This is my crazy life. Here are all of us, in front of the computer, being dorky! This was when Walt was little, but you get the idea. I have a house full of little crazy ones! But I love it.
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Walter is doing really well! He is growing and growing, wearing size 18 month clothing! He is still on his 28 calorie/ounce formula which is probably why he is gaining weight so well. He is super tall, just like all my other kids were at this age. We recently had a swallow study done per the speech therapist's request. We figured he may have some sort of structural issue which may explain why he's having trouble eating solid foods. However, he does not. It must just be sensory issues which is great because we can work on this problem! The other thing we found out is that he was actually aspirating on his formula and nectar consistency. We had no idea!! Aspirating means that some of the liquid is going into his lungs and can really do damage to them. We had to start thickening his formula to honey consistency using rice cereal. He's doing ok with the change in food, he totally rolls with the punches.
He is still getting over a major illness which actually put him in the hospital for overnight fluids and observation. He had pneumonia and a sinus infection. Antibiotics have helped him, but he is still recovering. Two days later we found out that he had developed a double ear infection WHILE taking antibiotics. Whew! When will it stop? Seems that these 4q deletion kiddos have a harder time kicking illnesses. Prayers for him would be appreciated.
He is now rolling over, sitting up, army crawling (or scooching as I call it), sitting up from a lying position, and getting to his belly from a sitting position carefully (instead of just falling over). He will be 1 year old in a matter of days! I can't believe how time has moved so quickly! I can't remember not having Walt, it's like he's been with us forever! Happy Birthday little Walter. We love you.
Hi everyone. I realized that I haven't written a full update on Walter lately. So many things have been changing and working in our lives with him. So excited to share all the things going on.
Walter is now 8 months old!! Time has literally flown by! He has 6 teeth coming in all at the same time. Four on the top and two on the bottom. The first one to come in was the one to the right of his front teeth. In typical children, the bottom two teeth are usually the first to come in. However, I read that with 4q deletion children, they tend to come in in a somewhat random order. So, after the initial breakthrough of that tooth, we saw that their were 5 more on the way a few days later. He has been a champ through it all though. No midnight trips to Target for Tylenol and Orajel! He has been seemingly pain free with teething so far. The one thing that we notice more now that he has teeth is that his Pierre Robin sequence shows more when he smiles. If you remember, Pierre Robin sequence is his recessed chin, small jaw, recessed tongues, etc. It's what affected his feeding in the beginning. When he smiles, his lower lip goes behind his teeth. I think it's absolutely adorable. He has an engaging smile.
The BIG HUGE news is that last month, he had his gtube removed permanently. We had not been using it for 3 months prior to it's removal. He was taking full feeds all on his own (usually a full 8 ounces) and his gtube doctors felt that he would be okay without it. Technically, they said that all they had to do was remove it and the wound would heal all by itself within days. However, that's not what happened in our situation. A week went by and every time he would eat, it would all leak out. I was upset because I knew he wasn't getting his nutrition or medications this way. After 2 weeks, we had an appointment with the surgeon who did the procedure. We thought that they would be numbing the site and stitching it up, easy. But when the anesthesiologist visited us, I was confused. They were talking about intubating, and going to sleep and all these things that I was not prepared for.
I’ve been pregnant 6 times in 6 years. I’ve had two miscarriages, and 4 live births. 3 out of those 4 births, had to spend time in the Neonatal Intensive Care Unit. This is just overwhelming for me to think about. It naturally makes me wonder what I had done “wrong”. As if normal mommy guilt wasn’t enough, right? My first child was born on her due date and was fine. My second child was a scheduled cesarean section at 38 weeks (they told me that was considered full term). When she came out she was having trouble breathing and was transported to the NICU immediately. She was intubated and given surfactant to help her lungs work properly. She had to have a cpap, which delivered oxygen directly to her airway. When I asked the nurse about the severity of her condition, her response to me was “Well, if she had been born 30 years ago, she wouldn’t survive”. That really shook me to the core. I was angered and scared by what she said because she showed no compassion whatsoever. I do want to say that that was the only time I ever had a bad experience with the NICU nurses.
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Walter's Birth Story - Part I
I wanted a fourth baby, my husband was a little unsure. I was so happy with the three we had, but there was a little something more in our future. I could just feel it. It took much longer than normal for me to get pregnant, six months when usually it took around 2. I took the test without my husband knowing because I didn't want to hide my disappointment if it was negative. I was over the moon when I saw the two pink lines and immediately went to share the news with him. He told me later that when I gave him the news, he knew he was ready. I wish I had known that because it would've relieved some of my guilt later on.
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