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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I'm sure many of you are wondering what has been going on since Walt's sleep study, huh? Well, a lot actually.
For one, he spent a couple of nights in the hospital for dehydration. For about 3 days, he ran a low grade fever. Then, on day 4 he hand a temp of 103 and was really lethargic. He was either laying down, or asleep. I took him to the ER and they tried to get a urine sample by catheter and got nothing. He was that dehydrated! With his history, he was admitted to the hospital and pumped full of fluids for two days. On the last day, the vein gave out and his hand got huge thanks to the fluid leaking into the tissue. Swollen hand=pain! He was pitiful. He had already been stuck so many times for an iv he was traumatized. He was terrified of anyone who came close to him in scrubs or a white coat.
Waltie loves playing with these two specific toys. It's a Sophie giraffe from France, and some Manhatten Toy beads (top picture). He loves them! He got them for his 1st birthday.
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I am in complete shock that my littlest baby is 1 today! I am in deep emotional disbelief. It seems like just yesterday that he was being born. I'll never forget that day. I had been on bed rest for 2 weeks for high blood pressure. I was at home, my mom was visiting and helping take care of the kids, Kenneth was at work. I got a call from my obstetrician. The actual doctor called. Not the nurse. It was important, I got that quickly. He told me that my last blood work came back with elevated levels and they were going to have to do the c-section TODAY!!! I couldn't believe it. He asked if I had eaten anything and luckily I hadn't because he scheduled it right then, over the phone. The next thing I did was call Kenneth at work. This would be the most unplanned birth that we have had. All the other kids were just walk into the hospital, sign up, wait at the triage, get a room, have the csection... None of this "OH MY Goodness, we're having a baby today! What???" But, I have to admit it was fun. We got ourselves together and proceeded to the hospital. Even though he was only 36.5 weeks, I really hoped he wouldn't go to the NICU. I was scared, excited, scared, and hopeful. And scared, yes mostly scared. They rushed us in pretty quickly and very soon, Walter had been born! The first thing that I noticed was that he was a little blue. My worst fear was coming true again. There was going to be another NICU visit. My next realization was that his toe was overlapping the others. I don't know why I noticed that, but I did. I honestly hoped it was just a temporary thing and happened because of his position in the belly. I hate that I had that thought. But, really, it was the beginning of bad thoughts for me. Not too long after that we discovered that Walt had a genetic disorder. He was missing part of his 4th chromosome. While I wish he had that missing part (because it would make things easier for him), it's made him who he is today. One year later and I love his toe. I love his pinky that won't bend. I love his overbite smile. I love his recessed jaw and small chin. He is perfect. God made him perfect for us. I am so blessed to be his mom.
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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.
Today was a long day. The middle kids had a field trip with their preschool and Amelia had a field trip in the afternoon with her Daisy troop. This morning I woke up and took a shower so that I looked halfway decent. I don't know how the other moms at this preschool do it, but they always look amazing. Very intimidating. So anyway, I had to wake up early to shower, then stop that routine so that I could get Amelia ready for school. There were some forms and a note that had to be sent to her teacher today so I had to get that together. After a quick breakfast (yet another thing that I feel guilty about- how do other moms make their kids a huge breakfast in the am?) Amelia left for school and I went upstairs to continue to get ready. After that, Walter was awake and needed to eat. He ate super slow today, or maybe I was anxious about getting to the school on time. Didn't want them to leave us! It was cold today so everyone required hats, coats, and mittens. We went to the holiday concert with little man in tow. They all did great and loved everything about it. The high school orchestra puts on a great show with Christmas songs and characters! They had Jessie and Woody, a prince and princess, a fairy, elves, Mickey and Minnie mouse, a banana, and even Santa! I had enough time to run to Chick fil A, grab lunch for everyone, then get back home in time for Georgia's speech teacher. She is doing so well in speech! Her therapist says she is completely done with the K and G sound, it's even in her spontaneous speech. They are beginning to work the th blend and even that is becoming easier for Georgia. She loves her special time with Ms.Patty, it's been great for her. Anyway, after therapy, we all took a little nap while we waited for Amelia to return from her field trip. She went to the hidden pond with her Daisy troop and apparently touched a real snake! Highlight of her day. Then it was time to prepare dinner, wait for daddy to come home, and clean up our messes.
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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