Sweet Zoë

Shannon and I are overwhelmed at the amount of love you have shown us and our sweet Zoë. We have to read your comments in bits and pieces still, but we do read them.

Sometimes when you feel most alone, you find out just how many friends you have, even if you’ve never met them and don’t know their names.

I know many of you have asked if there is something you can do. We are going to be setting up some memorial funds in Zoë and Lennox’s names soon. Our plan is to set up a donation fund with Cook Children’s Hospital to raise some money for neonatal research and to see if we can set up a memorial “fund” with the Red Cross for blood donations. Obviously, we no longer need the donations to offset the blood that gets used, but both Shannon and I rather like the idea of Zoë and Lennox being remembered by getting blood donated to help others. As before, once I have the details all worked out, I will post them here.

I’m not sure what will become of this blog. I’m not taking it down, I’m just not sure how it goes on without my sweet Zoë.

I don’t have any words left.

My Zoë died this afternoon.

We don’t know why yet.

My Zoë is gone and my Lennox is gone and I don’t know if anything will ever fill this hole.

First of all, Miss Zoë is three weeks old, in the world, today and she hit a whopping two pounds! Hooray! She’s also been moved to a new room in the NICU. Now that she’s proven herself stable she moves to room 3 from room 4. It’s away from the construction and they rarely admit babies directly into room 3, so ideally there will be less hullabaloo to upset our delicate flower.

Unless she’s the one CAUSING the hullabaloo.

This morning we got there shortly after her usual “maintenance” which always upsets her and causes her to desat, or drop her blood oxygen levels. Normally, though, she brings them back up within a few minutes and eventually stabilizes. Not this morning. We want her to be no lower than 82% and ideally in the low 90s. She was in the 50% range. The nurse tried repositioning her, suctioning her, giving her a sedative, increasing her oxygen level from the very nice 30% she’d been at all night higher and higher until she hit 100%, but nothing worked. On the plus side, Zoë’s color was good, her heart rate never budged, and she wasn’t fussing. An x-ray ruled out a pneumothorax, showed lungs that had improved since the last x-ray three days ago, and a respirator tube that had gotten shifted around. They repositioned the tube and Zoë’s O2 levels went back up. As we left the NICU, they were weaning her back down off the oxygen so hopefully she’ll be back at 30% before too much longer.

Mama needs a sedative of her own now. Mechanical issues are preferable to health issues, but until you can figure out the cause, they’re pretty damn scary.

Another gestational week under our belts. One more milestone reached.

Way to go, little monkey!

Zoë is back under the biliruben light for a few days. Yesterday, her levels jumped from 4 to 8. Today, they are back at 4, but they want to get them lower. That’s all fine, except I can’t hold her while they are using the bili light. And, she hates it. It’s bright and they take the cover off of her incubator, which increases the noise. She wiggles and squirms and pushes herself up off the bed and lunges forward. And she cries. Last night while I tried to read to her and reassure her with my hand on her bottom, she scrunched up her face and opened her mouth and tensed her entire body. She can’t make any noise and there aren’t any tears, but you don’t have to have seen many newborns crying to know that’s what she was doing. It broke my heart and made me wonder. I know when she does that, she sets off her alarms, but most of the time when her alarms go off she’s given time to bring things back under control herself so no one comes to her bed immediately. How many times has she cried and no one has noticed and tried to comfort her? Last night was not a good Mama night. I’ll be glad when she’s done with the light and I can hold her again. I know she’s doing well and things are progressing the way they should, I just wish there were something I could do to make her tiny world a bit more comfortable and soothing for her.

She weighed 1lb 15oz yesterday morning, but then she pooped 9 times yesterday and put way too much energy into wiggling so this morning she was 1lb 13oz and change. Such a tease! They are adding a calorie-rich oil to the 6mL of milk she gets each hour to plump her up.

We’re suffering from extreme photo withdrawal around here. The bili lights make it hard to take photos. They screw with all the colors and make her skin an awful shade of blackish purple. Hopefully, by this weekend we can make up for it with a lot of new pics.

Short post today. We got a late start this morning, so our visit with Zoë was short and sweet. She’d had a good night and kept opening her eyes to peek at us. We rubbed her back and talked to her for a few minutes before we had to head home to get to work. Tonight we got there as she was having her heel pricked for her blood gas test. A bath earlier in the day, a heel stick, and a nearby baby crying (Zoë doesn’t like the other babies to cry, it upsets her) had her a bit agitated. However, her O2 level was lower than it had been, and her blood gases came back so good that the respiratory tech turned her pressure down a notch. We read her a bedtime story and rubbed her back to try to calm her down, but she was just wound a bit to tight and kept squirming. She not only managed to pull herself forward a few centimeters, she picked her head up and pushed up on her arms! This burns waaaay too many calories, sends her heart rate sky high, and compromises her ability to use oxygen well. I have the feeling that she may have gotten some sedative after we left. We didn’t do kangaroo care tonight. It probably would have calmed her down, but I was afraid that getting her settled both on me then back in her bed afterwards might have undone the good of the cuddle. Hopefully tomorrow will be a calmer day and we can have a nice snuggle.

Zoë does seem to like when her Daddy wraps his hand around her torso and arms and talks to her. I think it keeps her nice and warm and his deeper voice is soothing to her.

Another good day. Zoë’s doctor called us with some concern over a murmur they’d heard in her heart. He thought that a vein in her heart that typically closes shortly after birth might still have been open, causing the murmur. There had been some discussion about this in those first few days as well, and at the time a sonogram had shown that it was closing up. So did today’s sonogram, so it appears that the murmur is something fairly benign. They’ll keep an eye on it. The lab cultures came back and there are no infections so she can stop the antibiotics. Yay! Oh, and we’re up to 5.5mL of breastmilk an hour. That went up yesterday. The little turkey gains a few ounces, then loses them again. It’s all that wiggling, I’m sure.

Our night time visit with Miss Zoë was lots of fun. Dad changed his first diaper and practiced the temperature taking skills he learned this morning (under her arm, in case you were wondering.) Then, Mom and Zoë got to snuggle in the rocking chair and read Corduroy together. After that, and a rather long bout of the hiccups, Miss Zoë went back to bed, allowed Mom to change her diaper…she’s averaging a diaper change an hour…got her good night kisses, a “hug” from Dad, and drifted off to sleep. A nice way to end the day.

Today was a great day. That’s all I’m going to say. The photos do a much better job than I could.

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.