Archive for October, 2007

oh, and one more thing…

Before I put the history to bed, one piece of good news!  Cole is above his birthweight!  The last weight I saw (over the weekend I think) was 1070g. He was born at 1015g, so that is very good news.   I had thought Lina made it back too – I thought I saw a weight of 550g for her, but I think that was wrong. I looked at her charts today and the latest showed 500g, which was down 10g from a high of 510 (and down 19g from her birthweight of 519). But she’s getting there. I think she had dropped to a low of 450g or 460g.  That’s really, really tiny – in case you’re wondering.

I think I’m all caught up.

The below posts are largely factual.  A little, but not so much about how I/we’ve been feeling.  This is mostly because I was just trying to get the narrative down and I really didn’t want to revisit all the feelings of the past few weeks.  I think I’ve captured most of the major events, anyhow.

I’m going to try to update this blog on time, so that folks know what’s going on.  Like I said, I’ll see how it goes.  I’m not the most reliable journaler…

The latest…

Cole is sick.  He has an infection – they say it is most likely the same MRSA his sister had.  But his is in his blood (hers was just urine).  Yesterday he had some pustules in his diaper area and belly.  Then his tummy was getting real distended.  They started him on a “cocktail” of 3 antibiotics.  When they identify the exact strain, they may take him off of 1 or 2 of the antibiotics.  Today his fever was 101 and he was awake the whole time I was there. He must be feeling pretty crummy.   Because of the distended tummy, he was having some trouble breathing, so they put him back on the ventilator.  I hope that lets him relax and fight this off.  Poor little guy, he can’t catch a break.  Where I wasn’t really worried about it with Lina, it seems as though this has hit Cole much harder, and I hope he’ll fight this off.  I just want to scoop him up and hold him tight to make him feel better.  But I can’t.

 The other news is that he had another head ultrasound today.  While the clot is beginning to dissipate, his ventricles are enlarged.  I guess because of the clot the fluid can’t drain well, and it builds up, causing pressure (I think that’s how they explained it. I need to have some of this stuff explained to me 3 or 4 times before I really get it).  They are having a neurologist look at him, and they may start doing spinal taps to drain some of the fluid and relieve the pressure. If that doesn’t seem to work, they may have to put a shunt in.  I don’t even really know what that is.  The doctor explained it to me, but honestly I can’t remember.

What bummed me out today was that the doctor said that the area affected was “significant” and we should be prepared for deficits. Again, she can’t say how major or minor they will be, but…we should be prepared.  This is a new doctor. The way it works at Columbia is that the attending physicians rotate every 3 weeks. This is a new one who started yesterday.  I like her and I trust her, but it will take some time to get to know her (and for her to get to know us and our babies).  She basically reiterated the prognosis, again being careful to present us with the “worst-case”. I don’t really know if this is based on the new information, or if she’s just giving us the overview, based on the level IV IVH.  What she said wasn’t that different from what we’ve already heard, but somehow I had been hanging my hopes on Cole’s strength (it seemed to me) and his active movements.   That and a few positive stories I’d been hearing.  I kind of felt like I might be fooling myself.  I feel like I did when I first heard about it.

So…another afternoon of tears and heartache.  This hurts more than I ever thought possible.

“Uneventful” is the key word…

After the bleed, things were…pretty stable for awhile.  We continued to worry, of course, but Cole was doing pretty well.  They started to feed him breast milk. They started with 1/2 cc (not much more than a few drops) fed through a tube to his tummy.  It was stop and go for a few days, until he figured out how to move it through his system.  But eventually he got the hang of it, and they started increasing it by 1/2 cc every 12 hours.  He was up to 6 cc yesterday.  They had extubated him awhile back (i.e. took him off the vent) – I can’t remember the exact date now, but he was probably on the vent for 4 or 5 days.  So he was breathing pretty well on CPAP and just generally cruising right along. 

Lina was doing OK too.  She’s so much tinier, but fiesty.  She had to go on a vent for a couple of days too early on.  But she came off a day or so earlier than Cole.  Her issues have been high blood sugar (which is apparently not uncommon for babies her size) and problems with apnea.  She forgets to breathe and her heartrate dips (bradycardia) and her oxygen saturation goes down (desat).  She typically recovers from these on her own, so they are watching her carefully, but not overly concerned it seems.  A slightly bigger problem for Lina was a UTI they identified.  The bacteria turned out to be MRSA (methicillin-resistant staphylococcus aureus) – i.e. anti-biotic resistant.  The doctors didn’t seem overly concerned – it was only in her urine, not spread to her blood, and she didn’t seem to be obviously uncomfortable or sick.  They had her on a strong anti-biotic, so they were treating it and she was responding. 

The only downer of it is that they put her on “contact isolation” which means she has a big green sign on her isolette that warns people about it. Anyone who goes in to touch her needs to wear a gown and gloves.  It’s to take special precautions not to spread it to the other babies in the NICU, but it feels a little like a scarlet letter.  I did take a walk down the hall, and it seems like about half of the babies have the green signs, so I didn’t feel so bad then.

 It slightly freaked me out that no sooner had they told us about the UTI and assured us that they weren’t overly concerned than all the MRSA news stories exploded in the news.  Still, if I’m honest I have to say this was barely on my radar as far as things to worry about.  They identified it, treated it, it’s going away.  Frankly, everything is overshadowed by Cole’s bleed.

Then things got complicated…

They started off doing relatively well.  We heard Lina cry when they took her out.  Her APGAR scores were 8 and 9 (out of ten) at 1 and 5 minutes of life.  They had to work on Cole a little bit.  They whisked him away before we heard him cry, but he did start to breathe on his own.  His APGARs were 5 and 7 I think. 

 They were both on CPAP (as opposed to a ventilator) to start out with.  Saturday morning, things got complicated.  They called me and told me that Cole had been having some trouble breathing.  He had a pneumothorax (collapsed lung), so they had put him on a ventilator, and put a tube in his chest. They said he was doing much better.  On Sunday they started to worry because something in his bloodwork looked off (I think his hemoglobin was low?).  So they ordered a head ultrasound, because they suspected a bleed.

On Monday night (the day I came home from the hospital) we got a call from the attending physician.  She gave me the terrible news that Cole had a “very big” bleed (Interventricular Hemorrhage, or IVH) on the right side of his brain, and a “smaller” one on the left.  We spent so much time with the doctor over the next couple of days trying to understand what this means.  It turns out that the bleeds were a Grade IV (on the right) and Grade III (on the left).  Grade III is when the blood fills the ventrical and Grade IV is when it spills out into the brain tissue.  Grade IV is the worst. 

So what does this mean? The doctors can’t tell us.  Every child is different, and only time will tell what he’ll be able to do, they say. Will he walk? Talk? Play football?  Can’t say.  It’s incredibly scary not to know anything about what to expect.  The doctor has said we’re almost certain to have “issues”. But does that mean some slight weakness? Walking with a limp?  Something very serious?  We just don’t know.  It seems we just have to wait to see if he hits his milestones or he doesn’t. 

 Needless to say, we were devastated. We spent the week crying, trying to read up about IVH on the internet (what we found was very discouraging), talking with the doctor (who was wonderful, spent SO much time with us).   The doctor did tell us the “issues” are likely to be mobility-related rather than cognitive (though there are no guarantees, of course).  Somehow that made us feel a little better. 

Cole is a really active little guy. He moves around a lot – his arms and legs are always going.  He’ll hold your finger if you put it into his hand.  That makes us feel a little better, too. He seems strong.  The doctor said that clinically they don’t see anything wrong with him, and that if they didn’t have this head ultrasound they really wouldn’t suspect a bleed.  She did say once that this was “promising” (though she is always very careful not to say anything to ‘get our hopes up’ either).

Long story short: we are terrified but somehow getting used to it.  I guess you have to, because I don’t think it’s possible to continue to feel that kind of pain all the time. 

How it happened

At my 20 week ultrasound, Baby “B” (Lina) was much smaller than Baby “A” (Cole).  He was 14 oz, she was about 8 oz.  My OB told me that for my next ultrasound (at 24 weeks) I should make an appt with the perinatologist at the hospital.  We were a little concerned, but there didn’t seem to be anything too urgent (she wasn’t rushing me to the hospital, just suggested it for my next routine ultrasound).

 At 24 weeks (Sept 18), “A” was about 1.5 lbs, “B” was about 1 lb.  The peri said that “B” was about 13th percentile, which was not technically IUGR (intra-uterine growth restriction – IUGR is for <10th %ile) but the “dischordance” in their sizes was somewhat concerning.  She wanted me to rest as much as possible and work from home at least 3 days/week. I’d also be monitored much closer going forward.

 The next day I had my routine 24 week OB appt.  My BP was 140-150/100.  My ankles were extremely swollen (they had been for awhile) and I had gained 10 lbs in the last 4 weeks.  My OB was very concerned and ordered a bunch of bloodwork and said no more work (or work from home 5 days).  I was freaked out.  I told my boss I was taking the rest of the week off, and would start working from home the next week. He was totally fine with that.  I basically laid in the la-z-boy all day. 

 I went back to my OB the next week (Oct 25) for a follow-up and my BP was much better (~138/74).  The swelling was down, and I’d lost all 10 lbs.  My bloodwork came back fine.  There was a little protein in my urine, but not even enough to be concerned about. So I figured I was on the right track. I kept up what I was doing.

On Oct 2, I woke up in the middle of the night feeling nauseous.  My upper belly also hurt – pressure up against the diaphragm. I was a little concerned, but I kind of thought it was gas.  I had felt the same way the day before, but it went away when I ate some lunch.  I’d also been feeling it a week ago, but again – it went away by mid-afternoon.  In any case, I had another ultrasound with the peri that day, so I figured I’d just mention it to her.  The babies had both grown proportionally (“A” was about 2lbs, “B” was about 1 lb 3 oz).  She was still so much smaller, but at least they’d both grown.  My BP was OK.  When I mentioned the nausea and pain though…Dr Bond kind of raised her eyebrows and said “I think I’d like to order some bloodwork, and we’ll do bloodwork every week from now on”.  So I left her office and lingered by the nursery, looking at the babies.  I went down for the bloodwork and went home.  I don’t think I was home for more than 15 minutes when she called me and said I had to come back to the hospital.

When I got there, the OB on call from my practice met me and told me that my liver enzymes were elevated and my platelets were down.  This indicated a severe form of pre-eclampsia called HELLP Syndrome.   They would have to give me steroids to mature the babies’ lungs and deliver them in 48 hours, once the steroids had a chance to work.  They would transfer me to Columbia University Hospital in the city, because that was the best place for the babies.  Greenwich Hospital wouldn’t be able to handle babies that small.

I think I was in shock.  I was only at 26 weeks and I couldn’t believe what I was hearing.  I think I wanted to believe that they would be able to monitor me, keep me in bed, and keep me pregnant for a little longer.  But when I got down to Columbia they basically explained the same thing.  They said that even with ‘regular’ pre-eclampsia, they could sometimes do that. But HELLP Syndrome was so serious, and so quickly progressing, that they couldn’t do it.  The doctors explained that some docs actually don’t even think it’s responsible to wait the 48 hours, but with my bloodwork they thought that the risk wasn’t so great and the benefit of the steroids to the babies would be worth it.

The next 2 days (day and a half, actually) were surreal.  I was quite uncomfortable,  and hardly slept.  My mood was OK though. I don’t think I actually believed what was happening.  It felt like it was happening to someone else.  On Thursday morning, they said they expected to deliver the babies that evening around 5pm (48 hours after my first dose of steroids).  But then…they listened to my lungs, and could hear fluid building up.  They decided to pull it forward, and they scheduled the c-section for around 11:30 to give Esref a chance to get there.

And so that’s how it happened. 

Cole, Day 2Cole Kaya Cezzar was born on Thursday, October 4th at 12:04 pm, at 2lbs 3oz (1015 grams).  This is him, the next day. I hadn’t seen him yet, but Esref went and took the picture. He’s blue, because he was under the bili-lights for the first week.

 

 

lina-day1.jpgLina Belen Cezzar was born at 12:05 pm, at 1lb 2oz (519 grams).  Here she is a couple hours after she was born. They brought her to me in my room for a few minutes before they took her down to the NICU.

 

 

I’m a terrible blogger

I started this blog earlier this year, hoping to keep track of what Annika was doing.  Well, that was a bust. I figured it would be – I’ve never been a great journaler.  But in my defense, life intervened.  Shortly after I started it, my mom became very ill, and I spent several months with her before she passed away.  By then I was into the 2nd trimester of a difficult twin pregnancy.  Difficult in the sense that I was already extremely uncomfortable (general midsection pain – lower back, upper thighs & groin).  It felt early for all those aches and pains, but then again with twins…everybody kept telling me it’s a whole different ballgame.  Well, that’s for sure.

 This is a new blog. I’m going to try to keep friends & family apprised of the Cezzar family happenings.  All 5 of us, now.  We’ll see how it goes.


About Me

I'm a grieving mom. I have one beautiful daughter, Annika, who's 3 years old now (born 12/28/04). I also had twins, Lina and Cole, on 10/04/07, born at just 26 weeks. We lost Cole after just 23 days due to complications related to his prematurity. Fiesty little Lina overcame so much and just when she was getting ready to come home with us, suddenly had a complication unrelated to her prematurity and passed away on January 11, 2008. This blog is about getting through it. More...