In case I forgot to mention it yesterday – the docs have agreed to let us do a trial run of feeding without fortifying the breast milk with formula. We are very pleased about this – they were only ever adding a few extra calories, but who really knows what is in that formula? We were never thrilled about it. Now that Leah has a surgery date set, it is no longer necessary to get her to gain weight more quickly – if she is 9 lbs now, she should be 10 lbs by November 1 easily. So as long as Leah continues to gain weight, they will let us hold off on the fortifier!

Ms. LeahBug just hit 9 lbs!!!! 9 lbs, 2.4 oz, to be exact. Way to go, BabyBug!!!! Pretty soon she will be 3x her birth weight!

Today Leah is exactly 4 months old. Happy monthiversary, little love!

Check out those bangs!

So! There is a plan.

We spoke with Leah’s surgeon this morning, and it sounds like we are getting back to what we originally anticipated: They will aim to perform the Foker procedure, in which Leah is immobilized (it basically sounds like an induced coma) for anywhere from 3-12 days while they attempt to bring the proximal and distal ends of her esophagus toward one another. They do this by putting sutures in the ends of each pouch and putting tension on the sutures each day to encourage the tissue to both grow and stretch. Some doctors will allow the procedure to go on for up to a month, but Leah’s doctor seems not to agree with that approach.

The surgery will likely take place at the end of October. It would be a bit earlier in the month, but the surgeons will both be out of town at various points in the month, and the one with whom we spoke today said he doesn’t want to be away while Leah is recovering, because vigilant monitoring will be critical to her recovery, particularly if complications arise. Recovery time in the PICU following the procedure is about a month, though it could be longer for Leah because Down syndrome can slow the healing process. Once we take her home she will need extensive OT/speech therapy and monitoring, as there are several complications that could occur which would result in the need for additional surgery. I think it’s pretty safe to say that she will be coming home with the g-tube and will continue to rely on it for some time.

If the Foker procedure doesn’t work, or if the docs see the gap “face to face” and decide it’s just too long to perform the procedure safely, they will do an esophagostomy, also known as a “spit fistula,” in which they bring the esophageal pouch out through the neck to let it drain externally (I guess they would create a hole in it). At that point we would bring her home and then return when she is about a year old for any one of several alternate methods of repair, most of which involve using tissue from other parts of the digestive system to create a makeshift esophagus. While the latter approach would get her home sooner in the short-term, a successful Foker procedure would give Leah the best chance of ever eating normally – so that’s what we’re hoping for.

So there you go. I’ve been saying it would be great to have Leah home by Thanksgiving, but I think it would be more realistic to hope for a return home by the end of the year. That leaves us with another 3-4 months in this limbo, staying at Ronald McDonald House and spending as much time as possible by Leah’s side in the PICU. If you haven’t already shared our GoFundMe link with your social networks, we would appreciate it so much if you would – and please encourage them to share as well! The link is http://www.gofundme.com/leahandhermoms, but you can use http://www.leahbug.com as a shortcut.

Thank you again so much for your continued support and your sweet comments and happy thoughts and prayers. You’ve helped us through this so much. October and November are going to be particularly difficult months but it makes us feel better to know that there are so many people who care about Leah and her progress and who will continue to send her good energy throughout her surgery and recovery. Much love to you all.

Our child had a miserable day.

Let’s get the good and bad out of the way so we can focus on the “OMG, that totally sucks.”

Good:

1) The Mic-Key to Mini transition seemed to go well and Leah is already feeding through the new tube.

2) They were able to wean Leah off the vent immediately after the procedure, so she just has the cannula in.

3) Leah is probably going to win that little photo contest. She is a star. Not gonna lie though – there are an awful lot of other beautiful babies there. She has a lot of competition.

Bad:

1) The kid had a craptastic day and it took Tylenol, morphine, Ativan and then more morphine to get her to sleep. And that took ALL DAY and every magical mommy trick in the book.

We went back and forth on this with the anesthesiologist’s team and had agreed that her last feed would be at 5AM since they were taking her at 9AM – but then they changed it up in the middle of the night because they thought they might take her at 7AM, so her last feed was at 2AM. And of course they didn’t take her until after 9, so she did not get to eat again until about 1:30 in the afternoon – nearly 12 hours later. And we know this kid does not like to be hungry. So she already had a head start on the road to Crankytown. They replaced the g-tube and it looks a lot better, but it probably doesn’t feel very good. They also did a bronchoscopy AND had her on a breathing tube. If you’ve ever had an endoscopy you know that your throat feels lousy afterward. Her throat is swollen and her breathing sounds horrible – and she has the suction tube rubbing against her irritated throat and SUCTIONING against it. Would you be able to sleep? We tried eeeeeeverything, all the magical mommy tricks, but she would drift off for a couple of minutes and then remember how uncomfy she was and get cranky again. After a while we asked for some Tylenol, but that didn’t seem to help. A little later we asked for something stronger and they gave her a baby dose of morphine. That calmed the hoarse, sad little cries, but she still wasn’t sleeping. They gave her some Ativan later in the afternoon, and even after that she didn’t fall asleep. After an appropriate time they gave her a second dose of morphine and she finally drifted off to sleep. She’s been asleep for maybe 5 hours or so and I’m hoping she will sleep through the night after such an exhausting day. I can still hear her sad little gasping from the other side of the room.

2) Leah has mild tracheomalacea – her trachea is a little bit compressed and not fully hardened, but the doc doesn’t see it as clinically significant. My understanding is that kids usually grow out of this condition.

Now, “OMG, that totally sucks”:

Leah’s gap is longer than they thought – about 6-7 vertebral bodies. That is really long. The surgeons here no longer feel confident that they can do the Foker procedure on her, and whatever they do they want to delay the repair until she is older – possibly 8-10 months or more.

We talked about some of our options today and they are conferencing on her case next week with some other doctors. I want to hold off on getting into too many technical details until they’ve actually given us a solid set of options. But suffice it to say that our near future just got a little more complicated.