Friday, February 5, 2010

How it all began

I thought I'd take a moment and fill you all in on what happened with Jack's early birth. I was absent from blogging for a while due to Jack's health issues and my own recovery, and it has only been recently that I've felt much like I used to (albeit with a big, pouchy belly) and have gotten back to my normal routine.

My pregnancy was normal up to the 20-week ultrasound. I was considered high risk due to AMA (Advanced Maternal Age) at 36, but I was otherwise healthy. Pete and I conceived within the first month of trying, and I never had severe morning sickness during my pregnancy. I was fatigued a lot, which I expected, and I tried to watch my weight, although I think I was on the higher end of weight gain for someone of my average size (a 40 lb gain after 6 months). My OB wasn't concerned, and things seemed to hum along at a nice pace. I took both a prenatal vitamin and omega-3 supplement religiously, and stayed away from such things as second hand smoke (Pete is a smoker), toxic fumes from paint and such, and the usual food no-no's for pregnant women.

Jack was measuring correctly at the 20-week ultrasound, seemed healthy, and no problems were found. Things seemed great, I felt great, and I was actually only worried that a) I'd have a big baby, since my mom's babies were all 9-10 lbs, or b) I'd have a small baby (4-5 lb) like my sister did, who mysteriously delivered both undersized babies at the 36-37 week mark. I never imagined what was about to occur.

At my 24-week checkup, it was found that my blood pressure was high, after having been low or normal for my whole pregnancy (and even before I got pregnant). For some reason, the nurse didn't pass this information along verbally to my OB, and I wasn't going to mention it since the nurse didn't, and my OB didn't see it in my chart (I know, dumb). But Pete did say something to my OB, and, rightly concerned, she retested me a few times. When it was determined that it was indeed high and not a fluke, my urine was tested (no protein) and I was sent to convenient care to have blood drawn. Those tests came back negative for preeclampsia, so I was scheduled for a follow up the next week, just to be safe.

At the follow up exam, I again had high blood pressure (which shocked me, since I felt fine) and was immediately told to report to the hospital for further testing. I was told it would probably last a day or two, and that I might have to go on bed rest for the rest of my pregnancy. The worst-case scenario at that time was that I'd be in the hospital on bed rest, so Pete and I were hoping I'd be sent home on bed rest. I packed my bags at home, tearfully said goodbye to my pets (thinking I'd be gone a few days and somewhat scared of what was happening), and headed over to the hospital.

Of course, I got to L & D and my blood pressure was fine. They also hooked up Jack to a fetal monitor (on my belly) just to see how he was doing. It was only supposed to be on for an hour or so, but it was left on a little bit longer, and just happened to pick up several heart rate dips. Concerned, the staff decided to keep me overnight for further monitoring. They said I'd probably go home in the morning, and that the heart rate dips were probably from Jack moving around or getting wrapped up in his cord. An ultrasound performed by an OB at the hospital looked okay. I was relieved and tried to get some sleep.

The next morning I woke up to a swarm of concerned doctors and nurses around my bed. They said Jack's heart rate dips had increased overnight, and that he was in distress in utero. A more detailed ultrasound was performed during which it was discovered that not only was he in distress, but that my amniotic fluid was low, Jack was not growing properly (measuring 22-23 weeks), and the placenta's reduced blood flow was failing to support Jack. If he was not delivered soon, we would be having a stillborn baby in a week or two.

Suddenly I was looking at having my baby any day, and I was terrified. I didn't even know whether babies could survive so young. Steroid shots and a magnesium drip were administered, and after a few days it was decided that Jack had to come out. Jack was born on Halloween at 12:54 p.m., after an emergency c-section, and he came out crying quite loudly for such a little guy, which was encouraging. He was promptly sent to the NICU, where he remains to this day, three months later.

I'm still not sure what happened. I tested negative for preeclampsia, and although I was found to have the MTHFR gene mutation, it wasn't a factor (I was tested for this). So, although we are going through this nightmare with Jack, Pete and I still talk about having another baby in the future (I am 36 and time's ticking). We are obviously terrified, and will have to have high risk counseling to figure out what happened with Jack and what to do with any subsequent pregnancies. We absolutely don't want to put another baby through this (or ourselves for that matter). Although that's not a concern at the moment, it's always in the back of my mind, and I do want answers to what happened with Jack.

Fast-forward to today...Jack is doing fairly well after having endured the usual onslaught of micropreemie issues—PDA, CLD, NEC, ROP, etc. There were times I didn't think he would make it (many times, in fact) and lived in dread for that sudden call from the NICU at any given moment (I still do, to be honest). I only recently started buying him clothes and such, since I was terrified I’d somehow jinx the outcome if I did/did not buy him things. Jack was on a ventilator/oscillator for the first month and a half of his life, then bubble CPAP, then a nasal cannula. Jack was off of oxygen for five days, but sadly has had to go back on it, although it's only room air that he's getting at a low flow. I'd been concerned about his blood oxygen levels slowing going down during the last several days since he's been off his cannula (from the high 90s as recently as Wednesday, to the low-mid 80s today), and they originally told me this is not unexpected and that he is still doing well in their eyes. But that did not stop me from worrying, however, as everything makes me worry these days. And sure enough, he's back on oxygen again.

Jack is still being fed by an NG tube (feeding tube in his nose), although he is learning to bottle and breast feed right now and is doing quite well at both. Jack is in stage 2, zone 3 of ROP (with Plus disease), but his eye doctor said that Jack's had no change for a few weeks now, which is encouraging, since he is leaving that "danger zone" gestationally for ROP complications. Hopefully this means his ROP will reverse itself and he won't need laser surgery, but I am still obviously very concerned and sick to my stomach every time his Friday eye exam rolls around.

What else? Besides having Chronic Lung Disease and suffering from a recent head cold (for three weeks now), Jack has issues with reflux. He is on Reglan to control the reflux, although it's only been a little more than a week since he's been on it. He desats and has bradys every time he spits up (low blood oxygen levels and heart rate dips), sometimes repeatedly, which is scary and frustrating. We have to keep him upright during bottle feeds, and reclined after each feeding of any kind.

Other recent developments are that his caffeine was just stopped yesterday, he's off Pulmicort as of last week, his diuretic is being phased out, he's on a formula fortifier to get him to gain weight (which he's been doing fantastically with for the last few weeks), he just moved to a crib on Wednesday (yay!), and he's receiving ongoing speech, physical, and occupational therapy. He has a strong right side preference, and is a little stinker about fighting the PTs' and nurses' efforts to turn him to the left. Pete and I have been doing exercises with him to work on his tone and flexibility, and although he has some tremors, they are typical for his age right now (so they are telling us) and are not of immediate concern.

Jack never had a brain bleed, but did have some fluid on his brain that was "at the far end of normal," according to one of his doctors. A recent ultrasound suggests this is no longer an issue, and an echocardiogram a few days ago has cleared Jack of any cardiac issues. His PDA closed with medication early on (thank God) and he hasn't really had any other heart issues since then.

I'm currently working to get Jack some SSI benefits, and I am always weeding through the usual red tape and paperwork of medical bills and insurance. So far, so good, although the mounting bills certainly don't help me rest well at night.

As of today, Jack's doctors are telling me he'll be home (most likely) in 2-3 weeks. We're discussing whether we'll be sent home with oxygen and feeding tubes, which is a scary prospect. I'm hoping he is able to wean himself off the oxygen and fully master the art of bottle and breast feeding before then. He's doing really well, and I certainly believe he can do both. But if he needs help, I'm here for him, and I'll do my best to take care of him.

I can't wait to have Jack home....


avant garde said...

chris, these updates are great! and with all you are going through, and jack is going through, from what you say the other outcome was if they didn't take was best they did. i know nothing about medical things but sounded like they acted in the best way possible for the both of you. he certainly is gorgeous i will say! thanks for telling your story and looking forward to more beautiful pictures! he'll be home in no time and at least some sense of normality will begin :)

kat said...

Wow Chris, what a time you have been through. It seems like your Jack is getting really good care through it all - and you are so well informed. Here's wishing you only good days ahead.