Sweet Zoë

These are the last pictures we took of Zoë. They were taken on Jan. 19 and 20. I downloaded them from the camera weeks ago, but just hadn’t gotten around to adding them. I’ll move them to the gallery in a few days.

When Shannon started cleaning her mouth with that bit of gauze dampened with sterile water, she tried to suck on it (I went and bought her a NICU pacifier the next day, but it wouldn’t fit between the sides of the logan’s bow holding her breathing tube so she never got to try it). Her O2 stats went up and her heart rate leveled off nicely. She may have fussed when others “messed” with her, but not when her Daddy did. Then, when he wrapped his hand around her whole torso…that came in a close second to the effect of my holding her. All of her alarms stopped going off, she closed her eyes and went right to sleep. She loved having him around. Even the sound of his voice had a calming effect on her.

That’s my mama’s hand on my back

Daddy’s hand is big and strong and safe

I can almost see you!

Our sweet Zoë is home now. Her daddy and I brought her home Saturday, on a beautiful, warm and sunny day, not unlike the day in April on which we would have been bringing her and Lennox home, had things gone oh so differently.

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.