Saturday, July 6, 2013

NICU life... So far!

So we are on day 13 in the NICU! I have a terrible memory and I'm sure I'm not quite right on all of the terms, so this won't be as accurate as I'd like it to be, but let's try to recap what has been going on!

The day the boys were born, they were both brought straight into the NICU. They were both hooked up to IV's (which gives them fluids like electrolytes, vitamins, amino acids, fat etc),  oxygen saturation sensors, and HR/ breathing rate monitors. Scott was also hooked up to the CPAP at first, which just helped keep his lungs open. It doesn't actually provide any oxygen, it's just a little bit of help breathing. He was only on it for about a day and a half though. We were told that the boys would be on the IV's until they reach 'full feeds'. They calculate the full feed amount based off of their birth weights. They started off primarily on the TPN (IV fluids) and slowly, day by day they increased the amount of breast milk they took in (through a nose tube) and decreased the amount of TPN they received. I think we started off at like 5ml of milk, and every 6 hours it would be increased by 1cc until we reached the full feeds of 34ml for Adam and 33ml for Scott. We were thinking both boys would be off the IV's around Tuesday the 2nd based off of the calculations. We were super excited about that, because both of the boys are 'hard IV starts' meaning it usually takes several attempts to get one secured, and way too many pokes for my little guys. I absolutely hate the IV!!! Sometimes it seems like it's moved 3 times a day :(

Jamie holding Scott

Me holding Adam
The first few days were pretty chaotic, but also pretty stable. We did a lot of baby cuddles, and the boys slowly started gaining weight again. They dropped below their birth weight pretty soon after coming out, and day by day they grew a little bit at a time. Things were pretty uneventful (aside from Adam needing an IV in his head, my little unicorn! He now has a great old man haircut) until one night (June 29th) when Jamie and I walked in for the 9PM feed. We arrived at 8:30 to see Scott surrounded by nurses, the Dr, and the respiratory therapist. I had left the hospital earlier that day at 2PM and he was totally normal. Over the next few hours I guess he had gotten very lethargic, and his HR was around 200, without him even moving. I later learned that he was also having 'bradys' which is basically where the babies stop breathing, their oxygen saturation levels drop, and the heart rate drops below 100. Sometimes babies come back from it on their own (Level 0 intervention) and sometimes they need to be stimulated (by flicking their feet, rubbing their chests) in order to bring the HR back up (Level 1 intervention). Luckily he didn't need to go past a level 1, and need oxygen. He was put back on the CPAP just to help keep his lungs open so that his body didn't have to work so hard. They ran a lot of bloodwork and did a chest X-ray. It was a really rough night. I started bawling 5 minutes after walking in. A nurse came up and she said that we had discussed this prior (must have been when I was still pretty drugged up, I don't remember the conversation) and that it's very common for babies in the NICU to come down with infections/ little sicknesses. The Dr was mentioning things like 'lumbar probes' etc too. It was a crazy night. I remember holding Adam and shaking so hard watching Scott get his chest X-rayed, but trying to hold it together to not stress out Adam. They started him on antibiotics right away, and said we'd get more information in the next day or so.  I cried all the way home, and it was the worst night ever. I couldn't get anything from pumping, I was way too stressed out. I called every couple hours and around 4AM the nurse said he seemed to be improving. His HR was starting to come back down a little bit, and he was starting to wake up. We were glad to hear that because the night prior, he looked awful. He was completely white, had the CPAP on his face, and wasn't moving a muscle yet his HR was over 200. It looked like he shrunk 2 lbs in less than 8 hours. They decided to hold his feeds, and just do TPN only, no milk at all. They also added a third bag of just sugar water to his IV.

Scott before he got sick
My sweet sick boy Scott getting cuddles

The next morning we got there and learned that the chest X-ray was clear, and that we didn't know what it was yet, but that the antibiotics seemed to be helping. The Dr came by again and mentioned doing the lumbar probe (taking fluid from the spine to check for meningitis) but that we'd wait for the bloodwork to come back. Later that day, we learned that he had a staph infection. Basically bacteria was growing in his blood. It can be introduced from IV pokes etc, and preemies just have such weak immune systems that they get sick sooo easily.  It's actually not as scary as we were expecting and he was looking much better. He was on CPAP for about an extra day, and the next morning they took him off of it. They re-ran his bloodwork after 48 hours on the antibiotics and it came back clean 48 hours after that which means he needs only 7 days of antibiotics from when the first repeat culture was drawn. He should be done in 3 days. He was off of his feedings for about 1.5 days, and so he was dropped from about 24ml to 10ml.

Scott - on the mend and feeling better!!

While this was all happening, the same thing happened to Adam shortly after. The nurse noticed he was extremely lethargic, high HR (although not as high as Scott's was) the whole nine yards. We half expected this to happen, so we were glad they started the antibiotics right away. Adam's blood culture came back with a positive for a staph infection as well, like we were expecting. It took him a little while longer to get better with the antibiotics and he continued having the Brady episodes the first day, which was pretty scary. The nurse said usually they start to really turn around after the third round of antibiotics and that was the case for him. I felt awful for him though, he just looked so SICK. He's normally so bright eyed, always looking around and making faces, but he just had this pained expression. Broke my heart. They ran the repeat bloodwork 48 hours after the positive culture and unfortunately his came back positive again. He is acting great, and looking great, but I guess it wasn't high enough of a dose to kick the infection first try. They are running a repeat culture tomorrow morning and as long as that's clear (we'll know after 48 hours) he should be off of the IV on July 14th. I have every single finger and toe crossed. I'm thinking he'll have to have another one go in his head, which I'm fine with. He seemed pretty comfy with it up there actually. REALLY hoping his blood draw tomorrow is negative though, ahhh! He also had his feedings suspended for a little bit, but he's resumed as well. They are both increasing much faster now, 2ml every 6 hours. They'll both be up to full feeds in no time! Granted their new 'full feed' amounts are higher than they were before, but that's a good thing. The Dr today said they're gaining weight perfectly and chunking up nicely. They both have super long legs (not as wrinkly anymore either) and adorable double chins!
My little unicorn Adam having a bath before getting sick

Breaks my heart- my poor little sick guy Adam

Adam is feeling much better with antibiotics!
The NICU is pretty scheduled. They feed the babies at 12, 3, 6, and 9. They start about half an hour early with taking the babies temperatures, and changing diapers. If Jamie or I are there, we do that part. We are going to be PROS at changing diapers once we have them home. We've pretty much mastered doing it with IV's, tubes, sticky things all over their chests, oxygen sensors... you name it. For the feedings... If I'm there, I'll take out one baby and cuddle with it, while holding the syringe filled with milk with one hand. The other baby will have the feeding hung over him in his incubator. It's best if Jamie and I are both there so that we can both 'feed' the babies. It goes straight into their tummies through the nose tubes, pretty neat actually. I think the nose tubes (NG) stay in pretty close to discharge, I know the nurses often feed them that way. In a week or so, I will be spending much more time there as the babies learn to breast feed. I'm already there QUITE a bit, but I will try to spend pretty much all day, to hopefully get them home sooner!

Overall, the NICU itself isn't that awful. I hate the constant blood work and pokes, and there is always a fear that something will go wrong. I always let all of the nurses know to call me ANYTIME something changes at all, I want to know instantly. I'm still worried that they'll forget to though. I wish I could be there 24/7 to cuddle with the boys, they seem sooo happy when they're snuggled up to Jamie or I. And I just can't wait for them to be together! They must be missing each other so much.

So let's see. Scott should be off the IV in a few days, Adam in 8 days. Both boys are very close to their 'full feed' amounts (although they will withhold Adam's by 1ml to keep something in the IV to keep the vein open (which will also be easier on his poor little arms and legs) and pretty soon both boys should be able to start breast/bottle feeding! After they're both off IV's, they can move into the twin crib, and out of the incubator! Can't wait :) That's a pretty big milestone... I think after that, they just need to be able to stay warm on their own, tolerate all of their feeds on their own, keep gaining weight, and not have any 'episodes' on the monitors for at least a week. It seems so far away, but maybe once we get over this whole 'infection' hiccup (which I think threw us back about a week or so) we should start to really see some progress. I hear different things about when they can come home. Sometimes I hear '36 weeks gestation', and other times 'your original due date', which would be August 15th. I'm thinking (and hoping) it will be somewhere in between, and am aiming for sometime in July. That would be amazing. I can handle that!!!

Now I think I'm caught up (although I know I've missed so much, it's been such a blur!!!) and it should be easier to update on a more regular basis. As far as the boys current weights - Adam was born at 1790 grams (3 lbs, 15 oz) and he now weighs (as of last night) 1960 grams (4 lbs, 5 oz). Scott was born at 1620 grams (3 lbs, 9 oz) and now weighs 1835 grams (4 lbs, 1 oz). My little porkers! This was as of last night too, so I'm sure they've gained weight today!
Adam getting weighed about a week ago

Scott getting weighed about a week ago

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