Great to even better!

Yesterday was a really good day here in the NICU. After getting that darn chest tube out, Kilun has been going up hill. His oxygen sats have been really good, so they took him off the high flow nasal canula and put him on just the normal one. He continued to do so well with that, that this morning they did a room air trial and he is now off oxygen completely.

Since the tube was out and then we got off the high-flow, we were able to start breast-feeding (not a dumb questions, Janna!). Kilun has done really well with that. I think a lot of it has to do with his age and he really IS ready to breast feed. He has to have everything by mouth (rather than the feeding tube) for 48 hours before we can go home. We hope that will be by Saturday.

Another benefit of being off the high-flow was that he could now be in a "big boy bed" and get dressed.

The one IV he had left went bad with 3 doses of antibiotic to go. I had asked the nurse about the possibility of giving it orally. She said these specific antibiotics don't have an oral version, but there was a possibility of a shot. I told her about the problems he's had with IVs and thought it might be a better idea with only 3 doses left to do it with a shot. When I came back after shift change the nurse was just trying to do another IV. I again told her about his history and asked about the possibility of the shots. She checked with the NNP and it was decided just to discontinue them all together. We'll take that!! Since there has really been no sign of infection from the beginning, there was no reason to have to stick him several more times just for 3 doses.

So, now all we're waiting for is the eating. I don't think it'll be a problem and we'll look forward to going home this weekend! We did have to go back on the bili-lights, but hey, better to get that taken care of here than home!

It's gone!!

Before
After

I came in this morning to find the nurse scrubbing the floor where the tape had been holding the water seal mechanism controlling the chest tube. Which means...the chest tube is gone!!!!! I am so excited! Last night before I left I had talked to the night NNP and told her my concerns. At the time Kilun had gone up on his oxygen and his breathing was a little fast. At that point the NNP said she wouldn't even talk to a doctor because he was still having some small concerns. It wasn't long after that, though, that he calmed right down, his oxygen needs went back down and he was breathing at a normal rate. They must have checked him earlier than they otherwise would have because they removed the tube at 1 this morning, not waiting until 4 to have another x-ray. His oxygen has been turned down again, and continues to do well, so I think it won't be long before he just goes to a regular canula instead of the high flow.

Thanks for the crossed limbs and the extra prayers. We have have been truly blessed by them.

Days 4 & 5

I've been waiting for some big news to post about before I did another update, but it doesn't seem like it's coming. Things with Kilun are good. He's been improving the last couple of days. Yesterday they continued to up his feeds of my milk, thus decreasing the other fluids they have been giving him. He has tolerated it well and has been able to keep up the digestion with the amount they are giving him. Unfortunately, my milk is not keeping up. I'm trying hard to keep on the pumping schedule, but it's not bringing anything in. I know I should really just give it a few days...I AM only 5 days post baby and it takes a few for the milk to come in. It's just frustrating when the amount they want to give him is twice as much as I make. The fact that he is going down on his fluids, though, is good news because the poor kid can not keep an IV to save his soul. He has been getting 2 a day because they just keep going bad. At this point they could probably take them all out, but he has 2 more days of antibiotics so he needs an IV for those. Tonight I stood by his bedside while they poked him 7 times trying to get a good IV. 6 of them blew, one is still working. My guess is, though, by tomorrow evening, it will no longer be good.

Today he came off the bili lights. He was having a hard time getting rid of the bili because he wasn't pooping. The pain med he was getting for the chest tube was slowing his bowels, so he hadn't pooped for 4 days. They were able to slow down the pain meds and sedation yesterday, only giving it twice, so his bowels have been moving again. He's probably pooped 7 or 8 times today and we cheer every time he does. It seems every thing is looking good except one...

The biggest thing I've been waiting for his getting his chest tube out. I'm starting to get very frustrated, and I'm sure Kilun is too. We were hoping that the tube would come out yesterday morning, but when I got here they said they saw a little sliver of air on the chest x-ray again, so just to be safe, they were going to leave it all day and do another x-ray this morning. They did another x-ray this morning, I wasn't told what they saw on it, but during rounds they decided to turn off the suction and do another x-ray at 6 tonight. The x-ray was done and the NNP (neonatal nurse practitioner) said it looked good and to keep in on water seal, which means keep it off but we're not taking it out. I was very frustrated by this because the DR this morning said that if it was good we'd take it out tonight, but then the NNP said not to. Our nurse today was great and I let her know my frustration. I'm hoping to be able to talk more to the nurse tonight and maybe get another opinion from the night NNP and get it out. As long as he has the chest tube in he can't be held, so I haven't been able to hold my baby for 4 days now. That's forever!! Since he hasn't been on so much sedation the last couple of days, Kilun has started waking up more and the poor guy just wants to be held. He can't really be moved because of the tube and has pretty much been in the same position since Saturday. He been starting to root, but of course I can't nurse him, again, due to the tube.

Aside from the tube, everything looks great. So, everyone cross your fingers, toes, legs, and anything else that can be crossed, and pray, that we can get this tube out in hours, not days.

Day 3

We had a great surprise when we arrived at the hospital today. Kilun was off the respirator. Yay!! He now has a high flow cannula, I think. His numbers all look a lot better today than they did yesterday and he is holding his own. They just checked his blood gases and I think by the nurses talking, they didn't come back so well. He was working a little harder to breathe and was holding his breath a little. While they were all deciding what to do I tried to hold his little arms from flailing everywhere and tucked him back into to the little kangaroo thing they have in his bed. It seemed to help him calm down a little. We think, perhaps, his chest tube is bothering him and he could just use a little more pain meds. that's what the nurse is going to try first and hopefully that will make the difference.

I was reminded today how blessed we are that even thought Kilun is in the NICU, he in America and he's getting great care. My aunt and uncle, Anne & Roy, are on a humanitarian mission in Kazakhstan. The last couple of weeks they have been doing Newborn Resuscitation Training for several doctors and nurses over there. You can read their blog here. It's amazing for me to think about all the doctors and nurses in other countries who don't know how to do those things that we think are the simplest things, like intubating a baby. (obviously not us non-doctors, but you know what I mean) Kilun may not have lived had he been born in one of these countries because they don't have all the knowledge and technology that we do here. I am very grateful for that blessing today. At least we have a NICU to be treated in and I know we will go home in a few days.

I want to thank you for all the prayers and the fasting that has been offered in our behalf. I know there has been a lot. Heavenly Father is blessing Kilun to be strong and overcome his challenges and our family is being blessed as well.

Update #2

When we went to see Kilun earlier they had just inserted the needle to extract the air from the pneumothorax, they got quite a bit out and as time went on they continued to get air out. When this happened with Xadun, it was a one time thing that they took the air out and the needle was out. This time they left the catheter in the chest and continued to get air out. This was concerning because if they continued to get air out, it meant that the hole wasn't closing itself and they might have to put a chest tube in. Before we left for lunch it was finally looking better and they were no longer to air out. This all happened before they did the surfactant. They were waiting to do the surfactant because the lungs react quite quickly to it and it might cause additional leaking and want to get the one taken care of first, hoping if that one was fixed, the surfactant might not cause any other problems. (sorry, run on sentence) While we were at lunch they administered the surfactant and when we got back he had again gone backwards, was on 100% oxygen and was breathing quite rapidly. They were getting ready to put in the chest tube. The nurse practitioner showed us how they were able to see the air in the lung and why they wanted to put the chest tube in immediately instead of waiting to get another xray first. So, they kicked us out and they are doing a little surgery to put the chest tube in. This is new territory for us. None of the boys have had to have chest tubes. We were also told that Kilun has officially bought himself a 7 day course of antibiotics due to all the problems. Initially they start out with 3 days of antibiotics and then go from there depending on how they do. So, we will be here at least 7 days, probably more. And last, but not least, he's looking a little jaundice, so he's also on phototherapy to get that taken care of.

Thank you for all the prayers and support! I am definitely feeling stronger as we deal with all the issues we didn't anticipate having. Little Kilun needs all the help he can get, both from the nurses and doctors here, but most importantly from his Father in Heaven.

Update

I just received a call from the NICU that our little Kilun has taken a few steps backwards instead of forward like we had hoped. On this morning's x-rays they found that he has a pneumo-thorax, which means there's a little hole in his lungs and the air is leaking out into the tissue around them. They also found that the lack of surfactant is becoming an issue. Surfactant is a substance that our bodies naturally produce that helps our lungs to stay open and not stick together. With Kilun's lack, his little air sacks are sticking together. So, he's having to breathe faster and harder to get the oxygen that he needs.

They're going in this morning to do the procedure for all this. He will have to be intubated so he'll be on a breathing tube for most of the day, but hopefully we'll be able to get it out by tomorrow morning.

We could really use some extra prayers throughout the day. We've been through all of this before with Xadun, but we weren't prepared to go through it this time. If this had been 2 weeks ago I probably would have been able to handle it a little better. I'll try to post some pictures later.

**If anyone local has a breast pump that they'd let me borrow for a few weeks, it would be greatly appreciated**

Another stay in the NICU

Despite being a full term baby, we have again been admitted to the NICU. They did a chest x-ray last night and it looked "streaky", meaning he doesn't have the amount of surfactant he needs in his lungs. They put him on a C-PAP last night and to help keep the lungs open. His respirations are a little high and he's working more than he should for his air. He'll probably ween himself off the C-PAP, hopefully in just a couple of days. Then we have to figure out the eating thing, etc, etc. So we're looking at another week at least. This is just so unexpected. I though for sure we'd be able to take him home seeing as how this was my longest pregnancy, biggest baby, etc. It's very frustrating, to say the least. Even more frustrating is that because I thought we wouldn't have any problems, I delivered down in Murray at the new IMC. This is an hour away from home. If we were going to do a NICU stay we had planned on delivering at McKay so that I'd be closer to home.

I also have had a couple of complications that have made my recovery a little harder. Last night I hemorrhaged and lost quite a bit of blood. I had been feeling fine up until that point, but spent the next 12 hours flat on my back and unable to get up. They gave me 3 different types of pitocin to help my uterus cramp down, get back to it's normal size and stop bleeding. Along with that came lots of fluids, so today I look like I've gained 20 pounds. They just took the catheter out that I was on for almost 24 hours.

Chris has been great to me! He's really taken care of me and has been strong when I have really struggled. There's been a couple times when things were really bad, that I really didn't know because everyone else was so calm. They called a code blue on Kilun yesterday soon after he was born because he stopped breathing, turned blue and limp. I had no idea until after everything was fine again. Then when I hemorrhaged last night I didn't realize how big of a deal it was until my room was filled with nurses and the resident trying to get the bleeding taken care of. Through all of it Chris just held my hand and was there. He's been so sweet to open my butter when I haven't had any strength, change my gown, and even tried to change my sheets before a CNA stopped him. He did have to tell me "I told you so" today in regards to being in the NICU and we should have gone to McKay. haha I have to give him that one.