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Dec 12, 2005 4:43:51 GMT -5
Post by boogerbuttsmom on Dec 12, 2005 4:43:51 GMT -5
I have been just kinda lurking for awhile maybe because its just so hard to share my story. Ah where to begin. I found out when I was 16 weeks pregnant that the baby I was carrying had spina bifida and hydrocefylus(sp?) I was devestated but knew that things would be ok, my brother has both of those things so I knew that she would be fine. I was exposed to fifths disease and was not immune so I was being followed for that as well for about 10 weeks of weekly ultrasounds. I was going to have Gabriela on the 29th of August but she decided that she wanted out a little sooner so I had her by c-section on Aug.16. Everything went well the doctors came back in and told me that she was doing really good. They took me by to see her on my way out of recovery, I was so scared. She was absolutley beautiful, she looked just like her older sister tons of hair. She had her first surgeries and came through with flying colors although after the 2nd surgery it was found that the whole left side of her mouth and throut were paralized, she was also having periods of apnea. She was put on a little o2 to remiond her to breath. The doctors assured me that she would probably grow out of it and that with therapy she could swollow again so they were teaching us how to do everything getting ready to send us home. I noticed the spot on her back they had repaired was looking a little strange and kinda smelled. The nurse cultured it and sure enough it was infected. She went in for her 3rd surgery to clean that out. The nurses had to put a clean dressing on it every shift, I wanted to know everything about everything so I watched, well tried to. the nurse told me that it was pretty deep and I probably didnt want to see I stll stayed there and cryed through the whole thing. I sit here know crying remembering it. I just wanted my baby better so that she could come home with me. Well a couple days into her back healing the doctors once again came to me and told me they wanted to do a revision of her shunt she need a different one, so they took her off for her 4th surgery. She came back and right away I noticed a big difference in her breathing before she would take like 22-25 breaths a minute and just have occasional periods of apnea but now she was only taking like 10-13 breaths a minute and having more serious periods of apnea. The doctors wanted to go in a nd do another surgery to decompress her brainstem. Because of the hydrocefylus she had something called arnold chiari malformation where the bottom part of the brain extends down into the neck. So she went in and had her 5th surgery done in a month. She came out of that surgery still on a ventilator, with every other surgery she had come off before she went back to the nicu. During that night and the next she had severe high blood pressure and the doctors couldnt figure out where it was coming from she had never had that problem before. So they took her off the ventilator thinkging it was just aggitation. She couldnt breath well enough to get the co2 out of her body so they put her back on. They finally found a blood pressure med that worked so they weaned her off of her pain meds and tried t otake her off the vent again, I think in total they tried to take her off that blasted thing about 5 times but she just couldnt manage. The doctors called us into this little room right next to her little pod in the nicu. They told us they thought without a doubt that she would be on a vent for the rest of her life would have to fed through a tube in her stomach and that more than likley the blood pressure med would stop working and there wasnt another med they could try, her blodd pressure problem was nerologic instead of whatever the other problem is. They told us our daughter would spen the majority of her life in a hospital and would always be in pain. We had decisions to make about her and we would meet again whenever we had decided. My first thought was that I wouldd do whatever it took to keep my girl alive. Then I started thinking about her and I knew then what my decision would be. I talked with her nurse about it and with the doctors informally asking them all kinds of questions, were they sure, was there anything else we could do? I couldnt stand the thought of my baby being in pain for the rest of her life, it took tons of morphine just for me to hold her so that she would be comfortable. I talked wit hmy husband and he felt the same as I did. We met with all of her doctors and surgeons and social workers and the therapists. They all were there for us to talk to, to answer any other questions we might have. They told us in 30 years they had seen only 1 other case like hers. Most of the time babies with spina bifida went home in a week completely healthy. Here my daughters spina bifida leision was really low. She kicked her little legs and curled her little toes. It wasnt supposed to come to this she had done so well after birth. I let them know that we were going to take her of life support and they told us whatever our decision was they were behind us 100%. We spent the next week and a half just loving her, taking pictures,video, molds of her feet and hands. I remember the hardest was to look in her eyes and know that would'nt see those beautiful hazel eyes again. All of our family and freinds came up and on wednesday and we all spent time holding her and loving her. Friday september 30th at 4:00pm we took her of life support and she lived untill 10:30pm. They gave us a private room away from the nicu, I didnt want any other parent to see what was going on. She died in my arms. We live about 3 hours from the hospital so I carried her home with us.
I'm having such a hard time with feelings of sadness and guilt tonight. I talk with her alot these days and we visit her grave a couple times a week. I ache to have back in my arms and I struggle with wanting to be pregnant again. I am so scared because I have already had a baby with spina bifida and it runs in my family, will I have another baby with the same problems? I keep having dreams of being pregnant and having a healthy little boy but most time I think its just my subconscious playing tricks with me. I asked the doctors to tye my tubes but they said no. They instead gave me a IUD, well it fell out. The odds of that happening were like less than 1% so I keep thinking maybe somebody is trying to tell me something. Here I am at work feeling yucky now and all I want to do is go home to my 2 year old but I cant so I guess I'll go find something to do. I'm sorry this is so long but thank you for listening
Mandy Anastasia 11-6-03 Gabriela 8-16-05~9-30-05
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Dec 12, 2005 8:28:19 GMT -5
Post by Corinne on Dec 12, 2005 8:28:19 GMT -5
Mandy, I am so very sorry for the loss of your precious daughter, Gabriela. You have had to make the most difficult decision a parent could ever make. I know because I had to do the same for my son, Tim. He was 16, but lived most of his live in pain. He also had a feeding tube. Mandy, this is selfless act as a parent. You thought of Gabriela and not yourself. You knew she would suffer and chose to let her be at peace.
I agree with your doctor about not tying your tubes. Give it time. I would not make a decision like that while your grief is so new.
Peace to you
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Dec 12, 2005 11:31:07 GMT -5
Post by heidiforever on Dec 12, 2005 11:31:07 GMT -5
You story is so incredible! I am so sorry all this has happened! Thank you so much for sharing your story with us. My son died in my arms, too, just like that. I feel so bad for you! I'm glad you have found us to share your little girl with! (((((hugs)))))
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Dec 12, 2005 15:18:24 GMT -5
Post by danielle on Dec 12, 2005 15:18:24 GMT -5
Oh,Mandy, You gave your child the best gift you could by letting her go in peace. I could not imagine being faced with the decision that you were faced with. Please know that all of us here at SG know the tortuous pain of losing a child. The hurt, the pain, the nightmare. I pray that you and your husband will find peace in the fact that she is in heaven having the time of her life. She has no pain, or problems. She is perfect, radiant and beautiful. The time will come when we all will see our precious babies again. My little boy Christopher had a VP shunt. He was born with aqueductal steno sis, and hydrocephalus. I know this sounds bad, but i even miss stroking his head and feeling his little shunt bump. We all struggle every day. Just know that anytime day or night we are all here for each other. I am glad you found us here at SG.
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Dec 12, 2005 18:48:53 GMT -5
Post by anthonysmommy on Dec 12, 2005 18:48:53 GMT -5
Mandy, I am so sorry for your loss. I know what a hard decision it was to take your child off life support. We had to make that decision as well. Our son had congenital heart defects, had surgery at 9 days old, had many complications and never fully recovered. He also never came home during the whole ordeal. The doctors also tried to get him off the vent many times too and were unsuccessful. His little heart couldn't take it. In the end we were told that he had a blood clot in his heart, his heart was pumping but not releasing, his kidneys had shut down again and he was on 100% oxygen the whole last day. We too questioned the doctors to know if this was our only option. We wanted to be there with him so we made the decision. It was so hard, so very hard but it was his time to go. I often have feelings of guilt and wonder if I should try for more children, will they have a heart defect too. I pray that it never happens again. I hope you find this site as a place where you can come and find others that understand. God Bless, Michelle
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Dec 14, 2005 12:11:42 GMT -5
Post by justinsmom04 on Dec 14, 2005 12:11:42 GMT -5
I can't think of a worse thing (although I know there probably are) than watching your child die in your arms. Justin died in my arms immediately following his baptism. I watched his little chest rise and fall less and less frequently and it was the most excruciating thing I've ever been through. We, too, carried Justin home ourselves (much to the horror of one of the advisors at the hospital). I still have the basket and the blankets he was wrapped in that he made the journey home in. It was infuriating that I didn't get to take him home in a car seat, you know?
I'm so sorry that this has happened to you. I hope that in time you discover some semblance of peace. God Bless you.....
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Dec 14, 2005 14:22:06 GMT -5
Post by enzosmom on Dec 14, 2005 14:22:06 GMT -5
Sweet Mandy,
I too have been lurking---searching for some kind of comfort--and came across this site and your message. My heart, although weak, goes out to you. My little boy, Enzo, was also born on August 16 with spina bifida. Like you, I found out that our baby had SB when I was 16 weeks pregnant. The first perinatal specialist we saw was not exactly sure what type of neural tube defect our baby had, and encouraged us to terminate the pregnancy. My husband and I had waited a long time to have a baby; we wanted to give him every possible chance. We went out of state (out of our insurance network) and got a second opinion from another perinatal specialist who confirmed that Enzo had spina bifida, but his lesion was low, and he had a very good prognosis. He kicked me hard! My pregnancy too was spent with frequent visits (out of state) to monitor Enzo closely. We consulted with the pediatric neurosurgeon, had an MRI, an were reassured that our baby would walk and probably only have minimal problems. God had given us a miracle! In July of this year, we moved into the Ronald McDonald house out of state to be near the hospital we had chosen in case of labor. We were told that our baby would be delivered possibly a month early by s-section to reduce his risks of complications. We were also that he would be small because of the birth defect. The doctor monitored us closely. Enzo was doing very well in utero. He never developed hydrocephalus. The doctor decided to let him continue to grow as long as he wasn't in distress. On August 15th, exactly 38 weeks pregnant, I went in for another ultrasound. The baby wasn't as active as usual. Personally, I believe he was just running out of room to move he was already so big! My doctor decided it was time, so he admitted us to the hospital for observation with the intent to deliver on August 16. Our precious boy was born at 3:18 pm. weighing nearly 8 pounds! When he made just a little squeak, I knew something wasn't right. They told us that Enzo had vocal cord paralysis due to his Arnold Chiari II malformation. He could breath on his own, but needed a breathing tube to act as a "stint" to hold his vocal cords open. They told us that he might need a tracheotomy, but not to worry yet. We thought we would be going home in a couple of weeks max. Two days after he was born, our baby had surgery to repair the (very small) lesion on his spine. They waited to see if he needed a shunt. A few days later, he began to develop hydrocephalus, so they did shunt him. We were told that the shunt might relieve some of the pressure on the vocal cords, but that it could take a minimum of six weeks to work, if it worked at all. It was so hard seeing him come back from surgery with his little head all bandaged. But we knew that he needed this. Two days later Enzo began developing signs of hydrocephalus again. He was taken to emergency surgery to replace the shunt that was clogged from a blot clot. Five days later, he was taken again to surgery as the shunt clogged again. This time he was given an external shunt. The tube drained CSF fluid directly from his ventricles to a small external pouch. We were devastated. But through it all, Enzo was so strong! Amazingly, we found our strength through him. Ten days later, when the clot was completely dissolved, Enzo got his 4th shunt. Since his vocal cords were still not moving, he also had a Chiari brainstem decompression surgery. He was just a few weeks old and had already had 6 surgeries! We were told that there was not much hope for his vocal cords to move right away, that it would probably take a year or two. As each time, Enzo came back from surgery with his eyes wide open, looking for Mom and Dad. He was just so amazing! The next few weeks we waited. Waited for movement in the vocal cords. Enzo slowly healed from his surgeries and had more and more tests. It was so hard watching him be poked and prodded, but he was so brave! He never cried or complained. He did hate the breathing tube through, and would pull it out if we didn't watch him closely! He was very smart and very sneaky! ;-) While we waited for Enzo's vocal cords to regain movement (6 weeks) he grew strong, with little rolls of fat around his thighs! I felt so good knowing that I was AT LEAST helping by giving him my milk that I pumped every few hours (he had a nasogastric feeding tube)! His little toes curled around my lips when I kissed his feet! He was ticklish! We had faith in him and knew that he would prove everyone wrong. Every once in while we heard him make sounds around the breathing tube---and although we were told he probably couldn't be bottle fed due to lack of sucking capability from the Chiari malformation, we knew better! From birth, Enzo's best friend was his pacifier! Even with all the tubes in his mouth, he sucked his paci! Strangely, following his decompression surgery, he began to develop symptoms he didn't have before. He developed severe central apnea, which we were told was caused by the Chiari II malformation. He now needed pressure from the ventilator to help him breath through apneaic periods during REM sleep. Even if the vocal cords healed, he would still need a tracheotomy until he grew out of the sleep apnea. In addition, he would need a feeding tube inserted in his stomach to prevent aspiration. After much discussion, we knew that the tracheotomy could not be avoided, and that the longer we waited, the longer it would take to get Enzo home. We agreed to the surgery and to the feeding tube (that would be removed if Enzo was able to pass a swallow study). When they looked at the vocal cords before surgery this time THEY WERE MOVING! ANOTHER MIRACLE! He had proven all the doctors wrong! We had faith that his sleep apnea would resolve soon too. Enzo spent a week paralyzed with medication so that his trach could heal. He was so swollen, he didn't look real. Daddy and I were with him every moment. We began doing trach care and feeding him through his g-button on our own so that we could be released soon. In the meantime, he developed sepsis from a pic line that he had had while waiting for the vocal cords to move, in case of additional surgery (trach). Because of his shunt he was at an extremely high risk for meningitis. We were terrified. He was started on "major antibiotics". He pulled through, miraculously, without developing meningitis. And, he DID pass his swallow study! We began slowly giving him a bottle. We were working on being released to go home! Two weeks later, our son got his first "baby vaccinations". The next day, he was uncharacteristically fussy. He cried all day. He had never done that, and we knew something was wrong. We were told that he was fussy because of his shots. I tried to feel reassured, but I knew Enzo would not complain unless he was really in pain. Tylenol didn't help. Around 6 pm, I realized that he hadn't had a wet diaper for several hours. They thought that maybe he was having a urinary problem due to his Spina Bifida. They took blood and urine cultures to see if he had sepsis again. Nothing. By Sunday his stomach was very distended. They tapped his shunt; it was infected. He was taken to emergency ct scan and then to surgery without anyone telling us what was going on. He had fluid in his abdomen. When he came back we were told he had developed peritonitis and that the infection had traveled up to his shunt to cause meningitis. During the night, he had another emergency surgery right in the NICU where they discovered that his bowel was dying due to pressure from the infection. They removed a large portion of it. Enzie fought hard, but we told him it was ok to go. His heart began to slow down as we baptized him. He arrested and I held him in my arms as his heart took its last beats on October 31. We are still not sure exactly what caused the infection; my husband and I suspect the g-button. We are still waiting for the autopsy report. I have never known such agony in all my life. I am so sorry that you have known this pain too, Mandy, because I know exactly how it feels. Suffocating. Unbearable. Somehow though, your story brought me some comfort. Knowing that someone else really does know what I am feeling because she has experienced something so similar. I hope that we can talk more together. God bless you for being so strong and doing everything you could for your baby. For whatever it's worth, you are not alone in your guilt or your sadness. Much love and light to you, Tamara
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Dec 14, 2005 16:03:31 GMT -5
Post by myheart on Dec 14, 2005 16:03:31 GMT -5
My prayers for Mandy and Tamara....May God bless both of you and your families. You have both been through so much agony....my sympathies to you both....The rollar coaster of emotions you have endured...I know your babies are in heaven now..they are free of pain..my sweet boy is there to. Somedays that is the only thing that helps me survive, knowing he is not hurting anymore. I hope you lean on each other, it seems like you would really understand each ones tramua...I wish you both peace and comfort..
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