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!
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