We are heading back on the road to go home after a long, but good, trip to the Westside. Both kids are fed and sound asleep in the backseat while my husband is driving us safely East and I am writing this blog to my readers. Not only am I writing this for you, my reader to experience cdh, but also for Fiona so that she may grow up and know of this amazing journey that she has been on.
We arrived in Everett to stay with my parents on Tuesday evening. After driving for six hours and making a few stops to stretch legs, we made it. It was great to see the family and catch up. Then on Wednesday morning, Ted, Fiona and I were back on the road to see her doctors while Kingston stayed with his Noni and loved on her and got to help out with her foster babies. (Yes, babies… She is one tough woman.)
Fiona’s first appointment was an ultrasound of her abdomen to view her clot. Sadly, once again, the ultrasound tech can’t tell us anything. I think they take an oath of silence. Fiona does alright, for the most part, and the hour goes by fast. (Oh, let me point out, at this point in our trip she has only thrown up in the car on the way to my parents, and a little bit while waiting for the ultrasound to start. Success!) When done with the ultrasound, we are off to the Surgery clinic to see our favorite surgeon, Dr. Kenneth Gow. It is always such a delight to see him as he really cares about us and Fiona. Not only in a surgeon/patient way, but in a friend, good person kind of way. (He knows us so well that he too makes fun of me for having a true, blinding fear of windmills. He mentions it every time we see him!) Here is where he discusses with us the thought of a g-tube placement. He is very skeptical to do one for a few reasons. One being that babies with cdh have reflux. Whether she has a g-tube, ng-tube, whatever, she may always have reflux. But, he can not guarantee that getting a g-tube will make the reflux better, it may even make it worse. Another reason is that it is another surgery. She is only three months old and she’s already had two. He just feels that we may do more harm than good so he wants to wait in test results. Fiona is scheduled for an upper and lower GI study this week and he told us that after those studies, Drs. Ong (Pulmonary), Ledbetter (Pulmonary), Gow, Simmerman (pediatrician) and her dietician will discuss the results and see where we go from here. Dr. Gow told us that if she is still on the ng-tube by one year of age, then we’ll really need a g-tube. But until then, we’ll see what the studies say.
Our next appointment was with pulmonary. At this appointment we had three pulmonary doctors, a nutritionist and a nurse. (A lot of people for an examination room!) After looking at her x-ray, they said that while they are still growing, her left lung is pretty much the same size as her right and they look fabulous! Her x-ray showed two clear, beautiful lungs! We were shown how to count her breaths and she fell right into the range of “normal!” So proud of her! Our next time to come back to Seattle will be around the end of November for another chest xray and an echo of her heart, just to track progress.
Another thing that we discussed with them is the importance of a flu shot. I am warning all of my readers now. Starting in October, if you want to see my daughter, you MUST have had a flu shot this year. It is so important, it could mean the difference between life and death for her.
The last item on the agenda for this visit was her feedings and throwing up instances. They believe that her rate was too high and increasing too fast so we are starting low and increasing slowly. Hopefully this will reduce the instances of throw up in her future. We also need to start seeing our feeding therapist more often. The doctors did NOT sound pleased that since we have been home for almost two months we have only seen her three times. Oops… I knew she was taking a lot of vacations…
We then headed back to my parents house where it was babies, babies, babies! Three to be exact! Plus a toddler! Phew, busy night. But, it was wonderful to see my family and catch up.
Thursday morning came too fast and we were off to Children’s again, this time with a car full of stuff plus a toddler. First appointment of the day was a blood draw (which she HATES!). She had to have one on Wednesday to check her lmwh levels (low molecular weight levels – the blood thinner that I have been injecting twice daily into her thighs since we’ve been home), another on Wednesday in her heel to check her blood gas level for pulmonary, and one on Thursday to check other levels for hematology. She was then checked for weight and height (14.3lbs and 24 inches!) And we went into another room to wait for Dr. Pendergrass. He is quite a jolly old man who must play a liver-spotted Santa Claus every year. He told us that her proteins and other things in her blood looked fantastic and while she still had her blood clot, her body has made other routes around it. Which means: NO MORE INJECTIONS!! No more weekly blood draws too! She is young enough that her body found ways around it and she shouldn’t have any problems with it again! We may have some explaining to do when she is 30 and pregnant on why her insides look a little different in that area (I think we’ll have more to explain than just that, though) but she is going to be just fine. Yayayayayayayayayayayayayayayayayayayayayayayayayayayayaaaaaaaaa!!!!!!! Such a relief to hear those words!
I heard many times before she was born that this is a tough, never ending journey. I heard there was going to be a lot of up hill and a lot of downhill. But, I also heard that she had a 50% survival rate. Well, she kicked that one out the window so I know she is going to keep impressing us every step of the way. And I know that I will forever be right by her side encouraging and helping her every step of the way.
Chillin’ at home
Hanging with big brother
Fiona's story 