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.

March 29, 2018. My miracle

 Today is day 10 of Ivanna’s life and she doesn’t cease to amaze us. I spoke more to the nurse who was in the delivery room and found out more about her first minutes of life and the conclusion is that she truly is a miracle. I am getting to know her character and it’ quite something...

At the moment she is already eating 3 ml of my milk every two hours and pooping every day (OMG how happy I was when she finally pooped on day 4!!!). She is fully stable all though we had a little false alarm a few days ago.

She has quite a character, a few nurses told me that she definitely acts older than her gestational age, all her habits and reactions are not random, but those of a more mature baby. For example if she pees or poops she immediately lets everyone know, her heart rate raises and she starts making an upset face or crying. If I come and cuddle her with my hands (they call it a “hand hug” since my one hand pretty much hugs her whole body) and if I give her her tiny soother, she calms down and the nurse can turn, change her diaper and Ivanna will be perfectly content and happy the whole time. Today even during the head ultrasound she was fully calm because she had my hand hugs and her soother.

Everyone keeps talking about how cute she is with her soother. She absolutely loves her soother… The nurse had an idea to cut the chunky sides of the soother and make it smaller and it was such a great idea. The cutest thing is when she holds her soother with her hand.. it looks hilarious, as though she holds it for dear life...

Her delivery

The nurse who was in the delivery room told me that she called her Clementine since her head was the size of a clementine. When she was born, the whole NICU team was there fully prepared for a difficult case scenario since they expected a baby that tiny to have a lot of troubles. As I already mentioned she cried when she was born, which is unheard of for such tiny babies (they usually need resccisitation), and as soon as she was put into incubator she was making crackling funny noises and just laying there, breathing, completely fine and the NICU team was like… “OK”… Hellooo.. now what? We don’t have to do any interventions????” They didn’t even intubate her, just gave her a mask with extra oxygen since she was breathing so well and they put it the intravenous line into her umbilical cord vein as they do for all premiees and then allowed Andrey to come in. She said that Andrey kept crying from happiness non-stop when he saw that she is doing so well…

When the babies are born, doctors assign them what’s called an Apgar score out of 10, which describes their “Appearance (skin color), Pulse (heart rate), Grimace (reflex irritability), Activity (muscle tone), and Respiration. A score of 10 is uncommon, due to the prevalence of transient cyanosis, and does not substantially differ from a score of 9”. 4-6 is considered fairly low but not critical and below 4 means baby needs a lot of help and is unwell. So pretty much the higher common score is 8, while for preemies common scores are below 6.

Well, Ivanna’s score was 8! When doctor was telling me this she was WOWing herself. She said it is quite something for a baby with 390 weight to have this score. When the baby is so behind in weight it is more common for the organs to be underdeveloped and this is what the doctors were scaring me with before the c-section, they kept telling me that she might not survive or be very sick and require a lot of life support… but God had a different plan and I trusted His plan.

 False alarm

A few days we had a false alarm. In the morning the doctor told me that her inflammatory markers were up and her blood platelets were low. This could be an indication of nothing, but could also be an indication of an infection. In this case the doctors don’t wait for results of bacterial cultures (which takes two days), but they administer antibiotics right away to be ahead of the infection, so they did. The next day she also did not tolerate any of her feeds for half a day and the doctors started to worry. I worried a little but I knew she will be eating well soon and she is ok. I was tempted to get scared and cry, but something inside was telling me that she does not have an infection. And so that evening she started digesting all of her feeds!

The reason why she is at risk of infection is because she has an umbilical artery catheter line to get quick access to her blood pressure and get quick blood tests. Usually doctors leave this line in for 5 days due to risk of contamination but since she is so tiny and getting manual blood work and blood pressure checks would be too much of disturbance for her, they outweighed the risks and benefits and decided to leave this line longer. They did have to poke her outside of the line two days ago to get a blood sample for bacterial culture, this was very painful for me to watch, her veins are so tiny, but the nurse managed to get the blood sample from the second attempt from her foot, it didn’t work when she poked her hand… after this she was also given extra blood through blood transfusion. It is typical for babies this size to get frequent blood transfusions. They are so little and even small blood samples take out too much blood, so a transfusion is a necessity.

Today the blood culture came back negative, so yeeey, she does not have an infection, and her blood work is fully normal. This means that the line is not contaminated, but they will still remove it in two days after which I will finally be able to hold her skin to skin on my chest!

A day after she started tolerating all of her feeds and pooping well and since then her feeds were increased to 3 ml per two hours and she is digesting all of them.

My motherhood

It is sinking in more and more for me that I am a mother. It was difficult in the beginning, I felt almost helpless, useless. My baby is in the incubator and I can’t hold her, cuddle her too sleep. Each time I looked at her I started crying because she was just so tiny and fragile and I felt so much love for her still but I couldn’t understand how I can be a parent, am I even a parent? These were the first few days. Now I cuddle her to sleep, sign her songs and prayers, I change her diapers, pump milk for her every two hours, the nurse lets me put cream on her and massage her body when I am putting it on. Every time she gets a procedure, I am there to hold her and this helps her cry less, or not cry at all, I hold her soother to calm her down and she loves my songs, she calms down and falls asleep immediately. I fully feel like a mother and only cry sometimes because of how much I love her and how much I am thankful to God for this miracle. I am so proud of her, she is strong, resilient, she has an amazingly brave character. I sleep over at the hospital most of the nights now and go home only sometimes. When I wake up every three hours at night to pump milk, I make sure to go and cuddle her for a few minutes and tell her how much I admire her, how strong she is and tell her words of blessing to grow, gain weight, I tell all of her organs to develop properly and pray for complete health. Mother’s prayer... all babies need it.

I am a mother, day 3

March 23

Ivanna Marie was born on March 20, 2018 at 3 pm, her birth weight is 390 g, gestational age 24 weeks and 6 days. It’s day 3 of her life and she is doing so well! She will stay in NICU (Neonatal Intensive Care Unit) for the next few months and I am with her daily.

Now about how it all happened… The morning of March 20 Dr. Stefania came to do the ultrasound herself, she knew that this could be the day according to previous ultrasound report. She told me that Reverse-absent Doppler flow increased as it would be expected and it means my baby could have minutes or days, we don’t know, but if I want to do everything to save her, then now is the moment.

The one moment I will never forget, and when I think about it -  I can hear this sound in my head so clear, it was exactly 2:59 pm on the clock above me, and I heard something you would never expect to hear from a baby of this gestational age, and it is a sound of baby’s cry… not load… a cry of a very tiny baby. A fighter baby… baby Ivanna. The happiness I felt cannot be compared to anything, I was crying, Andrey and my sister who were in the operating room also starting crying from happiness. From that point I knew that this is it, this is my miracle, my daughter, my princess-fighter.

Doctors were amazed. She even refused to be intubated with a ventilator tube since she was breathing well on her own. I was able to see and touch her as soon as the numbness from epidural wore off. I was in a lot of pain but I went to spend time with her as much as I could during the 48 hours while I was still admittee at the hospital.

Doctors say that the first 72 hours are the most crucial, that’s when the baby adjusts and major interventions at this point could be critical, but she did not need any interventions in the 72 hours, she already graduated from this first milestone. Her head scan in normal, blood results as well, her sugar was normal and still is and she has been fed 0.5 ml of my breast milk every two hours. The first two days she refused to take a ventilator (doctors tried to put her on it to help her breathe but it came off), she was too fussy and crying when they tried doing it, so they decided not to ventilate her (she was still put on it today though since her lungs need this aid for now while she is so tiny). The only thing we are waiting is for her to poop and it is expected that micro-preemies don’t poop in the first 48 hours.

I am so amazed at the support system that the hospital has for families in this kind of situation. I can go on and on about it and I decided to write more about it since it could be a good resource for others. So I will try to slowly cover a few aspects in the next posts.

About us – and thank you everyone who is asking for your care… these three days were very busy and I wasn’t able to respond to a lot of your messages. Of course there is so much quick learning and so much information that we had to process in the last three days.

Our main priority right now is breast milk (yes, I will explain why) and organizing our life around our baby. We are so blessed that the first priority is settled now and it took quite a bit out of an in-pain on meds mama but it had to be done and I am so happy it is going well.

Micro-preemies can’t survive on formula, they could on donated breast milk, but of course I only want her to have my milk. The nurse (there is one nurse per new NICU baby at a time!) feeds it to Ivanna through the tube (0.5 ml every two hours) and she also gives a little bit to her mouth so that she feels my smell and her digestion slowly adjusts.

I am so glad that NICU invests so much into this important aspect; they even gave us a breast pump for home without charging any rental fee ($3000 worth one and we will return it after the baby is discharged) but they also gave us $210 worth of pumping  parts completely for free! Each NICU family gets it because of some guy’s humongous donation!!! It’s amazing that you don’t have to worry about this… Andrey went to get it the morning after the c-section and the nurse taught us how to use it, how to sterilize the parts etc before I was discharged from the hospital. My baby’s room (there is one baby per room and I can sleep there on the couch if I want to) also has a pump so I need to only carry the parts and I can also use the hospital’s sterilizer. Now I am producing so much extra milk that we are freezing it for the times ahead, I am so happy about it. It was crucial that during those two weeks that I spent in the hospital before birth, despite all the hard things happening, I was able to pull myself together and not stress out, eat well. It is very typical for a woman not to have breast milk after c-section for days or not have a lot of it and stress/nutrition are major factors.

I am doing well, it’s been three days since the c-section and post-surgery pain is still pretty intense but today I stopped taking pain meds since it’s getting better…  and I want milk quality to be better. So we will see if I can manage. I was discharged last night and went home to sleep and finally see my puppy after more than two weeks (he is so huge now!). 

Today we went to see Ivanna and later had to do so much around the house, do a lot of errands, it was a very busy day. I had to prepare and organize everything so that I can start spending most of my time in NICU with her.

Our lives in the next three months will look like this: Andrey will drive me to NICU (it’s a half hour drive without traffic) at 6 am each morning and pick me up around 7-8 pm in the evening. On some days I will sleep over at NICU especially once I will be allowed to kangaroo her more (soon they will start allowing me to put her on my chest, for now I can only hand hug her). I have to pump milk every two-three hours, including at night, so it is going to be a different life. I have to eat well so there is not much time for doing that but this is the parent life. Parent life has kicked in faster than we planned and it’s a different kind of parent life. Baby is not at home, baby is in the incubator… everyone tells me that NICU is something you have to take one day at a time, there will be many high and lows, it will be a very difficult experience.

I am taking it one day a time and I praising God for every little victory. It is all because of Him only.