Joseph, my first miracle baby, was born at 35 weeks with a birth defect called Gastroschisis, where all of his small and large intestines and part of his stomach were outside of his body. He has endured 6 surgeries and multiple complications and despite everything, he's the happiest baby I have ever seen and is always smiling!
Christian, my second miracle baby, was born at 33 weeks. Because of his prematurity, he suffered a grade 2 IVH (bleeding in his brain) and we are not yet sure how this will impact his life and development. Despite this and some other premature issues, he is thriving!
Christian, my second miracle baby, was born at 33 weeks. Because of his prematurity, he suffered a grade 2 IVH (bleeding in his brain) and we are not yet sure how this will impact his life and development. Despite this and some other premature issues, he is thriving!
Sunday, January 15, 2012
More worries
Joseph had his appointment with his GI doctor on Wednesday and I shared my worries with her: for the first two weeks since switching Joseph to the new formula, he was golden. Then week 3 he started to have diarrhea, and then week 4, the mucus started up again. He would poop up to 8 times a day and it was all liquid and mucus. Joseph seemed to have developed an allergy to this hypoallergenic formula. My worry is that he is going to develop an allergy to any food item he is exposed to and she seemed to think along those same lines. He's still not on any solid foods. She had me switch him to a prescription formula called Elecare and we postponed his procedures and intestinal biopsy until January 31st. We started the Elecare on Wednesday and I have yet to see any improvement - when we had switched him to the previous formula, the improvement was almost instantaneous. He just seems to keep getting worse; the past couple days, his reflux has gotten so bad to the point where he chokes on it and it reeks of a very strong acid. I can tell it's burning him because he'll twitch and make faces. It's different from his normal spit-up. They all day today, his poop was dark green and sticky. This evening, he started having blood in his poop. I called the GI on-call and he seemed to think that he can't have a reaction to the Elecare and it was probably left over from the previous formula and that I should just keep an eye on him and he'll get Joseph's GI doctor a message for tomorrow. I'm not so sure I agree with him, but I'm just going to have to sit with it. Joseph's acting fine and doesn't seem to be in distress at all; I'm just worried because we haven't ever actually seen blood in his poop until the last two this evening. I really hate this awful feeling of worry that is just twisting my stomach into knots. There's nothing I can do to help my baby boy, I'm just watching him get worse and worse. I have to wait and see what his doctor thinks tomorrow. It's out of my hands and this is a difficult feeling to sit with. I keep trying to remind myself that it may be out of my hands but God still has his hands all over it. I just can't wrap my head around why my baby must suffer like this. Whenever I start to wonder why God allows this, I am reminded of the answer I received so many months ago: We had just brought Joseph home from the hospital and I was still having a difficult time processing through all the trauma of what we've been through with him. I was lying awake, just wondering why God would allow such horrible suffering to an innocent baby. I was reliving all the horrible pain he was in and I could recall offering up all of his surgeries and his suffering. I was overtaken with a sense of calm understanding and I just knew the answer, as though it had been whispered to my heart. God allowed this to happen to my son so that his suffering could save souls that would have otherwise not made it to Heaven. Now each of these souls who are rejoicing in Everlasting Life are devoted to praying for Joseph and guarding his soul for all his life. It's still so difficult to accept my child's suffering, but I do find peace in knowing that God has him cradled safely, regardless of what happens.
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Wow Sarah. You are such a strong and great mama and Ed is a wonderful father. Given what you all have been through, to normal people it would have been an excuse to give up in life but you guys have turned it around and have given God the glory. Thats powerful and thats what will keep you going through each day. Please give Joseph kisses and hugs for me. Take care. Love you all!!!
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