In honor of World Prematurity Day, the Northern Lights and Reflections blog is hosting several people's prematurity stories. I hope this helps anyone out there who wants to understand more about what happens when a baby is born "too soon".
Nathalie’s Preemie story
Nathalie’s Preemie story
When I gave birth to my third child a year and a half ago, the doctors and nurses told me time and time again how he was very small for his gestational age - 1.985kg at 36 weeks (that was part of why I had my c-section for him).
I, on the other hand, was thrilled: this was my biggest baby ever. He was the first one who was not whisked to NICU right after birth (he made it 12 hours later, just so he’d officially be part of the family).
My previous baby, born 6 years earlier, was born at 35weeks and 3 days, and back then I had had the same reactions from the nurses since she was also an IUGR baby. But I and the doctors who remembered me from my previous birth were not fazed… at 1.715kg she was born almost three times her older brother, whose story I am about to tell now.
Elchanan, my firstborn was born via emergency c-section, at 26 weeks and one day of gestation. I had been in and out of hospital the “whole pregnancy for various issues, but was told I would not leave before the birth when the doctors discovered that the umbilical cord was not functioning properly, at 22 weeks. At 26 weeks and a day, a few days after having the “lung-shots” (steroid shots) to help my baby’s lungs mature, the fetal monitor I had to use three times a day showed that he was experiencing fetal distress.
To say that the surgery looked exactly like in the “real emergencies” you see on tv shows would be the best way to tell what I went through (including a wonderful doctor who took the 5 seconds needed to give a “it’s going to be OK” hug, and the fact that my husband was taking his entrance exam for college while I was going through this).
Elchanan weighed 630 gr at birth, and had to be whisked from the hospital where I was to another one at the other side of town, since they could not take care of intensive care babies like mine. He was then placed over half a diaper (which was still enormous for him) surrounded by tubes and monitors lying on his “open isolette” (open so the nurses can access to him faster if needed).
Than G-d we already had experience with ICU from when I had heart surgery, so most of the surroundings did not appear too weird to us. He had a pulse-oxymeter, heat sensor, ECG leads, umbilical cord –iv, more ivs, feeding tube, intubation (for breathing), and a tiny blood pressure cuff.
For the first few days he was not even washed or handled more than was strictly necessary. I was even told a day after the birth that they could not say a thing about his chances for the first 28 hours, then week of his life. I was also told that he had a 50-50 chance of survival, and that was without even knowing what complications he would have and what quality of life he’d ever have even if he did survive.
The first 5 days of his life all I saw of him was a picture. For some reason the doctors in my hospital did not want to let me go see my baby in the other hospital even though there was an ambulance service for this purpose for mums like me (maybe it was because of my own health problems. I’ll never know since I was not “with it” enough to demand explanations/to be allowed to go). When I did see him he was so tiny, so red, so “inhuman”. But he had tiny nails at the tips of his fingers and I declared he was the cutest baby in the world and was perfect…
When he was 10 days old I was allowed to hold him for 20 minutes (to the minute) for the first time.
This did not prevent us being near him many many hours of the day, talking, singing or learning(!) with him.
We stayed in NICU for a total of 15 weeks- till he reached 41 gestation weeks.
During this time, the staff joked with us that the baby had read about all the possible complications a preemie could have.
His PDA did not close at birth, and the medicinal regiment did not work. So at 3 weeks old and 750 gr, he had an operation.
He did not manage to get rid of the respirator (although he took the tubes out a few times by himself...) and needed to get the high frequency respirator. When there was no change after more than 48 hours, I was told that the chances he’d ever breathe independently were small. A trip to a friend with many tears shed and her kids running through their area to ask for Tehilim from everyone and 48 hours later (the next day I couldn’t face going to NICU to visit my son, for the first time in over 6 weeks) and we got the news that he had been doing an incredible and miraculous (!) recovery, and ten days later my son was breathing all by himself, with some oxygen added. He was just over a kilo by then, and could at last be transferred to a closed incubator, and enjoy some (relative) quiet.
We knew from the sonogram done while I was pregnant that our baby had enlarged brain chambers, a sign for Hydrocephalus, and sure enough he had this. That was taken off by inserting a needle to take out the surplus liquid till we got out of NICU and had the surgery he needed surgery (more about this later).
Preemies still have not developed completely and one of the fragile areas is the eyes. Our baby got the feared ROP up to one stage before the one when surgery is needed, and it was getting slightly worse with time…till one day it just reversed totally.
And of course he had to learn all the basics: when Elchanan was ”34 weeks” he was introduced to a pacifier during mealtimes, so he’d learn that sucking meant getting food. A week later we started putting a few- so few- CCs of milk in it so he’d learn how to swallow too. At that stage, by the way, he started to refuse the pacifier if it was “empty”…
By then Elchanan was 1.5 kg and started having some clothes on. Our NICU had some special preemie clothes (the 2 other ones we went through since did not…) but the nurses were still so kind to let me bring my own preemie clothes and make sure to place any soiled stuff in a special bag for me to take home and wash. Considering how busy the staff is in NICU, it really shows a lot -they were so considerate.
We were also waiting for him to gain weight, and to be able to breathe without getting supplementary oxygen. We waited and waited. He reached the 2 kg weight signaling he could go home, but he still needed oxygen. A week or so later, it was decided he’d go home with the oxygen, and we’d cope somehow. This was the good decision since he needed this support till he was 8 months old!
I mentioned how nice the staff was and before I continue the rest of Elchanan’s preemie story outside the NICU I’d like to mention how supportive they were about giving my milk and trying to nurse, even if they did not have the top notch conditions of pumps on premises (there were some serious shiputzim since so that might have changed). Any phone call (at any time of the day or night) was always answered patiently with all the info I wanted given. If I called ahead to say I’d be a bit late they’d try (as much as possible) to wait with the next feeding so I could give it myself. And even when my milk supply almost dried out from just pumping for 2 months straight with little physical contact with my baby, they still would combine the tiny amount I managed to get out over a whole day and add it to one of his feedings, so my son would still get a bit of my very own milk (and so that I’d feel better that I was doing something for him). They even let me try and nurse him after we all knew my supply was so small “just in case” he’d manage to revive it (he didn’t. But I appreciate I was given the chance and not just told he was too small to even try this out).
In any event, 15 weeks after birth, when Elchanan was at 41 weeks of gestation and weighted 2.300 kg, we took him home with his whole oxygen paraphernalia. Two weeks later (after spending Rosh Hashana in the Yeshiva we had left 6 months earlier so we’d have nice tefilot. Yes, with a baby on oxygen and half the food made ahead of time and a good 3 hour drive from his former NICU…) we went back into the hospital- a different one this time- to have head surgery. The procedure to treat Elchanan’s hydrocephalus is pretty “easy” if you can say that about neurosurgery, but he started by having some lung complications after surgery, followed by getting the site of surgery infected, so in the end from a projected 5 day stay we had 3 surgeries (put the tube in, take it out and put a new one in again) over a month and a half. Need I mention that by that time my husband had started college and I was on my own in hospital most of the time (with the help of my mother in law, as much as she could, I have to add).
After we left hospital at last, we spent a week close by the hospital “just in case” and finally got home when Elchanan was 6 months old. At that stage, by the way, he was just about starting to wear newborn sized baby clothes, and still needed supplementary oxygen.
Two months later we were at last oxygen free, and one month later we got the Ok to have his brit mila.
There was to be no surprise about the name: we had named him Elchanan Naftali when he was 5 days old (per our rosh yeshiva’s instructions). Naftali for my grandfather a”h and Elchanan because of the meaning of the name: Hashem has graced. He graced Elchanan with life, and He graced us with Elchanan and the privilege to see him survive against all odds. Now we also know He graced Elchanan with a charismatic personality , love for Torah and an amazing brain.
His brit was well attended and even featured a panel with pictures of him since he was born (9 months, you know….).
By that time we were already going through therapies to help him get over his prematurity back-lag and “maybe prematurity” issues.
Fast forward 9 years, many trips for weekly therapies, checkups at the doctors and work and home.
Elchanan is about to enter 4th grade, like the rest of his age-group peers. After being in a special–ed gan and special-ed class for 1rst and 2nd grade, he is entering his second year in a regular class (with an assistant for communication issues). From being a shy little boy he has become the center of attention in the class (in the good way) and is loved by all who know him. He has knowledge in Torah related subjects well over what is expected for his age, and learns on his own a lot. He also loves reading about history, geography and probably anything else (other than math) you’d give him- and remembers what he reads too. He still is behind with his motor skills (such as playing with a ball or riding a bike) and in math (genetics…) but tries so hard that I just know he’ll get there. And of course he still has his communication issues, but we’re working on that too, and it’s slowly but surely improving.
Our goal is to make sure that in 4 years’ time he’ll be able to go to the high school of his choice, and at a later stage to yeshiva and eventually get married. I know this sound a long time away, but time flies…
I would never wish anyone to go through what we went. I would also never have it any other way.
I am often asked how we went through the first year with him, especially NICU. I reply that we had two choices. Sink or swim. We decided to swim, ignore all the bad things which could happen and just be (then seemingly unrealistically) optimistic. It worked. Looking back, I also don’t know how I survived this period, but I know I became strengthened from the experience.
I had thought that I knew quite a bit about Emunah and Bitachon in Hashem, about seeing the daily miracles in our life, especially since I have my own health issues. Having my son has put all of us on such a different level. He is a walking Kiddush Hashem, and is a wonderful kid with plenty of Hakarat Hatov and good Middot. My husband and I often say we have much to learn from him in our avodat Hashem. My only wish is that he will continue being so incredible, and that we will enjoy much nachat from him and his siblings.
If you want to contact Nathalie, you can email her at firstname.lastname@example.org
Feel free to leave comments here and I'll be sure she sees them!