Noah Update

Noah went back to the pediatrician in Waterloo last Monday and his breathing was not any better, so he referred us to Iowa City. We went to see that doctor on Friday. The good news is, he does not have Cystic Fibrosis which was mentioned to us on Monday. He was tested as a newborn and they had those results when we went for our visit. So that was a relief. We still don’t have any idea what is really going on, but we have narrowed it down to a couple of different causes. Most likely it is caused by having been a preemie. When a baby is still in utero, they have cells in their lungs that are usually gone by the time they are born. Since Noah was born early, his body did not have time to get rid of those and he still has too many. So now, he is working extra hard (breathing fast) to get them out. This would be great because he will outgrow it as he gets older. They repeated another chest x-ray and he still has signs of RDS (Respiratory Distress Syndrome), most severe in his upper right lung. He is now on a higher dose of oral steroids for 10 days. He was supposed to take double his old dose, twice a day, but he started having side effects. We were told if those developed to stop the evening dose and give it to him once a day. We didn’t know they were side effects, but he had bright red cheeks and was really cranky again. Well, the cheeks were a side effect, but so is cramping, so we think that’s probably what was happening. If he is not better in 10 days at his next appointment, then we will go to the pediatric cardiologist to see if it is possibly congenital heart disease. We really don’t think it is that, but the doctor wants to be positive he doesn’t miss something. He has a slight murmur, but he believes it is a flow murmur, not a structural one. I had a heart murmur and Austin had a heart murmur and then after it closed, developed a rapid heartbeat and is on medicine for that. So, technically, it could be that, but that is still pretty out there in theory-land for now. And his blood pressure was elevated when we went, also, so that’s another concern. We go back Monday to decide our next step. The babies were baptized yesterday and it was beautiful. Nicole Reynolds sang for us and did a fabulous job. We wanted her to sing “Give You Wings,” which is a hard song to sing, but she nailed it and it was awesome. I got the chills while Pastor John was baptizing them and during the song. You could really feel the presence of the Holy Spirit and that is an amazing thing when it happens. It was just awesome! They were so good, too. Noah cried a little bit as he was being baptized, but not near what I thought he would!We go to tour the Middle School and meet the counselor and teachers tomorrow with Austin. We are doing this tour, then the orientation, then he will ride the bus once or twice, then hopefully another tour during the school day and several during the summer. This will hopefully help Austin’s transition go a little more smoothly. It is already difficult for him and he has been talking himself into it already. It seems weird to think that he is already old enough to be in middle school and I will not have any kids at the elementary next year! Aidan is also starting preschool next year in the afternoons three days a week. I don’t know what I will do with myself! I suppose by then Nathanial, Ethan, and Noah will be keeping me even busier!Nathanial, Ethan, and Noah are all smiling away now and talking a lot. It is so awesome to watch their development and is much faster than I realized. I can’t believe how much they are already growing!

Doctor Visit for Noah

Tuesday morning was pretty eventful again at our house. When Noah woke up, I noticed that his lips looked pretty purple. After he ate, he was panting even worse than usual (he always pants) and his lips were definitely purplish-blue, with the area surrounding the lips being blue. Since he was still breathing OK, I called his doctor. He had us go to the ER so they could check his oxygen levels and transfer him to Allen if that was necessary. I prayed the entire way there and was very scared of what was going on, and thankfully, by the time we got to the ER his oxygen was much better and he wasn't blue anymore. His oxygen varied while we were there, but mostly stayed up with only a few dips, so we repeated his chest x-ray and did blood work. Everything looked good with that, so at least that was good. Troy was thankfully on call, so Noah saw his own doctor and someone we trusted. And thankfully he was never transfered, either. We still have no clue what is going on and why he continues to not be able to catch his breath and now is turning colors that are not good at all. So Troy and Dr. Lynch spoke and they decided that since the Nebulizer treatments are not working, we will not continue them for another week. Noah was given a prescription for Prednisone (no idea how to spell that) and we will try that until Monday. Then he will see Dr. Lynch. If that isn't working, then we will go to a specialist in Iowa City. With stopping the nebulizer and starting the oral steriod this week, we are one week closer to Iowa City if we have to do that. It was a very scary situation that I pray never repeats itself and I hope we figure this thing out soon. Noah is much happier today, which is good. He was very fussy the last few days and noone but me has been able to get him to calm down at all. I have been able to get him to at least stop screaming, but even then, he sometimes won't stop crying, so clearly he is uncomfortable. But already this morning we have had a conversation and he has smiled at me several times (with smiles being few and far between since Monday morning, that is a positive sign). Please keep Noah in your prayers that we are able to figure out what is going on and he starts to get better.

Crazy Day

We went to Dr. Lynch on Monday morning for Noah. We have some answers thankfully. Noah’s oxygen level while in his office was 92%, which Dr. Lynch said is not good. It isn’t hospitalization level, thankfully, but it needs to increase. I know when he was in NICU the alarm would sound at 85%, so it is better than that. Dr. Lynch thinks that it could be one of a couple of different things. So we are treating the easiest thing first, because treatment isn’t as difficult. He believes it could be that he is refluxing into his lungs, causing him to have these problems. So, Noah is to remain on the Prevacid, and we are also to thicken his formula and give him a Nebulizer treatment twice a day with Pulmacort. We are giving that two weeks to help. If it doesn’t, then we move on to step two, which would be an oral steroid and give that two weeks. If that still doesn’t help, then we move on to his other thought of what could be wrong. Dr. Lynch said that it could be caused by a congenital defect in his lungs that wasn’t caught at birth because he was a preemie. He said they could have believed that his breathing issues at birth were entirely caused by prematurity and it might not be that. Noah has done extremely well with the treatments. Last night we did it while he was asleep and that worked well. Today, he wasn’t going to sleep on time, so I tried it awake. He did awesome! He actually even tried to put it in his mouth. I was so relieved that he didn’t mind it at all. Austin had to do it when he was about 18 months old and he screamed through it, so I was expecting that. It was a nice surprise that he doesn’t mind! Also he looked at the rash on him and talked with Troy later in the day. Troy called and said it could be cradle cap on his face, instead of his head. He had some name for it, but again, I don’t remember names of things well these days. So we are treating that with hydrocortisone cream and Aquaphilic cream twice a day. So hopefully that will help Noah with that part.It was an exhausting day. We were at the doctor for three and a half hours, then we had to run all over the place to get Noah’s prescription and Nebulizer. Austin had his DARE graduation and Boy Scouts last night. And just as we were about to fall into bed exhausted, Aidan started screaming in his room. I checked on him and he said his hair was stuck to the bed. Both Austin and Aidan talk in their sleep, so I thought that was what he was doing. I told him to wake up and I would show him he was fine. Well, he was awake and he was stuck to the bed. He had taken silly putty to bed with him and then fallen asleep on top of it. We got him unstuck from the bed and tried valiantly to wash it out of his hair, to no avail. We ended up cutting it out. He has quite a nifty bald spot on the right side of his head now…thankfully he needs a haircut before the baptism and he has two weeks for it to grow out, or I would REALLY be throwing a FIT. Needless to say, the Easter Bunny will NEVER be bringing Silly Putty to our house again!

Two Month Well Baby

Nathanial, Ethan, and Noah had their two month well baby visit today. They are all doing really well. Nathanial weighed 9 lb, 1 oz, and was 21 ½” long. His head was 14 ¾”. Ethan was 9 lb, 2 oz., and was 21 ¼” long, with a head circumference of 14 ¾” also. Noah was 11 pounds exactly and 21 ¾” long, with a head circumference of 15 ¼”. They are all growing very well!Noah is being switched to Prevacid for his reflux…the Zantac isn’t working at all. He is also going to see a pediatrician in Waterloo Monday morning for his breathing. He still breaths rapidly and his chest sucks in when he is breathing. And he still kind of grunts and wheezes. Plus occasionally when we are feeding him, he will stop breathing altogether. It’s easy to fix that part…we stop feeding him and sit him up and wait for him. So we are checking things first with the ped, then if they feel it necessary, they will send him to Iowa City to see a pediatric lung person (forget, but pulmonary something or other). So at least we will know what is going on there. We are not sure what it is on the back of Nathanial’s leg. Dr. Troy doesn’t think that it is a birthmark, so we are just going to keep an eye on it. All three babies had what looked like a rash on their cheeks and shoulders. We found out that it is just baby acne. Aidan had it and I thought only breastfed babies get it, but I guess not. Glad to know it isn’t anything serious, but I didn’t think it was when it showed up on all three of them.All three babies got Prevnar, Pediarix, and hib shots. I refused the rotovirus vaccine for them. I just really don’t feel it’s necessary and have a hard enough time with vaccines that I don’t want a frivolous one given. So, they won’t get that. Noah gave me his first real, large grin this morning!!! I was so excited! Then he had a very long conversation with me this morning also. He was in a really happy mood and was just talking away. So we are finally getting some personality on him. Nathanial and Ethan will coo occasionally, but it seems more like an accident when it comes out. They still grunt to communicate mostly. But it is coming.Last night was another blissful night. Nathanial was up at 3:10 a.m. and then slept until 8:30 a.m. Noah was up at 5:45 a.m. Ethan didn’t get up until 7:00!! Noah has slept all week all night long, Ethan and Nathanial have taken turns being up. One night both were up at the same time, but that was it. So we are getting closer to all sleeping all night long, also! Yay!!I'll update again after Monday's appointment.