It’s déjà vu all over again

Well, it is with a heavy heart that I write this blog entry. Unfortunately, I sit here on Thursday evening next Gwen at a familiar location.

She has been readmitted to Children’s Mercy Hospital.

Today started innocently enough. For the past month (yep, believe it or not, Braelyn and Gwendolyn are one month old today) Gwen has had some respiratory issues. Typically they occurred as something of a choking fit around her feedings but they also happened sporadically without rhyme or reason.

When Gwen was initially discharged from CMH, we brought up the symptoms we saw but we were told not to worry... that they would resolve themselves once she could be placed on her back and the congestion fluid could properly drain down her throat. In the following two weeks that we’ve been home, the choking has progressively gotten worse even though she's been on her back for extended periods of time. Each time Heather brought up this issue to a medical individual, she was told it was probably nothing.

To my wife’s credit, she knew it was something. She continued to diligently call and eventually one of the spina bifida nurses at the hospital agreed to arrange an observation for her. This morning we had that appointment in the Occupational Therapy Clinic at CMH.

We went in this morning and Gwen started exhibiting the same behavior as she had at home rather quickly. Initially, the nurses didn’t seem very concerned… they weren’t sure what the cause was but they didn’t seem to see a major cause for concern. Toward the end of this observation, they hooked up Gwen to a device that monitored the oxygen percentage of her blood. Typically, they like to see it in the 93-100 percent range. When Gwen progressed though her chocking fit, it hovered as low as 71.

Once that figure popped on the screen, the nurse calmly looked at Heather and I and said she’d be right back. Heather and I had no idea yet that this was a very bad thing. Within 30 seconds the door to our room opened to a flurry of activity. We were immediately moved, Gwen was placed on oxygen and we were told we needed to be admitted ASAP because that type of an oxygen deficiency was cause for immediate concern.

Needless to say, Heather and I were equal parts frightened and relieved. I say relieved because again, Heather knew deep down inside her gut that Gwen wasn’t right but she couldn’t get anyone to listen. Now at least they understood that we weren’t just over-reacting parents.

Anyway, after what seemed to be hours but was likely no more than 45-60 minutes, we were admitted and in our room. By this time, it was 11 AM and poor Gwen was throwing a fit. You see, her last feeding was at 6 AM. Because of all the commotion, the observed feeding at the O.T. office that morning was interrupted before it really got very far into it and so Gwen was now famished. Of course, they didn’t want her to eat until they could get her looked over by a doctor… and after the doctor finally saw her, she said Gwen needed to wait until they were ready to administer an MRI. And with it being a particularly busy day, Gwen basically wasn’t able to eat until 4 PM.

So, here I sit in her room at CMH without a whole lot to share. I still haven’t heard the results of the MRI. I have a feeling I won’t know for sure until tomorrow. She did also have a scope of her vocal cords by the ear, nose and throat doctor. The results of that were promising in the fact that there wasn’t a “smoking gun” to be found. We were told that her vocal cord activity was normal and that she had a mild throat flap situation that is actually fairly common in newborns (although most of those infants are able to compensate for it themselves). While we won’t know for sure until neurosurgery looks over the MRI, the E,R & T doc said that given what he saw in the scope, he doesn’t feel Gwen’s issues will require surgery… at least not now.

One of the big concerns for Heather and I going in was that this choking was the result of the brain being compromised either because of her spina bifida or the resulting hydrocephalus. Either of those circumstances would require a follow-up brain surgery to correct the defect.

Without a doubt, Heather and I are praying that the MRI is clean and confirms the E,N & T doc’s assessment. If it does, then Gwen will really just require additional work with the O.T. to hopefully curb her choking. Worst-case scenario under a situation without brain surgery would be that the O.T. can’t help and we’ll have to tube feed her until her throat is able to mature and grow stronger.

Needless to say, Heather and I are once again soliciting your thoughts and prayers. You all were fabulous and got us through our initial stay. Fingers crossed that this stay too is a short one and will have as happy of an ending as possible.

As I get updates, I’ll continue to post them so I guess my hiatus from daily blogging will be short lived… at least in the interim.

Have a good night and thanks again for all your support.