Our new au pair Mila arrived today from Colombia (via a few training days in NY) and the girls, Tommy, and his mom met her at the airport. A sleeping Maggie and I facetimed with her to say hello as well. We are very excited to integrate her into our family, even in the crazy disarrayed state that it is in currently. I hear they are off to the Museum of Life and Science tomorrow after a good night’s sleep.

Today was a pretty blah day in the hospital – Maggie was a bit cranky for most of the day, and so was I. I found myself agitated at a bunch of little things today – for example, the food trays are never right. Whenever we transfer units, they reset our orders and send a random automatic assortment of food. But why would they ever send an auto-tray to a 16 month baby consisting of coffee, a bagel with syrup (?), chewy bacon, and plain oatmeal with no brown sugar or other mix-ins?!? And lunch was no better. Maggie’s neutrophil count did not quite reach 500, but at least went up a little for the last 2 days straight. She is still needing oxygen but a bit less than yesterday. Highlight of the day was seeing another baby on the unit celebrate her 1st birthday – she is the only other kid with Hurler’s I’ve ever met, and she is very cute. I only briefly walked by the celebrations though, since I was having a pretty blah day, but I did snag a piece of birthday cake.

Tonight was our wonderful au pair Angelica’s last night at home before she does a quick round trip to Niagara Falls and Chicago (driving with her friends, in 4 days, I think she is crazy) and then heads home to Colombia. This was the girls’ last night with her and there was a party and presents and cake! Angelica came to say goodbye to Maggie earlier this week and Maggie was SO HAPPY to play with her. She will be surely missed. Maggie and I spent the evening being grateful for being back in her room on 5200 with our team of wonderful nurses and amenities. It feels like coming home after a (thankfully not that long) trip. Maggie seems to be feeling pretty well but is still needing oxygen and her breathing is a bit tenuous. But we got some great news today that her early chimerism studies show that all the circulating blood cells are donor derived, so her slow engraftment is likely not due to graft rejection and I am really hoping for a higher neutrophil count in the next few days. So farewell to Angelica, farewell to the PICU, and farewell to Maggie’s own blood cells!

Today marks 1 month in the hospital and to celebrate, we got shipped back to the PICU last night due to Maggie’s breathing fast and hard. She started having fevers again and with fevers come her fast breathing and need for oxygen supplementation. It was a bit less severe than last time, and they are similarly working her up for infections but thinking it may just be her engraftment syndrome. Our PICU accommodations are slightly more spacious this go round, and I have an interesting view of the new Duke Children’s Hospital construction site. Maggie has settled out nicely and is looking pretty okay tonight – I am hopeful maybe we can go back to the BMT floor tomorrow. No rise in her neutrophil count yet – that we are still waiting for. I facetimed with the girls for a while and all seems well at home. Kaya was very excited to report the tooth fairy did show up, and Laney is excited about Pirate Day at school on Friday. Sorry no pictures today.

Big news of the day is that Kaya lost her first tooth! She has been super excited for weeks (actually, years) about her wiggly tooth and today was the day. We’ll have to see if the tooth fairy can manage a visit tonight (he has been a little stretched lately, but I think will pull it off). In the hospital, Maggie had a good day although is feeling crummy tonight. I think she has actual engraftment syndrome (with that other stint being pre-engraftment syndrome). I’m hoping we can manage with Tylenol and lasix and avoid more steroids (and the PICU), but we shall see. She did have some neutrophils in her blood today, so here’s hoping for even more tomorrow. Is 500 too many to ask for?

Our hospital room is only so big, so keeping a baby entertained can be challenging. One way I try to mix things up is by giving her time in the different places in the room – her crib, my bed, her highchair, the floor (on a playmat), and on the chair. I think the chair is her favorite because she feels like a grownup, and because I let her watch movies on my computer. Her physical therapist tells me to give her lots of playtime in the “high kneel” position pictured here. I’m not entirely sure that watching movies in that position is what PT had in mind, but I think it still strengthens her gluts, right? No movement on her blood counts today, which is discouraging. She is still feeling okay and today they stopped her steroids to try to get a handle on her CMV and stopped her pain medicine (because I don’t think she’s in pain anymore). So we wait and high kneel.

Same old today at the hospital – Maggie’s blood counts have not budged and her neutrophil count was nearly zero today. Today was the first day her transplant team admitted they were “a little” worried. Median time to engraftment for cord blood transplants is 22 days, and we are at day 17, and we know that CMV delays engraftment, so it’s too early to actually worry. Except of course I’m worrying. But she is feeling pretty good and played most of the day. She also had more of an appetite today and she pulled up 5 times today, which is 4 times more than yesterday. Tommy came for a while today and I hear the older girls had a day filled with museum-going, blueberry-picking, and goat-feeding with Gammy, Yoya, and Dylan. I didn’t take any good pictures today, but here’s a nice one from the weekend before we came into the hospital.

No big updates today except Tommy came to visit tonight! Maggie was very excited to hear a version of ‘Brown Bear, Brown Bear’ with slightly different intonation. Otherwise we are status quo – counts were not worse today, which I was thankful to see. Hoping for some upward movement soon. Here’s Maggie giving mouth care to Elmo, the newest star of the blog, apparently.

We had a downright boring day here in the hospital – Maggie is getting slightly more stamina every day. However, her counts were disappointingly much lower today. It worries me a lot, but her transplant team is less worried (or refuses to admit their worry). She is now on treatment for CMV as her viral copies keep going up (I thought maybe this is why her counts dropped, but her team doesn’t think so), and she is barely eating. On the plus side, her butt looks a little bit better. Looking forward to having Tommy and the girls back in town tomorrow. At least Elmo is here to keep us company.

Finally I got a real smile from Maggie today – she is clearly feeling a bit better, although also still so tired. She can only play for a limited amount of time and trying to get her to move around on her own is tough. At baseline she has to be coaxed to crawl or walk, so you can only imagine getting her to do it on steroids after several weeks of being held or in a crib. But luckily for Maggie, mommy the drill sergeant is staying with her. But we had a great day despite my pushy ways. Her ANC fell ever so slightly today (to less than 500) so day 1 of engraftment has to wait. I think all of her neutrophils went to her not-yet-better butt. I got to facetime with Laney who told me she is STILL at the beach, and I barely got a wave from too-cool-for-school Kaya.

Today we celebrated July 4th with a neutrophil count of >500! Hopefully it will continue to rise and those neutrophils are donor cells. And that her new immune system is strong enough to fight infections but not too strong to fight her body. Just small dreams we have. Maggie had a pretty good day – they are starting to wean her pain meds, her nausea meds, and her steroids. Still not much of an appetite, but I did get a half smile today. But not nearly as big as this smile from Laney at the Duck 4th of July parade. Missing my other munchkins a lot today on this American birthday! May Americans remember that all babies deserve comfort, safety, and love, even babies that may not all be exactly the same. Feeling blessed to be able to cuddle my youngest baby tonight.