Saturday, June 11, 2016

One month old!

Alright so I know this is a couple days later than I planned but here is the update! I've been awful at taking pictures I've realized so I need to commit myself to that so I can post more on the next update.

Thursday marked 33 weeks for our boys, but these cuties are already coming up on 5 weeks old! It's crazy how fast but yet slow the time has passed..

They finally moved over to the continuing care nursery (CCN) last weekend- woohoo! They are in separate rooms that are connected. I was nervous I wouldn't be able to hold them together again since they are further apart but the nurses are able to hook Levi's cords into a spare monitor in Luke's room so I'm very happy I've been able to continue holding them at the same time. :)

We got the stomach bug around our house so we didn't get in to see the boys for a couple days after they moved to the CCN. When we finally got to see them I was ecstatic to find they were wearing clothes!!! They looked like normal little newborns! It looked much more comfy for them to be in clothes and all swaddled up. I got so excited that I brought preemie clothes I had at home for them and played dress up. Believe it or not, the preemie clothes were a little snug! They definitely will not be in them much longer, but I'm okay with that because it means they are growing. In fact, they are both 3lb 10 oz now! It's funny, some days they are the exact same weight to the gram, other days they are just a little different, each taking turns being slightly heavier than the other. Hopefully that whole taking turns thing continues as they get older haha.

Both boys are getting some fat on them and their skin is looking a lot less fragile. They both had eye exams a couple days ago since preemies have higher chances of vision problems. The exam was sad to watch. It looked painful but they had numbing drops so they probably didn't feel much. The results came in today and they passed! They will have to have the test repeated in a couple weeks though. They both are maintaining their temperatures well and might be able to move to open cribs soon. They will start bottle feeding at about 34 weeks. If they can manage getting to open cribs and mastering eating, there isn't much more keeping them from going home (besides Luke's oxygen).

Levi is still doing great off the oxygen. His repeat head ultrasound came back normal with no bleeding. And for my favorite update (drumroll please!).. We tried nursing this week and he totally rocked it! We did what's called non-nutritive breastfeeding. Basically I just pumped right before we practiced nursing him so he could start to learn how to eat, but not really needing him to get anything since he still got his meal from his feeding tube. The lactation consultant was very surprised how well he did! She said he did amazing for his gestational age and that there is a good chance he will have little problem getting proficient at the whole eating thing. I was so proud of him!! 

Luke is doing great too. He still needs oxygen but continues to handle the small decreases pretty well. They want him to conserve his energy to grow so they aren't pushing to get him off the oxygen too quickly. We tried the non-nutritive breast feeding with him too and he was just too sleepy to try. He also had some congestion so he was working hard to breathe but once his nose was suctioned he did much better. 

Us four at home are doing well. I'm still pumping away and it is very time consuming. I've learned to be proficient at pumping and I always have my pump gear wherever I go. I can't count how many times I have pumped while driving (don't worry, I cover up!) I'm so happy that I have plenty to give my babies and I'll definitely have enough to feed them both as they grow.. I produce about 60 ounces a day! My freezer is filled with so much milk already I may even have to donate some before they even get home! 

My stock pile - I had even more than this but I accidentally left the freezer open and I lost a bunch of milk that thawed. Talk about depressing throwing away so much hard earned milk!!

Ok so that's the good news, here is the not so good news: today Levi had a little blood in his stools so there is a concern he has a common but serious infection in preemies called Necrotizing Enterocolitis (NEC). This infection causes cells in the intestines to die and could possibly result in surgery if it gets out of control. Once the doctor saw the bloody stools, tests were ordered right away. He had to have blood drawn to test to see if his white blood cells were elevated and blood culture to see if bacteria is in his blood. They had to do a catheter to check for bacteria in his urine. They started an IV for antibiotics and hydration since they are stopping his feeds for 48 hours (this makes me want to cry - he has just really started showing signs of hunger!) He also had multiple x-rays done to see if there is signs of infection in his intestines. Luckily his white blood cell count and urinalysis came back normal! His first x-ray was normal, but his second showed possible infection. The follow-up x-ray showed the area of concern had moved so most likely it was just stool that was seen. Such relief!!

The nurses unfortunately kept running into problems during all these labs being done so what should have been an hour turned into a few hours. It was heart wrenching watching him poked and prodded as they tried multiple times to get an IV and catheter in him as he cried out the saddest little cries. He ended up with an IV in his head and a catheter that had to be left in for a while. I trust his nurses and I know they weren't running into problems because of lack of skill.. Just every little body is different to work on. Poor little guy was completely worn out by the end of it. 

I left the hospital emotionally exhausted today but grateful that as of right now, things are leaning more towards him not having NEC. He hasn't had bloody stools again and the blood tests have come back good so far and the latest x-ray was good too! There is possibility that he has a small cut at the end on his intestines that we can't see that caused the bleeding. He could also be reacting to the change to his milk fortifier. We will know more tomorrow when the blood culture comes back. At 24 hours we get preliminary results, at 48 hours the test is complete. I'm praying my heart out they come back negative so my little guy won't have to battle this awful infection and that he can start getting to eat again! 

As I left the hospital today, I reflected on a conversation I had with another NICU mom last night as I was leaving the hospital. She told me of her experience with pregnancy and that she had lost 3 babies due to prematurity, and her baby in the NICU was born at 26 weeks. Through everything she had been through (like losing her 27 weeker to infection) she had found that only through God was she able to heal and have hope. Although we aren't of the same faith we definitely had a bonding moment where we shared our testimonies of the importance of God in our crazy situations. It was an uplifting conversation that sparked a feeling of appreciation for the growth we have gained through it all. It's hasn't been easy, and it's still not easy, but I'm just grateful that me and this other mom have had strength by turning to Heavenly Father. I'm also thankful for this sweet mom who helped prepare me to go into today with a rejuvenated sense of gratitude because it has helped me to keep myself together.. Her words and hug were so much what I needed before I even knew I needed it. I hope I can be that person for someone else one day!! 
Well, here's to good news for my Levi tomorrow!