April 4, Every day brings something new

These are Ivanna's two weeks imprints. She loves grabbing my finger with her tiny hand and she always crosses her legs like a little lady, so cute…

Every day in NICU brings something new and either really good or something to be anxious about and I am doing my best not to be anxious but to keep my confidence that all will be well.

Two days ago she reached her full feeds for her weight of 6 ml of my milk every two hours (plus they add some supplements to my milk to help her grow) and today she is already at 7 ml. Two days ago doctors took out her Umbilical Venous Line (from which she was receiving IV fluids and medication) completely! And since she is on full feeds and her only medication (caffeine, it helps the brain mature) can be added to my milk, she does not need IV at all! This is amazing since it's painful to poke her tiny veins for IV so I pray that she won't need any IV at all in the future! 

Also I found out that up until last year cut off for deliveries was 500g, and doctors still don't believe in survival of babies below 500g and they simply didn't have equipment small enough until recently… That's why they were convincing me to terminate, they were saying the chance of survival is about 10% and the chance of her being healthy is one in a million...  Yes, it sounds scary. And they were still warning me that their equipment might not be small enough for her and they don’t know what to expect with maturity of her organs because she was so behind in weight... But as you can see she is beating the odds! Doctors are impressed with how stable and well she is and she definitely has a good chance of being healthy with the start that she’s had.

Yesterday I got to hold her for the first time! And as much as I was excited about this experience, I also felt conflicted after it happened. After talking to a few doctors and nurses about it we came up with a plan of how we can make it better next time.

Kangorooing micro preemies (or holding them skin-to-skin on their parents chest) is supposed to be a very calming and positive experience but what I am learning is that for the smallest babies it could be challenging since the ventilator tube is heavier than the baby! I decided not to kangaroo Ivanna every single day while she is small since the first experience was definitely stressful for her since they just couldn’t position the tube in a way that would be comfortable for her. One of the nurses suggested next time not to strap her with a sling so that she has more room to wiggle around and get comfy. Long story short, doctors agreed that I should try again in a few days without the sling and see if she settles faster. She loves my hand hugs, as soon as I put both of my hands on her, her heart rate goes down and she starts falling asleep. This is supposed to happen with kangarooing but her heart rate was high for over an hour while she was kangorooed (which is not bad, but it still means that she was possibly stressed).

Today she got an ultrasound on her heart and after a long discussion and brainstorming with me we decided to put her on tylenol. One doctor was telling me about all these options (ibuprofen or other medication or no medications) and I asked him a million questions about all possible scenarios and I decided that I want to go with Tylenol. Then her main doctor came and he said that he agrees with me, that Tylenol might be the best option. It’s very long to explain, but in a few words, all preemies have a condition called Patent Ductus Arteriousis. Ductus Arteriosis is a blood vessel that connects aorta and pulmonary arteries in all babies before they are born and this vessel is supposed to close shortly after a full-term baby is born. In preemies it usually closes but later on, in a few weeks or in a few months. However, for this vessel to stay open for a few months puts extra pressure on the preemies lungs and that’s what we don’t want.

Ivanna’s oxygen requirement started going a little higher, to 35-40% from 30% and again this is not a big deal according to her respiratory therapist, it might go down in a few days, however, she also had a heart murmur which could be nothing or it could be that ductus arteriousis is getting bigger, which again is typical. Since we don’t want extra pressure on her lungs, and there are medication which help close this opening (Tylenol, ibuprofen, etc) instead of waiting for it to close on its own we decided to try Tylenol (ibuprofen is proven to be more effective and there have been more clinical trials with it but it also cause digestion problems for the baby, other options weren’t attractive). This blood vessel could close on its own in a month on in three months, or it can cause more problems in the next few months or never close. So after weighing all the options, Tylenol it is! It will be added to her milk and there hasn’t been any adverse effects found in more than 1000 babies who received it. It helped only in half of these babies, so I am praying that it helps right away!

It’s amazing how the team of doctors and nurses work together with the parents. We already had a long meeting with our main doctor and he is just so awesome. Every morning at 10 am a team of 7 people do rounds and they go through each baby’s room and I am always present at these rounds. All the different specialists (feeding specialist, lungs specialist, etc) get updates about Ivanna from her nurse and they decide all together how to adjust her feeds, medication, which tests to order, etc and I get to participate in this process and ask questions!

Thank God for all the new medical advances though! Ivanna is a champion micro-preemie! She is truly God's miracle, I am so grateful! Yes, I am taking it one day at a time and the doctors seem happy but they still repeat it “so far so good”, since of course they have seen so many things happen to these babies and we are only at 27 weeks but I know God is holding her and me in His hands and we are cruising through this 3+ months journey with Him. Your prayers and messages make my faith even stronger, so thank you everyone for your support and encouragement! I am staying positive even though I do have my low moments when I see them even making small pokes for her blood sugar, it makes me cry and I feel like I am weaker than her, she doesn't even cry that much and she calms down so fast. Realization that we have to be here for another 3+ months is not easy to process but I try to think about God's goodness and Ivanna's strength and I don't let any negative/desperate thoughts in. It's not easy but it is all worth it and this journey will have an amazing outcome.