3 1/2 Weeks to go and Craniofacial/Cleft Nurse Meeting

We are T-minus 25 days until this baby is due. When I told a friend I was pregnant (months ago), she said, "it goes fast and slow all at the same time, and by the end you'll definitely be ready." Emotionally and physically we feel so ready to have this little guy here. Logistically, though, this dude needs to stay in there at least another week and a half. 

The midwife said on Monday that it looks like he's around 6+ lbs now - meaning we're looking at possibly an 8 lb baby at birth. Eek.

In other news, we are currently mid-move. Literally. As I write, I am sitting at the dining room table in our old house typing and killing time while the movers bring all our worldly possessions to the truck out front. Better now than when we have an infant. The house sale finalized a couple weeks ago and now we are official Portland homeowners. This is us celebrating!

House Celebration.jpg

Now on to the cleft update. I've been meaning to write this up for a couple weeks, but as you can see, we've been a bit busy. We FINALLY got a chance to meet with one of the nurses from the OHSU cleft team, so we have a lot more information and feel really good about moving forward.

The Cleft Team

First, just meeting Maureen, one of the two craniofacial nurses was incredibly reassuring. We had heard wonderful things about the OHSU craniofacial team, but having her sit down with us just to talk through everything in depth and patiently showed us the kind of people we'll be working with.

What I've heard is that when it comes to treating craniofacial differences like cleft lip and palate, it's essential that an interdisciplinary team of healthcare professionals should work together seamlessly. That's what we're already seeing. This team consists of the nurses (Maureen and Lisa in this case) who serve as the point people. Then, you have the surgeon, of course, but also the speech pathologists, the feeding specialists, and more. 

People come from all over the region to be treated at OHSU for cleft lip and palate and it's clear that the kiddos and their families form a very special bond with them over the years. While there will certainly be difficult times, I feel so grateful we'll be surrounded by such a caring and cohesive team of professionals throughout the journey.

The Timeline

Cleft Surgery Timeline.jpg

The discussion we had with Maureen centered around this helpful image of what to expect over the next 20 + years. It's crazy to think that we're looking at a couple decades. But honestly, it didn't feel overwhelming as so much of it is spread out. Also the bulk of what we'll be facing is in the first year and I feel a lot better that it'll be much more manageable than what I originally expected.

At the top, is obviously the timeline and I'll go through that below. However, the images on the bottom are essentially what the cleft palate could look like. A lot of the procedures could depend on what the cleft palate severity is, but it all depends.

The two images on the left are normal palates. The third image is a unilateral cleft palate. This is what we expect Baby Doerr to have given he has a unilateral cleft lip. And the last image on the right is a bilateral cleft palate.

Now to the timeline...

Age 0 to 3-5 months

The cleft team will be alerted when I'm in labor and admitted to the hospital so that they can be prepared to come in once the kiddo is born. Soon after he arrives, the craniofacial team (the nurse, the surgeon, and the speech path) will all be on hand to assess our little dude.

The first step is to assess the severity of the cleft palate. There's still a small chance it's only a cleft lip and the palate isn't affected, but we we don't expect that to be the case.

The most immediate concern is feeding, of course. As I noted a couple weeks ago after talking to a feeding specialist, I was really nervous that the baby would have to be fed through a feeding tube if it was a severe cleft palate. Well, turns out that very rarely is the case. It really only happens when the baby is a preemie and at this point, even if kiddo comes tomorrow, we'll be with a full-grown and developed baby, so we have no worry of that right now. 

So the trick is to get me up and pumping and they'll equip us with special bottles made for cleft babies. (Yay for insurance, we don't have to pay for any of these bottles). She walked us through how to use the bottle which is pretty easy. And someone will be on hand to help us out with that and me with the pumping.

The first month of his life will be pretty much like any newborn's: mom and dad frantically trying to figure out how to be new parents. Eek. We will likely have to tape his lip, but nothing too crazy. He'll have a few more appointments than the average newborn, but hey, it'll get us out of the house.

Once we've more or less got the hang of this parenting thing (emphasis on the "more or less"), kiddo will be fitted for some fun, kind of medieval looking devices to help with the outcome of the cleft:

Lip taping, NAM, and nasal stent: In the last few years, craniofacial practitioners have started the practice of lip taping and the use of a NAM. The lip taping is as simple as it seems, putting a piece of tape over the lip to help close the gap. The NAM (nasoalveolar molding), is kind of like a retainer that helps mold the palate closing the gap up a bit more. The nasal stent - in the cases there's some flattening of the nose - essentially molds the nostril to lift it a bit. It all looks a bit medieval and medical and is probably more jarring for other folks to see than the cleft itself, but it vastly improves outcomes.

These are all optional treatments as they also come with a bit more work on the part of the parent. It's a lot of cleaning and going in for regular (~weekly) appointments. We will be going with this option, though, as we think it's worth the work to improve the outcome. Maureen assured us that while the babies might find it annoying, they're pretty resilient. It's harder on the parents.

As our kiddo makes progress throughout those first few months, the team will decide when is the best moment for surgery #1.

Surgery #1: Sometime between 3-5 months, kiddo will undergo his first surgery to repair the lip and the nose. I've heard it time and again from parents and Maureen mentioned it as well, but while it's often a wonderful relief to see your kiddo with out all the contraptions and to have the lip repaired, it also comes with a sense of loss. When your baby is born with a distinct feature, there's an attachment that you can't separate from that. It's amazing what a parent's love does.

12 Months

Now we're on to about a year. At this point, we're done with most of the contraptions, kiddo is probably eating solids by now. He still has the cleft palate, but it's become normal by now for everyone involved. So at this point, this is when the palate and if necessary ear tube surgery will take place.

Once we've reached the 12 month mark and kiddo has recovered successfully from surgery, the medical treatment is much more spread out and the rest all depends on how kiddo is doing.

He'll probably start speech therapy (even before he's talking I believe) which will likely continue throughout his life.

12 months to 4-5 years old

During this time, he'll receive speech therapy and be evaluated on whether he'll need dental surgery or surgery related to his speech. We'll know more details as we get closer to that stage.

7 years old

Around this time he'll be evaluated for any orthodontic surgery necessary. This all depends on how his adult teeth come in.

Beyond 7 yo

I don't think I'll go into the timeline after this as it all depends. The assessments will be gradual and really just depend on how his teeth come in, how his speech progresses, etc. I think for now, we're just concentrating on the next few weeks and months.

At this point, we are so excited to welcome this kid into the world. I'll leave you with a couple of pictures from the ultrasound from that day. (note: If you're creeped out by 3D ultrasound pics, feel free not to keep scrolling :) ). While we're usually really creeped out by the 3D ultrasound pics, the one we got as I approached 35 weeks showed us a pretty much fully-formed baby. We could also tell that he is very much a Doerr. Cory and I both couldn't stop looking at it. It makes me so excited to hold this little guy in our arms in a few weeks. We cannot wait to share him with all of you. 

The first one you can kind of see the cleft on his left side. On the right, you can get a pretty clear view of his profile. Kiddo definitely has my lips, nose, and chin. 

Now the countdown really begins. Once we're settled and nested, I'll share some of those pictures. But keep an eye out for this kid's arrival!

Elizabeth Doerr