Helen's Health Update

Yesterday we saw a number of specialists at the cranial facial clinic at Beaumont Hospital. Thankfully, we will be sent a written report soon, so I don't have to try to remember all the details.

It was basically informational and not too disruptive to Helen's day. First we met Helen's surgeon and our nurse guide. They were the two we saw last time. They asked us questions about how things were going but we didn't have much new to ask them, other than about scheduling the surgery (still looking at 6-9 months old; they want to make sure she is strong enough to tolerate the surgery, though want to do it before she starts acquiring speech). He told us that she is only 20-30% likely to need an additional surgery.

Next we met with a group of 3 specialists- the nutritionist, occupational therapist, and the one who gave Jacob all the info on insurance (he's glad that there is special insurance we can buy to help with the cost of the treatment). The occupational therapist was most concerned about the nursing and whether she is getting enough calories. This is a little difficult to tell since she isn't using bottles. The fact that we are able to breastfeed at all is really a miracle, considering the odds. The goofy thing is that the only way to know then if she's getting enough calories is by her weight gain. At the pediatrician yesterday her weight was 10lb, 3oz (14th%). That looks low. But that is typical for how our babies have been. She's a lower % than when we were there last but there are 2 other variables- last time they weighed her with her clothes on. This time they didn't weigh her, but took the number I have them from the pediatrician yesterday, when she wore only a diaper. Secondly, she is just coming off another cold. I've been tracking her weight at home and each time she gets sick, her weight drops. It's obvious that she's able to breastfeed, but the question they had was whether she gets too tired to get enough, due to having to work extra hard to suck. My hunch is that she's just got the same body type as Micah and is doing OK with the feedings. But it's something we need to keep an eye on. Thankfully we already have a scale at home (bought when the pediatrician has concerns about Micah's weight when he was about Helen's age).

They also gave us a special bottle to use, just in case. It's called a Haberman Feeder and it's designed so that we can squeeze it and make the milk come out, so she doesn't have to work so hard.

After all that discussion, the occupational therapist asked to take her out of the car seat, where she was snoozing. When she pulled Helen out, they all commented on how long she is. That seemed to lighten their fears a bit- she's obviously growing (she was 23 inches- 64%- at the pediatrician's office) - she's just growing to be tall and thin. The OT said Helen seems to be doing well developmentally, so that was good news.

While she was out, I fed her, since she was hungry anyway. The OT said the position we use is good (I had wanted to ask if there was any better or worse way to make it easier for her. She seems to do best, with less milk out her nose, if she's a little more upright). She makes good swallowing sounds, which is a great sign. But you can also hear that she's not totally closing the opening to her nose. This is expected because she has the opening in the soft palate which doesn't allow for that. So getting milk into her nasal cavity is a given. That's the reason why she often spits milk out her nose, and why she is more prone to infection.

In the end, they didn't insist we supplement but encouraged us to try the bottle (she will likely need to use it anyway right after surgery).

I also had the chance to ask about tummy time. I was concerned because afterward, she always sounds congested. But the OT said that's OK and actually good for her- it's bringing to the front of the nasal cavity the fluid that is in there already, which then makes it easier for us to help her get it out. So we've told the boys it's their job to remember to do tummy time- they're already good at reminding us!

Next, a group of four surgeons came in, including the one who will do the corrective surgery (at least one other was a pediatric plastic surgeon; I don't recall the rest). 

Next, we met an ENT (Ear, Nose, Throat) doctor. I wanted to ask if there were things we could do to avoid her getting sick again (not much). But we can make sure she is sleeping with a humidifier during the dry winter. And she didn't recommend using medicine for her when she gets sick - it would only help with the symptoms, not the cause. The main thing is to try to get her stronger and as healthy as possible for surgery. The ENT looked into Helen's ears and they were clear (praise, God!). Ear infections are common for cleft babies. If she gets them often, then it would be likely that they'd put tubes into her ears at the same time as the cleft repair surgery (so she only undergoes the anesthesia once). It sounds like there's a high probability that she would have these ear infections and need the tubes... but there has been no ear problems yet. This gives us something to pray for - that she wouldn't need the tubes!

The ENT also asked about when we started the boys on solid foods. She said that it's recommended that we try not to introduce solid foods until after her surgery. Breastmilk isn't so irritating in the nasal cavity, but solid foods are another story (gross!) and would increase the risk of infection. 

The other prayer request, then is about the timing of the surgery. It seems that it would be good to do it sooner, rather than later, so that the risk of infections is reduced sooner. And the idea of being able to satisfy a 9 month old solely with breastmilk is a bit daunting. But, on the other hand, the bigger she is, the better she will be able to tolerate surgery. So we need to pray for wisdom about the best timing to schedule this. The surgeon's office will be calling us to set that up soon. 

In the end, the nurse navigator came back in and wrapped things up with us, even inviting us to the annual holiday party they have for patients' families. It really underscored the supportive nature of this team of specialists. We feel very thankful to be connected to this team who is caring for the well-being of our daughter. 

We appreciate the prayers of friends and family as we do our best to care for Helen's needs now and prepare for surgery in the future!