Sweet Zoë

If this were a normal situation, today would be my 26th week of pregnancy.  I still tend to think of Zoë’s age in terms of gestational weeks.  Tomorrow she’ll be two weeks old, though!

There isn’t a whole lot to report, which is good.  We met her doctor face-to-face last night (we’ve had a lot of phone conferences up to now) and he’s very pleased with her progress to date. I like her doctor quite a bit. He’s got a positive outlook and, like us, tends to focus on one day at a time. He’s promised to always call us if he’s ever concerned about anything.

For now, it looks like she’ll stay on the respirator she’s on, rather than having to switch to the jet. The jet, which Lennox was on, is an oscillating respirator that increases the breathing rate to 100 breaths per minute. It has it’s pros and cons, but she’s doing really well on the vent she’s on and if it ain’t broke…

She’s at 5mL breastmilk per hour now, with calories added. Her weight was down a few ounces this morning, but that could have been due to pooping. She’s very good at those now! She also is a real wiggler and that burns the calories.

She has a PICC line in her leg that they just placed five days ago to replace the umbilical line. The doctor wants to go ahead and remove the PICC line since it represents a potential infection site. I’m on the fence over that. On the one hand…infection very very bad. But, it took two tries to get that line in and it isn’t as easy as just placing an IV in your hand. What if they remove it and then they need it? sigh. Yes, I know…obvious risk vs potential need. Take it out.

No new pictures right now. She was being incredibly cute last night, waving her hand around, but the camera batteries were dead. This morning, she was on her tummy facing away from us and we’ve already taken photos of her back. We should have more after tonight.

What a difference 12 hours on your tummy makes!  Zoë’s x-ray this morning showed much improvement.  Her lungs still look opaque, but not as opaque as yesterday.  They have also reduced the number of breaths per minute.
Feeds have been increased to 4mL of breastmilk per hour and will most likely go up to 5 today or tomorrow.  YIKES!  That’s going to be hard for me to keep up with.  She’s getting all of her nutrition from breastmilk now.  They add some calories to it, but she isn’t getting the bag of nutrients and the bag of fat (I kid you not, it looked like a bag of Crisco hanging on the IV pole) in addition to the milk.   Since we saw her last night, she’s put on an ounce.  I believe the goal is around an ounce a day, so we are right on track.

Her nurse thinks she might have a little bit of reflux.  Being on her tummy puts her butt higher than her head, so they’ve tilted her bed to correct for that and the nurse is going to talk to the doctor about it this morning to see if it warrants some medicine.  Poor baby, I know exactly how you feel.  After all, you gave me heartburn for almost 6 months!

That’s all I have right now and it’s time to pump….again.  More photos posted.  You’d think you couldn’t take that many photos of someone who can’t move that much.  You’d be wrong!

We visit Zoë twice a day – early in the morning and around 8pm at night.  That way, we get to hear about the previous shift and, ideally, we catch the NICU when it’s relatively quiet.  Plus, what a great way to start and end the day!  My favorite part of the day is our night time visit.  The lights are dimmed in the NICU, Zoë is snuggled in, we’ve had dinner and I can sit by her isolette and just watch her.

Tonight, we walked into the room and I immediately noticed the difference.  For 11 days, there’s been a big pole with the machine that prints out Zoë’s blood gas results right by the head of her bed.  It’s where Shannon stops first to read the latest test results and I have to carefully manuever a chair past it.  That was gone.  The space around her bed seemed so open without it.  Then, I peaked under the blanket that covers her isolette.  Instead of her sweet face and her round little belly, I saw her back and her tiny diapered butt!  She’d been placed on her tummy!  This is a big deal.  First of all, it means she no longer has any IVs in her umbilicus.  Secondly, preemies can breathe easier on their tummies.  It is less work to move the ribs in the back than the ribs in the front.  She relaxes more, her stats stay up, and hopefully, she can be on lower oxygen levels.  She’s always shown a preference for being on her side rather than her back.  I have a feeling that her tummy will be her all-time favorite.  Now, don’t panic…sleeping on her stomach is perfectly safe.  She’s hooked up to machines that monitor how deeply she breathes, how often she breathes and how her blood pressure is.  She has her very own nurse who monitors her constantly.

She was all tucked up.  Feet curled under her bottom, arms tucked under her chest, purple bobble hat covering her yellow earmuffs and tiny head. We sat and watched her breath and wriggle and sleep. Even just looking at her back, it was clear how deeply asleep and relaxed she was. I hope this does the trick and gets her down closer to 21% oxygen. The less oxygen she needs, the closer we get to being able to do kangaroo care (skin-to-skin contact. I’ll get to hold her against my chest, letting my body heat keep her warm.)

Have a good night, Sweet Zoë! Enjoy sleeping on your tummy! We’ll see you in the morning.

Oh! She’s grown an inch and weighs 1lb 12 oz tonight! Go baby girl!

Zoë is back to her birth weight today.  She’s doing really well on the breastmilk, getting 3ml per hour now (that’s about a teaspoon and a half) along with her iv diet of fat, vitamins, and minerals. They add some extra calories to the breastmilk as well.  Every time we see her, she looks fuller, more fleshed out.

There is construction to expand the NICU taking place right on the other side of the wall by Zoë’s bed. It shouldn’t come as any surprise that she really doesn’t like the screeching noise of screws being driven into wooden studs.  So, her nurse put a spiffy pair of yellow earmuffs on her this morning (yes, we took a picture. It will be up later).  Zoë isn’t too crazy about having things on her ears either and keeps fussing at them with her hands, but it’s a good trade-off.  Daddy just likes seeing how she continues to react to new stimuli.  She has absolutely no problems letting us know when something bugs her and we much prefer the drama-queen hands to the not breathing thing she chooses from time to time.

No word yet on switching her to the different respirator (it’s called a Jet). We’re hoping it will be soon. She really fights the one she’s on, breathing over it, against it, and often times panting, which sets of her various beeping alarms. But, as of this morning’s visit, they’d been able to drop her O2 percentage down some, which is good. The ideal is a 21% oxygen, which is room air concentration. She was in the forties this morning. Mostly, she just needs time and to grow so her lungs can open up and make better use of the oxygen. Right now, the majority of her breathing is taking place in the bronchial tubes, rather than the alveoli (air sacs) because her lungs are too immature to inflate properly. There isn’t much we can do for that except wait. Grow, baby, grow!

And, yes, we’ve had poop. Two last night and one this morning if I remember correctly (sorry, the waking up every two hours at night to pump is wreaking havoc on my memory). The nurse weighed her at 1lb 12oz, then Zoë pooped, so we’re rounding today’s weigh in down to 1lb 10oz just to be safe! : )

For those who have been asking… Mom is doing fine. Home is definitely a better place to get well than the hospital. The staples came out last Thursday and aside from some heavy drainage and what we thought might have been a mild infection, the incision is healing really well. Still napping lots, but Mom has always preferred a good nap to most other things. Dad is doing well too, although taking care of both of his girls is a big job. He’s up to the challenge though.

As promised, here’s the place to see photos (see the link in the upper right corner) and get the most recent information on Miss Zoë. We’ll do our best to update daily, although between two visits each day to the NICU, working from home full time, pumping milk every two hours, and, well, just trying to have a bit of a life in between, we might slip a bit on the updates. Just keep this rule in mind…no news is usually good news.

The basics:

Zoë Harper and her fraternal twin brother, Lennox Maximilian were born at 2:35am on January 3, 2008 by emergency C-section at the gestational age of 24 weeks. Lennox’s membranes had ruptured two weeks earlier and we’d been on hospital bedrest since. Unfortunately, the strain was too much on Lennox. He fought for every breath he took for three days, but his system just couldn’t handle the strain. Lennox died the evening of Saturday, January 5, 2008. We truly believe that he fought to stay in utero long enough to give Zoë a better chance to face her own challenges.

Zoë was 12 inches long at birth and weighed one pound, ten ounces.

During her first three days of life, she did breathe on her own, at oxygen levels only slightly higher than room air, with the assistance of a CPAP respirator. However, she simply wasn’t old enough or strong enough to maintain that, and had to be put on a ventilator. In the next few days, she’ll probably be switched to a respirator that vibrates, rather than one that uses pressure, which is easier on her immature lungs.

She opened her left eye on Jan. 8 and her right eye on Jan. 10.

She recognizes our voices and wiggles when she hears us.

At 11 days old, she is receiving 3cc/hour of breastmilk and gaining weight at a nice, steady pace.

She receives regular blood transfusions because her bone marrow does not produce red blood cells yet. Within the next few days we will post information regarding blood donations. The process for donating directly to preemies is involved and costly, so we have been gathering information for donation in Zoë’s name to offset the blood that she uses. We’ve already had one blood drive in her behalf! (A HUGE thank you to all of the employees of JetPay. You’ll never know the depth of our gratitude for your show of kindness.)

She poops regularly! I know that’s not something you typically celebrate, but every dirty diaper means her intestines are working properly. Poop reports are an important part of the information we ask for at each visit.

We can touch her, we cannot hold her. Yet.

Her breathing issues and infection are the top areas of concern for her. Her entire system is immature and at risk for problems, but these are the biggies.

Her daddy has made himself the expert on the detailed medical stuff. Mommy is more tuned into the eating/pooping/color/weight things. We’ll do our best to cover both sides (although Mommy is more likely to do the posting).

Photos will be plentiful! She’s a cutie and we take lots of pictures. You’ve been warned.

In the past week, our little family has been honored to be on the receiving end of so much love and support. Not only did family and friends stand around us, helping to hold us up, but the internet stepped up as well. People we’ve never met, some total strangers, some we know by name or alias, some we know as well as we can in this medium, writers of blogs, readers of blogs, came forward and not only prayed and wished and hoped for us but they bore witness to our son’s brief life and recognized just how special Lennox was. Your comments have had a huge impact on us this week and I cannot express how touched we are. Someday, Zoë will know just how many people cheered her on for every day, every milestone and how many people mourned her brother. We will not forget.