to take for her. It's not a big deal, and it will help her breathe." Well that was easy to say at that moment, but let me tell you even though I've prayed about it for so long I still second guess my feelings about it and wonder how I could be so willing to accept it. At this point, I am willing to do whatever it takes to protect my baby's lungs, heart, kidney, etc. etc. Her airway is so complex that it was said at one point that the Children's Hospital in Cinncinatti may ultimately be the best place for her. We told them that we were willing to go wherever need be, but then we were told that we really just needed to figure out for sure what was causing everything before they start sending us all around the country. I don't want to continue to start from scratch again and again or have my baby become some type of permanent lab rat.
If you do nothing else today I want you to just stop for a moment and thank God for the breaths you took today. If you have children praise Him for every hair on their head and never take for granted the smiles they give you and the tears that they cry. Life is a precious, precious gift.
Today has been quite an emotional rollercoaster. The amazing thing is that Stevie and I have hiit our breaking points at different times so one would amazingly be able to hold it together while the other one fell apart. I know that has to be God's work because if we both fell apart at the same time we would be utterly useless.
There is no way to explain this type of emotion to you. I know that I have several fb friends that have been in similar situations, and I have always thought I was a pretty empathetic person, but you cannot possibly make someone else understand the heartache, the ups and downs, and the utter joy you experience over the tiniest things - like me being so happy to see her relaxed once they put her on the ventilator. In the real world no one wants to see their child on a ventilator, but after you have watched your child struggle and struggle and not even be able to stay awake due to the energy it takes just to breathe then yeah seeing her at peace -even if through the assistance of a ventilator- makes it all ok even if just for a little while becasue I know she is not struggling.
I heard Stevie telling her over and over today, "I wish I could just take all of this away and put it on me." That's what we all want for our children. We don't want them to experience pain.
I have found comfort in the posts, messages, texts, and voicemails we've received. I'm comforted because I know that we have so much support. I'm comforted because I know there are so many people praising Him and lifting us up to Him. I am comforted because I know that although we have setbacks and that God's plan is not always my plan I still know that He is God and that one day we will all have comfort and peace. That is promised.
Today, my cousin Jennifer shared with me Romans 15:13 “"Now may the God of hope fill you with all joy and peace in believing, that you may abound in hope by the power of the Holy Spirit." HOPE and PEACE
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update
.by Angel Crim Brabham on Sunday, October 31, 2010 at 12:59pm. The past two weeks have been exhausting! We finally had to leave the hospital last night and take a break. It was hard to leave Zeta, but I think now we are more prepared to deal with the issues at hand and are minds are clearer and more receptive to what the doctors have to say. Many people have continuously told me to leave - that it would help, but I couldn't. It wasn't until Zeta's surgeon (whom we've developed a great relationship with) told me yesterday that I had to leave - that I had to just leave it and trust God and the doctors here to take care of her - that I had to get myself together so I could be there, really be there for Zeta. He is not even 'technically' on Zeta's service right now, but he comes to check on her and us and act as our sounding board. He has been such a blessing to us on many occasions.
Zeta's diagnoses seem to change just a little every day. Her seizure episodes are finally being managed and she hasn't had any episodes in a couple of days. We have gone from pneumonia to no pneumonia to full pneumonia in both lungs to possible collapsed lungs. Her last urine culture is growing something again - which seems almost unfathomable with all the antibiotics she has been getting. The major issue continues to be her breathing. She is still on the ventilator. They said she most likely will be for some time, but she is comfortable. We tried letting her wake up some over the past few days, but then she started getting more and more agitated and trying to move around so they have had to fully sedate her. I know the next 2 or 3 weeks or going to get pretty rough. We won't be able to hold her and she will just lie there. We won't get to see her curious, dancing eyes or her sweet smile, but I know God will carry us.
She had a blood transfusion yesterday and she almost immediately began looking better. They have been unsuccessful in getting a PICC line placed to continue infusing medications and fluids. They have tried for a few hours at a time over the last few days. Thankfully her two iv's are holding up for now, but we are looking at the possibility of have a central line placed (which entails a trip to the operating room).
She is stable. She looks comfortable and peaceful, but I sure wish I had better news to share. I suppose I could share that our minds are in a better place and that I can actually have a conversation with a doctor now without breaking down into tears. You know, I know there is a reason for this, but it doesn't make it easier. You don't want your children to hurt. I have to hold on to the knowledge that He will carry us through this.
Pray for healing. Pray for peace. Pray for us to be receptive. Pray for us to take care of ourselves. Pray for our boys. Pray for our parents and grandparents. Pray for yourself and your family. Praise Him - even when things are at their worst - that is when you need him most. Pray for others receive Him. I know I could not handle this without the Rock of my Salvation. I am not perfect. I am a sinner. I do many things that are not great in His sight, but yet He loves me. He sees me through every day. Without the power of knowing this I would have fallen apart a very long time ago.
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hmmm....
.by Angel Crim Brabham on Monday, November 8, 2010 at 5:17pm.Lots of days I'm vain enough to think I can handle all of this. I think about my background with special needs children, my 'dipolomatic' counseling skills, and the patience God has blessed me with (or at least I always thought that was one of my spiritual gifts....but these days I really question it and wonder if I'm not that woman with the spinning head again).... Then there are days- like the ones that seem to be neverending lately- that I come to the stark realization that maybe I'm not as prepared for this as I keep trying to tell myself.....but then I also realize I have the support of so many people who keep lifting me up and encouraging me and reminding that although I am weary and weak God is not.....and I trust in that...
Zeta had a couple of 'episodes' last night and today. She even managed to turn a dusky blue while on the ventilator during one of her episodes today. This was really pretty scary considering that they told us earlier they were concerned that her breathing problems may be lower down than what the vent or a trach could help. Hopefully, there will be no more episodes. She spiked a fever too so now we are waiting for results of more blood and urine cultures because we never know if the fever is part of the episode or if there is actually an infection somewhere.
I've been thinking a lot lately that I would really like a magic wand, but I was reminded (yet again) after my last post that I do, in fact, have something better than a magic wand - God. I cannot stress enough how faith is the absolute only thing that keeps us going some days. I also got a text from Trina that reminded me that this is all in God's hands and His time. I have to rely on His plan -plans for a hope and a future - and know that none of this will last forever!
I feel so self-absorbed. I stood back and looked at my boys the other day when they were here and I realized that I have only seen bits and pieces of them growing up this year. All of a sudden they looked so grown to me. I mourn the loss of this year. I mourn the loss of the 'typical' baby sister they wanted, and I think I am finally grieving because I realize I mourn the loss of a healthy child....I think this is something I have refused to do because I did not want to be the angry parent questioning God. I mourn the loss of 'normal' conversations with friends. The only thing I have to talk about are doctors and hospitals. I mourn just being together as a family. I am sure my grief pales in comparison to the loss God experienced when Jesus was sent to die on the cross-the pain, the agony, the mockery-but it is my grief none the less.
My fear is true, my guilt is real, but I cannot -will not- let it overcome me!
(Praise you in the Storm by Casting Crowns explains some of my emotions today - well lots of days really...... if you don't know it then check it out at playlist.com There's another - I think it is called Never Alone - with an awesome female vocalist, but I don't know who sings it. Someone gave me a CD with it recorded. If you know which song I'm talking about let me know.)
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more prayers
.by Angel Crim Brabham on Saturday, November 13, 2010 at 5:05pm.Prayers needed for Zeta and for us. Her kidney infection is clearing but she has something new going on that they can't pinpoint it's almost like one of her 'episodes' except she isn't showing outward signs of seizing. She required another blood transfusion this morning and had trouble breathing even while on the ventilator so they now have her fully sedated and paralyzed and her blood pressure has sky rocketed. The doctors and nurses have been such a blessing to her and to us. Several nurses have continually been by her bedside and both the resident and attending doctor have gone to great measures trying to sort everything out. We feel comfortable in knowing they are working diligently to keep Zeta comfortable and also find a reasonable explanation and solution to her current issues.
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update
.by Angel Crim Brabham on Sunday, November 14, 2010 at 10:35am.Zeta seems much more comfortable today. They still have her sedated and paralyzed to help with her breathing. They hope to change the trach tube out tomorrow which may also help with breathing. She continues to struggle with less than ideal urine output. They are still working to figure out what has caused her decline or if it may just be some lingering effects from her whole ordeal this month She has had several blood, urine, and brain studies done that all look good so that is very promising. They have sent off some viral studies to see if they can pinpoint what or if she has picked up some type of virus. We are thankful that she is resting comfortably and being monitored very closely. We are very blessed that she is receiving such wonderful care!
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tough cookie
.by Angel Crim Brabham on Wednesday, November 17, 2010 at 9:56am.Wow! Wow! Wow! That's what the doctors ,nurses , and I all say! Zeta had 2 different types of bacteria growing in her urine, 3 totally different ones in her respiratory tract - one of which is so rare and resistant to treatment that it is the first time they've EVER had it in this hospital- and a virus to boot. We have only God (and His work through all those involved in her care) to thank for the miraculous improvements she is making! Wow! Wow! Wow!
They've weaned the vent and have just put her on c-pap trials so she is actually doing her own breathing now! Wow!
Zeta is on isolation (go figure- lol ) and we've moved to our own very ' private ' room in the picu. Hey, it has a fantastic view of the city and the water so that really offsets the fact that we have to wear these plastic suits and gloves:)
They've decreased her seizure meds and will put her on continuos monitoring to find out more about her seizure activity.
We are working toward getting her strong enough to do and something for the kidneys. we still have quite a way to go before we get to that point. just things we're discussing for now.
But all I can say for now is WOW!
Wow! We are so very blessed! I know I'm really gonna think twice about complaining the next time I have a headache - that seems miniscule after what Zeta has been dealing with! Just look our little fighter!!!!
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Tell me about your baby
.by Angel Crim Brabham on Monday, November 22, 2010 at 10:14pm.
Disclaimer: I wrote the first part of this note in the midst of some emotional turmoil.....but I'm doing much better now...lol...
What's wrong with your baby? That is a question you hear a lot in the waiting room here.....I've come to believe that may be part of why I tend to try to avoid the waiting rooms or eye contact with anyone there. I never ask anyone that question. It makes my stomach churn when I think of the list of things that I would have to recite to honestly answer this question. No one really wants to take the time to hear all the health issues that are wrong with my baby. Most people want a quick answer or a diagnostic term, but when I say CHARGE syndrome then I have to explain what it is then I have to give some simplified explanation of why she is in the hospital this time.
I smile and nod and offer condolensces when parents tell me about the 2 or 3 long weeks they've been here and the fact that their baby finally got off oxygen or is now able to drink the required amount of formula and they are so happy to finally be going home. I listen to how some people drive 30 minutes from home everyday to come spend the afternoon in the hospital with their baby. Sometimes I listen with a genuine feeling that I can relate to these other families. Sometimes I listen with a forced and plastered look of concern on my face because what I really feel like screaming is, "PLEASE!!!! You think you have it rough??? Try watching your sweet, sweet baby become a human lab rat. Try not knowing what is even wrong with your baby or how to help her. Try spending the better part of almost 9 months in the hospital sleeping on hospital sofas, any and every kind of hotel, the RMH with community bathrooms, and crashing in on others who have taken a genuine concern in your plight. Then you can tell me how rough it is!! Try being apart from your family and not being able to drive home at night because you're scared of what would happen if you left. Try having a child that has so many problems that you feel like some doctors quit looking at the big picture (or maybe just give up) (or contrary to popular belief - do not know everything) which just means you get admitted for a week, home for a week, admitted and home again- sometimes without any real answers. Then you can tell me how hard you have it! Try finding out that your child has a (most likely) benign tumor in her brain (which is great because at least it is probably not cancerous) but the odds of anyone having this thing is 1 in 200,000 - do you think that makes her feel special??? The bad part is that it is located in a place that causes your child's body to go haywire and it is hard for the doctors to tell what is going on. Try giving yourself a pep talk every morning just to make it through the day. Try detaching yourself from being your child's mom just so you can learn all of the stuff they are teaching you so you can hurry up and get home even if it is just for a little while. There is no way you can think about - really think about -what your child is going through and all the new 'labels' your child has without breaking down. So a lot of times I feel like I am on the outside looking at someone else live this life. That's my defense mechanism. That's how I have to deal with it.
Whew...........
Now that I've got that all out of my system I can't say that is honestly how I always deal with it. More times than not I rely on my faith. I give it to God, but today - today - I'm having one of those psycho-mom moments.
On the other hand, I think about the two families that lost their babies. I think about the single mom that has a 7 year old with spina bifida and now a 3 month old with numerous health issues. I think, 'It could be worse" and then I feel guilty for feeling so sorry for my family, for myself. No matter how bad you think you have it someone else always has it worse.
I am thrilled - beyond words - amazed at how Zeta has overcome her most recent issues! I am grateful for the blessings we have received. There should NOT be a 'but', BUT there is..... today we were given the results of her MRI - "tuber cinerum hamartoma" or hypothalamus hamartoma. In a nutshell, she seems to have a benign growth sitting just below her hypothalamus. I don't know a whole lot about it yet, just what I've learned from the internet - which as you know- is not always the best place to garner information. The neurologists haven't told us much about it yet except that they are going to need more detailed imaging of that area to make a concrete diagnosis and that it is extremely rare. So yes, I'm having a spinning head type of day and yes, my emotions are still a little out of control. The sadness hasn't hit me yet. That will come.....kind of like post-traumatic stress disorder......once I'm done taking in all of the information and my head is through spinning then it will hit me and I'll fall apart. Just like right after we go home from every hospital admission. I get home and the reality of what she has just been through suddenly hits me. Right now, I have to focus on understanding this new bit of information and also focus on hopefully getting Zeta home soon. That is my job for now. Right now, I have to enjoy the thought of our family all being together again and work toward making sure it all goes as smooth as possible. Right now, I'm keeping it together.
The doctors and I discussed the need for the kidney surgery and we all agree that she needs it (like yesterday) but that we don't feel she is ready for a big surgery after all she has been through the past 3 months. We are hoping to do the open surgery. They will remove the bad kidney and work on the better kidney all at one time. Although this is a much bigger procedure than the deflux (that we've rescheduled 4 times) we hope it will be the best option in preventing future infections. We ultimately want to try to make it through Christmas without being in the hospital, but if she has to be admitted in the mean time then we will probably just stay as long as needed and have the surgery done then - if not then we hope to do it after Christmas.
I've stared at Zeta all day and have been in utter awe at how far she has come this past week. She is still not totally back to her old self, but she has made such tremendous improvement that it amazes me at how strong our little girl really is. I think about Steven and Chancelor and the excitement in their faces when they first got here Friday and how sweet they are to their little sister. I think about how Steven continually asks when we're coming home, and I think about the thought provoking questions Chancelor posed about Santa Claus and God on Friday night. I realize there is life outside of the hospital and a lot of things that I'm missing, but I also realize how loving and understanding my boys really are and it seems as though sometimes they are handling things better than we are. i realize that we have so many wonderful people looking out for our boys and praying for guidance for us and for the wonderful, caring people involved in Zeta's care. I realize that, although we may often lose sight, God is carrying us.
I think I tend to write a lot more when I'm having the psycho-mom moments. It gives me an outlet. A constructive way to let go of these feelings. It allows me to share the roller coaster of emotions that not only I, but other parents of chronically ill children deal with on a daily basis (or that's what I believe anyway).
I think it encourages me to know that there is a whole cheering section for "Team Zeta". It encourages me to know that so many people are curious about her story. I know there are many different reasons for why people may be curious, but it is my hope that I can increase awareness not only about her health issues, but more importantly about the power of our God, the power of faith, hope, and prayer, and the understanding that it is okay- no, really necessary - to let go of our own plans and follow His plan.
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why
.by Angel Crim Brabham on Wednesday, November 24, 2010 at 8:06am.Rough night. Zeta is back on the ventilator. ....... asking 'why'???? .......Basically pretty disappointed and asking God for answers....just opened my online daily devotion.......
How can I not believe He is listening.....
November 24
God Is Good
He knows the way that I take; when he has tested me, I will come forth as gold (Job 23:10).
Scripture: Job 23:8-13
Song: "Create in Me a Clean Heart"
The conference speaker shouted out several times, "God is good," and the crowd responded, "All the time!" In today's verse, Job proclaims that God is good and would do good by him: "I will come forth as gold."
When I was 29, a lump appeared on my neck. Because of its rapid growth, I was checked into a hospital and subjected to a barrage of tests. The lump was doubling in size every few days, and I honestly didn't know if I would live or die.
On that hospital bed I was angry and depressed but finally decided that, whether I lived or died, God could be trusted and would do good by me. Two weeks later, doctors removed a large nonmalignant tumor from my neck. I eventually experienced a complete recovery.
God is our good shepherd, even if our health or finances are failing, or whether we have lost a job or even a house. I hope that we can come to say with Job: God is trustworthy and good, and we will come forth as gold.
Almighty and gracious Father, You know the end from the beginning and everything that concerns my life. You are the good shepherd who can be trusted, no matter what the outward circumstances look like. Help me to believe that all things will work together for good in the lives of those who love You. In the name of Jesus, amen.
This devotion is from the book, 365 Devotions, brought to you by Standard Publishing. Buy 365 Devotions and other great resources at http://www.facebook.com/l.php?u=http%3A%2F%2Fwww.standardpub.com%2F&h=11562.
Sent from my iPod
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update
.by Angel Crim Brabham on Monday, November 29, 2010 at 8:55pm.Zeta is doing better. We finally seem to have all of the infection under control. The seizure/tumor issues are still a work in progress, and we have to play the waiting game again for kidney surgery. Its just hard trying to figure out how she will ever stay well enough to actually have anything done with her kidneys. I'm very thankful for everyone here who is working so hard to help us figure out the answers and how caring and kind they have been to us.
In the midst of everything going on - especially Friday night after grandaddy died - I find it easy to question, "What else could possibly go wrong?", but I realize that my grandaddy was a good man and he lived a very rich life. We were blessed to have him as long as we did, and I know that he followed the plan that God had for him.
Thank you for your continued prayers for our family.
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thank you
.by Angel Crim Brabham on Saturday, December 4, 2010 at 2:44pm.I like HAPPY tears better than SAD tears, and right now I am COMPLETELY overwhelmed for all that everyone around us continues to do for us. I never would have dreamed that we would be living this life, and I never would have known that so many people care about us and are supporting the fight for Zeta! Please know that even if we are not able to thank each one of you individually we are truly humbled....
We have been home since Tuesday, and although it has been another big transition for us, it is such a great feeling to be home again! Thank you so much for your continued prayers and support!!!
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Life is....
.by Angel Crim Brabham on Friday, December 17, 2010 at 12:56pm. "Life is not a race - but indeed a journey. Be Honest. Work Hard. Be Choosy. Say "thank you", and "great job" to someone each day. Go to church, take time for prayer. The Lord giveth and the Lord taketh. Let your handshake mean more than pen and paper. Love your life and what you've been given, it is not accidental ~ search for your purpose and do it as best you can. Dreaming does matter. It allows you to become that which you inspire to be. Laugh often. Appreciate the little things in life and enjoy them. Some of the best things really are free. Do not worry, less wrinkles are more becoming. Forgive, it frees the soul. ~Take time for yourself~ Plan for longevity. Recognize the special people you've been blessed to know. Live for today, enjoy the moment.
Bonnie Mohr
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update
.by Angel Crim Brabham on Wednesday, December 22, 2010 at 4:44pm. Lots of tests, lots of blood, tons of information......
Zeta won't quit pulling her IVs out!! We've been very lucky they've been successful getting IVs and that we haven't had to go for a central line again! Unfortunately, Zeta manages to find a way to pull out her IV regardless of where it is located or how well they have it secured so she is still getting stuck a lot! I think she is on the 4th IV since we've been here!
A lot of things are coming together now and making sense for us. The seizure/tumor issues are still a work in progress, but they have been able to gather more information on her brain activity and hopefully we will continue to move in the direction of a realistic and workable solution.
Zeta saw a pulmonologist for the first time yesterday. There has always been a debate on whether or not she should see a pulmonologist. I am so glad she finally did! They did a CT scan of her chest and also found that she has some type of lung disease called eosinophilic pneumonia. They are assuming it is an acute versus chronic case that (according to previous lab results) probably started during her last hospitalization. She will be on steroids for a few weeks to several months. They also found that along with the collapsing of her bronchi (the branch between the trachea and lungs) that the left bronchi is substantially narrow. This puts a definitive answer on why she has the 'blue spells'. Her left lung is usually healthy, but her right lung is 'sick' a lot. Normally, the left lung would compensate when the right lung is sick, but in Zeta's case when the right lung is sick the bronchi to the left lung is already impaired and when it completely closes she can't breathe efficiently. This is another explanation as to why she has such difficulty breathing - espcially when she has continued in the past to have occasional difficulty while on the venitlator. The bad news is that this puts us back to the potentially "nothing can be done for her airway" - unless we go flying around the country. The good news is that hopefully as she grows her airway grows and lessens the potential for the passageway to the left lung to completely close and also since we know exactly what is causing some of the blue spells (even with the trach) we can be diligent about aggressive;y treating her. I will have to say though that the trach has been a blessing too - Overall, she does not work nearly as hard to breathe - except when she is sick ( even then it doesn't seem as bad as before)!
Zeta seems to be doing very well. She has some minor spells every now and then, but overall she seems to be doing great! I hope that she continues to do well! A few days ago we were planning on getting home soon, but lately things have been kind of up in the air. Today, with more clear-cut answers, there seems to be a more optimistic hope in the air that Zeta will be well enough to get home by Christmas! They really just want her oxygen requirement back to at least what it was before we came in, and the pulmonologist is hopeful that the steroids will help.
It would be quite easy to become overwhelmed (trust me we often do) with all the information we've been given, and sometimes doctors/nurses look at us with such - I don't want to say pity- maybe sorrow, apology in their eyes? Often times I think they take a pause just to wait and give me a moment to break down if I need to, but I know they have to take a cue from how I handle things. If I don't have hope for my child, who will? If I don't show that it's worth continuing to work for answers, who will? ( I think it helps that the doctors and nurses seem to fall in love with Zeta and her sweet personality and her little cute self too!!) I am so very grateful, that we have been blessed to almost always have optimistic doctors! BUTnothing about Zeta has ever been simple. She has all these "things" that have such rare odds like 1 in thousands and 1 in a million. (Her eye doctor told me the other week that the surgery they are going to do to for her tear ducts works for 80% of kids and then reminded me that Zeta is not an 80% type kid lol - so he said, "be prepared for additional surgery"). and - All of the organs that we have two of (eyes, lungs, kidneys) - she only has one that works - if at all - and the other one tends to not work well at times. To put things in perspective for you:
Even before birth, Zeta beat the odds by being conceived. She beat the odds by weighing a full pound more than expected and enduring the time immediately after delivery a thousand percent better than expected. She was initially diagnosed with CHARGE syndrome - a 1 in 10-12, 000 - that's a .0001% chance! Since the finding of the brain tumor they are exploring and testing for other syndromes - Pallister-Hall which affects only 200,000 people in the whole United States and Smith Lemli Opitz which has odds of about 1 in 20,000-60,000. The odds of you being a pro athelete or winning an academy award are greater! ( I personally still think that she fits the CHARGE diagnosis best, but I'm no doctor!). Speaking of the tumor - that's a one in a million chance - your odds of getting struck by lightening are greater! (YEah I have a lot of time on my hands while we're in the hospital - it's either: research, eat, or become psychotic!!!) These are all quite impressive odds, but what I want to point out to you is that Zeta has beaten even greater odds. She has amazed us with all that she has endured and overcome, and she continues to have many doctors scratching their heads. She has fought to be here and what is more amazing is that through it all she continues to be one of the happiest babies I've known! When we were first given the diagnosis of CHARGE syndrome I said that the most important thing for me was that she know that she is loved and for her to love in return. I have no doubt that both of these desires have been fulfilled! We may never have a definitive diagnosis, but in the end that really doesn't matter.
I look at all the odds she's already beat and I know that it is going to be okay. I know that Stevie and I are blessed each day we have with her, with our boys, and with each other!
As of now, I'm counting maybe 1/2 a dozen tests/exams/procedures that Zeta needs done under anesthesia. Fortunately (with many thanks to nurse Nelya and the cooperation of all the doctors involved), it is looking like we will be able to do at least half at the same time - the last I heard is that we are still hoping for sometime in January. I dare not ask if the eosiniphilic pneumonia has changed anything:/ Trina told me to tell her that the odds of a child staying well and having surgery on the day it is scheduled is 1 in 5 million and the odds of being home on Christmas are something like 1 in a trillion, maybe then Zeta will work on obtaining these goals lol!
Much rambling from me today....my apologies......
Today is a good day. Only being home with the rest of my family would make it better! Thank you for continued prayers. I find that I take a lot more interest in other people's 'stories' now too and really stop and think about what and how people are dealing with things....so if you've made requests for prayers on fb and I've seen it I assure you that I've prayed for you too!
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New Years update
.by Angel Crim Brabham on Thursday, January 6, 2011 at 12:37pm.Cautiously.......I am excited to say....we've been home 2 weeks!!! Yay!
We've been busy,but I wouldn't have it any other way! Christmas was wonderful! I definitely sat back and relaxed and just enjoyed my boys more this year than ever!
Thanks to everyone who prayed for our family to be home together and all of the well wishes for the New Year too!
Zeta is stable and still has her sweet personality. Though, her nurse and I have come to the conclusion that she may be a little devious at times. You see, she coincidentally desats (her oxygen level goes down) if someone is not holding her or paying her any attention. I told Stevie this was not the most admirable trait he could have passed on to our daughter - he used to hold his breath until he would pass out when he was having a temper tantrum!
We saw pulmonology, urology, and genetics this week. It seems as if Zeta has the chronic eosinophilic pneumonia as she did not tolerate the start of the weaning of the steroids. We were really hoping hers was just an acute case and it would be resolved soon. Once we started weaning the steroids she began requiring quite a bit more oxygen, so her pulmonologist gave her another two and a half month regimen of steroids. She said that it may take several months to get her lungs healthy again, and in the mean timewe have to be very diligent about her getting any germs due to her weakened immune system - I think the only way we could possibly be more diligent is to put her in a bubble! We had some additional testing with the urologist and found that her bladder looked good so we are going to proceed (yet again) with a plan of doing something for the kidney reflux. Finally, we saw genetics and guess what?? Still, no definitive diagnosis. The syndromes they tested for this time came back negative too. Sooo the doctor is working with Greenwood Genetics in order to try to test for yet another syndrome. However, evidently this syndrome is so rarely diagnosed that they do not have the testing readily available and the doctor has to make a case as to why he feels we need to explore this avenue (i.e the brain tumor) sooo...we'll see. I asked him how many children generally go without a diagnosis and he said close to 50%. I told him that I still think she fits the CHARGE diagnosis best and that until we are proven otherwise we'd just go with that and he laughed. I'm sure he appreciated my authoritative manner lol.
Overall, Zeta seems to be doing pretty well. We still struggle with times of a high increase of needed oxygen and times that we need to 'bag' her (give her extra o2 through the use of a ambu or breathing bag), but we have been very blessed with a kind and knowledgeable home nurse who is very sensitive to Zeta's needs which really helps me out a lot!
There's a one in 5 million chance (if you typically read my updates you know why I am phrasing it like this) that Zeta will have several procedures done with her ENT, Opthamologist, and hopefully Urologist the end of this month. They are going to look at her airway again, do the final sedated hearing test, take some of the fluid from her lungs for testing, a sedated eye exam, lacrimal probe (to open her tear ducts), and deflux (the less invasive stuff for the kidney), but shhhh....please don't tell Zeta. We all know she gets a little anxious and decides she would rather go ahead and visit everyone in the hospital and give them something new to work on before she ever goes in for a planned procedure.
Thank you for all of your continued prayers! Best wishes for a New Year and much love to you all!
2 Corinthians 13:11
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ummmm......
.by Angel Crim Brabham on Sunday, January 9, 2011 at 10:10pm.
Not sure what to title this note....
Sure hope the rest of my family doesn't get snowed/iced in at home....
Steven has been wishing for a snow day for a very LONG time! Needless to ,he is as excited as all the rest of my FB friends!
Steven wanted to spend the night with my mom and dad last night and Chancelor fell asleep in our bed.....boy did he get a rude awakening early this morning when Stevie woke him to rush him up to Moma and Daddy's while we waited on the ambulance....
Boy, what a bunch of randomness.........
I've been thinking since about Friday evening that Zeta seemed to be getting sick again. She had a really rough couple of nights....This morning she woke with fever, respiratory distress, and a seizure. This was our first experience with having to call an ambulance..... with the trach and all of her extra equipment (which can take a good 30 mins to an hour get situated and loaded) and the extra driving time to Charleston we didn't feel comfortable driving her ourselves. Chris and John from Allendale EMS were absolutely wonderful and gave us a quick drive to Charleston and took good care of us! Zeta seemed more calm by the time we got into Charleston, but gave us another little scare as they were moving us from the ER to a room. The nurse on duty said that she was going to go crawl into a back room and hide after all the excitement! Thankfully, Zeta is finally resting comfortably! Looks like another UTI - not real sure yet if it is in the kidneys this time. RSV and FLU studies came back negative....still waiting on all of the rest of the results. So, we're already dealing with the chronic pneumonia and now another UTI - I'm just hoping everything else comes back negative and really, really hoping that this will be a relatively easy stay (and if it's not too much to hope for maybe even shorter than our last admission of 2 weeks!)
Of course, I emailed several of the doctors on her team to let them know of my disappointment and the presumption that we would probably need to cancel her upcoming procedures. One of them replied almost instantly with some quick motivational sentiments - greatly appreciated, but I'm still skeptical.....but we'll see how this all goes!
Thank you for your continued prayers.....will update again when I know more......I'll be thinking of all of you too - while you're out in the snow and slipping and sliding all over the place- keep warm and be careful!!!
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update
.by Angel Crim Brabham on Tuesday, January 11, 2011 at 6:47pm. Zeta seems to be feeling much better than when we came in Sunday morning! I started hinting to the nurses last night that we were ready to go home.
Yesterday, someone questioned me as to where her signature big bow was and a resident doctor responded, "Oh, she doesn't wear it until she is feeling good!" So this morning, I gave Zeta her sponge bath, put a fresh gown on her and put on the biggest bow I had in my bag (hoping they would catch the hint:). The atttending doctor came in this morning and said, "Wow, she's looking a lot better!" A little while later she was back in the room apologizing because we would have to stay longer. She told me that after reviewing all of her labs,etc. they wanted to be very cautious about her kidneys and recheck her urine to make sure she was really responding to the antibiotic - then she told me to sit down for the next part.............I'm thinking, "Are you kidding me? Do you know what we've already been through? You can't shock me anymore.... What could you possibly tell me that would shock me - I mean Zeta is over there in the crib (not blue or mottled) and pretty content and doesn't have fever and already has like a million things that have odds of like 1 in a trillion, you can't shock me . What could it be now?" Obediently, I sat down and continued to think she couldn't shock me any more than I've been shocked in the past...but for a split second I thought..."oh yes she can shock me....I just don't know what else could possibly go wrong!" The doctor proceeded to tell me that something grew in her blood culture - thus another possible blood infection....or.....just a contaminated sample. Well, I'm definitely counting on the latter!!! So, no I wasn't shocked or upset, just a little disappointed that we won't be going home as soon as I would like.... She just seems to be doing too well to have another actual blood infection! So, we're here probably at least for a couple more days until we get all the results back . She said they wanted to be very, very cautious about the uti and the results of the blood culture - simply because of her history, and the fact that she is still on a rigorous steroid regimen that, although great for her lungs, is not so great for her already weakened immune system. I told her that just as I told her last month - we'll do what is best for Zeta (even if it means we're stuck in this room the size of a shoebox with the view of the side of a brick wall)!!
I've felt a kindred spirit with all of my facebook friends that are complaining of cabin fever due to the weather- only I couldn't ever really see what the weather was doing - we're literally in the corner of a building looking at brick walls that seem just a few feet away and part of a cement roof - can't even see up high enough to see the sky ! However, I did see a little bit of ice sticking to the window yesterday :)
So that's all for now......Just praying and believing we'll get good news in the next couple of days!
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quick update
.by Angel Crim Brabham on Wednesday, January 12, 2011 at 1:07pm.Uti is clearing and second blood culture negative. Yay! Now...a nurse walked in on one of Zeta's 'breath holding spells' yesterday (which i guess i forgot to tell them about) and the doctors want to try to determine if they need additional testing or investigating into this while still in the hospital -they're not convinced that it's behavioral....so not sure if we'll be home sooner rather than later...will all depend on what it is determined after consulting with neurology and pulmonology.
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another update
.by Angel Crim Brabham on Thursday, January 13, 2011 at 5:58pm.Zeta had another MRI this morning. They wanted to check the tumor again and make sure it hasn't grown or changed in size. There were some concerns that this may be what is causing the new 'breath holding' spells. Thankfully preliminary reports say that everything looks the same as in November. The doctor's still aren't convinced that she is just holding her breath. It actually looks more like she just freezes and makes no effort to breathe or anything.....then desats really low- starts turning blue then we give her some recesitative breaths and she's ok again.... so we're looking at yet another rare syndrome- central hypoventilation syndrome.....so they'll be testing for it. She will have some more studies tomorrow and then hopefully will be able to go home. Then she'll come back for a sleep study soon....don't ask me why insurance won't pay for a sleep study while you're already in the hospital.......
The've talked to us and explained that there's a real possibility that she may need to be on ventilator support at least while she is sleeping all the time. I've already begun praying about this as it would be another pretty big adjustment for not only ZeTa, but all of us. When I see her sick there are lots of times that I wish we could do more to help her or somehow fix all of the stuff that is wrong, but when she is not sick it's kind of hard for me to even imagine her being on ventilator support every night.
Sometimes it's as if I'm on the outside looking in. I realize this is not your typical life and sometimes the split second decisions we have to make are not what I would consider normal, everday decisions-like deciding if you need to go ahead and give your child some extra breaths or just watch the stat monitor for a few minutes to see if she will come back up on her own- heck just writing that right now sounds kind of scary to me. I mean, if Steven or Chancelor had trouble breathing or started turning colors I would definitely probably freeze up - and then dial 911 as soon as I could manage to think, but with Zeta....with her .....this IS how it is and when those things are happening we just do what we have to do and then debate on whether or not we call a doctor or just tell them on the next visit depending on if it's something she's done before or if it looks a little different or maybe lasts s little longer/ Another thing i've noticed is that I am an organizational freak when it comes to Zeta's health. I used to keep a binder with me at all times that had all of her pertinent health information. That worked for like umm 5 seconds or so and then there was just way too much information! so now I've compiled an 8 page summary of her medical history, doctors, medications, etc and it is constantly updated- like almost daily!!!! It is amazing at how well God can equip you when you need it. For those of you who know me well you know that I am (and have always been) an utterly disorganized person. I lose my keys just by walking from the house to the car. Sometimes I can't find my own socks, and the other day (after fussing at Chancelor for losing my iPod) We found it later ......neatly placed in the bottom of a rubbermaid container of medicine that we keep on a top shelf in the kitchen- now I just wonder how it got there? What I'm trying to point out is that I could never do this on my own!
Hopefully, we'll be ' bustin outta this joint' soon! So maybe no more new updates for a bit- that's usually a good sign! We don't have a date for the sleep study yet and I haven't got the nerve up to ask about the procedures that were already scheduled for the end of this month.....soooo until next time..…take care and keep praying!
"perhaps God brings us to the end of our resources so we can discover the vastness of His." ~Dr. Neil Anderson
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update
.by Angel Crim Brabham on Sunday, January 30, 2011 at 10:42am."Finish each day and be done with it. You have done what you could. Some blunders and absurdities no doubt crept in; forget them as soon as you can. Tomorrow is a new day; begin it well and serenely and with too high a spirit to be cumbered with your old nonsense." Ralph Waldo Emerson
Our adventures began Friday. Zeta, her nurse, and I were home packing and getting prepared for her sleep study that night. Her nurse came to me with a disturbed look on her face and said, "Her g-tube (feeding tube) came out." This happened in September too, so I knew it wasn't really anything to panic about but you only have a few hours before the stoma (the hole that it goes in) begins to close. It's kind of like when you first get your ears pierced - if there's nothing in it then it begins to close. If it closes then you have to go back to surgery to replace it. Anyway, I really didn't want to go to Charleston right then, so I called her doctor's office and some of the local hospitals and medical equipment supply companys to see if maybe on the off chance they may have a feeding tube her size....no luck. It was kind of funny though...when I was talking to one of the hospitals once I would say feeding tube they would say, "you need to talk to 'so and so'.....by the time I had been transferred a few times I became determined to get my whole request out before being interrupted so I was telling this man our story and requested a feeding tube...told him I would come get it...pay cash....let them put it in...bill insurance....have her doctor call them....whatever we needed to do....He kept trying to stop me and tell me something....I presumed it was to tell me that he needed to transfer me to another line so I kept talking. Finally, when I was done with my speel he said, "mam, this is the morgue." I was just a little embarrassed!
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The Adventures of Zeta Part 8,485,345!
.by Angel Crim Brabham on Sunday, January 30, 2011 at 10:45pm.
"Finish each day and be done with it. You have done what you could. Some blunders and absurdities no doubt crept in; forget them as soon as you can. Tomorrow is a new day; begin it well and serenely and with too high a spirit to be cumbered with your old nonsense." -
Ralph Waldo Emerson
Our latest adventure began Friday morning. Zeta, her nurse, and I were home packing and getting ready for the sleep study she had scheduled for that night. Then, her nurse came to me and said, "Angel, we have a problem."
"What is it?" I asked
"Her feeding tube came out."
Oh boy....my mind was racing. Initially I thought....I'll go see her surgeon at MCG (We love, love, love him!), but then I thought that it made no sense at all to do that when we would be going to MUSC later anyway. I really did not want to go to Charleston right at that moment, so I got the bright idea to start calling the local hospitals and med supply companies to see if they had an extra one in her size in stock. (Mind you, things like having a feeding tube, oxygen and a trach are just about as common place to me as having diapers lol). Needless to say, I was not having much luck with this. During the last call I made to a hospital I was transferred to several different people before I could even really make my request so I become determined to make someone listen to me! During the 3rd or 4th transferred call a man answered and I began my speel about needing a g-tube. He kept trying to interrupt me, but I refused to stop until I was heard...(I was really just in denial that I was going to have to go ahead and bite the bullet and drive to Charleston - even though I was not completely packed!) Finally, the poor man - who had listened and tried to interrupt my rambling for a good 2 or 3 minutes said, "Mam, this is the morgue." I was just a little embarrassed!
I finally decided that there was nothing left to do but go ahead and make the trip. By the time we got there the tube had been out for more than a couple of hours and I was so worried that she would end up needing to go back to surgery to have it replaced. (It's kind of like when you first get your ears pierced - if nothing is in it then it closes. If it closes you have to go back to the OR to get it replaced. It can close in just a few hours.) When we got there they went ahead and put something in it just to keep it open until someone from surgery could come put in a new one. Thankfully, we didn't have to go back to the operating room!
We were released from the ER around 6. I had just enough time to shove down a hamburger, check moma, daddy, and stevie into the hotel, take a breath, and return to the hospital. I called Stevie a little before 7 to see where they were....he replied "we just started eating." I could have jumped through that phone and tackled him!!!!!! 'SITTING DOWN TO GET SOMETHING TO EAT?????? I'M HERE BY MYSELF WITH ALL OF ZETA'S 2 MILLION SUPPLIES THAT I HAVE TO UNLOAD AND GET INTO THE HOSPITAL BY 7:30 AND YA'LL ARE SITTING DOWN TO EAT??????? HOW, EXACTLY, DO YOU EXPECT ME TO CARRY ALL THIS STUFF IN THE HOSPITAL BY MYSELF??? I kind of lost my cool. Well, I got to the hospital, got in the parking lot, and by the time I got Zeta and all the stuff that always goes with her - oxygen, monitors, etc. mom, dad and stevie were already there. I can handle all that stuff by myself - it's not pretty, but I can handle it. Now...the stuff she had to bring for the sleep study - oxygen concentrator, big rubbermaid container of meds and nebulizers, supplies, etc. bag of typical baby stuff, her sleeping 'bed', air compressor for the humidifier for the oxygen...and so on and so on....Do you know it took all four of us (loaded down) to get all of her stuff in the hospital?? I don't know how I thought I could have ever done that by myself!
Anyway, the sleep study was let's say.....eventful....the tech was running in every few minutes...I could tell he was prETty disturbed...i'm even pretty sure he would have called a doctor right then if I would have asked. He kept asking, "you do this every night?" "Do you ever sleep?" I didn't really see the big deal - I mean this was just a typical night as far as her oxygen levels dropping and hearing all of the monitors go off. I only had to bag her (give her some extra breaths through a breathing bag) a couple of times. Some nights are a little better and some nights are a lot worse, but this seemed like a pretty typical night. I know....I'm a little warped about reality these days - But when you go so long with people telling you there isn't really that big of a problem (just because they haven't witnessed her breathing episodes or tried to sleep in the same room with her all night - and you just know that the alarms are not all false-, nor do they notice the distinct little changes in her breathing patterns, skin color and general overall being - you figure you have to deal with it the best way you know how and keep trying to find answers - and to be quite honest it is much easier looking in hindsight and know that things that they (and to some extent I) tried to explain away were in fact real- just not as bad as they have been more recently. This has been going on so long - it has just really gotten a whole lot worse! On Friday morning, the tech told me -"I'm not a doctor and I can't diagnose anything, but I've never seen anything quite like this. I'm going to make sure a doctor looks at this TODAY." This was at 5:15 AM.
By 5:25AM we were registering for her procedures: a bronch, bronchoalveolar lavage, botox injections for secretions, sedated hearing test, sedated eye exam, lacrimal probe, and deflux - basically she had some ENT, eye, and urology stuff done. This involved 3 surgeons and an audiologist. Everyone was calling it the 'one stop shop'. All of the procedures went very well. We found out that she CAN hear. I'm glad we waited for another sedated hearing exam because the ear tubes that we had put in in October really did the trick! She can hear! We already knew this though - it was very evident after the tubes were placed. This means no hearing aids! Did I mention, she can hear? What we found out about the eyes was really not that surprising. She maybe only has peripheral vision in the left and is farsighted in the right. She has a prescription for glasses. They gave us the name of the type of frames they would suggest and we looked them up on the internet - they are so darn cute! They look like little pretend glasses:) Now we're having a hard time coming to an agreement on the color lol. They also told us something about her tear ducts, but I had stepped out of the waiting room when the eye dr. came out and no one could quite remember what he said, so I'll have to check with them about that later. We finally had something done for the kidneys! Yay! We are praying that it makes a difference. After consulting with three awesome urologists from three different hospitals we went with the deflux - which is the least invasive method. My biggest concern after the procedure was the small risk of obstruction. With only one kidney and the type of odds Zeta likes to play it was a real concern for me, but she came through it beautifully. We have the option to try it 3 times before having the 'big' surgery. Since she has so many things that she will be sedated for in the future we figured we could keep combining this with other procedures and if it doesn't work then we'll worry about putting her through such a big surgery. She will have an ultrasound in about a month and then repeat another test called a VCUG after that to see if it helped (and I guess we would be able to tell if she went longer than say 3 weeks without an infection....but that's just my opinion!
All of the procedures went well. She went in around 7:30 and we were able to go into recovery to see her sometime between 11 and 12 I think. After waiting on a room to open up on the floor we were finally moved. The hospital is not where you want to be this time of year with all the cold and flu stuff - yuck! We were already trying to work our magic on the residents and trying to persuade them to go ahead and get the discharge papers ready so we could leave first thing the next morning....and they had just agreed.........THEN Zeta's pulmonologist walked through the door. My heart just sank. I took one look at her face and I knew it couldn't be good. She was the doctor that had ordered the sleep study. Before she said anything I told her that I wasn't supposed to see her for two weeks - that no news was good news and I didn't want to hear what she was coming to tell me. (I pretty much already knew ...we had talked about it just a couple of weeks ago). She looked at me and said, "I'm sorry." To make a really long story short she told us that Zeta quit breathing 157 times during the study....that she didn't know how we ever got any sleep......and that they were still unsure of exactly what was causing her problems. She had episodes that looked like obstruction and other episodes that seemed as though she just gave no effort to breathe and some episodes that were inexplicable. The ENT's bronch that morning did not show anything substantial enough to be obstructive in manner, so it may be down lower like in the lungs. It could be the lung disease. It could be neurological. It probably could be a combination of all of these things... She told us that Zeta would need to be on a ventilator at least at night. She said that she felt confident that we really watched her during the day and that we are able to handle her episodes, but we really needed to get her on support at night and perhaps it may even help her work a little less harder during the day. Since we don't know what is causing all of this we really don't know how long she will have to be on the ventilator. The pulmonologist's best case prediction is about 2-3 years and hopefully as she gets older she will get stronger. LIke I said, I knew this may be coming, but it still made me feel like I'd been hit by a ton of bricks. I think Stevie and I just sat there for an hour or so just numb and in shock, but once we got past it it wasn't that bad. Just another part of our adventure I guess.......plus, most importantly - it will help Zeta!
The bad part came yesterday morning. Zeta had a great night on the vent and everyone was pleased, but yesterday morni ng she had several big seizures. I first noticed her turning blue and as I was questioning Stevie about it the monitor started going off then she started convulsing. The doctors and nurses all happened to be right there when it started and they responded super fast. I could not have asked for better reaction time! The seizures were the biggest disappointment of all. Because she started the morning off so rocky - and turned blue again while on the ventilator- they decided it would be best to keep her on the vent (I, by no means disagreed). I just knew that she was getting sick. So far, all of her cultures and labs have been negative for infection though. I am really hoping that it was just the stress of all she has been through the past couple of days or the fact that she got her morning seizure medications a little bit late on Friday because of the procedures. So, yesterday and Friday were kinda rotten.
Today has been a much, much better day! Zeta had an uneventful night and was able to come off the ventilator this morning as planned. She had a fairly good day with no major episodes and Stevie and the boys and I spent a lot of fun time together before they left to go home! My mind has surely been in a better place! The drs had planned to wait until her bedtime at 9 to put her back on the vent, but she seemed to be working a little harder and her heartrate has been a little elevated so they went ahead and put her back on aroung 8. She immediately looked better and drifted off to sleep quite easily.
Sorry for avoiding any emails, texts, or calls.......those of you who know me best know that's just how I am when I have bad days! Thank you all for all of your continued prayers and words of encouragement. I know He is in control (sometimes I just need the reminders:)
attitude & update
.by Angel Crim Brabham on Tuesday, February 1, 2011 at 8:28pm. I try to remind myself of this everyday............
The longer I live, the more I realize the impact of attitude on life. Attitude, to me, is more important than education, than money, than circumstances, than failures, than successes, than what other people think or say or do. It is more important than appearance, giftedness, or skill. It will make or break a company...a church...a home. The remarkable thing is we have a choice everyday regarding the attitude we embrace for that day. We cannot change our past...we cannot change the fact that people act in a certain way. We cannot change the inevitable. The only thing we can do is play on the one string we have...and that is our attitude. I am convinced that life is 10% what happens to me and 90% how I react to it. And so it is with you...we are in charge of our ATTITUDES. -Chuck Swindoll
Zeta is sick again. She's been having some respiratory issues that have progressed over the past couple of days. She had to remain on the vent pretty much all day today because during the couple of hours she was off she was just working too hard. This afternoon she began running a low-grade fever. She's been having blood cultures drawn every other day anyway and they have all been coming back negative for infection so they did a viral panel to see if she has picked up some type of virus. We don't have the results from that yet. Her urine culture from the weekend is still negative for infection, but if her temperature rises or doesn't improve they will check again for a uti.
Needless to say, I was very disappointed this morning, but she doesn't seem as sick as I know she could be... so I am hoping she has just picked up a little cold or something and it will just be another little bump in the road for this stay......
Thank you for keeping us in your prayers!
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update
.by Angel Crim Brabham on Thursday, February 3, 2011 at 8:38pm. Zeta only lasted about 45 minutes off the ventilator yesterday and just really didn't act like she felt that great. This morning she lasted about an hour and a half, but this afternoon she only made it for about 30 minutes off the ventilator. She acted like she felt a lot better and played some this morning, but she really just slept all afternoon. Our original goal was to have 12 hours on the ventilator (at night while she sleeps) and 12 hours off the ventilator, but that goal may change a little. They would like for her to be able to last at least a few hours off the ventilator each day before we go home and then we could continue to try to wean her at home....but I haven't been told anything definitive about the possibility of going home yet. I think they just really want to make sure she is really improving and not at a huge risk of suddenly going downhill. Plus, they are a little skeptical about us being so far away from the hospital should she get into real trouble. All of the blood cultures, etc. continue to come back negative for any new infection which is a huge plus.
At exactly 5:14 yesterday afternoon I got the very strong urge to see the rest of my family. By 5:25 I was practically running to my car to get home to see them. I did manage to stop and let her nurse know that I was leaving. I couldn't, however, stop the sudden flow of tears when I was telling her that I had to go home because I was homesick. I wasn't sure if I was crying because I was leaving Zeta or because I was going to get to see the rest of my family ( I'm sure it was a combintaion of both things), but it was a very intense emotion ! At 5:51 I was stuck in traffic and contemplating just going back to the hospital because it would be so late when I got home. I am so glad that I didn't turn around, because I would not trade anything for the look on their faces when I got home (they didn't know I was coming) - or for the hugs and kisses that I got from all of them!!. I think this is like the 3rd time that I have left to go all the way home this year. I can't tell you how incredibly guilty I feel about not being with them, but at the very same time I feel like I cannot leave Zeta. She has so many "things" (for lack of a better word) that I know about her and that I sense about her when she is getting sick. I'm just so scared that if I'm not with her that I will miss something - or- even worse- they (the drs and nurses) will miss something. Don't get me wrong - I have the utmost faith in the care she is receiving. It's just...after everything she's been through....I worry tremendously. I need to have the assurance that I am close by if something goes wrong. I know the doctors and nurses are all very skilled and have the medical training. They have all been very attentive and caring, but no one has been with her as much as I have and with so many things that have gone wrong with her and could go wrong with her I feel like I am the one that knows her history best and has memorized every single thing that has happened in the and notices the slight changes so maybe....just maybe.....I can give useful input or bring up important reminders if needed.
I say a lot that I feel like we're living like a 'divorced' family. The big difference is that Stevie and I get along.....The sad similarity is that I am a 'weekend' parent...and I guess most would probably say that a big part of that is by choice. I really do think that our boys handle it well, but I know that it is not easy. I remind them every time I talk to them about how very much I love and miss them! I recieved an email from Denise (Chancelor's teacher) today that said they were given a writing assignment in which they had to write about what they would do if they had $100 - but they could not keep it - they had to give it away. Chancelor wrote that he would give it to MUSC so they would let Zeta go home. I was so happy that she shared that with me and I wish that is all we needed in order to go home! I know that both are boys probably wish more than anything that we could all be home....I know I sure do! Please pray for them.
Seeing Stevie and the boys last night did a lot to 'recharge' my batteries, and today seemed to be a better day for Zeta. I feel like a broken 'cliche' of a record when I say this, but we could NOT do this without God, our family, friends, and even strangers who support us! Oh, and let's not forget the wonderful, caring, doctors, nurses and staff (past and present) who have played such huge roles in our lives too! Love and thanks to you all!
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update
.by Angel Crim Brabham on Friday, February 25, 2011 at 6:43pm. Sorry it has been a while with an update.....but no news is usually good news with us!
At our last official count we have been home 17 days! We're really hoping that since the last procedures and the fact that we have the ventilator that maybe now we can stay home for longer periods of time (like counting in months or years instead of days and weeks :)
Overall, Zeta has done really well! We even took a trip to Edisto for the President's day weekend. (THAT was an experience - not so much the time being there because basically we just moved from our house to a different house- but the experience of packing Zeta up for a weekend trip!) It took 3 hours and 2 vehicles to get her all packed, and by the time I was about half way done packing I was ready for a SOLITARY vacation - I was thinking that maybe I should go check myself into a mental ward for even considering such an undertaking!!!! Thank goodness that I have such a great family that is always willing to help! All in all, it was definitely worth all the packing and worrying! I was able to leave Zeta with Stevie a little more freely than I ever would at home, because I knew I would never be more than a few minutes away, and we all got a change of scenery!
I am worried that little trip may have been a little too much for Zeta though. It's not that Zeta did anything out of the ordinary - basically just changed locations - she wasn't out living the wild life or anything like that, but we've noticed that her seizure activity has increased some this week. The downfall to that is that we are kind of stuck at the point where her meds already seem to be sedating her too much at times.....so it's back to the neuro on Tues.....(Oh, but the good thing is that this is the first time we've been able to deal with some of the 'bigger' seizures at home - she didn't spike a fever, and we had the ventilator - so that saved us an admission right there, woo hoo!!) On the other hand there may be other things stressing her system this week too....We've got a new nurse subbing for us and she (in her own words) is pretty loud and boisterous lol and maybe Zeta just isn't used to all that kind of excitement...we've also been working on having her wear her glasses more consistently so I'm sure she is taking a lot more in and maybe she is just overstimulated! Whatever it is, I just hope we can get it under control and that this doesn't mean she's getting sick (that's the four letter 's' word at our house!!)
All of Zeta's appointments have been going well, and I'm really pleased with the care she has been getting! The ventilator has been a definite blessing (even though it weighs 223,004,333 pounds and we use a double stroller just to carry all of the 'stuff' we need to move Zeta from one place to another!) Some days she may only be off the vent 30 minutes or so and then other days she tolerates the trach collar (just oxygen going to her trach - without the vent) for up to 10 hours - there doesn't really seem to be any rhyme or reason to it - it's just Zeta!
It is hard to believe that she will be ONE year old soon. I used to joke with Trina and tell her that for Zeta's first birthday we were going to throw the biggest party ever - like a 3 ring circus.....now I'm too paranoid (not to mention deliriously exhausted) to invite even just a few close friends lol, but I do ask that you say a prayer and thank God for this YEAR OF MIRACLES he has so remarkably and graciously blessed us with!
How I praise the Lord that you are concerned about me again......For I have learned to be content with whatever I have....For I can do everything through Christ who gives me strength.....I don't say this because I want a gift from you. Rather, I want you to receive a reward for your kindess....from Phillipians 10-17
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what happened
.by Angel Crim Brabham on Thursday, March 31, 2011 at 5:14pm. We’ve spent the past week talking with doctors trying to stay OUT of the hospital due to some respiratory and seizure issues. By Tuesday, we were sure we had passed the ‘hump’, but Zeta woke up with a fever yesterday so we had to go in to see her pediatrician. While we were there, she decided to have a few short blue spells ….so…once again the ambulance had to come and take her to the hospital. They had to keep her in the ER while waiting for a bed in the PICU. While she was there she had at least one more blue spell and then all of a sudden she seemed to settle down and everything was better. No more fever, no more blue spells, and she was actually (in my opinion) looking better than she normally does. By the time we made it to the PICU I was already rehearsing my pleading request to go home. She had such a wonderful afternoon, night, and morning that I really didn’t have to do much begging at all. All of her labs, etc. were coming back ok. When I asked about going home I was kind of shocked to get easy agreement from the doctor. I guess we made it through the worst part of whatever was going on at home. They’re presuming it was just some type of upper respiratory stuff that had her system out of whack. I really could get used to short, easy stays like this!
When we were getting settled yesterday one of the nurses told me that she thought I had the strength of 100 men. I am not strong. If I appear to be it is because God makes me that way. That, and I have at least 100 people holding me up. If it weren’t for all of my family at home running all the other parts of my life for me and all the people looking out for our family I would already have one foot in the ground. So to all of you that keep holding us up – THANK YOU! Thank you for your continued thoughts and prayers and faith and belief that He works all things for a reason!
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another update
.by Angel Crim Brabham on Friday, April 1, 2011 at 7:05pm.So, we get home yesterday and Zeta is doing great...but she didn't have such a great night:( I was starting to think that maybe she was allergic to our house or something, but then the hospital called and said that her urine culture had started growing something...so we had to make a trip to see the doctor today (just for good measure I suppose)...Fortunately, it is just a small uti and they're not worried about it being in the kidney. Even better, they are going to let us treat it at home as long as she doesn't get any worse!
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!!!!!'
.by Angel Crim Brabham on Monday, April 11, 2011 at 9:36pm.Really??? I'm beginning to think God must be mad with me or something. I just went out to move my car because I know somebody else could use the handicap parking while we're just hanging out in the hospital BUT after this oh so long, eventful, and stressful morning I forgot to put the handicap decal on my mirror while we were trying to rush into the ER SO I was greeted with a big bright yellow $100 ticket for parking in a handicap spot. I'm going to call and explain in the morning and if they give me grief I'm going to pull them through the phone and tell them to try living my life, better yet Zeta's life, for just a day and see if they are worried about hanging the little thing up while she' s on a vent with maximum oxygen and still not able to breathe and trying to get her and all her stuff out of the car quick enough without having to call 911 to get you out of the parking garage. Grrrrr. Yeah it's pity party city here right now! Oh and my phone is dead so if you're trying to call or text I won't get it until morning. Better yet , we're in a room that the most popular teenage boy in America must have just left because the phone keeps ringing off the hook w little girls asking for Jake. And my head hurts and I had a tooth break off that I won't be able to get fixed tomorrow and I really, really feel like I'm going crazy!!! Ok, now, once I got this all out it seems kinda funny, but I'm tired and going to try to sleep until the next dr or nurse comes in ( or one of Jake's girlfriends calls) Oh,and Zeta is resting peacefully right now so that's why I get to whine and complain about my problems instead of updating you about her! Goodnight Facebook.
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Update
.by Angel Crim Brabham on Tuesday, April 12, 2011 at 9:46pm.For those of you who worried- I know God isn't mad at me. We all have those days where it feels as though absolutely nothing is in our favor and yesterday was one of those days for me. I'll have to say I really enjoyed reading all of your responses though. I couldn't find an outlet to the roof....I really thought about the water balloons, and I guess maybe somebody I'm friends with on Facebook must know Jake 'cause after I posted they all quit calling...
Now...on to the ' portent stuff. Zeta had a better day today. They quit giving her anything by gtube and just gave her iv fluids throughout the day. This, along with the meds, has helped bring her heartrate back down and also helped improve her respiratory status. The second X-ray they did last night showed some collapsing in her left lung, but her breath sounds are already improving. Neurology stopped by and they are going to add a third seizure med or either try increasing one of the other meds and hope we don't get toxic. We're also getting an official referral to BNI neurosurgery in ARizona for the brain tumor. They have a center that specializes in hypothalamic hamartoma. It's hard because Zeta has so many issues that 'could' be causing the seizures. Most other kids have a clear cut case of the tumor itself causing seizures and not the additional respiratory and other health issues. AZ will review her records on May 4 and then give us their recommendations. Not sure exactly what we'll do if they recommend surgery......that's a long way from home....please be in prayer about this. Oh, and I don't know how I could forget this....they have another baby diagnosed with hypothalamic hamartoma here.imagine that, 1 in a million odds.... And there are two babies right here. I don't know how I'll figure it out , but I really would like to find out who this other family is and talk with them!
Let's see...We have some ent procedures planned in early May. I think that's about it...
A friend made the drastic comparison of my life to Job. I know that my circumstances are not near the level of what Job was dealt, but I do know that many of us, as Christians, are dealt far more benign circumstances than he and yet we're ready to immediately blame or question God. I think Job puts into perfect perspective that as humans we do question or try to bargain with God, yet we have trust too. I guess it's kind of hard to explain. '"what strength do I have, that I should still hope? What prospects, that I should be patient?" job 6:11. We all feel like this from time to time -and in far less trying circumstances. There are so many assurances that we are not alone...."you hear o lord the desire of the afflicted; you encourage them, and you listen to their cry." psalm 10:17. These and other verses written to tell us of His never-ending presence in our lives are not just rhetoric- it's real. I questioned a lot why God never 'talked' to ME or 'showed' ME any miracles, but I it was just I was too busy (or too stupid) to listen and see all that He does. There is way too much that we take for granted!
I've been reading Life Without Limits by mike Vuijic ( I'm sure I messed up his name and probably the title, but I know you've seen the motivational speaker with no arms or legs on tv or YouTube) anyway if you're in to reading I encourage you to get it. He re-ignites that save the world attitude we have all had at some point. Which brings to mind the recent CITYserve in Barnwell. I wish I could have been a part of or atleast witnessed that. I've read and heard so much about it and what a wonderful experience it was for the community. It just gives another concrete example of all the good and willing people there are and God's hand in our lives...
Ok ok, I'm sure that's enough preaching and rambling (plus i'm going cross eyed trying to type on this little screen) lol but you know I usually have a lot to say when we're in the hospital. You know i have to get all philosophical and everything!
One more thing, in case you're wondering, they dropped the ticket- they didn't even really ask me why I didn't have the placard up, but of course I had to explain it to them anyway!
Where there is great love, there are always miracles~Willa Cather
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A little bit of normal
.by Angel Crim Brabham on Wednesday, April 20, 2011 at 8:16pm.Whoa, Whoa, Whoa…..I’m exhausted! Ask me what we did today… We went to the zoo. I have to admit it has been so long since I’ve done much of anything ‘normal’ that I didn’t realize how exhilaratingly (if that’s a word) exhausting it could be. I also didn’t realize how ‘petrified’ of crowds I have become!
We promised the boys that they could each choose something to do over spring break. Chancelor chose the zoo and Steven chose Monkey Joes. Simple, right? WRONG! These days, it seems as though nothing is very simple anymore. Due to changes in Zeta’s nursing services for this week and conflicts with Stevie’s work we’ve ended up with only one day in which Stevie will be off work that coincides with when we’re staffed with nursing. So….that only left one day that both of us could take the boys to Monkey Joes and the Zoo ….keep in mind that we have to do it within a 8 hour time frame because those are the hours that we have a nurse that particular day.
Well, around 8 last night I got the bright idea that I could take Steven, Chancelor, AND Zeta to the zoo. I reasoned that we would be outside so there would not be a whole lot of people for her to be around and it IS spring-time so it’s not SO hot (You’ve got to keep in mind that I pretty much stay completely indoors except for going back and forth to the hospital or drs office so I really have no clue what the weather is really like….. Anyway, I decided that it might be a good idea to invite someone to go with us just in case we had any emergency issues. So, this morning Steven, Chancelor, Zeta, my mother in law, and I made our way to Columbia. I meticulously prepared everything last night so we would have smooth sailing this morning. I prepared all of her feedings, meds, and packed everything I could think of….after all, this was our first outing (besides doctors visits ) since she has been on the ventilator. I’ll have to say that everything went very well….at least until we ran out of OXYGEN!!!!!!!! UGH…..
I honestly don’t know what happened, but we were almost finished with at all of the exhibits when Zeta began having trouble keeping her oxygen saturations up. I checked everything I could think of, but she was obviously beginning to struggle. As I was trying to get her emergency bag out it occurred to me to check her oxygen canister………oh what a feeling of doom when it registered that the canister was completely EMPTY!!! I immediately began praying and trying to figure out how this was going to work. Here we were on the back side of the zoo and Zeta needed oxygen and she needed it fast. I continued to pray as I tried to gather my bearings and prepare to start bagging her, and just as quickly as her oxygen saturations dipped they came back up! I didn’t quite know what to make of it, but her monitor was reading 100% oxygen saturation- on an empty tank of oxygen. I called to my mother-in-law to let her that know that I had to go to the car to change out her oxygen. Then, I began my sprint to the car. Did I mention that EVERY school in South Carolina must be on Spring Break, and did I mention that EVERY day care in a 100 mile radius must have been at the zoo too? Granted, I’ve made many, many trips to the zoo with both my school children, and my own children, but I have NEVER seen this many people there! I felt like a mad person tearing through the crowds! I felt like I was running the Amazing Race. I had a destination, and I had to get there FAST! I didn’t care if Zeta looked ok, if her monitors said she was ok…heck, I probably wouldn’t have cared if peter pan, himself appeared and told me it was all ok….all I knew was that that bottle said EMPTY and I had to fix it before she started struggling again!
Just as we made it to the car, her oxygen saturations began falling again. By this time, I was like the tazmanian devil- ----spinning, and flinging and throwing stuff! In the midst of all this, and as I was putting her in the car to connect her to the big reserve o2 tank I noticed this little ‘thing’ go flying by my head. I thought for a minute, “That didn’t look quite right – what WAS that?” Then it dawned on me – I had pulled the feeding tube out of her stomach. “Oh, dear God, please, PLEASE help me!” I lifted her shirt, and sure enough, the feeding tube was gone. ….But the strangest thing happened. I felt as though I was having (yet another) out of body experience. It’s as if I stood and watched myself, slowly, surely, confidently connect the oxygen, finish loading all of her equipment, and finally, find a new feeding tube ‘button’ to replace the one I had just yanked out. Zeta quietly fell off to sleep and smiled peacefully as if she didn’t have a care in the world. And that was that.
I still have no idea what happed with the oxygen - if the heat affected how much was used or what, but I double checked the bottle when we got out of the car and it was completely full. Plus, Zeta has been using minimal o2 so it should have lasted a lot longer than it did. …I guess I just learned another lesson….take 2x what you need!
I guess you can gather from my bravery (i.e.foolishness) that Zeta is doing great! I want to her to have as many ‘typical’ kid experiences as she can. That, and I want our family to get to a new kind of normal!
By the way, in case you’re curious, I think Zeta’s favorite animal is the flamingo. It is actually the ONLY animal she paid ANY attention to!
This morning Chancelor said, “I sure hope we see Blake at the zoo.” I tried to explain to him that the chances of that happening were probably slim, but he insisted, “well, we might.” Do I even need tell you who we saw as we were getting ready to leave? (BLAKE). I’m beginning to think my kid has ESP or something…at least when it comes to anything relating to his good friend, Blake. After all, that is how we got Zeta in the first place lol…… After Blake had a little sister, Chancelor kept telling everybody that he was going to have a baby sister too. Sure enough…..well…..he got a baby sister!
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A little bit of normal
.by Angel Crim Brabham on Wednesday, April 20, 2011 at 8:16pm.Whoa, Whoa, Whoa…..I’m exhausted! Ask me what we did today… We went to the zoo. I have to admit it has been so long since I’ve done much of anything ‘normal’ that I didn’t realize how exhilaratingly (if that’s a word) exhausting it could be. I also didn’t realize how ‘petrified’ of crowds I have become!
We promised the boys that they could each choose something to do over spring break. Chancelor chose the zoo and Steven chose Monkey Joes. Simple, right? WRONG! These days, it seems as though nothing is very simple anymore. Due to changes in Zeta’s nursing services for this week and conflicts with Stevie’s work we’ve ended up with only one day in which Stevie will be off work that coincides with when we’re staffed with nursing. So….that only left one day that both of us could take the boys to Monkey Joes and the Zoo ….keep in mind that we have to do it within a 8 hour time frame because those are the hours that we have a nurse that particular day.
Well, around 8 last night I got the bright idea that I could take Steven, Chancelor, AND Zeta to the zoo. I reasoned that we would be outside so there would not be a whole lot of people for her to be around and it IS spring-time so it’s not SO hot (You’ve got to keep in mind that I pretty much stay completely indoors except for going back and forth to the hospital or drs office so I really have no clue what the weather is really like….. Anyway, I decided that it might be a good idea to invite someone to go with us just in case we had any emergency issues. So, this morning Steven, Chancelor, Zeta, my mother in law, and I made our way to Columbia. I meticulously prepared everything last night so we would have smooth sailing this morning. I prepared all of her feedings, meds, and packed everything I could think of….after all, this was our first outing (besides doctors visits ) since she has been on the ventilator. I’ll have to say that everything went very well….at least until we ran out of OXYGEN!!!!!!!! UGH…..
I honestly don’t know what happened, but we were almost finished with at all of the exhibits when Zeta began having trouble keeping her oxygen saturations up. I checked everything I could think of, but she was obviously beginning to struggle. As I was trying to get her emergency bag out it occurred to me to check her oxygen canister………oh what a feeling of doom when it registered that the canister was completely EMPTY!!! I immediately began praying and trying to figure out how this was going to work. Here we were on the back side of the zoo and Zeta needed oxygen and she needed it fast. I continued to pray as I tried to gather my bearings and prepare to start bagging her, and just as quickly as her oxygen saturations dipped they came back up! I didn’t quite know what to make of it, but her monitor was reading 100% oxygen saturation- on an empty tank of oxygen. I called to my mother-in-law to let her that know that I had to go to the car to change out her oxygen. Then, I began my sprint to the car. Did I mention that EVERY school in South Carolina must be on Spring Break, and did I mention that EVERY day care in a 100 mile radius must have been at the zoo too? Granted, I’ve made many, many trips to the zoo with both my school children, and my own children, but I have NEVER seen this many people there! I felt like a mad person tearing through the crowds! I felt like I was running the Amazing Race. I had a destination, and I had to get there FAST! I didn’t care if Zeta looked ok, if her monitors said she was ok…heck, I probably wouldn’t have cared if peter pan, himself appeared and told me it was all ok….all I knew was that that bottle said EMPTY and I had to fix it before she started struggling again!
Just as we made it to the car, her oxygen saturations began falling again. By this time, I was like the tazmanian devil- ----spinning, and flinging and throwing stuff! In the midst of all this, and as I was putting her in the car to connect her to the big reserve o2 tank I noticed this little ‘thing’ go flying by my head. I thought for a minute, “That didn’t look quite right – what WAS that?” Then it dawned on me – I had pulled the feeding tube out of her stomach. “Oh, dear God, please, PLEASE help me!” I lifted her shirt, and sure enough, the feeding tube was gone. ….But the strangest thing happened. I felt as though I was having (yet another) out of body experience. It’s as if I stood and watched myself, slowly, surely, confidently connect the oxygen, finish loading all of her equipment, and finally, find a new feeding tube ‘button’ to replace the one I had just yanked out. Zeta quietly fell off to sleep and smiled peacefully as if she didn’t have a care in the world. And that was that.
I still have no idea what happed with the oxygen - if the heat affected how much was used or what, but I double checked the bottle when we got out of the car and it was completely full. Plus, Zeta has been using minimal o2 so it should have lasted a lot longer than it did. …I guess I just learned another lesson….take 2x what you need!
I guess you can gather from my bravery (i.e.foolishness) that Zeta is doing great! I want to her to have as many ‘typical’ kid experiences as she can. That, and I want our family to get to a new kind of normal!
By the way, in case you’re curious, I think Zeta’s favorite animal is the flamingo. It is actually the ONLY animal she paid ANY attention to!
This morning Chancelor said, “I sure hope we see Blake at the zoo.” I tried to explain to him that the chances of that happening were probably slim, but he insisted, “well, we might.” Do I even need tell you who we saw as we were getting ready to leave? (BLAKE). I’m beginning to think my kid has ESP or something…at least when it comes to anything relating to his good friend, Blake. After all, that is how we got Zeta in the first place lol…… After Blake had a little sister, Chancelor kept telling everybody that he was going to have a baby sister too. Sure enough…..well…..he got a baby sister!
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here's the latest
.by Angel Crim Brabham on Friday, May 6, 2011 at 5:16pm. Too many decisions............
Anxious...........
Nervous............
Excited..............
Scared.............
Brain Surgery...........
These are what my status updates would look like for this week.
I've spent a lot of time on the phone with various people in the neurology/neurosurgery department at the Hypothalamic Hamartoma (HH) Center at the Barrows Neurological Institute. The good news is they can do surgery for the brain tumor. The bad news is - it's BRAIN surgery! The good news is that it is likely to help improve Zeta's seizures. The bad news is the center is over 2,000 miles away. I could go on and on about this....but I think I'm still in another realm somewhere.....
Suprisingly, I am not feeling how I would imagine reacting to news that any of my children would need some type of major surgery....nevermind brain surgery. If you were to ask me how I thought I would react to such news I would probably say that I would break down, give up, have a pity party, scream - all of those things....what's strange is that I don't feel any of those things. Instead, I feel a combination of like I'm walking around in the fog and a mixture of slight excitement that this may be pretty big in helping Zeta ...............along with apprehension that it could possibly do more harm than good. It is a very indescribable feeling.
There are so many issues to contend with. ..So far, we are at the beginning stages of discussing arranging medical transportation for Zeta; transportation and housing for the rest of us....and so many other things. Who will go when, how long we will stay...and possibly rearranging a hospital admission she has next week and one in June too. She was supposed to have her cleft palate repaired next week and then be admitted to begin the ketogenic diet (a special diet for children who have seizures that are not responding to medications) in June. We probably won't do the HH surgery until July. Steven and Chancelor have certainly provided a little comic relief in the midst of it all. Steven says he wants to go to touch a cactus because they have a lot of them in Arizona. Chancelor says, "There's no way I'm stepping foot on a plane!"
It's kind of weird, but I have a pretty peaceful feeling about it all. It's kind of like when we faced the trach surgery. We had suspected we would one day be faced with that decision, we prayed about it, and in the end I believe it all worked out the way that it was planned. With this surgery, we have talked and prayed about it a while too - since the intial diagnosis in November. There are so many variables....keeping her well enough to make the trip to actually have the surgery....the surgery being a success, and then getting home safely. It's all in God's hands - not ours, and that's where I have to leave it.
We shouldn't pray because it's the ONLY thing LEFT to do - we should pray because it is the FIRST thing we SHOULD do! I want to re-iterate how very much we appreciate all of your prayers. Our family is a first hand witness to the power of so many prayers. Some people wonder - how are you calm? how are you not angry? Let me answer that first by saying that there are certainly times when we are not so calm, and I'm pretty sure there are times we are angry....BUT neither of those emotions help our situation AND look at all we have to be THANKFUL for. Look at ALL we have overcome. Look at how this sweet little baby, our baby, has touched so many people. Look at all of the blessing we receive and all of the people who hold us close. How can we NOT be thankful for all of this?
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the everchanging and rambling news for today
.by Angel Crim Brabham on Friday, May 20, 2011 at 10:58am.So, we found out yesterday that the past 2 UTIs weren't really UTIs because they cultures never grew anything out. This was really great news for us...the question remains, though...'what's going on?" Could be different viruses she's picking up....could be related to seizures and her body just being out of whack....looks like we're going back into seclusion now. That's not to say that we were ever fully out of seclusion, but we had ventured out some the past few weeks so it isn't entirely unreasonable to think that she has been picking up all kinds of little germs. They've readjusted her seizure meds once again and said that if we're still having breakthrough seizures we'll have to try yet another drug because the two she is on now are not working. This is something I really want to avoid. So I'm hoping we can at least make it through the next few weeks. She is going to be admitted to the hospital to begin the keto diet (a special diet for people whose seizures are not responding to meds) in June and the neurosurgery people in Arizona are supposed to call us with a definitive date for removing the tumor after June 1. They are in the midst of separating the center into pediatric and adult entities. Up until now the specialized center has focused on both adults and childen, but they built a new children's hospital in January and now they are moving all of the children there. I've been ok with waiting for a surgery date, but this week has me spinning my wheels again. Her seizure activity has increased and I'm back to the point of saying, "let's just fix this as soon as possible!" We were looking at going in July, but I'm thinking I would go tomorrow if they'd let me :/ I'm not so naive to assume that we'll go have the surgery and everything will be all roses from here on out, this may potentially help only one aspect of her health issues - the seizures - but only God can predict the future...... and he does create miracles. Still, as a parent, it is very trying to see your child's body being wrecked with uncontrollabletwitching, movements, and convulsions over and over. If there is a REASONABLE hope that something can be done to help then, as a parent, you are willing to do whatever it takes. Some days I just feel like screaming and throwing a fit, and then I realize that it would do absolutely nothing to change our situation - plus it would take WAAAYY too much energy lol! Every day, I count our blessings. Granted, there are times that I do feel sorry for myself and our family, but I know all too well that things can always be worse. I'm reading Working It Out by Abby Rike, a contestent n the Biggest Loser that lost her husband, young daughter,and 2 week old infant in a tragic car accident. She is definitely what one would call a pillar of faith. I am enjoying her story and, oddly, find that I relate. I know that my trials do not 'stack up' to what she has had to overcome, but I still go through tremendous grief and mourning....even though I have not experienced such loss by death. Her story is a testament to faith and shows how we really do choose how well (or how poorly) we deal with things - not just tragedy- but just life in general. When you see someone like her and all that she has overcome and you see how her faith still shines on it is so encouraging. My hope and prayer is to live as she has and be able to share our story to encourage others....
Faith is the deliberate confidence in the character of God whose ways you may not understand at the time. ~Oswald Chambers
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Getting ready for the next big thing
.by Angel Crim Brabham on Tuesday, June 21, 2011 at 12:47pm.My friend, Trina asked me to make a list of 20 specific things to pray for relating to Zeta's upcoming brain surgery in Arizona. As I thought about these things I found myself feeling unworthy and insignificant of such intercession and prayer. I mean, who am I to ask for such great things? I found the first couple of requests quite easy to write, but then I began to worry, "If people see this they might think I'm crazy - or selfish - unrealistic maybe."...and so, it became harder to write specific requests. After a while, I realized that perhaps it was just Satan holding me back from making my prayers known. After all, if I don't make my prayers known then no one else knows if God 'fails' to answer those prayers thus I don't look 'crazy', and my open faithfulness still seems real and I can still say that God is at work. But, you know what? God NEVER fails. He hears our prayers - even the seemingly insignificant ones - even the ones that go beyond MAN'S ability to comprehend.
Zeta's life thus far is a TRUE testament to the continued prayers of so many. Skeptics may wonder how I believe this because Zeta has been dealt such a hard lot. I believe it because I know how this whole experience has changed my life. I believe it because I have seen her escape from the throws of death more than once. I believe it because I have seen other lives touched. I believe it because I see God in each of my children every day, and I believe it because my Heavenly father has given me the most extraordinary earthly parents possible. I believe it because I do have FAITH.I have FAITH that God does hear my prayers. I have FAITH that He knew the beginning and end of Zeta's life, my life, and your life - even before we were formed. I have FAITH that Zeta's life - my whole family's life- is being lived and experienced just as God has planned and that He will see us through what the next hour, the next minute, or the next second brings.
As I sat down to eat lunch and read today's message in "Our Daily Bread" the passage was titled, "Unexpected Blessing". It was the story of Naomi and Ruth. You could say I was reading between the lines a good bit....Several things stuck out to me and my current state of feeling....
1)"The story started in desperately unpleasant circumstances...despair...It changed direction due to undeserved kindness.."
2) "It depended on unexplainable intervention
3) "It ended in unimaginable blessing: a baby"
4) "God makes miracles out of what seems insignificant: fragile faith, a little kindness, and ordinary people"
You see, I could take these pieces of the message and insert OUR family's past year. It started in unpleasant circumstances and often despair....it changed direction due to undeserved kindness - the love of our Christ Jesus and the kindess and support of those around us...it dependeded on unexplainable intervention - some of Zeta's recoveries have little medical explanation....and it ended in unimaginable blessing - a tiny baby that has changed the thinking and feelings of many people. The whole thing still just gives me chills....but finally, the last part...the part of fragile faith, kindness, and ordinary people....that sums up the past 15 months of my life COMPLETELY!
After I finished reading I sat and cried. I realized that in the past couple of weeks I haven't been having the honest, complete prayer life that I had. I also realized that because things have been relatively easier here the past few weeks that I have become a little slack in my prayer life. I still pray....but the personal component was kind of lacking....you know, the humaness of 'forgetting' to be as diligent in good times as in bad times...One of those 'eye-opening ' times when you realize you are not alone...haven't been forgotten....that GOd is ALWAYS there....
As we prepare Zeta's upcoming surgery and our travel across the country please remember our family in prayer. Please pray for the insurance issues to quickly go through so we can have that worry out of mind. Please pray for safe travel for everyone going. Please pray for the team of doctors and staff waiting for Zeta - the ones that don't know her - to see her as this tiny, but significant being...pray for tender and healing hands - hands and hearts that can only be guided by Him. Pray for remarkable recovery and our safe return home. Pray that His will be done and that we are accepting and mindful.
Jeremiah 29:11 I know the plans I have for you, says the Lord. Plans to prosper you and not to harm. Plans to give you hope and a future!
BLESSED
.by Angel Crim Brabham on Friday, June 24, 2011 at 11:17pm.Wanna know why I'm blessed?
Well, let me start by telling you how great Zeta has been doing this past month. Her seizures have been pretty controlled, she has been off the vent for up to 7- 14 hours most days, and her latest kidney scan showed that the procedure we had done in January was successful (which means that when she has uti's her single working kidney is protected right now - and she gets to come off of one of her many medications!) We've been trying small taste tests again - she takes 1- 2 tsp before tiring out and she seems to be doing well with it. She rolled completely over to her stomach for the first time this week too!!
Today, Stevie and I had a date with Chancelor and took him out to eat and shoe shopping! It was wonderful to just have some down time with 2 of my favorite boys!
Tonight, the boys had their VBS program. When we arrived at the church we saw many people wearing Team Zeta shirts. Before the offering, our pastor announced that the offering for the week would be given to Zeta's fund. Well, of course I began crying. Then,an old neighbor was sitting in front of me and turned around and held my hand and kept telling me, "It's gonna be ok, it's gonna be alright." ...and I cried even more...I realized the irony in the fact that here was this grown man who, himself, had survived 13 brain surgeries after he was born- telling me it was gonna be ok!! It was a truly humbling and touching moment, and one that will not soon be forgotten!
Steven decided to make a public commitment of faith this week. He just kind of casually mentioned it in conversation this afternoon. He was talking about something totally different and then non-chalantly said , "OH, yeah I'm gettin' baptized." Then he proceeded to tell us about his profession of faith! How exciting!
I can't tell you how uplifting it is to have the support of so many people. I honestly do not know how I could function without all that my parents, sister, grandparents and in-laws do to help me. It's hard to imagine going through this without the support of other family and friends too....We have a wonderful home nurse, an excellent medical team, and some past doctors and nurses that still keep in touch....on especially hard days I just think about how many people are rooting for us and all the words encouragement and prayers that are said. It's all proof positive that times like this are what God intended when he breathed the breath of life into human spirit!
Much love!
Romans 10: 17 So faith comes from hearing, and hearing through the word of Christ
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I love your blog. So many people will be impacted by this. I love seeing your posts on FB & keeping up with all that is going on with your precious family. However, people that are not your "friends" will be able to follow you, and your story may impact a family on the other side of the world. Thank you for continuing to share your story with us. Much love!--Carmen Elkins
ReplyDeleteI am so glad you posted everything in one place. This will reach so many other people that are not on facebook. You and your family are a true witness of daily survival through God's love and mercy. I am so proud to know you and Stevie personally and to see what strong Christians you both are and what God is doing daily in all of your lives. Zeta is a remarkable baby and she has sooo many people praying for her. Angel, you are amazing! I know these postings are theraputic for you, but they are a true witness to those out there that do not know our forgiving, and eternal Father. Love you all bunches!!
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