Every Child of Mine, Really Every Child

Thank goodness for Primary Children's hospital. Jacob has been twice, the first time at the age of 18 months we rushed him to Primary's after being at the ER in Heber for 3 hours and they released him because they couldn't get an IV in him and they had no idea what was wrong. I thank that ER doctor for admitting he was stumped. This is when we hit the nasty dear going down to SLC. Jacob was diagnosed with intussusception, or a telescoping of the intestine. He was in a lot of pain and the treated him with a air enema. My mom and Brian were with him and they said it was a sight they will not soon forget. Poor Bubby. Jacobs second visit was a 4 day visit when he was diagnosed with diabetes! That description will have to be a different post!

Aiden was admitted around the age of 2 for a 2 day stay. Poor thing he was so sick. He had been vomiting for almost 16 days but acting fine! Well fine until the day I decided to take him back into the doctor for a revaluation. She said we should take him down to Primary's. He had been fine, but by the time we got to primary's he was so sick. That ended up in a 2 day stay, and some pretty scary diagnoses, but ended up being that food doesn't travel into his intestines as soon as it should and also a bad case of reflux.

Jack had tubes put in his ears at primary's. His surgery went really well but we should have done it a lot sooner! oops!

Now it is Charlee's turn. While Charlee was in the hospital shortly after she was born she had a few different breathing problems. One was "flaring" - when her nostrils flare during breathing, showing increased work effort. Two "Retraction" - The muscles in her chest under her ribs and at her neck are visibly seen going in and out much more deeply than usual. Because these things were going on and a few other things she had a C-pap machine used on her, she was put under a head box, and was put on oxygen. I posted about this before but I also noticed when she got home that she continued to Grunt and squeak a lot. In fact I started calling her "toad" because of the grunting and "little squeak." The grunting reminded me of what a little puppy sounds like. I now know that her grunting at the end of her respiration is her trying to open up blocked airways.

So Charlee is under the lights at 1 week old and I remember that when Jack was under the lights (only a few days old) he would QUIETLY stop breathing, for a long time, then he would start up again. This was different she is noisy. So at her appointment I brought it up to my doctor, he asked me questions that I didn't really know how to answer and she (of course) was not doing it when we were in the office. He told me (like with Jack) that it was normal and I said okay!
It came and went, I thought some of her breathing problems were from being extra hungry or maybe a stuffy nose. But I could rarely calm her by nursing her and she never had a runny nose or any signs of congestion. I would watch her neck to see if she was still retracting and at times she was. Nursing was and still is really hard. When she is having trouble she acts like she is choking and pulls away making her chocking noise and grunts etc... this makes it really hard to nurse her. When she was about a month old I really noticed that she was not a quiet baby she was loud and it was more often and for longer periods of time. My Mom and Jody even commented that they felt like something was wrong with her breathing. I again told my doctor about this and decided that I needed to make better notes of when she does it and what exactly she is doing. She not only was grunting but also she would make this hi-pitched squeaky noise, to some it sounded almost like hiccups, or like a chipmunk. I told her doctor again and again he said she was just a noisy baby. Other people now were starting to notice it now too and Brian was starting now to worry. He hadn't really noticed anything, but I told him that it was happening more often. Last Thursday she had one of her really bad attacks of strider (what the noise that she is making is called) and she seemed to be having trouble breathing. So I called our Doctor and he said bring her right in. I also called his cell phone and left a message of baby squeaks and grunts on it. Then I second guessed myself and called them back to cancel and while on the phone she stopped breathing so I took her in. I thought at least they could tell me if her ear infection had cleared up.

Dr. Larsen could hear it! I was finally able to explain what was happening better because it had just happened and it seemed to be severe. It was a noise on the intake of air. When she stops breathing it is like she has an obstruction. She gets really panicky and thrashes around trying to get a breath. He ordered a series of tests to be done at Primary's and I called Monday to schedule. Luckily Brian was able to come home and I took Charlee down on Wednesday. I was not able to feed her after 6 a.m. and we arrived at 10 a.m. we didn't have the test until noon and she was so hungry she would not hold still even with anesthesia. They gave her an extra dose and her eyes shut but her body kept moving, so they gave her another dose, still moving and then again another dose. She finally held still. I at this point am a bit nervous because they didn't want to give her the second medicine unless they had to because it is a breathing inhibitor. Yes the medicine that they had to keep giving her so she would hold still for the few pictures they needed to take. She held still for about 3 min. and then was moving again. Poor Charlee she had no control over her body. She couldn't keep her head up or still her arms moved all over, she couldn't open her eyes or suck to nurse or to drink a bottle. She was mad, drugged and hungry.

To sum up it was the longest 5 hours I have had with a baby in a long time. Our nurse finally got a tube and stuck it down her nose to feed her. She pulled back on the syringe to make sure that she saw stomach fluid and nothing but air came out. I am so worried at this point and the nurse says with her crying this much she has a lot of air in her tummy.

I worked in a vet clinic and I remember how easy it was to tube a dog and go down the wrong tube into the stomach instead of into it's lungs. I was worried she was in her lungs. Again the nurse pulled back on the syringe and nothing but air again. So with Charlee screaming, a finger on the tubing to hold it in her nose she listened to her stomach and pushed a little bit of air into the tube and she then said "oh yea" it is in. Charlee screamed more, then we were able to syringe by syringe fill up her little belly. I took a long time but she finally stopped crying. I was so worried that she was filling up her lungs with formula. But it worked and it was the best thing that she could have done for her. I thank that nurse for getting an order to do that so she wouldn't have to be so miserable.

We received her test results back today and everything (at least that was potentially deadly) was ruled out. Dr. Larsen said now that we know it is not a split Aorta or a major artery problem we can refer you to an E.N.T or we can just watch her breathing. Making sure that if she gets a cold or anything else that might make it worse we get her right in to check her O2 stats. I did mention to him while we were at Primary's she had a pretty good attach of strider and her O2 stats went down but not much. So we felt very good about that. So I think for now, unless it gets really bad again we will just keep a close eye on her breathing. Here is a cute video (short) of her the morning of her appointment with Brian. I dressed her in her halloween bones onesie, she is so cute.