New Pictures

Just wanted to let you all know that I added some new pics to the slideshow. Hopefully, I can be better at staying up with this blog. It's been hard to keep up with while I've been adjusting to this new life. If I get more days like today, then I should be able to post more often. But no promises!!

Also, I wanted to share this picture:

From Random Pics-Jaxon

Mylie weazled her way into our photo session. I had Jaxon on my lap and Mylie jumped into the picture as I snapped it. I thought the whole picture was hillarious, especially Jax's eyes. I don't think I could capture this picture again if I tried.

Acid Reflux

I have a brief moment to add a quick note. Jaxon has been asleep since 9:30am, which is a record. So, I am probably pushing my luck by starting this post now; but I have to do so much in such a short amount of time. Here lately he has been very clingy; wanting to be help 24/7(literally). At night, I sleep sitting up while holding him. I don't like doing that, but it's the only way I can get rest. Eric is a big help too, and holds him on occassion, but he has to get up and go to work.

Jaxon is doing well, besides having trouble with severe reflux. He was on a four hour feeding schedule when he came home, and it was wonderful, but I think he was taking in too much milk at each feeding and then spitting it all up. So I ended up changing him to a two hour feeding schedule. Now, I feed him a little over half as much, every two hours. This technique seems to be helping him. It hasn't eliminated the problem, but at least he is keeping more down. His doctor thought he might have Pyloric Stenosis, which is the narrowing of the opening from the stomach to the small intestine and results in severe vomitting; however, he had an ultrasound of his belly and we were able to rule that out. Now we just take it one feeding at a time and hope he stays calm and the food stays down. Also, because of the reflux and spitting up, he hasn't gained the appropriate amount of weight (only 1 ounce in 3 weeks). If he doesn't start gaining more we're looking at having to put him back in the hospital to get a feeding tube.

As for me, I spend almost all day either feeding him, holding him, preparing to feed him, and/or pumping. I knew this was going to be an adjustment but I didn't plan on the reflux to be such a major ordeal. Alright, well I'd like to add more but the little guy is calling. I'll post more pictures soon.

Love you all.

Welcome Home Jaxon

Ok, so I'm going to make this quick. We finally got to bring Jaxon home. He left the NICU Monday night at 8pm. He has been doing very well. We are all three trying to become accustom to this new life. And it is a crazy one!! I thought I was ready for this and that unlike most moms I had a little more time to heal and really get prepared. Well, I didn't really realize how hard and scary bringing a new baby home is. There is literally NO time. He is on such a strict schedule that almost every moment of the day is planned out. And I've been trying for 3 days to squeeze in a nap, like right now would be good, except I still have pump milk and prep his meds for his next feeding. Anyway, the gist of this post is that we are all happy at home and doing really well. Yesterday, we had a visit from his Home Nurse, Jan. She said he is doing great. And today, we visited his pediatrition, Dr. Fox. She was very pleased with him, as well. Everyday seems to get a little bit easier than the day before. When I find another free second I will try to post something a little more robust.

The Last Night

As of this moment, we have the go ahead to bring Jaxon home. The only issue that may arise is that the doctors are changing shifts; so if Dr. Prazad decides she is not comfortable signing off on Jaxon's release, then we might have to wait for Dr. Paidisetty to release him tomorrow. Hopefully Dr. Prazad won't have a problem with signing his release forms. She has overseen Jaxon's care on multiple occasions but she only works part-time, where Dr. Paidisetty and Dr. Stich work full-time; therefore, she may be a little skiddish to let him go since she hasn't been at the NICU for a few days. I'm crossing my fingers and praying as I write this.

Last night, I spent the night with Jaxon for the first time. I had been wanting to do this before he came home, but for whatever reason I just hadn't made it happen. So last night I just bit the bullet and stayed. To my surprise, it wasn't bad at all. He did really great; sleeping for a straight FOUR hours from 1am to 5am (in his swing- I'm glad we made that purchase for home!!). It's not my normal sleep habit; but for a 56 day old preemie baby, I'll take it. My only concern is trying to fit in feeding him, pumping, and sleeping all in the same night. Just feeding him and pumping became a 2 hour chore last night. If he doesn't end up sleeping 4 hours every night, I may not get a wink of sleep! If that ends up being the case, be thankful most of you live hours and hours away!!

Well, I better get off of here. I have to get ready for our big day and then go have all SEVEN of Jax's prescriptions filled. This is going to be the tough part, keeping all his meds straight and timely. Thankfully for me, the nurses have devised a pretty straight forward schedule. Pray that I don't mess anything up or forget any of his meds.

4 lbs!!

Just a quick note... Jaxon made it to 4lbs today. Way to go Jaxon!!! Mommy and Daddy are so proud of you. You are getting very big and strong. 3.5 more ounces and you will double your size.

He is also 16 inches long.

Anxiously Awaiting

I am sooo sorry for keeping you all on pins and needles. I know it's been a week since my last post, but I have been staying busy getting ready for Jax' homecoming. Unfortunately, he is still in the NICU. Since last Thursday, we've had a couple of false homecoming dates.

After his event recording (72 hour monitoring) Dr. Prazad noticed that he had two somewhat severe Apnea episodes (not breathing for 20+ seconds). So she recommended he stay for a few more days. She also restarted him on caffeine and started him on reglin (a medication to strengthen the flap from his esophagus to his stomach). She also noticed that these episodes are related to feedings and spitting up. Needless to say, we didn't get to bring him home at the start of the week, but we did have home monitor training for the monitor he will be coming home on.

Next, we were waiting to see how he reacted to the new medication and caffeine. He did great and had no Apnea episodes. So yesterday, Dr Paidisetty said Jaxon could come home Thursday or Friday, as long as, he had a good night, Apnea free. Well, I called this morning to see what time we should come pick him up and I was told he had a few Apnea episodes during and after feedings last night. Again, we could not bring him home. Dr Paidisetty, told Dr Stich that he would have to tell us Jaxon wasn't coming home; he didn't want to have to be the bearer of bad news again.

Now we continue to wait. Dr Stich took him off the formula supplement, they had added to his breastmilk. He thinks Jax doesn't like it and it's making him feel
upset and gasy. Which make him spit up and fussy. If he does well without the formula addition, he will go on calcium additive prescripition.

Please pray that he will be able to come home soon and that he will be 100% ready.