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.

Baby update 3, March 19, 2018

Today was another day “on the edge”. Doctors were discussing whether to do a c-section asap or not. And today is 24 weeks and 5 days, we are getting close to my first small milestone of 25 weeks. The healthiest less scary option would be 28.5 weeks and weight over a pound, I am believing for a miracle of even a bigger weight/gestational age.

So one of the doctors saved the situation, Dr. Stefania, she is really great. She repeated the measurements herself with an ultrasound machine while the rest of the high-risk doctors were standing and starring and waiting if the measurement will be confirmed. But it wasn’t! Big relief for at least till tomorrow and hopefully more and more days.

This morning Doppler ultrasound showed an intermittent reverse flow in ductus venosus instead of absent like it was before and this would be an indication that we can’t wait longer since things are getting even worse that what they already are. But because Ivanna is doing so well, she is moving a lot, even breathing, her heart rate is great, they told me that they will give me till tomorrow since she is doing strong. She needs every day she can get in the womb and they said till tomorrow she should be ok and then tomorrow another day of decisions, discussions, depending on all the factors combined together.

But then at lunch my favourite doctor Stefania called me for another ultrasound because the doctors were having a discussion and they weren’t agreeing on how urgent they should do a C-section. She rechecked the Doppler numbers herself, said something about if the baby is moving too much the numbers can be less accurate. She repeated them few times and the conclusion was that there is no reverse flow. This could mean a few extra days for Ivanna in the womb of who knows, maybe even weeks.

Another red flag is my liver enzymes. Yesterday doctor Stefania said that they are elevating slowly and if there is any bigger jump then it means a c-section since it would be too dangerous for my life. HELLP syndrome is what they worry about and they say at this stage I already have a preeclampsia. If the baby was at a different gestational age and I wasn’t telling them to do everything for the baby, they would have already done a c-section for my sake. But we are giving the baby one each extra day at a time, and at this time I am safe, but on the edge... they repeat blood work every day so I am in good hands. She said that in the best case scenario these enzymes will still jump in the next two weeks since liver can only take so much before it gets to HELLP. “Unless, she said, you believe in miracles”. And I said yes, miracle can give my liver more time. Thank you everyone for your prayers again!

Baby Update 2, March 15-16 and some more pre-history.

Thank you everyone for your kind words of support and for your prayers. First I was shocked that apparently, as someone explained me, if a non-public post gets too many comments, Facebook starts showing it in timeline of many others who were limited from it… but now that I am receiving so much encouragement my faith index went up even more, I feel your prayers and Ivanna does! And I am receiving a lot of private messages from people who share similar stories that happened to them and this really is so great to hear, I needed to hear it!

So yesterday the monitoring began. Ivanna Marie is stable, her “well-being” number always comes back at 6/8 or 8/8 (tone, amount of movement, amount of lungs muscle movements and amount of necessary amniotic fluid) and the heart rate monitoring always comes back as very healthy. And she continues kicking, I let her listen to healing prayers often (she loves it and often starts dancing and kicking when she hears it) and I have a lot of peace about this situation now.

My only major difficulty is sleep, I can’t sleep more than 4 hours a day and I was probably getting migraines because of it. But since I took that first steroid shot, the next day all of a sudden I had so much energy. Yesterday I had a second one and today again I was full of energy and no migraines! I hope that migraines are done though since I am not feeling stressed anymore. Not even fearful.

Another thing is I can’t eat between 11 pm and 11 am since I have to wait for all the morning tests to be done so that the doctors clear me from urgent C-section that day. If any of the morning test (bloodwork, ultrasound of placenta flow and baby well-being, half an hour heart-rate monitoring) comes back worse than what it is now, then they will put me into c-section right away, so this means it’s better not to eat until the doctors clear me. It’s hard since I am usually starving by 5 am lol. But these are all little things… and my appetite is good throughout the day.

Some of you were asking me what causes compromised placenta or IUGR (intrauterine growth restriction, small babies). There can be many causes and my case is a rare one. My placenta wasn’t formed properly, the condition is called Velamentous Cord Insertion. This means the umbilical cord does not attach to the center of placenta as it should, but instead it splits into three blood vessels and attaches to some outer layer of placenta. This way placenta simply can’t function to its full capacity. Depending on the severity of IUGR women could carry the baby close to full term as long as Doppler numbers don’t drop.. but mine dropped on the 23 week… now because the baby still managed to gain weight doctors are becoming more encouraging to me. Before they were only trying to convince me that baby has not much chances… but this is not the first time it happened during these five months.

Scary news in October

This is about October, when I was only 5 weeks pregnant. The first time I received the bad news it sounded like this “Maria, you have a serious condition called corneal pregnancy. This is the most dangerous form of ectopic pregnancy, meaning that fetal sac (which is not an embryo yet) is located on the corner of tubes and uterus and there are so many blood vessels there, that if it ruptures, the surgery will be very complicated and you might lose both the tube and a portion or the whole uterus. So you should take the chemo pill for the abortion and your next pregnancy will be better”.  Ultrasound took them awhile since they were confused and couldn’t figure out how come the fetal sac is in such a strange place… had a few doctors come by and look at the images while I was laying there and their faces were very shocked and perplexed.

I asked them if there is a chance they could be wrong since at this stage they did mention that ultrasounds can still be unclear. They said they are not 100% sure but it definitely looks like the fetal sack is not quite inside the uterus as it should be.

I asked them what other options I have except for taking the pill. The answer was “well, you are bleeding so much, you will probably miscarry by morning. So we can keep you on IV for the night at the hospital, you can’t et anything in case we have to operate and tomorrow we will repeat the ultrasound”.

So guess what happened next morning… The whole night I was praying, I had to tell my parents about my pregnancy and they were praying too and they told me to wait and see, in the morning I will find out that the doctors are wrong. I also read about one girl who had a similar issue and her doctor jokingly said “sleep on the right side” implying that what what if fetus climbs down since it was on the left side high up. And funny enough it helped her even though at this stage implantation already happened and fetus doesn’t just climb down anymore, but who knows!

So I did that! Me and Andrey were talking to out future baby and telling him/her to climb down, we had a lot of faith. At the morning ultrasound the radiologist’s face was funny again and she kept looking at the same picture so many times. At the end of the ultrasound she said, “Congratulations, pregnancy is intrauterine!” with a smile on her face. I started to sob from happiness. Gynecologyst said that I will still need a lot of follow up to see which way the placenta is growing since it was still too high and to close to the tubes and if it grows too close to the tubes, it could be a problem.

But about further adventures, there were more of them of different kind, later. I hope this helps some of you girls to know that doctors can say a lot of scary things but tests can still be inconclusive, and they can be wrong, or sometimes they just scare you with the worst possible outcome so that later you don’t tell them “how come you did not warn me serious enough about this?” But you should listen to your inner feeling and don’t make any rush decisions… I am hearing more and more of these stories later and I am sure a lot of you had something like that happen. I understand the doctor’s logic now but it was hard in the beginning.