My due date, Ivanna's "corrected age" birthday

This post was written on July 4 which was my due date but i didn't have time to post it until now!

July 4 is the day Ivanna was supposed to be born. And this is one of the most bitter sweet days that we've had so far.

We went on a stroller ride outside the hospital, she got a crib instead of an incubator finally and all the NICU nurses, doctors, high-risk nurses, my OB team and all the NICU moms got a cake (Russian Napoleon).

I found out that the main doctor made a decision to keep Ivanna alive... Mostly because Ivanna was crying when she was born which meant that her lungs were strong. Also the scale kept showing error and noone is really sure what her weight was, it was possibly too small for the scale... 390 g number was something the doctor had to settle on and it included a few things, not a naked baby weight (plastic wrap, a hat). Such a small baby is usually a dismissal as a non viable but because Ivanna was "scwacking" and seemed very lively when RTs and the nurses asked what to do, she told them to put the IV lines into her belly button and out her on CPAP (two standards procudures for preemies). So she could have easily done nothing and dismissed her as a non-viable baby. I'm so thankful for this doctor, she is my hero forever. Now she is so proud of Ivanna, same as all the other doctors are nurses, they all consider her an extremely exceptional baby.

Today I was surrounded with so much love and support from the doctors and nurses, they are our little family...

One of the doctors helped me fight for getting permission for her to get outside, I can't disclose the details since something very rare infectious was happened in our pod which was the reason why I wasn't allowed to take Ivanna outside the room. However, it was resolved and so the ruled didn't make sense to anyone... Ivanna's main Boost Team doctor went out of her way in trying to talk to infection control a few times (and it also took a nice email from me) and finally we got the permission! It made me feel so amazing to have her outside in the sun, I was almost balling my eyes out from happiness...

This was the morning. In the afternoon Ivanna had an eye procedure, it wasn't an easy thing to watch. But I'm so thankful for the recent medical advances. Ivanna had a stage 3 ROP in both of her eyes and even when she was born I was warned that most likely this will happen since almost all tiniest babies get an excess blood vessels growth on the retina which if not treated can lead to retinal detachment. There was only 20% that Ivanna's stage 3 retinopathy of premature won't go away on its and will cause issues. So there was 80% that she would be fine. But these 20% would be devastating and could mean an eye surgery or even loss of vision. Since the treatment that she received today was just a needle in the eye, no risks, it was totally worth it. Its a very common procedure, last not even five minutes and half an hour later Ivanna was totally comfy as though nothing  happened. Four years ago this treatment was not available at Sunnybrook and all babies had to go to Sick Kids hospital for a laser eye surgery. As hard as it was, I am extremely grateful that this medication can take of ROP. Stevie Wonder wouldn't have been blind if this existed back in the day. He was left blind because of ROP since he was born early too.

We will be in NICU for another few weeks, I'm expecting about 2 weeks or so. Partially due to ROP but mostly due to Ivanna needing to gain more strength to be able to fully breastfeed on her own. She does it partially now and she sleeps a lot which is great since it helps her gain weight. She is already 2066g! Yesterday she was 2018g haha. Going outside in a stroller and seeing people's reaction about how tiny she is made me not "in a rush" to get home. The more time she spends here and grows, the better. Once she fully breastfeed she might not be growing as well since a lot of energy will be exerted for eating. Now she gets a lot of feeds of my milk through the feeding tube, so this helps her grow faster.

Waking up from a long dream...

This blog was written some time during the NICU journey at the end of June but I never had time to finish it and publish it until now.



Today I was hit with an overwhelming emotion. I was hit with a realization of what has actually happened during the last three months.

When you live in the moment of an accepted terrifying challenge, everything becomes normal, usual. As time passes and you look back at the photos of things that your brain has already almost erased from the memory, all of a sudden a wave of forgotten reality hits you and you start weeping. Was that really happening? It can't be. It doesn't look possible. It's too much, beyond me. I couldn't have gone through this sane. How did I do this?

March 20 seems like a day out of a movie.

That day when Dr Stefania told me that if I want to give my baby the best chance of survival then today is the day for her to be born - that day I made a decision. A decision to be by her side, cry, pray, not sleep, for what they told me then would be half a year or even longer hospital stay.

Ivanna is a very small baby now, she is almost of the age of a term baby but she is twice smaller than a regular newborn. She does have chubby cheeks and fatty folds on her legs, she is super cute and her face is always so content and happy, except for when she is too gassy. 

But two-three months ago... Those photos are shocking. I can see the same facial features, it's so recognisable to me that this is my daughter but what is not recognisable is how skinny, tiny she was and how worn out her face was by the breathing equipment. She was a fragile baby who was facing the risks of so many complications, problems, diseases... But I don't ever remember thinking of her this way back then.

Back then when I was in that moment things seemed normal, it never crossed my mind that she is some sort of a malnourished baby at risk, it just seemed like it is my very strong daughter who is slowly gaining weight and slowly being weaned off the crazy uncomfortable breathing machines and soon she will be breathing on her own and breastfeeding by herself instead of receiving my milk through a feeding tube.

Three months seem like a whole life lived.

I wrote all of the above paragraphs yesterday. Today when I woke up I realized something switched in my brain yesterday. Today was the first day I dreamed at night. I've had dream free sleeps for the past three months... Both of the dreams I saw this night were about Ivanna in the future and they were quite vivid.

Now it seems as though my brain just woke up yesterday from a long dream. If I didn't have the photos and if I wasn't writing down things in this blog I would probably remember things the same way you remember dreams. I don't remember the emotions I felt near Ivanna in her first few months of her life. It is as though I was acting on an autopilot the whole time. It is as though certain parts of my brain were shut down and my brain was acting as though it was submerdged in a dream.

Now that I'm awake I can't stop crying. Too many emotions are hitting me all at once.

What a week!

This week we had a lot of mixed emotions, just like any week but one scary thing happened... And a few big victories, big awesome news came our way.

Saturday morning Ivanna woke up with a big blister under her right nostril and on Sunday a similar smaller irritation was on her left one. This meant I can't feed her... They had to place the feeding tube into the mouth instead of the nose and with a feeding tube in the mouth she wouldn't be able to properly breastfeed. This was sad but the good news doctors thought it was a small irritation which will go away in a few days and we decided to take out the tube once a day to let her breastfeed at least once a day.

On Wednesday evening it got worse on the left nostril even though the right one was almost healed and Ivanna was immediately put on IV antibiotics as a precaution. Also the swab came back with the results that it is a staph bacteria but as the doctor explained to me this was a common type of bacteria which can be found on anyone's skin but if it gets into open wound it can cause blisters, exactly what Ivanna had. However, since we were still waiting for a detailed analysis of the type of staph bacteria and since some of these types of bacterias could be very dangerous if they enter the eblood stream - they started IV antibiotics. This was really scary since blood infection for small babies... Are too dangerous. But doctors reassured me that they are almost sure that it is a small local infection which will be done soon. So far today her skin is almost completely clear, she should be off IV soon and we will start proper feeding.

I'm so excited for the feeding! On Wednesday we tried bottle feeding (my fresh milk) and she took 5 ml! On Thursday because of the new IV they didn't let me feed and on Friday she took 15 ml!!! I was so happy! Her full feeds is 19 mls so she almost took a whole feed from the bottle! She takes less from the breast since it's much harder work but we will be working on both bottle feeding and breastfeeding once the tube is out.

We will be sent home on bottle and breastfeeding because we will need to add extra fats and proteins to my milk, that's why we can't avoid bottle feeding and I wouldn't want to do exclusive breastfeeding anyways. Now home seems so close..

also she is 1534g!

And yesterday she finally had a heart echo which kept being postponed a few times and we found out that her PDA IS CLOSED!!!! I was happy beyond words. We all had a big suspicion that it was closed or almost closed since the Tylenol treatment she got over a month ago since her heart murmur became very soft instead of loud (plus she is  breathing on her own which means PDA didn't cause any symptoms anymore) but there was still a small chance that if it is not fully closed then she would need a heart surgery when she is older. But it's a full victory! And she doesn't even have pulmonary hypertension which PDAs can leave as a consequence of all that extra work and pressure on the baby's heart and lungs. Yes, I was beyond happy. She is such a miracle! Born so tiny with a humongous list of risks of health complications and the only thing she has now is a hernia. And that's it. Her rooting / feeding reflexes, alertness, everything is so excellent. She is beyond cute when she is awake and looking around with her big eyes wide open, listening to my voice... Just WOW. God is sooo good.

Ivanna is off the acute care! And off oxygen

Yesterday Ivanna's main doctor came to tell me that she is ready to be completely off the oxygen and she is officially off the acute care and on to the Boost team.

This means there will be no more daily doctor rounds since she doesn't need it and the Boost team is a team of a few doctors who will work closely with me to help me reach full feeds through breastfeeding and bottlefeeding and prepare me for going home, teach me everything I need to know.

It's been more than 24 hours for Ivanna without the oxygen and she did amazing!

Also on Sunday she got her first full bath! She loved it, didn't even cry.

She is turning 35 weeks gestation tomorrow and today she is 10 weeks old. She was born 16 weeks early and doctor said that we have about 6 more weeks in NICU, this means they think we can go home on time for my due date and this would be so amazing. The two major milestones that we have left is get rid of the G-tube and pass the car seat test!

When her main doctor was announcing during the rounds about the end of acute care, her words stuck in my head "on to boost steam at 34 weeks, 390 g baby, who knew..." And both of her primary nurses keep repeating that she is very special, they never see even bigger babies than her doing so well...

Her breast training is going really well, she is eager to take the breast and this is really good! She is slowly taking more and more drops of milk. Next week they will allow me to breastfeed on a half empty breast instead of an empty breast like right now and they will start measuring how many mls she actually took in (by weighing her).

Taking full feeds will take some time, because she is so tiny and breastfeeding takes a lot of energy which she has to preserve for growing, so we have to take it slow since she also has to gain up to 1800-2000 in order for us to be able to go home. And usually this NICU tries to get babies to fully breastfeed not earlier than 37 weeks, and they say that for her weight she is way ahead of herself with how well she does.

I can't get enough of her cuteness, I just stare at her all day as she is cuddling in my hands..

First breast feeding attempts! (Post from yesterday)

Today is a big day, Ivanna tried milk straight from my breast!!! She is 34 weeks and 2 days today.

NICU term for this is called "lick and sniff", this is the first step in breastfeeding. Preemies usually don't start taking full feeds from the breast until they are close to being full-term since breastfeeding (sucks-swallow-breath reflex) takes a lot of energy from a small baby. Starting 34 weeks they start developing this reflex and they slowly feed more and more from the breast. Whatever they don't take from the breast gets supplemented through the G-tube (same as they where getting milk from g-tube from birth) and eventually bottle can also be introduced.

Ivanna did amazing! She latched on right away and totally went for licking and sniffing and then fell asleep after having a few drops of milk. It was a success! Our primary nurse said that she has never seen a small baby allowed to start this at 34, usually doctors allow it around 36-37 weeks when the baby is very small. But Ivanna is so advanced and so they told me I can start!

As for me, it was the most incredible feeling ever... I can't even describe it, and I totally cried a bit because I was so happy  seeing her latch on.. Now she looks just like a normal newborn, just tiny in size. And she acts just like a new born and I can handle her just like you would handle a full-term baby. No more pressure from the oxygen and other inconveniences... She rest of our NICU journey will be about feeding and growing, all the other milestones are pretty much done. The amount of oxygen she gets from low-flow is close to nothing so she will be off of it any day as doctors say.

She had her immunizations on Tuesday, the one that all two months babies get. After the immunizations she spiked a small fever and started to spell so she had to go back in high flow for 48 hours and that's normal with immunizations.

And on Thursday she had a second eye exam. Second eye exam showed that she has Stage 2 Zone 2 ROP but this not an ROP that needs treatment. It might still resolve on its own or she could need medication for it in the future. But it means that her eye exam will happen once a week at this point instead of once every two weeks.

Ivanna is two months old!

Today Ivanna is 2 months old (33 weeks and 4 days adjusted) and she joined the Kill Club, her weight is 1011g!!! She is almost breathing on her own since she is on the lowest possible settings of low flow oxygen. Also, her PDA has gotten smaller!!! And I will start breastfeeding in a few days!

I haven't written a post in over a month due to lack of free time but I will try to cover most of our challenges and achievements in this post.  Unfortunately, I couldn't see her a lot this week due to cold/allergies that I have.

I also found out that her actual birth weight was even lower, around 370g. When the doctors  were weighing  her, they decided not to take out the plastic that was wrapped around her to prevent her from cooling down so 390 g includes the weight of the plastic..

This is more about her achievements and challenges.

Growth

Her current weight is 1011g and even though I am so happy she  reached the kilo , it it still is so far her challenge. According to her growth chart of a smallest possible baby she should still weigh about 1200g now, so she is a bit behind, but there are reasons for it and overall doctors are concerned but this is a small concern. They say she will get there at her own pace.

Diaretics and PDA are the two factors which are slowing down her weight gain. Large PDA makes her heart and lungs work harder and as a result she is burning a lot of calories. However, her lungs are in a good shape, she is at a very minimum breathing support - high-flow machine pressure 6, she could be fully off the breathing support very soon. She has been on diaretics medication for over a month and this is the second factor that is slowing down her growth, however, yesterday diaretics were stopped! Doctors decided to do this to help her grow and also since her lungs are doing so well, they hope that diaretics are not needed anymore.

PDA

As I wrote in the previous posts, PDA is a bypass between aorta and pulmonary vein which all inutero babies have, and which is supposed to close a few days after birth, yet for some babies, mostly premature, it closes much later. Ivanna's PDA opened on the third week of life and is still open and as her doctor says, it is like a large and heavy backpack that she has to carry. She is successful at carrying it since her oxygen requirement is low and she is on one of the lowest stages of breathing support.

Due to PDA blood circulation to organs is not the same and it puts babies at risk for all sorts of scary things, so the earlier it closes the better. Last week was a good week to try the treatment again so Ivanna was on Tylenol for it for a few days and on Monday I found out that it started to get smaller!!! Heart echo confirmed that. This is really good, and as her doctor said, it should completely close soon, I am really hoping for that! 

Apnea, spells and desats

This is where all preemies have their challenges. And this is why we had our difficult or even scary days. Preemie's part of the brain responsible for breathing is not fully developed yet (caffeine medication was proven to help with it so it gets added to my milk) so they sometimes forget to breath and this is called apnea.

It is normal for all preemie's to have spells - when their heart rate drops, when they stop breathing (apnea or them forgetting to breath) and/or when their oxygen saturation drops (they have non-invasive probe attached to their arm or leg which measures the level of oxygen saturation that gets to the organ tissues). So when a spell happens the monitor alarms will beep and I will see the numbers dropping. Most often Ivanna comes back herself to the good numbers and the nurse won't run in. However, if Ivanna doesn't come back herself then the nurse's alarm will ring no matter where the nurse is and she will run into the room to help (either increase the oxygen level or reposition the baby, or a few other things which could help).

So a bad day is when Ivanna would have a lot of these spells. Reasons for them - gas in the bowels, air in the stomach which gets in with the  CPAP air pressure, her being uncomfortable from the masks, PDA causes it too and simply the fact that the baby is premature is a reason in itself. We had a few really scary times when the spells would be so deep and long that the nurse would have to call in a respiratory therapist and I would start crying after seeing my baby pale and almost fainting. This was so scary.

Right now this is a thing of the past though. Since Ivanna was switched to high-flow oxygen machine, and later to low-flow, she stopped having spells! She only has a few dips of heart rate which are normal for preemies.

Breathing progression

As I wrote in the previous post, on April 13 Ivanna was taken off the ventilator and switched to another breathing machine called CPAP. Three and a half weeks later on May 4 she came off the CPAP and on to high flow rem canola (which was heaven comparing to CPAP for Ivanna). And on Friday of May 18 Ivanna was taken off all breathing support! She breathed on her own for over three hours and later started to get lower saturation and she was put on low-flow.

CPAP started on High Frequency HFO mode which is similar to ventilator since airpressure was sent to her lungs with a vibration of a certain frequently to help her chest make the breathing movements.

A few days later she was switched to constant pressure non-frequency mode which meant she had to do the chest breathing movements herself, pressure was only helping keep her lungs more open so that they don't get tired. She started at a pressure 10 and every few days it was weaned to 9, then 8, then 7. At CPAP 7 she started getting pissed at the machine and the masks/prongs and all the air that gets into her belly because of it and I remember for a few nights she had a lot of deep spells to the point that I was purely panicking and balling my eyes out.

Her primary nurse made a decision to try out pressure 6 with which she was able to change her interface to much softer mask/prongs. Ivanna got really happy for a few days but then her face started to get tired from this mask/prongs as well. Plus with getting older her character was showing off more.

Thursday and Friday of two weeks ago she went into a mode of throwing off her masks and prongs non-stop (she figured out how to do it by turning her head and faceplanting and then crying because the prongs would be in her mouth instead of the nose or a mask would be completely shifted off).  Doctors thought that it was too early to take her off the CPAP since she was not old/big/strong enough but by Friday midnight they decided to try since she was just not getting any sleep and burning a lot of calories from crying and fussing.

She was switched to high-flow machine which doesn't have any annoying masks or prongs , just a thin nasal canola which didn't bother her and she loved it so much....  High-flow machine is still a form of CPAP since it does send pressure into lungs but the pressure is less stable with nasal canola. She just slept and slept and slept and I was so happy. Plus this machine is so quiet, you don't hear the air pressure at all... She was still getting a lot of air into her belly but when she was working on pushing out the air, she didn't have spells like she had before. 

After more than five days on tylenol, which was prescribed for her PDA, nurse practitioner noticed that her murmur started to sound different, which could be a sign that PDA started to close. That day Ivanna's breathing became even much better. She had almost zero spells! 

On Friday May 18 we decided to give her a challenge to breathe on her own and she did well, more than three hours completely fine! Then she started to show signs that 21% room air oxygen is a little not enough. She was put on low-flow machine, lowest settings.. This machine doesn't send any air pressure into lungs, it only adds a bit of oxygen concentration, much less than 22%. So instead of 21% Ivanna required 0.000somthing more.  A tiny fraction of a percent! As long as it makes her happy! and soon she won't need it! Nasal canola is even thinner and this machine doesn't send air into her belly, so I can't complain! I haven't seen her since Thursday due to my cold though, so I have yet to see her on low flow...

Overall I can't believe how far she has come along... Being on this minimum breathing support considering her age and weight is truly awesome, doctors admire her. I can't believe how strong she is!

Feeds

She is already eating 13 ml of my milk every two hours and the milk is fortified with extra calories to help her grow. Sometimes she pushes back some of her feeds but with low flow this doesn't happen anymore. It was happening up until low flow since she was pushing out the air out of her stomach and the feeds would come out as well.

She does have a hernia due to all this pushing and doctors say that it will either resolve on its own or she might need a surgery when she is older.

Eyes and brain

Last Tuesday Ivanna has an eye exam. All preemies have it at 31 weeks but hers was delayed due to her size so she had it at 32 weeks.

As my friend said eye exam is a pure baby torture. It is a very invasive procedure where they dilate and freeze the pupils and stick out the eye balls to check the retina. I missed it since I had to attend a parent meeting as a part of a research that I agreed to participate in and it was probably for the better. When I was back Ivanna was peacefully sleeping and the nurse said that she did well and cried only a little.

Her eyes are good! All preemies are at a high risk of retinopathy of prematurity (ROP) when the blood vessels grow over retina and in this case blindness is very preventable by a surgery, that's why this eye exam is mandatory. She will have these eye exams every few weeks and they will continue even after we get discharged.

All of her brain scans are also coming back normal! The smaller the baby is born, the more he is at risk of brain bleeds which can cause development issues. So I'm really grateful that her brain is normal. Also nurses say that all of her reflexes are amazing, she is even advancing in them. Her sucking reflex is very strong and in a few weeks I might start breastfeeding!

Kangarooing

It is so hard that I couldn't hold her much this week, but it is better not to risk due to my cold, we will have a whole life ahead of us. 

After she was off the CPAP I started holding her on my chest for 4-7 hours a day I just can't get enough... When she was on CPAP, I held her around 2-4 hours depending on how she was feeling and it wasn't that easy to hold her for a long time, it was constant re-adjustment of a mask or prongs, she was always wiggling and moving a lot since she was pushing out the air from her belly.

But now it's priceless... She either peacefully sleeps since she is super comfy or when she wakes up she just stares at me. It is so cute, she does pull her head backwards so that she can see me and especially when I start speaking she opens her big eyes and peaks at me. I love it so much, I can never get enough of cuddling with her. She falls asleep to my lullaby and listens to me speaking with her. 

Rollercoaster from out of this world...

NICU experience is something out of this world. Before I gave birth I watched a bunch of youtube life story videos about someone’s experience of having a micro-preemie and it seemed too scary and impossible. Now I don’t call it scary or crazy, I just call it “out of this world”. I feel like all the preemies are angels who pick certain parents and then come down unexpectedly to walk a certain journey with their scared and weak parents as a result of which, whether the baby survives, or not, whether the baby comes home super healthy or with challenges, parents don’t come out the same, their life changes forever.

On Monday, as some of you saw from my Facebook post, my newly found friend’s baby died. This was the toughest day so far, I couldn’t stop crying for a while and she told me everything and what she had to go through… How she held her baby until his last breath and how perfect he was, that he was like an angel with a perfect face… I just can’t imagine. And I met so many mothers here who lost a few preemies before or lost a twin a few weeks ago, or had still-birth, too many sad stories like this in a few weeks. And at the same time so many girls I met already got discharged and their babies are doing really well yet all of them had a story of what highs and lows they faced here in NICU. Having a preemie means having a fragile little angel with a ton of risks and having to face so many decisions which have risks on all sides and there is never a wrong or right answer to the choice the doctors or you have to make.

I never thought this world existed but I guess there is a reason why things happen. Ivanna is a little angel who has a message for me and I am only in the beginning of getting it. Every day takes me deeper and I don’t know where the limits are. All I know is that I am crazy in love with this little one (she will be one month old in four days and she is already 600 g!) and she is teaching me that miracles exist and there is no logic to this life, there isn’t always logic in medicine and everything is in God’s hands, period. We can’t do anything unless this is what God has predetermined, we can’t change it. We just have to live through it and accept it and be thankful for every new day when we still are able to breath and our loved ones are still able to breath as well…

This week had so many high and lows, it seems like I lived a whole life in this one week now that I think back. So this post will be huge, just too many thoughts have to come out in writing to free up more space in my head.

Let me start with the positive. On Sunday April 8 me and Andrey had the best cuddles with Ivanna ever. My favourite nurse was there and she is truly a magician. When she put Ivanna on my chest, Ivanna’s heart rate right away was perfect and oxygen requirement for the ventilator even lowered, that’s a huge sign that she was very calm, peaceful and enjoyed it being held by me for more than two hours. The same day Andrey held her for more than two hours and it was amazing.

Now Monday. I just cried for the most of the day. I kept bumping into a girl I knew for a few weeks whose baby was very sick and I she told me all the emotions she was going through and how difficult it was seeing her baby in such a condition and when she had to make a decision to pull the tube since the baby’s heart rate was going close to 100 (at 100 they have to call code pink and resuscitation can just kill the little one…). He is now in a better place and this woman is so strong, I can’t imagine what she is going through… I just pray for her…

That day I also tried cuddling Ivanna and it was a terrible idea. What I learned, and I swear it is soooo true, babies, no matter how small they are, feel all of our distress, fear, anxiety and they reflect it, it affects them right away. I knew it and I was stupid enough, in my terrible emotional place, to ask the nurse to put Ivanna on my chest to cuddle. What happened was so scary. It is a difficult enough task to take a tiny baby who is ventilated out of the incubator and on mommy’s chest and position the tube in such a way that the baby is happy and not distressed. Well this time somehow during transfer the tube got messed up and they had to give her air with the airbag since the ventilator stopped working. After fifteen minutes of trying to get the tube to work we had to put her back into the isolet and finally they were able to fix it. Since they were busy with the tube and forgot to put warm blankets on her, she got so cold, her temperature was 35.8 and it took me more than half an hour to warm her up with my hands… I was so stressed out that she had to undergo this…

The next day on Tuesday our favorite nurse was there again and the cuddle went OK, all though not ideal. Ivanna’s oxygen was ok but her heart rate wasn’t in 150-160s (which means she is sleeping), it was more in the 170s, which is still not bad. I think she felt that I was stressed out and it passed on to her… it is so crucial for me to be strong and not stressed out…

On Tuesday they also did her head and heart ultrasound and got back to me with not so good news. Head ultrasound was good but heart ultrasound showed that her PDA did not get smaller after the course of Tylenol ( I wrote more about PDA and what it means in one of the previous posts).

Now that’s where the rollercoaster for me began. I knew that they were going to suggest ibuprofen (advil) as the next treatment option. I was ready for this suggestion and after talking to Dr. Weiss for almost an hour I was convinced in my decision to refuse this treatment. He said that he did not oppose my decision and he will discuss everything with Dr. Ng and instead go with the conservative symptomatic treatment of giving Ivanna diaretics to help her lungs get rid of fluids and inflammation which every preemie on ventilator gets. When there is tube in your throat and lungs, it will of course cause mucus to accumulate plus PDA could be causing the lungs to work extra hard. Diaretics help to get rid of extra fluid and the electrolyte disbalance, which they also bring about, can be managed with adding sodium to her diet. So this doesn’t directly reduce effects of PDA but it helps manage these symptoms of PDA.

Why did I refuse to give her advil? It was a very-very difficult and scary decision. And up until now I question myself, whether I am doing the right thing… but I have peace about this decision.

It is their protocol to prescribe it. I learned that Tylenol was also a protocol and Tylenol only works if prescribed in the first few days of baby’s life. After that they just “try it” but it never works (not that my nurses have ever seen it work if it was given after the first week of life). Same for advil as I read. Moreover, advil can affect her stomach and digestion. I read in facebook groups that some mommies saw their baby’s have a perforated gut after advil. And this is the scariest thing that can happen to a preemie since the chance of surviving this surgery is much lower than surviving a PDA ligation surgery.

On Wednesday morning rounds one of the doctor’s announced that advil treatment suggested by Dr. Weiss (cardiologist) was turned down by mommy and that’s why Ivanna is on Lasix (diaretics). All the nurses and other doctors looked at me like I am a crazy and all asked “why?”. I told them why. That I didn’t believe it will work and that there are risks. All of them simultaneously told me that they have seen it work so many times and that have never seen it cause gut issues and one of the doctors suggested that she can come and speak more about it to me and of course I agreed.

When we spoke she said that my daughter’s PDA is large and that PDA can cause a lot of damage to different organs since because of PDA blood supply to organs decreases and it can even cause same gut problems, etc. and that she has never seen advil cause damage to the gut. Yet one of the girls in NICU told me that when her daughter had PDA she was not prescribed advil since her daughter already had gut issues (WHICH OF COURSE MADE IT CLEAR FOR ME THAT ADVIL CAN AFFECT GUT NEGATIVELY). My daughter is so tiny, only 600g, and her gut already has to process extra fortifiers, iron, dieretics, cafferine, lots of my milk, how can such a tiny gut not be at risk from advil??? It just didn’t sit right with me. BUT if I don’t give her advil, I could be making a big mistake, since advil can close her PDA and if PDA doesn’t close, she could have a lot of issues.

I was freaking out, what do I do??? Give advil and risk gut perforation or not give it and risk PDA damage other organs? So I asked doctor Ng to come talk to me.

We talked for awhile. Then he went and got Dr. Weiss and three of us talked for awhile again. Wednesday was a long day… What I learned from this conversation was this:

1.     Her PDA is actually not that large (not how it was mentioned on rounds).

2.     PDA mostly only causes damage to the lungs since it makes them work harder.

3.     Ivanna’s lungs so far are doing great and they are not affected by PDA as it seems yet (it could happen later though).

4.     The worst thing that could happen to a preemie is a gut inflammation called NEC. And yes, Ivanna could be at risk for it if she takes advil… they simply don’t know, but it’s possible since she is so tiny and they don’t have any data on advil and very tiny babies.

5.     Yes, no guarantees that advil will help close PDA.

6.     PDA can close on its own and it happens often or it can get smaller and not cause any issues.

7.     There are other conservative ways of helping reduce PDA’s effect on lungs (like diaretics and blood transfusions).

8.     The only guarantee of closing PDA is a non-complicated heart surgery (I already knew it) and they didn’t think Ivanna is at a stage of needing this surgery even if her weight was bigger. Once she gains more weight and only if necessary, they could recommend this suregery but now she is fine.

So the logical conclusion for me was that advil is evil, it can lead to the worst possible decease called NEC. And Ivanna’s PDA right now is not evil, it is not large and it is not causing her lungs much trouble (and it might never will!). So why the heck would I give her advil? Just because it is a protocol. Anyways, I could be wrong, but my gut feeling was not to give it to her. I got a few more confirmations recently from some doctors/nurses and after one of her main doctor’s Dr Ng and main cardiologist Dr. Weiss said that they don’t disagree with my non-aggressive treatment approach, I finally felt peace about my decision. However, at the end of Wednesday, I was so exhausted, so frustrated, so out of all energy and power and just basically depressed and stressed out that I just took at uber home at 10 pm and decided to take a day off at home on Thursday. I was at the hospital for almost a week and these four walls and difficult decisions had its toll on me. I knew I was no good at the hospital and no good to be there for my daughter if I was not myself. This day off of chilling with my God, praying, spending time with my husband (he decided to take a day to stay with me) helped immensely. On Friday, today, I was fresh as never before and full of positive energy that Ivanna needs a lot from me.

And so today was an awesome, HUGE awesome day – they took her off the ventilator!!! I understand that there is no guarantee that she won’t have to go back on it, but I am just so happy that they at least tried and that her lungs can get at least a few days break from the wear and tear and inflammation that the ventilator causes… hopefully she won’t need to go back on it.

When they took that tube off and I could see her face without any tubes on it (before they put the CPAP-HFO mask on), it was priceless, she is too cute and gorgeous and… she looks like daddy! So much! Her hair is not dark like mine, more fair!

It is interesting how this decision happened. When I was talking to Dr. Ng about PDA, at the end I asked him what determines whether she is ready for getting off the ventilator or not since I really really wanted her to get off of it (the new ventilator machine they gave her was too sensitive and it was driving me crazy since it kept not giving her oxygen if her position was not right and it was so scary…). His answer was “who knows, she could be ready now. We won’t know until we try”. And I asked him “why don’t we try??” and he said he will see if we can do it soon. This was Wednesday evening before I had that break down and went home. Thursday I was home and on Friday during morning rounds and I looked at Dr. Ng and said “so what about taking her off the ventilator”. He started a long speech about, you know, how hard it is to guess when it the right time etc and that babies her weight and with her stats could succeed on CPAP and why don’t we try soon etc… this speech didn’t really have any conclusion about when and everyone was just quiet and looking at him and it seemed like he did not want to be the one to suggest when. And then I looked at him again and I said “so when?” He looked at the RT (respiratory therapist) and said with a very non-confident voice “what do you think about today?” and RT said very quiet “ok, I guess today is the day”. And man, was I so happy! I know why they are so non-confident. If she fails and has to go back on the ventilator, intubation is a very non-pleasant invasive procedure and not always successful (Ivanna refused to be intubated on her first two days of life, she had to be on CPAP). But the point is, getting even a few days break from intubation has these huge benefits! Re-intubation is less invasive and stressful and harmful then being off the ventilator for a few days even as one if RTs told mea. But I am praying that she won’t have to be intubated again. She looks so much happier without it! And I love it how I was able to push them for it and so far it is a success! Her oxygen requirement lowered even more since she was extubated!

This was a long post! Here is a picture of Andrey cuddling Ivanna!