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.