Under pressure

Well, I just had a discouraging visit at the doctor's this morning. I was put on blood pressure medicine when I gave birth to Jack, due to hypertension. I was hoping to be weaned off the meds, since I've been slowly losing weight, eating well, and getting lots of sleep. But surprisingly, it's still high. The nurse took my blood pressure and it was fairly low, 122/60. I was pleased, but then startled when the doctor took it again 25 minutes later and it was high, 130/90. And I had just taken my pill a few hours earlier (which makes me lightheaded and nauseous sometimes).

The doctor was also concerned, and ordered a kidney ultrasound, to make sure my kidneys are functioning properly. I have already had an EKG (back during my Hooveritis days 4-5 years ago) and that looked normal. I work out every day, eat right (except for the occasional fast food order), and, like I said, am losing weight (18 pounds since Jack was born on Halloween). The only thing I can think of is that it's genetic, since my mom has had hypertension/high blood pressure for years now, and my dad has it now too. It was very depressing to hear that I haven't progressed in that area. I do a lot to take care of myself, and yet this is one more thing that is out of my control, and that is a stress factor in my life.

I hadn't been to see my doctor in a year and a half, and she was saddened to hear about Jack and everything that has happened since he was born. Then she told me she had lost twins at 21 weeks, almost 20 years ago, and she understood how hard this all was on me. She said she couldn't imagine going through what I'm going through, but I think losing twins would be much, much harder for me. She was also impressed by how I've been handling things, but just as I tell everyone else, I don't really have a choice, and I just deal with it and do what I have to do to get through each day. She was very encouraged to hear that Jack is going home soon though.

My kidney ultrasound is on Saturday, so hopefully that will give me some answers as to what's going on with my body. Funny thing is, now I'm freaking out a bit about the high blood pressure not going away, which is probably making my blood pressure higher. That's stress for ya.

(Image from firstaidwarehouse.co.uk)

Speaking of smiles...

...and a pout.

:)

I'm glad I continue to see these everywhere I go. They remind me that I need to smile. I showed this to Pete the other day, and he said, "Ah, my wife, who sees smiley faces everywhere she goes."

Diaper bag diva

I recently purchased a lovely diaper bag from the Etsy shop Fuchst Bags, and I can't wait to get it in the mail! I was so undecided on what to get to carry around Jack's necessities because I don't really care for the typical diaper bag. So I decided to browse Etsy and see what they offered, and I stumbled upon this shop. I actually said, "Ooooh!" when I saw these gorgeous hobo/diaper bags.



After carefully thinking about it for all of a day, I went ahead and got one. I figured I'm going to be the one schlepping Jack and his stuff around 90% of the time, so I might as well get a bag that I like. And when I'm done with the baby stage of my life (not for some time, I understand), this bag can easily be used as a purse or tote, providing it's still around by then and hasn't disintegrated from use.

It should have been today

...or at least somewhere close to today. Not three and a half months early.



I still have so much guilt, anger, confusion, and shock that Jack was born so early. I don't clearly understand what happened, or why. And yet I have to see him every day, suffering from his extreme prematurity, trying to just get to the point that most babies are already developed before they are born.

Today is a hard day for me. It's a happy day, since we have been blessed with Jack's presence. But it's still very difficult to face that things didn't go as planned. That I never got the chance to carry my baby to term. That I didn't go home with him, didn't get to sleep next to him at night, didn't get to feed him, didn't get to show him off and do normal "mom things." Maybe it'll get easier as time goes on. Maybe not.

I will always be filled with the questions, "What if?" and "Why?"

I will always wonder what could have been.

I will always feel guilty, no matter how irrational it may seem to others. I think many, if not most, preemie moms know how I feel.

I will always live in fear of a sneeze or cough, or the wrong shade of color on his face, or a pause in his breathing, or a tremor in his limbs.

I will always wonder how his life will be different, what he'll miss out on, what he'll have to endure, what he will never know.

It should have been today.

March for Babies

I'm walking in the March for Babies walk to prevent prematurity on Sunday, April 25th, at the Naperville River Walk. I have created a team in honor of my son, Jack, in order to raise money for this cause. If you'd like to walk with me or donate to Jack's team, click on the widget to the right of my blog. Please join me in preventing premature births from happening to other babies and their families. Thanks!

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....

NICU Anxiety

(For some reason, Blogger isn't letting me upload photos today {I get a lot of HTML jibberish}, so this is one of the rare posts of mine without a photo.)

I'm stressing a bit right now, something that seems to hit me randomly as the weeks and months go on and on in the NICU. Today I went to the usual 11:00 feeding for Jack (he's learning to bottle feed), and a new nurse, Dani, was there with one of the regulars, Jane. Both are wonderful nurses and very sweet people, and greeted me with the usual smiles. I walked up to his crib, and Dani was performing a check on his lungs/heart/tummy with the stethoscope. She looked puzzled and asked Jane if she heard a murmur. I was surprised, since Jack's last echocardiogram was clean, and he's considered problem free in the cardiac department. Jane took a listen and confirmed the diagnosis of a murmur. I suddenly found myself crying, and ducked out of the way to get a kleenex. It happened so fast that they didn't even know I was crying, until I stepped back near the crib and they saw my face. Lots of consolation and soothing began, which made me cry even harder. Eventually I settled down, and was chatting and smiling with them, although I was still surprised at the sudden flow of tears, seemingly out of nowhere.

Then the speech therapist, Maha, came in, who works with Jack to teach him to feed. I sat down with Jack and started giving him a bottle. He was slow to start, and was not breathing well as he drank from the bottle. He started destatting quite a bit, and had some bradys (bradycardia, or heartrate dips), and again, the tears started flowing. The speech therapist didn't realize I was crying either, until I had to pass her the bottle so I could blow my nose and wipe my eyes. She was very nice and totally cool about my crying, but I was really embarrassed. The feeding continued, and I eventually got it together, as did Jack. We finished on a good note, with some loud burps from Jack and smiles too. But it was later passed along to one of Jack's doctors in the NICU that I had "showed anxiety" regarding his heart murmur. The doctor later stopped by to review Jack's day and listen to my concerns. I was a bit sheepish when he mentioned my "concern," but he was really nice about it, as everyone has been during the last 3+ months.

I'm not sure why I'm so embarrassed to cry while I'm there. I have no problem doing it in the car, or at home, or in front of Pete (he's really used to it by now). I'm sure I'm not the first person to cry in the NICU, and I'm definitely not the weepiest person ever. But for some reason I just have days where the anxiety is bubbling closer to the surface than it usually is, and I have a harder time controlling the emotions. I realized as I was driving home that I am under 24/7 stress, and have been for months now. That sort of stress and pressure will get to anyone, especially since it concerns my child, my baby, who has suffered since he was born (and even before that). I know he's doing really well right now, and his homecoming is on the horizon. Yet I still can't fully relax. Besides the constant stress of Jack's health on any given day (or even hour), there are the mounting medical bills (even with our good insurance), the reality that I'm still laid off and looking for work, with only occasional freelance jobs, the usual (growing) financial worries, worries about my own health and stamina, such things as staying in contact with friends and family, and of course the stress of daily life on top of all that.

I wish I could relax and let it all out, and feel free to cry at will. I've never been one of those people, and never will be, I think. I can distract myself from my own reality with thoughts about my upcoming baby shower and my registries, our furry children's antics (as annoying as they can be sometimes), my artistic pursuits, which have been put on hold for the last 3 months, and even basic things like going to a movie or playing with my new Wii. Pete is wonderful and supportive as always, but in a way, I'm burdened with the job of worrying for Jack. Pete does worry, don't get me wrong. But he is able to accept what is going on around him, and figures he won't waste time thinking about things until they're a real problem. He's also not involved with the daily care of Jack as much as I am, the medical bills, the social workers, the nurses and doctors (although he does visit Jack with me for several hours a day), and everything else going on behind the scenes. I am also still trying to get over what pregnancy and birth has done to my body, and am physically reminded on a continuous basis how traumatic Jack's birth and life has been for me so far, despite how wonderful and amazing he is.

Right now, my only consolation is to talk to others about it, blog about it, join micropreemie mom support groups, and to read about others' experiences, to know that I'm not alone, and to get questions and concerns answered. In the end, it's something I will continue to endure because I have received such a blessing and a gift in the form of my son.