We had another visit with the surgeon yesterday and she was pleased to see his progress. We have our last surgery scheduled for March 14th with prep on the 13th. It will be nice to have things normal but I am not looking forward to the process. Since his last surgery a nurse, physical therapist, clinic visits, etc have seen him weekly… He is doing extremely well and is a very strong child. I pray all goes well for this next step. I know his muscles will suffer a bit but the PT is not worried because of how strong he already is going into it.
We had him baptized this past Sunday. It was very nice, almost a milestone we never thought we would reach. Big party! It is hard to believe we are coming up on his first birthday in June. Well four months away but considering what we went through. That will be a huge party!
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Once again, the doctor admitted my son to the hospital. This time nothing serious just a rash around his ostomy site. When the doctor saw how severe it was, she immediately started working on getting him a room. This was yesterday.
The aggressive treatment was successful, already! Today there was very little sign of the rash and all things look like he will be coming home tomorrow. Thrilled, yet still sad to have him away from us. We spend as much time as possible with him but just cannot be away from our other three children either. They deserve a little bit of normalcy too.
Either way I will be getting him tomorrow and he will be sleeping at home tomorrow night – and waking me up at 3am to have a bite to eat, he and me. The downside to this is now that his rash cleared up, surgery number three is right around the corner.
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Five days after his discharge from the NICU my son had what we considered a normal day. Nurse visit went less than perfect, but his 5:00 feeding he was not interested. I tried at 6:00 with a bottle when I got home from work with no luck. I decided to call the nurse who explained it is not uncommon for an infant to skip a feeding after a hard day. 8:00 came and still nothing so I called the doctor. While waiting for a return call my panic set in. I went though the roof when I picked him up and he was completely limp. CPR training kicked in, color was good but I “flicked” his ankle anyway. He started crying! We decided to take him to the emergency room at that point. My wife packed him up in his car seat as I was walking to the doctor. I spent a long night in the ER with him going through many x-rays. Finally, the next morning they found he had an obstruction in his small intestines. They scheduled surgery for thirty minutes later. The feeling of helplessness I had when I handed my little boy over to the nurse and watching her take him away will never leave my heart. Then came the long two hour wait for the word of how the surgery went.
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So much has happened with so little time for writing here. My son was born late June. He has a multitude of issues but they are all correctable. Twenty-four hours after his birth he had his first surgery then six weeks later another emergency surgery. We are waiting to schedule surgery number three. A few months later and number four will come then number five. That seems like a lot to ask of a child but I know there are others out there with even worse issues.
I know some may think that five surgeries there must really be something wrong. I guess I need to step back a bit now. I cannot even remember if I wrote about this yet but here it goes (I will try to finish in the limited time I have).
November 2005 we found out that my wife lost on of twins (six weeks into gestation). A slim chance of surviving gestation faced the remaining twin, since blood from the other covered him by about 75%. Time went on and all seemed to be going okay. Christmas time came and the doctors found a systic hygroma. Two specialists found the same thing and gave the baby zero percent chance of living another month. The doctor told me he would go into heart failure and die. After much grieving, many thousand prayers both by us, friends, family, and even strangers around the world we decided to get another ultrasound so we could remember our little child. We did not expect the results neither did the doctor. There was no evidence of the hygroma that condemned our child. Nobody believed it…
I am going to skip ahead a bit here since I am pressed for time. We prepared for several possible syndromes, mental issues, and more that I would rather forget about. June came around and he was born. The Neonatologist still was talking about syndromes (Nunan’s to be exact). After twenty-four hours I saw my third son (fourth child) naked for the first time. Do not ask why, do not ask how but the first thing I noticed shocked and frightened me. I looked up and said; “shouldn’t he have an anus?” The panic that set in is indescribable.
Anyway, another twenty-four hours later, he had his first surgery and an ostomy was put in. He then spent four weeks in the NICU recovering and relearning how to feed. We finally took him home. We did not fool ourselves thinking we were done with the hospital, we knew there were more to come. Unfortunately, we did not expect what happened five days after he came home…
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Two weeks ago we found out the cord has only two vessels (normally there are three). This raises concern for other issues, heart problems, kidneys etc. We had a fetal echocardiogram on Friday and all indications were the heart is healthy and perfectly formed. Each ultrasound gives us more hope that the baby will be perfectly fine.
Through all the support and prayers, we made it through a very difficult time. However, friends of ours did not receive the same blessings as us. One friend lost his baby at 20 weeks gestation, another lost her four year old on his fourth birthday from what appeared to be just a cold. Because of these tragic events those families could use some prayers as well (who couldn’t) to help them through these difficult times.
A photo of our friends son.
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Late December 2005 we found out our baby only has a 2% chance of living another month and 0% chance of making it to term. Through kindness, hundreds even thousands of people praying for us, dinners being cooked and delivered, donations of food and even toys for the children for Christmas we tried to come to terms with the fact we would not be able to hold our fourth child. We began preparing for the worst. I cannot tell you how it feels to realize you will not have the opportunity to raise your child. To hold him or her and protect them the way only a parent can. Everyone said, “God will take care of the baby”, but my response was “But why won’t He let us?”
We had a scheduled ultrasound for yesterday (1/3/2006) (scheduled before we knew of any bad news). We decided to go because we need photos and possibly video to keep our memory alive years from now. After arriving, the receptionist explained that our appointment had been canceled (probably because they expected us to terminate). Anyway, they found us some time and we went in.
The nurse started the ultrasound and everything looked as expected. At this point the baby is “fine”. Heart beating strongly, moving around and even playing with feet and cord. However, we still knew our baby has cystic hygroma. Cystic Hygroma is caused by a build-up of fluid that starts at the neck and if bad, goes to the face, arms, hands even to the feet (our baby’s diagnosis indicated the hygroma extended into the feet). At the last ultrasound, this hygroma was 8mm (if I remember correctly). Also another specialist found an enlarged bladder, giving an even grimmer prognosis.
Yesterday the hygroma was 1.4mm – Normal being anything lower than 2mm. No evidence of any enlarged bladder in fact all organs were formed perfectly. Heart rate was perfect. The nurse and the specialist Doctor said, “If you were never here the last time I would tell you have a perfectly healthy baby”.
We are not “out of the woods” yet. We still need to get an amnio where they will remove fluid around the baby to test for chromosomal defects. If this comes back negative (no chromosomal defect), this baby will have been touch by God and all the love shared by those literally around the world praying for us. I hope I will be able to add happy news as the days go by.
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