Tracheostomy Day

73 Days

As of today, we’ve been here for 73 days. As of today: 2 months, 12 days. As of today: 10 weeks, 3 days As of today: 53 weekdays As of today: 20% of the year.

For the past few weeks, Ayla has had a nasal trumpet in her right nostril. It extends through her nasal cavity and stops just behind her tongue.

It’s there to stop Ayla from obstructing her airway and limiting her oxygen. In many ways it has worked just the way we’d hoped. The trumpet has worked better than the airflow that she had before, but the trumpet has presented a new set of problems. Ayla builds up lots of snotty mucus inside of her nose and mouth. The trumpet gets stuffed with goobers and she can’t get enough air. She needs suction very frequently when she’s awake, a little less frequently when she’s asleep. Imagine the suction at the dentist, only it’s through a tiny plastic hose and you can’t breathe while it’s in your nose. Though it isn’t painful, it’s probably a little uncomfortable. So it isn’t perfect, but it’s been doing its job and buying Ayla some time. The goal of getting some extra time: growth. Unfortunately, Ayla’s growth hasn’t stayed on track. She’s gaining weight, but only just and very slowly.

Last week Ayla went up to the O.R. for a Bronchoscopy. ENT (Ear, Nose & Throat) wanted to examine her thoroughly to see if her airway was improving and to determine what our next steps might be. After a bit of a delay (o.k. a long delay. Right, Terri?) the docs came in to get Ayla and we went to the waiting area.

Rewind and Recap

Four or five weeks ago, the word Tracheostomy started coming up in conversation. Alaina and I were a little defensive about the casual use of “the word” because we really didn’t like the idea of Ayla having a Trache. We’ve had numerous discussions with doctors and nurses about Ayla’s complex airway problems and how we might solve them. Every time “Tracheostomy” was brought up, Alaina would pull back and her eye’s would become glossy with tears. I would immediately bring up the other possibilities that we’ve discussed over the past couple months, to remind Alaina that nothing’s been set in stone yet and maybe to reassure myself that the doc’s aren’t forgetting anything. In hindsight, I think the nurses and doctors have probably suspected that Ayla would need a Trache and they were probably just trying to prepare us for it. When the trumpet idea came up, we were excited because it gave us hope that Ayla would do well with it and grow enough to prevent further airway intervention. For a while, she did in fact do well with the trumpet, just not quite well enough. We’ve been cheering her on “Grow! Grow! Grow!” hoping that she wouldn’t need the Tracheostomy.

So we sat in the waiting area with these feelings, assuming that when the ENT Doctor came out he would have bad news. Best case would have been: “Keep the trumpet in and hang out a while longer.” The Doctor came out of the O.R. but he was short on time. One of his other patients was having an important meeting and he needed to be there. We arranged to meet him in Ayla’s room in about 40 minutes to go over his findings. The doctor ended up beating us back to Ayla’s room, I guess his other meeting was already over. He gave us a minute with Ayla, who was under a strange plastic box with an oxygen hose pumping into it.

Nurse Terri explained that the box/hood was just there for humidity, to prevent Ayla from getting a sore throat from the Bronchoscopy. We met with the ENT doctor in a little multipurpose conference room around the corner from Ayla’s NICU suite. This little room, which I’m in right now writing this post, is loaded with arts and crafts stuff that volunteers use to make things for babies — scrapbooking stuff. There’s a TV in here, an oval shaped table, some games, including a game called “Jumbling Towers” which appears to be generic or maybe classic Jenga. Why is it plural? You only build one tower. There’s a dry erase board in here, a phone and a box of Kleenex. The best part of this room is the large window featuring a nice view of St.Louis. For all that this room is, there is one thing that it isn’t. It isn’t a place you want to be called to. You don’t want to have a meeting in here. I’ve dreaded it since we first arrived. I’ve always assumed that this is one of those rooms where they “sit you down” to talk.

Tracheostomy

Ayla’s ENT doctor, Dr. Molter, came right out and said it “I think your baby needs a Tracheostomy.” He continued to explain how and why he came to that conclusion. We’ve known for a while that Ayla has Tracheomalacia, but Dr. Molter explained that it runs throughout Ayla’s trachea, top to bottom. He explained that she was really working hard to breathe and that this hard work is probably the largest contributing factor to her slow weight gain. She’s burning too many calories with her labored breathing. He likened it to an adult having to breath through a straw. He’d also discovered — when he examined her previously — that her jaw isn’t connected on the left side of her face. This is probably another part of her craniofacial anomaly and will definitely require surgery in the future. This finding though, completely ruled out the idea of doing a jaw distraction.

Dr. Molter went on explaining some of the details of the tracheostomy and what it meant, but Alaina and I zoned out. Alaina quietly crying, me with tears hanging in the corner of my eyes, I put my arm around her and we tried to hold it together and remember that it could be much worse. We asked our questions and with a rough plan we went back to Ayla’s room.

Perspective

The thing is, God has an interesting way of putting things into perspective. Just before we came back from the O.R. the baby in the suite diagonal to Ayla’s passed away. The day after, the baby in the suite across from us passed away.

On one hand I’m sad for Ayla and our situation is hard and upsetting. On the other hand I know we could have is so much worse. We HAVE our baby, other’s don’t. Other people spent time in here with their child and are leaving this place permanently without them. I don’t know. It’s hard to experience and too massive to understand.

So Ayla's getting a Trache, and to us it’s a big deal. Or maybe it isn’t. Maybe it just feels like a big deal right now and somewhere down the road we’ll be so used to it that it won’t even matter.

Pray for Ayla

Please pray for Ayla’s surgery (happening now), and please pray that Alaina and I can handle the maintenance and care of the trach with ease. We’re not looking forward to seeing it for the first time, but we are looking forward to seeing Ayla without so much tape on her face, and we hope to hear her taking big deep breaths through her trache.

We won’t be able to hear Ayla’s voice for a while, maybe a long while. So I recorded a little bit of her cry today. This video is a good example of just how hard she’s working and how uncomfortable she probably is with the trumpet situation.

Ayla Stats

Age: 10 weeks, 3 days Weight: 7lb 9oz. Length: 19.75in Facebook/Twitter status: “Gettin’ a trache today so I can breathe awesome. Diaper poopy, BTW. Very angry! Oooooooh mobile just turned on. So happy.”

From the NICU
Corey, Alaina, and Ayla