Well, even though Greg was born in 2004, I was told that it wasn't too late to introduce him here. And I was told that it might help some of you who are still going through stuff, to see what can happen 6 years down the road.
So, my little guy was born on March 14, 2004. His name is Gregory David. He was born at 6:20am, on a Sunday morning, at exactly 25 weeks. It was a very complicated pregnancy... my 3rd in a year, (obviously the other 2 hadn't worked out). I was on bedrest most of the 1st trimester due to bleeding. I was in a car accident at 13 weeks. Had lack of fetal movement at 19 weeks. And then after that, things just went down hill. I just felt like something was wrong from about 21 weeks on. I was told I had the flu, and then a yeast infection, but then at 24 weeks, I was spotting with some weird membranes coming out. Saw my Dr 2 days later. He sent me for an emergency ultrasound. They measured my cervix at 1.3CM, and decided I was imminent danger of delivering, even though I was in no pain whatsoever. I was flown out that night to Victoria General Hospital in BC. I foolishly thought I would be coming home, pregnant, within a few days. But the bleeding picked up, and with it, the pain. And the next thing I know, I am telling the nurses I am in labour.... They didn't believe me, and guess what? I was! I delivered him hours later, even though they had sent everyone away, telling them there was no way I would deliver that night!
I don't know how detailed to get. I mean, it was like yesterday in some respects. But there are also alot of early things I don't really remember. I was told that this is symptomatic of Post Traumatic Stress Disorder, which apparently is quite common in Preemie parents. It is just the bodies way of protecting yourself and letting you get on with things...
Lets see... right after he was born, I heard a sound like a kitten meowing. He was born vaginally, which I understand is not common for micro preemies. They said that was him, and it was a good sign, as it meant he was breathing. They had him on a warmer in my room for maybe 10 minutes while they stabalized him, then he was gone. And I didn't hear anything for almost 4 hours. My brother, dad, and husband were the first to see him, and my brother told me I'd better take pics as he didn't think he would make it through the night. I was told that the first 72 hours were critical, and he had about a 45% chance of survival, but that if he did survive, he had less than a 10% chance of making it without serious mental deficiencies.
He was 720 grams when he was born, or 1 pound 9 ounces. He obviously did make it through those first 72 hours, and pretty much with flying colours. He was intubated at birth, and given surfactent. By day 3, they realized he had extubated himself, so they put him on CPAP. He did very well on this. His lowest weight was 1 pound 6 ounces, and then he started gaining again.
He was considerd a light weight in the nursery, and he was known as the baby who didn't gain weight. He just didn't gain weight like they had wanted. He did well on a drip with breast milk. I don't think they ever had to stop it because of his intestines. I know that was one of the staff's biggest concerns, necrotizing entercolitis. But as far as I am aware, he never even showed signs of it. There was a period of time where we did get the phone call saying he was bradying excessively and desatting lots, and that he had lost muscle tone, and they feard a brain bleed. So we went in, and we gave permission for them to do whatever they needed to. It was a holiday weekend, so no scans were done, and by the next day, he was doing fine again. They wondered if maybe it hadn't just been a bit of an infection instead of a brain bleed.
He was given Indocid to help close the PDA valve, and we were told it had worked and he wouldn't need surgery. By about 29 weeks gestation, he was moved to a level 2 NICU, as he was deemed the start of the nursery. But he did end up moving back into level 3 when he started needing 24 hour care again. It was very much 1 step forward, 2 steps back.
We started querying when we could go home, as we were about 900 kms away from home. We were told the hospital close to us didn't like kids under 3 pounds, but due to space constraints in Victoria, they would take Greg at 2.5 pounds, if he was doing well. He seemed to be doing exceptionally well in Victoria. He had never even needed Bili lights. He was slightly jaundiced at one point, but figured it out on his own. He had needed 4 or 5 transfusions due to low iron levels, but they said it was normal. He never needed surgery, and he hadn't had any serious infections.
His main issues were breathing (he was quite lazy), and eating (also laziness). Basically, if someone or something else would do it for him, he was quite happy with that. He was moved to a level 1 nursery well before his time, simply to try to prove to PG that he was a good baby to take. I think I wrote somewhere else that it was April 6th when we left Victoria, but I actually think it was May 6th when we flew out. We were in Victoria for 6 weeks after his birth. We were transferred to Prince George, which is only 100 kms away from home for us, and so was much more doable.
He didn't do so well in Prince George, and neither did we. We clashed with his Dr ALOT. We had been told in Victoria that he was on course with going home at 35 weeks, but no later than 38 weeks, which is term. Well, in Prince George, his condition just kept deteriorating. He wasn't eating at all. He was pushing all of his feeds up through his NG tube. He was desatting and bradying more and needed full time CPAP, which Prince George didn't like doing. I was living in the hospital and clashing with the nursing staff. Some nurses said it was okay for me to leave and get food, take a break etc. Other nurses would yell at me if I wasn't there 24 hours, 7 days a week, as they didn't have time to do everything for him, and if I wasn't there to feed him, then he wouldn't get fed.
So we all had a really hard time in PG. As Greg started getting to 35 weeks, we started asking if they thought he would be coming home soon, to which they replied "do you want him to die? Do you?'
They tried doing a car seat test with him at 36 weeks, and he failed it spectacularily. I think he was in the seat for about 2 minutes before his O2 sats dropped to about 94%. Big time fail! We started seeing other babies who were only 35 weeks gestation going home, and it was hard, as we had been in so much longer than them, and wanted to go home so badly. But Greg just wasn't gaining weight, and he was having a hard time breathing on his own. Nothing was ever cited as a reason... everyone just said he was lazy. When trying to bottle feed him, he would just fall asleep and turn blue. They said they would never send a baby home on O2 monitors and with a feeding tube. So we were told he would be there until he was a good weight, would eat enough from a bottle, and wouldn't desat for 72 hours.
Now we're getting on to about 38 weeks gestation... and he is still in, even though he is now term, and a good 7 pounds or so. I couldn't room in with him because he was still going back on O2 all the time. They were trying him on just room air, but monitored, to see if he was ready to go home, and he would go like 36 hours... almost there, and he would desat. I don't know how many times I walked into the nursery at 2AM for a feed only to be told that he was starting the clock all over again because he had had a major desat not long before I came in. I would just collapse and start crying. I was so tired of the journey. I was tired and wanted to go home. I hadn't been home since I was 24 weeks pregnant, and here it was, 14 weeks later, and I was no closer to going home. I was tired of eating restaurant/cafeteria food. I was tired of sharing a prison style bathroom with dirty people, and homeless people who just wandered off the street because they had been told there was an easily accessable shower in the Maternity ward. I was tired of sleeping on broken hospital beds, in abandoned rooms... listening to the beeps and bustle constantly... Even watching tv in their lounge was getting annoying. Just little things like that were adding up after 14 weeks.
Now, 39 weeks... he passes the car seat test. We are told it is just down to the desats... If he can just go 72 hours without a desat and without needing assistance, we can go home. We get to 48 hours... he desats. We start over again. He goes 4 hours, and desats. We start over again... He gets to 61 hours... he desats... He desats again an hour later.... He goes another 30 hours and desats again. He is 40 weeks now and we are told that he is too big for the NICU now and we have to move upstairs to pediatrics. We refuse as that means sharing a room with 3 other women, their babies, as well as any other children they may have, as they are trying to make it as close to a home situation as they can.
I ask one nurse who likes me what its like up there for real... and she says if I leave the NICU, I will be with 3 other moms and a total of 11 other children, and she said they were dirty and loud. I started crying and asked if there was any way they could keep me in the NICU. They appeal my case, and I am allowed to stay in my abandoned room, which only has one bed, meaning I am alone.
Now I am wondering why my 40 weeker is still desatting. I start arguing big time with his Dr and saying there must be a reason. He says there isn't a reason and that it is just his prematurity. But I keep pushing, and finally, after having a meeting with the hospital directors, we are told we can have a new Dr.
Greg is now 41 weeks gestation... a week past his due date. He has a new Dr. His new Dr declares him to be healthy, just lazy. 42 weeks.... his Dr is doing a routine exam and thinks he hears something in his chest. Apparently Greg has a murmer that has gone un-noticed for who knows how long. Then they hear a swishing.... They say the initial dose of Indocid he had at birth didn't close his PDA valve, and that it is still open. They declare the murmer and the PDA Valve to be the reasons why he is still suffering minor desats still at past term. It is too late for a repeat course of Indocid though. We are told that his criteria has changed, and if he doesn't desat past 95% instead of their initial criteria of 97%, then we can go home.
He finally gets discharge on July 16th, 2004. Three weeks past term. He is 8 pounds 8 ounces. If he hadn't been discharged then, we would have had to mmove upstairs to peads, which was not what we wanted. We were told he had an appointment a week later with a cardiac specialist from BC Children's, who travelled North twice a year to conduct testing. He goes back a week later and they scan him for signs of the murmer and PDA Valve. We are told that while they had been easily recognizable just a week earlier,... after being at home, they have completely healed. He won't need surgery on either one, although we told that the murmer may reappear when he is older.
Amazingly enough, after almost 5 months on the hospital, he was discharged a healthy baby boy. No hearing deficits, no vision loss even though he had copious amounts of O2... no nothing. We are told to treat him like glass, and no take him anywhere. I said 'screw you, how will he ever build up an immune system if he isn't exposed to stuff?' So we treated him like a regular newborn. No one with a cold was allowed to see him, but other than that... bring it on! We took him to parades, the mall, etc... And he has never suffered for it.
He reached the majority of his milestones well within his age range. He was sitting on his own by November I believe, which was 9 months, but like 5 months corrected. He never crawled... he chose to roll. We were told this was quite normal. He started looking like he was going to crawl the week of his first birthday, so 8 months corrected. He crawled for a week and then started walking by the first week of April, 2005. So 13 months, but like 9 or 10 months corrected.
That is how he has always been. Still healthy. No vision or hearing problems as of yet, and he is coming up 7 years old. You stop having to correct their age after a while. He didn't talk when expected. He had his own language. The Drs said this was bad, so we went to speech therapy. They didn't do dick. I sat him in front of old 80's episodes of Sesame Street, and by the end of the week he was saying the ABCs in almost their entirity. We stopped Speech Therapy. They said his fine muscle skills were under developed. Maybe they were... but more than anything, he was just shy so wouldn't do stuff in front of the Occupational Therapist that he was doing in front of us. When she said it was bad that he wasn't even picking up cheerios (but he was at home), we stopped going. They were treating like a complete cripple instead of just a shy child.
We have had feeding issues, but mainly just that he didn't like certain textures and he had a bit of a hang up in his throat. Some food seemed to be getting stuck under his hard palate (as seen on a Barium scan). So we just had to work very hard at getting him good nutrition in softer foods. So he was on baby foods alot longer than most kids.
But really, when it comes down to it.... he was the pefect baby. He was on a schedule when he came home, he hardly ever cried, and when he did it was just to get attention because he couldn't reach a toy or something. He slept well, in his crib. He napped well... was pleasent. Always smiling...
To this day, he hardly ever gets sick. Not even joking. He gets maybe one cold a year. He rarely has had the flu. I sometimes forget to take him for his yearly check up because he just doesn't need to go... His breathing is fine. He has tons of energy. He never did suffer any mental deficencies like they said... most notably Cerebral Palsy. He is still on the thin side, but is doing fine height wise. I don't think he will be excessivly short like we were warned. If you didn't know he was born a micro preemie, you likely wouldn't guess. He is in grade 1 now, and although he did have difficulty for a bit with drawing and writing, we are told he has caught up to the other boys in class. Apparently, all boys are worse at this stuff than girls. He is now reading, and better than most class mates. He can write, but he doesn't like to. He likes to draw and expresses himself that way. He has an affinity for music, and was given a solo in the Xmas concert this year. We were told that he has almost perfect pitch.
He does seem to be a little immature at this point, and he was diagnosed with mild ADD just a few months ago. We were encouraged to put him on meds, but after seeing some of the other kids in class who are even more out of control than him, we declined, and are glad we did. There are more kids in his class who can't sit still, and he isn't the worst by far. He does have a tendancy to interupt though, so for that reason, he gets sensory breaks and he gets to sit on a wiggle cushion. Basically, the sensory break are just to get him up and walking outside the classroom.
The only real thing that is a left over from the NICU stay are his sensory issues. But even still, they aren't bad. He likes excessive lighting. They believe this is from being in the nursery where the lights can never go out and never be dimmed. So he will turn lights on all over the house, even during the daytime. He has to have 3 nightlights, and he needs the hall light on to sleep. He also needs excessive noise levels to feel comfortable. They believe this is from hearing the bells, beeps, alarms etc constantly. So if there isn't enough noise for him, he makes it for himself in the form of little action type noises. They can be disruptive though, so we have to send him to his room when he does this, as once he starts, he won't stop.
But other than that... this kid is normal. They believe the ADD, the immaturity etc, are all things he will grow out of by the time his is a teen.
Sorry for the long post, but I guess I have perspective into what can happen years later... I will post some pics in another post.
How you getting on with feeding? Preemies can be tricky little poppets! xxx
xx
