Sweet Zoë

Ok, so yesterday was a less than stellar day. It took some adjusting to get Zoë’s setting right, then we were a little later than normal getting to see her last night. When we arrived, her room was closed to visitors for a bit. They do this for a few different situations; admitting a new infant, preparing an infant to go to surgery, and, the saddest reason, the death of an infant. The night Lennox died, they closed the room to visitors and, since it was shift change, essentially held up switching shifts for us. I’m very grateful for that and will never complain about being delayed in seeing Zoë because the room is closed for any reason. However, after worrying about her all day, then sitting in the waiting room for an hour trying not to yell at the young father who gave his four year old son Pop Tarts and cherry cola at 9:30 at night AND didn’t bring any toys for the child and can’t seem to understand why his son can’t sit quietly on the couch, and then finally getting back to see Zoë only to still have the room in a bit of chaos while they settled in a new patient, which makes Zoë cranky, the experience just broke me. We visited, we fretted over the nurse turning up Zoë’s oxygen up into the 50’s “to calm her while we’re there” (Yeah, no thanks…higher oxygen is what we’re trying to avoid. I can handle the alarms beeping and I’ll talk to my daughter to calm her down. Don’t give her more drugs just because you think it makes my visit more pleasant), then I sobbed the entire way home. I know this is a fairly normal phase and I know the jet is best for her, but the feeling of helplessness is sometimes crushing. OH, and we forgot to bring the six bottles of milk. The one big thing I can do to take care of her…pump milk…and we forgot it.

Needless to say, we were both anxious to get there this morning (and we definitely remembered the milk!). Her oxygen level was down to 30%. Her color was perfect. She would de-sat when she wiggled, then come right back up. We have imperical evidence now that that particular wiggle is her poop wiggle. One of our favorite nurses, Nurse T, had opened up her incubator to suction her and Daddy took the opportunity to take some photos (we haven’t taken any in about three days. Can you say withdrawal?) and Nurse T offered to undo her diaper for a naked butt shot. Who can resist that?! But, Miss Zoë had other ideas and that’s how we learned that the full-torso wiggle means poop. Guess who got to change her diaper? ME! I’ve never had that much fun changing a dirty diaper before. Zoë doesn’t care for the experience much, but she’s definitely fond of clean pants. She’s doing well maintaining her body temperature, so Nurse T left the lid up for a nice long visit and Zoë opened her eyes and waved and was generally happy and charming. We needed that. It made hearing that this morning’s xrays didn’t show any improvement a little easier. We can wait calmly for tomorrow’s. As long as we have one really good visit, I think I can make it through a few not as good visits.

Update: We just got in a quick visit tonight. Once again, we arrived just as they were about to admit a newborn and had closed Zoë’s room. We were going to try to wait it out, a race against how long it would take them to get the new arrival settled and how long I could go without pumping. But after we’d waited just a couple of minutes, we got waved back to the scrub room. I figured we would just get a quick update on Zoë, but instead we were given a quick “wash” with hand gel and a short visit. Since we’d had to wait last night for so long, the nurse felt bad for us and let us slip in for the few minutes before the new baby made it down from L&D. After our lovely long visit this morning, it was enough to just take a peek at her sleeping face, read over her chart, whisper that we loved her and then come home. However, I keep coming back to one thing. Twice while I was in the hospital, doctors commented on the excellent reports the nurses gave me…not about my health, but about what an easy patient I was and how much they liked taking care of me. I have one major rule in life. Always be nice to the IT people who keep my computer going, to anyone who handles my food, and to anyone with the ability to stick needles in my butt. Obviously, that’s a generalization, but you get the idea. I’m stuck in a bed, totally dependent on the nurses and the techs for everything, from the water I drink to a shower to my pain medications. Say Please and Thank you. Ask, don’t demand. Remember you aren’t the only one, and that while that five minute shower may be the highlight of your day, you CAN wait until the tech is caught up on all of her other patients and has five minutes to spare. Ask how the NICU nurse’s day is going. Make sure to ask her permission before raising or lowering the incubator. Ask questions and really listen to her answers. Say Please and Thank you. Learn names. Get out of the way when things beep. Remember those things, and when you absolutely hate the lunch you’ve been brought, they’ll find you a turkey sandwich. Remember those things and they’ll bend the rules to make sure you get a quick five minutes with your baby, rather than a 90 minute wait on a Friday night. I’ve never understood those who think pitching a fit accomplishes anything.

Stepping off my soap box now. We had a good day and that feels wonderful. Sleep tight, sweet Zoë.

We had another one of those steps backwards during the night, so Zoë is being switched from the vent that she’s on to the jet respirator.  It increases the number of breaths per minute while lowering the pressure.  Daddy and I are hoping that since she has been panting over and above the vent that the higher breath rate will be more comfortable for her and maybe she’ll take a break and just relax.

There’s also some concern that she might have an infection of some sort.  Her blood sugars were a bit elevated and apparently that, combined with a less than ideal white blood cell count can be an indicator. So, it’s a good thing that the PICC line is still in. Looks like that potential need became a reality. She’ll have blood drawn for testing and they are going to go ahead and start her on (hopefully) prophylactic antibiotics since it can take two days to really confirm an infection. Better to have the drugs in her system now, then wait and see.

Her doctor is concerned, but not overly worried. He told us that this stretch from two weeks to about five weeks is usually when you see things like this. She’ll slide back some, plateau, we’ll treat it, she’ll grow and eventually start to improve. There is some small reassurance in knowing that she is fitting the expected pattern. It’s when she goes bushwacking off the known trail that things get truly frightening. Doctor N still puts her in that medium level of concern, just slightly closer to the large level than she was two days ago.

Her room at the NICU was empty enough that she got moved further away from the wall where the construction is. It’s quieter at that end, so the earmuffs came off. Today, she was hatless as well and we got a good peek at her full head of dark hair! Zoë definitely does not like noise. While we were there, a large group of people involved in the renovations came through talking in outside voices and clumping around in either high heels or heavy work boots. Zoë’s stats kept going up and down the entire time they were there. Parents visiting the NICU are instinctively quiet. No one told us to use soft voices, it’s just what feels right when you are in there. I guess that instinct doesn’t carry over to people who don’t have babies in there. Even the nurses were agitated by the amount of noise this group was making. I know they were just doing their job and I realize they weren’t being abnormally loud, just louder than we’re used to in there, but it took all of my control not to snap at them every time Zoë’s pulse ox alarm went off.

We’ll be calling to see how her transfer to the jet went in a couple of hours. I’ll update you all then.

UPDATE
Zoë’s transfer to the jet went very well. Her first blood gas came back great and they tweaked her settings. The adjustment sort of overshot where they wanted to be and her second blood gas came back “ok” so there’s a bit more adjusting to be done. Her oxygen percentage* has been lowered, which is good and she has a third blood gas that should be done in about 20 minutes.

*This gets confusing because we look at a couple different stats regarding oxygen. The percentage of oxygen has to do with how much pure oxygen Zoë is being given. Room air is about 21% oxygen. Too much oxygen can cause damage to her just like too little oxygen can. If she’s having a rough time, they increase her percentage, but we like to see her in the 40% or lower. Her oxygen level is the amount of oxygen in her blood. This number changes with each breath. If she pants or has a bit of apnea, this level drops and sets of her alarms. The goal is for her pulseOx to be between 82% and 93%, I believe. Too high and too low both have risks that could effect her vision, her brain, etc.

Two Weeks today!  I feel like I should take a cake to the NICU to celebrate.  Instead, I suppose we’ll make do with a lunchbox full of bottles of milk and maybe I’ll sneak in a quick kiss on your forehead.  It’s probably too early to get that pony, as well, isn’t it?

Miss Zoë is sleeping on her back tonight, swaddled in a blanket.  The only news to report is that the pressure on her respirator got dropped down and her xrays are improved today over yesterday, so her lungs are opening up.

Several people have asked how big she is and I know hearing the measurements doesn’t really convey how tiny she is. I was hoping to get a photo tonight of her whole body compared to my hands…I can cover her entire torso with one hand…but all swaddled and with her face shaded from the light so she’d relax that just wasn’t possible. Instead, here is her tiny little foot against my hand.

This one is really grainy.  We don’t use the flash and she was so relaxed, we didn’t want to uncover her incubator too much.

And, because her tiny feet are just so damn cute…

The chicken is a rattle and is as big as she is.  The Blue Jay is a Beanie Baby that the NICU uses to prop various things up, from tubes to her little legs.  The bean filling lets it conform to whatever shape they need and she seems to like to cuddle with it.  So, how big is she?  Itty Bitty.

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.