Tuesday, November 27, 2012

November 27th, 2012

Here we are again. Back in the NICU. I haven't updated this blog in a few days so I'll summarize it real quick.

Blake finally graduated into the CCN (the continuing care nursery) on Friday the 23rd. He was doing awesome. The CCN is where the babies go before they are finally discharged. Well, Blake was still on O2 but they were able to wean him quite a bit. And he was doing pretty well with his bottle feedings. He was just having some trouble trying to coordinate sucking, swallowing and breathing all at once. But he was doing it. He really was trying his hardest to figure it out. I started to get my hopes up that he would be able to come home soon.

Monday, Blake started looking a little pale and had no energy which caused him to not eat as well. He was desatting quite a bit and was needing more oxygen to help him out. His nurse thought maybe he just needed some red blood cells and that would give him the little boost that he needed. She told me she would talk to the Nurse practitioner to see what they thought they should do.

I came in this morning to find out that they hadn't given him a blood transfusion yet. His nurse told me that they dont like to give blood transfusions after 36 weeks gestation unless its absolutely necessary. At his age, (3 months actual and 39 weeks gestational) they want him to try and develop his own red blood cells. But today he just seemed worse. He was very pale and really lethargic. He was having trouble keeping his oxygen saturations up and his heart rate would occasionally get up to 200-205. I just knew something wasn't right. But his nurse said they weren't planning on doing a blood gas to see if he needed blood until tomorrow morning.

Patrick and I were at a family dinner for our nephew when I got a phone call from the hospital. The nurse practitioner informed me that Blake had been moved back into the NICU and was back on a ventilator. He was having trouble breathing and was extremely pale so they ran some tests. The blood gas came back with some acidosis which means he is fighting some sort of infection. We don't know what kind yet.

When Patrick and I walked into his room, Blake was as white as a ghost and just limp on the table as the nurses adjusted the ventilator and set up his IVs. I thought we were done with the scares but every fear that I have had in the last 3 and a half months all came rushing back when I saw him. He has come such a long way. We were inching our way towards the finish line but something just had to set us back.

As of now, he has had one lab result come back saying that it is more infection than the lack of blood causing his condition. However they still set him up for a blood transfusion to give him a little boost. He is on some antibiotics in the meantime to start fighting whatever infection he has. They also did an xray but didn't see anything too concerning. He has a fever but his nurse said thats a good thing because it will help burn off some of the infection. All we can do is wait for the blood culture results to come in but that could take a few days. And even then, we'll still be on the same course to recovery. The only difference knowing will make is how long he will need the antibiotics. If his blood culture comes back really bad, then they may do a spinal to see if it is meningitis. But that is worst case scenario. And even if it is that, at least it was caught early and is already being treated.

I am so ready for all this to be over. I want my son to be healthy and I want him to come home. Its been 104 days since Blake has been born and I have been so anxious thinking that our days here in the hospital were dwindling down. This is a huge set back. I cant even express in words how I feel. After everything Blake has been through in these last couple months he finally started to turn the corner. He kepting hitting milestone after milestone and I truly thought he could possibly be home by his due date on the 4th. I finally was able to feel optimistic and breath for the first time. And then this happens. My heart can't take much more of this. I'm back to square one. I'm back to praying for Blake to keep up his strength as he continues to fight and push on like the little trooper he is. 

I just want to cry but I know that won't accomplish anything . I wish I could trade places with him and take his pain away. No parent should ever have to go through this. I'm still trying to figure out how to cope with it all. The feeling of disappointment is overwhelming. He was in his final leg of this NICU roller coaster and here we are, back to not knowing how much time he has left before he can come home.

Please, please, please keep Blake in your thoughts and prayers. I'll keep you guys posted as I get more details.

Tuesday, November 20, 2012

November 20, 2012

14 more days until Blake's due date which gives us some sort of indicator as to when he may be home! Hopefully all the Thanksgiving hustle and bustle make the time fly by.

Blake was taken off the vapotherm yesterday. He has done amazing without it. He does have a low flow oxygen cannula but his nurse said that he really doesn't even need it. They just gave it to him so he didn't have to go cold turkey on oxygen. And now that the vapotherm is gone, he no longer needs the tube in his mouth that was venting air that was getting into his belly. The only tubes he has now are the oxygen cannula (which is less bulky) and the feeding tube that goes through his nose.

Blake was also able to breastfeed for the first time yesterday! We weren't sure how well he would do but he latched on like a pro. I think the tube being out of his mouth makes a huge difference. He didn't seem to have any problems with breastfeeding. In fact, he did better with breastfeeding than he has done with the bottle. Although when I tried to feed him today, he was so sleepy that he wouldn't wake up long enough to try again. But later when he finally woke up, he managed to eat 45ccs (a little over an ounce) of milk from a bottle! His only issue is trying to coordinate sucking, swallowing and breathing. He gets so excited to eat that he forgets to take a breath. Once he learns how to pace himself and gets up to full feeds by nipple, then we should be able to bring him home!

With Blake's discharge being so close, I have been nesting like crazy! I want to make sure everything is perfect for when he gets home. I want the transition to go as smoothly as possible. I can not wait to just have both my kids under one roof. I feel like once he is home, I can stress a little less. But only a little. I will still be a worry wart about him getting sick. I plan on making sure everything is clean and disinfected. I really want to limit outside germs as much as I can. The hospital recommends that Blake not go outside or go in any crowded places for the first few months. I might go a little stir crazy being on lock down with him 24/7 but I am so ready for it! After him being in the nicu for as long as he has been, I could definitely deal with being home with him for awhile. I am getting so anxious!!

His nurse has been talking about him graduating into the CCN, Continuing Care Nursery, the last few days so I'm hoping to go into his room tomorrow to find out whether or not that is in the plan. The CCN is where babies go right before they get discharged. Once he is in there, then we are definitely in the home stretch! Soon soon soon our baby will be home. =)

Sunday, November 18, 2012

November 18, 2012

This week has been full of milestones! I've attempted to write an update several times but it has been a very busy week so hopefully I can finally finish a post and share all of our excitement. Blake is 3 months now and has officially hit the 5 pound milestone! He is about 5 pounds 1 ounce to be exact. His weight gain is always one of my favorite daily updates that I receive from his nurses. It's hard to believe that he started out 1 pound 8 ounces and now is a healthy 5 pounds!

Another wonderful milestone that he has reached is that he is now in a big boy bed! No more isolette for him. I walked into his room on Thursday and saw that his isolette was open and there was a crib next to it. I literally couldn't stop smiling once the nurse came in and confirmed that he was upgrading to an open crib. Blake is big enough to be able to control his own body temperature which is another check off his To-Do list before discharge. The nurses are so good to him. They attached a little musical mobile and other little crib toys to his bed to give him something to do during his awake periods. He would be considered a term baby now so he is more awake and aware than he used to be a few weeks ago.

Yesterday, the nurses tried giving him a bottle for the first time! They are starting with 5 cc's at a time and will slowly increase it as Blake allows them. Blake is on full and continuous feeds of the Elecare formula still but they used breast milk in his bottle. He will be on the formula until he shows signs that his body is digesting like the way it should. The Elecare is a lot easier on his belly since it is already pre digested. The neonatal specialist also said that I can start trying to breastfeed during his cares as well. The last thing I want to do is have him only feed from the bottle and me having to pump for an entire year. Not my cup of tea but I'll do what I need to. But hopefully Blake will be able to eventually to do both.So the plan as of now is to offer him the bottle every 4 hours. His nurse just called me a few minutes ago to inform me that he is doing really well with the nipple feeding which is wonderful. The sooner he learns to do full feeds by nipple (bottle or breast), the sooner he can come home.

Blake has also been able to wean on the vapotherm to 3 liters of pressure too! One nurse said that he may only have one more wean before they just take him off completely. I can NOT wait until he can get rid off all those tubes on his face! When I held him earlier, his numbers looked amazing so he is doing really well and hopefully they can wean him again soon. He truly is the definition of a miracle. The doctors and nurses have been talking about him almost being ready to go home and I am getting extremely excited!

I can see the light at the end of the tunnel now! I have a whole new pep in my step and I feel like the weight of the world has been lifted off of my shoulders. Blake is doing fabulously and I am crossing my fingers that he continues to progress. At the rate he is going, he should be home pretty soon!

Smiling in his sleep


Relaxing in his first tub bath from mama

Beautiful big bright eyes! He was so awake!

All tuckered out from his bath

The nurses gave him some entertaining crib toys

Kisses from mama

Cozy in his big boy bed <3

Tuesday, November 13, 2012

November 13, 2012

Today was a good day! Blake had his surgery 6 days ago and he has made some great strides forward since. Even though he has been getting all of his nutrition from an IV, he has managed to gain a little weight. He now weighs 4 pounds 14 ounces. So close to that 5 pound milestone! Blake was able to get off the ventilator on Friday and was placed back on the vapotherm (oxygen) which is great. I was really worried about him regressing after surgery and needing the support from the vent but he has done awesome. The surgery went smoothly and without any complications. The hard part about the whole ordeal has been seeing him in pain. I can only imagine how badly he must feel. His body is so little. Even though his incision is only about an inch wide, an inch compared to his tiny body is huge. They had him on morphine for awhile but once he was taken off the vent, they had to lower the dosage because he was too relaxed and wasn't wanting to breathe on his own. But he seems to be less agitated the last two days so I am hoping the pain is subsiding and he is feeling better.

After a week of not being fed, he was finally allowed to eat today. As I said above, he was getting all his nutrition from an IV because they needed to let his bowel heal after surgery. You could see how hungry was  the last few days so I am very glad he was able to get something in his belly. They started a continuous feed of 1cc an hour of the Elecare formula he has been on. The Elecare is pre digested which makes it easier to digest. Once he can tolerate full feeds they will put him back on breast milk.

He was also able to wean the pressure of the vapotherm today which is wonderful news. Blake went from 5 liters to 4. Once he gets to 3 they can start trying to get him to take feeds from a bottle. I am sooooo thankful that he has managed to do so well since his surgery last Wednesday.  I've been stressing myself out worrying about whether or not he was going to be set back on all his progress. But of course, my little Blake has proved to me again just how strong he is.

I would have been 37 weeks pregnant today which means there would only be about 21 days until his due date. That being said, the only obstacles in our way of getting him home are him sleeping in a open crib (which should be possible once he weans a bit more on the vapotherm), breathing on his own, and taking full feeds by mouth. I have my fingers crossed that he can accomplish these things soon! The finish line is in our sight and I am getting oh so anxious.


Recovery is the worst but he got through it!

First time holding Blake after his surgery

Smiling for mama =)

Love him!

Making faces.

Monday, November 5, 2012

Another Big Week for Blake Nov. 5th, 2012

82 days. Today marks day 82 for Blake and his stay in the NICU. He has certainly come a long way since day one. Blake will be 36 weeks gestation wise tomorrow. It is crazy to think that we have made it this far. When the doctors told me he would be in the hospital until around December, I couldn't even imagine it. It just seemed like so far away. But here we are, a month out from his due date and I'm starting to get pretty antsy!

This week is going to be a busy one for Mr. Blake. He gets eye exams every other week and his last one was just last Tuesday. Well, every previous eye exam has just shown that his eyes were still premature to see if there is anything to worry about. But last week the eye doctor saw some change and they are calling it 'stage 1' in his right eye which is why he is getting another eye exam tomorrow instead of next week. She just wants to keep checking on it to see if it gets worse or stays the same. Since he is pretty close to term and it just barely showed up, they don't think it will get much worse. And depending how bad it gets, they can perform laser eye surgery to correct it. But stage 1 is not bad, in fact it could self correct itself. Once you start getting to stage 3 and 4, then you are probably talking about options with your doctor. So as of now, its not a concern. We'll know more tomorrow after he is seen.

And Blake's BIG day is on Wednesday. If you've read any of my previous posts then you know about about Blake's tummy issues. He has had an ostomy bag on his belly for quite some time and that is where all his bowel movements go into. Well, he is finally getting his bowel reconnected and placed back inside his belly. The goal was to do the surgery when he got up to weighing 2000 grams. But they decided to go ahead and do it a little earlier because he has a hernia where the ostomy is. Not a big deal but they figured that they should just go ahead and to the surgery which will fix the hernia. As it turns out, Blake has reached his 2000 grams anyway which is great news. As of yesterday, he weighed 4 pounds 6 ounces.

The surgery is kind of freaking me out a little bit though. The thought of having him going under anesthesia again scares me. But what I am more worried about is the surgery as a whole setting him back on all the progress he has made already. The ostomy surgeries and issues plus the pneumonia really took a toll on him. Instead of progressing like he should have been doing, he was using all his energy to get better. He was able to slowly wean off the ventilators and get onto the vapotherm, but he still hasn't fully weaned the settings on the vapotherm. He has only been able to wean to 4 liters of pressure but went back up to 5 after he had his immunizations so that he could rest a bit. I am just praying that he can successfully wean off the ventilator and vapotherm quickly so he can start getting ready to come home. 

He has 29 days till his due date. Now, I know they aren't guaranteeing to have him home by then but I can hope. Blake still has quite  few obstacles to face before they can discharge him. The biggest thing he needs to learn to do is take full feeds by mouth. But he can't start practicing until he is weaned to 3 liters of pressure on the vapotherm. Feeding by mouth on a higher pressure would be like a "dog trying to drink while his head is sticking out of the window of a moving car." Blake's nurse gave us that fun little analogy but it makes sense. Once the pressure is lower, we can start trying to get him to feed by mouth. I've heard it can take some time for babies to conquer that feat so I'm hoping he can start as soon as possible!

I am extremely thankful for all the progress Blake has made already. God is good, that is for sure. I'm starting to think he may be home after his due date but that's okay. Of course I want him home, but I also want him healthy. This week is hopefully the last of the big hurdles. The end of this NICU roller coaster is in sight and as antsy as I am getting, I need to keep being patient. I keep telling myself that we have 29 more days but I do keep the reality in my mind and I know that it may be later than that. I don't care how long it takes as long as he continues to progress.

Please keep little Blake in your prayers this week while he undergoes his surgery and pray for a quick recovery. He's a strong little guy who has fought really hard to get to where he is at now. Hopefully these next few weeks get easier for him so he can finally come home!

He is 3lbs 15oz in this picture

Comparing him next to his monkey

This was taken yesterday. He was 4 pounds 6 ounces in this photo!