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Thursday, March 24, 2011

The Littlest Lion Arrives

Here's my HemAware post for 3/23. (I've been on a blog hiatus with them too.) I'm slowly readjusting to our new lifestyle so "follow" or keep checking back. More posts to come! In my next post, I'll dish all the dirty details about Noie's birth day. It goes beyond golf, ya'll. ;)

The Teaser Tweet.

In case you missed it, I was miserable during the final weeks of my pregnancy. So, imagine my relief (and pain!) when I realized my baby girl was finally on her way. I wasn’t 100% sure I was in labor at first. My contractions were painful, but inconsistent. This should explain why I let John drive 45 minutes away so he could play a round of golf with his buddy. He was hesitant to go at first, but I was confident that I was just having Braxton Hicks contractions as usual.

I’ll spare you the gory details, but wouldn’t you know it—it became evident my contractions were the real thing just as John started to play his third hole of golf. I’m a pro at this birthing thing, but I was less than enthused when John implied he might as well finish all 18 holes. (Yes, really.)

Before I could react, John quickly retracted his suggestion and sped back home. I’ve given him the benefit of the doubt, and I’d like to think he was just pulling my leg. Sure, we still had a few hours before the baby would arrive, but there was no way I was going to experience early labor by myself. I had all three kids home with me, and I cry like a big old baby when I’m in a lot of pain. Besides, we had lots of preparing to do before we left for the hospital.

My Birth Plan

When we discovered Noie was a carrier of factor VII deficiency, I wasn’t entirely clear what our birth plan would be. Noie had my copy of the mutation, so we assumed she wouldn’t be a symptomatic carrier, because I wasn’t one. Call me paranoid, but I was a little uneasy with the idea of not following the hemophilia protocol for labor and delivery. What if some freak error caused my amniocentesis results to be inaccurate? So, after speaking with my obstetrician and Niki’s hematologist, we agreed it would be best to follow the protocol anyway—just in case.

I don’t care how many times I’ve done it—five times, to be exact—but giving birth hurts! I unintentionally gave birth to Niki without any drugs, and there was no way I planned on doing that again. My hat’s off to women who can give birth au naturel, but I’m not one of them. After 13 hours of labor and lots of pain relief, Noie was out in three pushes: seven pounds, three ounces of pure joy! Our youngest daughter, Anjali Noelle (Noie), was born on January 24.

There was a bit of debate on whether Noie needed to have her coagulation labs and factor VII level drawn immediately after she was born. John and I assured the attending pediatrician that our hematologist wanted these tests to be done, but no one seemed to understand why, since she was only a carrier.Niki had a cord blood study done immediately after birth (to prevent being poked) but despite our insistence, they skipped the opportunity with Noie. Later that morning, the pediatrician got in touch with hematology, and of course they wanted the labs to be drawn just as we insisted. (Drawing labs was listed as part of the protocol.) It was too late to test her cord blood, so Noie was sent to the NICU twice to get poked: once to check her factor VII level, and another time to draw her coagulation labs.

Results of the Lab Tests

Everyone assumed Noie would have normal lab results, but to our surprise, her factor level was slightly low at 33%, and her coagulation baseline was ever-so-slightly abnormal. I don’t think anyone was expecting that. John and I were glad we persisted. Had we dismissed the need for labs, we would have never known. Noie had a joint follow-up visit with Niki’s hematologist, and the plan is to check her labs again when she turns 6 months old. We’re hoping her factor VII level will normalize by then.

I know my birth story sounds like a total nightmare, but I was very happy with the doctor and nurse that helped my deliver my baby. They followed the delivery protocol perfectly and were totally supportive and encouraging during my birthing process. And even though there was some confusion on the need for lab tests, I don’t blame the pediatrician, either. We’re dealing with a rare disorder that doesn’t have much clinical data documented, so there’s always room for debate. All in all, John and I were very pleased with the outcome of Noie’s birth day. We were discharged to go home the following day.

Noie is almost 2 months old now, and I honestly forgot how tiring—and expensive—it is to have two little ones in diapers. Kevin just barely turned 2 when Anthony was born. And even though Ethan was only home for three days, Boo was still in diapers when he was born, too!

Nevertheless, John and I are enjoying our newborn daughter and all the pandemonium that comes with having four kids in the house. I’m absolutely in love with my newborn daughter and that “new baby” smell.

Sunday, March 20, 2011

Holidays in the Hospital

Annnnd here's another HemAware post for your viewing pleasure. This one was published on 2/2/11. ;)

Update: Our HemoMom blogger gave birth to a girl on January 24 at 3:44 am. Mom and baby are doing well. Anjali Noelle or "Noie" was 7 lbs, 8 oz, and 20.5 inches long at birth.

Keeping up with the demands of the holiday season was a tad more arduous than usual this year, since I was due to give birth very, very soon. Not only did my computer crash, but I was left with very little time to write in between juggling holiday engagements, demands at work (yes, I was still working full-time pre-baby), and, of course, tending to the kids.

For almost the entire month of December, all three kids took turns being sick. In addition to a minor inhibitor scare just before Christmas, Niki also ended 2010 with a bang. She developed a high fever—104 degrees, to be exact—and we had to rush her to the emergency room to make sure her port wasn’t infected.

Come to think of it, the past two holiday seasons have been plagued by trips to the emergency room to rule out an infection in her central venous access device (CVAD). A CVAD is a tube that is inserted into a central vein with an external access device that we inject her factor into. Niki had a Broviac® catheter installed when she was 5 days old so we could perform her infusions and lab draws at home. If the CVAD isn’t kept completely sterile, bacteria from the device can get into the bloodstream, causing a central line infection, but the benefits of prophylaxis outweighed the risks of having a CVAD.

Central Line Infections

In case you didn’t know, central line infections are no good. They can be life-threatening if they aren’t caught in time. A fever could be the first sign that something is amiss for patients with CVADs. This means patients with CVADs, such as ports or catheters, can’t take fever reducers for typical cold or flu symptoms. It could dangerously mask a high fever. For Niki, a temperature of 101.5 degrees or above warrants a trip to the emergency room to rule out a line infection.

All was fine and dandy with Niki’s Broviac catheter until she was 8 months old in October 2009. It seemed she caught every cold and flu bug imaginable because she developed a fever all the time. There was a time that John and I would rush Niki to the emergency room at least once a month! We would take her in for blood cultures, and then she would receive a two-day course of intravenous antibiotics.

At first, I was terrified that Niki would have a central line infection with each and every trip to the emergency room. As time progressed and the frequency of our visits increased, the emergency room became part of our monthly “thing.” Order infusion supplies? Check. Call the pharmacy for more factor? Check. Go to the emergency room because Niki has a fever again? Check. John and I often had Niki’s baby bag packed and ready to go with clothing, diapers, her protocol card and our “mobile hemophilia treatment center.”

I got used to Niki’s high fevers being a false alarm, but John and I had a serious reality check this past June when Niki’s Broviac catheter actually did become infected. She was hospitalized for a week, and her hematologist decided to switch to a port immediately thereafter. Ports provide the same direct access to the vein, but the device is housed completely under the skin. Niki had port surgery in July 2010.

In Love With the Port

The idea of poking Niki took some getting used to, but we eventually fell in love with the port. Despite still being prone to catching common colds, Niki was miraculously able to get sick without crossing her fever threshold. I don’t know if there is any real data to support this, but it seemed she was less prone to getting full-blown sick with her port. Suddenly, we went from monthly emergency room trips to no emergency room visits for six months. Life seemed somewhat normal again.

Thankfully, this last emergency room visit was not a central line infection. She was discharged the afternoon of New Year’s Eve, and we got to ring in the new year at home. Even though she was hospitalized for the last two days of 2010, I’m looking forward to another year of less-frequent emergency room visits in 2011. Switching to a port was the best decision we ever made.

Bring on the Baby!

Here's a link to my HemAware blog entry. This was originally posted on 1/26/11. I know I'm looooong overdue for posting an entry on this blog. I'm working on it guys. Just bare with me. I've got a LOT of projects going on. Anyway, enjoy!

Update: Our HemoMom blogger gave birth to a girl on January 24 at 3:44 am. Mom and baby are doing well. Anjali Noelle or "Noie" was 7 lbs, 8 oz, and 20.5 inches long at birth.

Believe it or not, I had two jobs—worked 60 hours, seven days a week, to be exact—and attended school two or three nights a week during my pregnancies with Ethan and Niki. I didn’t have to be conscious of Family Medical and Leave Act (FMLA) hours back then, but both times I worked up until the day I gave birth. As a matter of fact, I started having my contractions at work, finished my shift and gave birth to Ethan early the next morning. (Yes, really!)

I remember being tired when I was pregnant with my precious little bleeders, but I don’t recall being as exhausted as I’ve been with this pregnancy. I’m no longer working seven days a week, and my education is on hiatus, but nevertheless my body feels like it’s working the crazy schedule I used to have. I’m still working full time, but now it’s because I have to be ever-conscious of the FMLA hours I use. (Niki and I have to share FMLA hours that I have accrued in a rolling 12-month period.)

So, I roll myself out of bed every morning and go straight to work. And lately, each morning, I’ve felt a twinge of disappointment that I haven’t given birth yet. I’m absolutely sick of working, but I’ve got to do what I’ve got to do to protect my job and my benefits.

An Exhausted Pregnant HemoMommy

Please forgive my pregnancy-induced whining, but quite frankly I hope I’ve already given birth by the time this blog entry is posted. If not, well, I’ll probably be seriously considering using a plunger to get this kid out by then. I’m grouchier, sleepier, weepier, hungrier and more worn-out than I’ve been with any other pregnancy. John has noticed it, too.

I’m a petite person—all skin and bones—so carrying around an entire human being always wreaks havoc on my tiny frame. But, there is also something drastically different about how I’m coping with this pregnancy, too. I’m a HemoMommy now, and although the physical demands of HemoParenting are no different than those of “normal parents,” the mental demands are.

I never got any responses to my blog post looking for other pregnant HemoMommies, so I don’t know if I’m alone in feeling this way. However, it seems my stress level is a bit higher with this pregnancy, and I theorize that it’s because I’m a different kind of parent now.

The fact of the matter is—like most HemoMoms—I’m the primary caregiver when it comes to managing Niki’s bleeding disorder. My medical background has been helpful in my successful management of Niki’s care at home, but these days it feels like I’ve got to command my “pregnancy brain” to remember to order factor and infusion supplies, log infusions and, of course, wake up early enough to adhere to Niki’s prophy schedule. Aside from having the kids to tend to, each passing trimester has made me feel like my HemoMom duties aren’t as second-nature as they once were.

Work vs. HemoDad Dilemmas

John is here to help—if I were to die tomorrow, he would be perfectly capable of doing everything I do—but he also has a very demanding job. A job he has to be diligent about sustaining, not because it’s more important to him than his family or because he’s the “good” insurance provider, but because it supports the financial demands of rearing three, soon to be four, children.

Most of the time I try to be understanding about it, but lately I’ve been a nasty, pregnant ogre when John is faced with “work vs. HemoDad” dilemmas. Do I resent it sometimes? Absolutely. But he has his role, and I have mine. My “parenting specialties” aren’t the same as his.

John has had to report to work during Niki’s hospital stays these past two years of her life. In fact, he went back to work when she was still in the NICU, and I totally understood and supported his decision back then. But during her recent hospital stay before the New Year, was I more annoyed now that it was my nine-months-pregnant self tending to Niki? Definitely. It wasn’t fun tending to a cranky, clingy toddler while lugging a soon-to-be newborn in my belly.

Frankly, as much as I love the excitement of awaiting this baby’s arrival and the feeling of my second daughter squirming around in my tummy, “labor day” can’t come soon enough. I can’t wait for the blood flow to my uterus to be redirected back to my brain. Raising four kids is going to be tough, but I say it’s totally worth it. Big families rock!