I think anytime the sun is out is my new favorite time of the day because with the daylight has come light (and not just from the sun)!
Today, we held Matthew in our arms and enjoyed watching him sleep. Thankfully he did not rebound jaundice! I also got to spend time with a dear friend, who brought clean clothes and chocolate. We also spent time reading the wonderful notes and comments from friends and family near and far. Our emotional state is definitely sunnier. Thank you!
Now for the update…
The smart doctors here at TCH are narrowing down the diagnosis, but we may leave without one. We are most encouraged that one potential diagnosis that both the geneticists and our neonatologist mentioned w/o conferring w/each other is just a collection of anomalies… meaning what we see, what we know now, is what we would be dealing with. I pray for that diagnosis, called Vacterl Association. There are still others being considered that are much scarier, with much less rosey prognoses. If it is a scarier diagnosis, we will deal with that when we find out. No need to worry now.
The down part of today is that Matthew has had a very difficult time feeding. He only took 2 ccs via the bottle at his last feeding, leaving 48ccs for the NG tube. We really need to get this figured out. The occupational therapists will be back tomorrow at 3pm. Matthew could use the prayers and positive thoughts that we will work this out at 12:00, 3:00, 6:00, 9:00 both am and pm…as these are feeding times.
Matthew and Darren met w/cardiology. Matthew’s heart abnormalities are not uncommon. There is nothing we need to do now, but we will need to follow up with another echocardiogram in a year. The heart may heal itself or may not. If it doesn’t, Matthew may live 70+ years w/it never being an issue. The good news is if in the future his heart abnormalities do become troublesome, there are surgical options available.
Matthew had his hearing test which he passed on right and failed the left but it may be a false fail. They will come back tomorrow morning to retest.
We had one blood test so far, with showed decreasing creatinine levels, which is good. They will want to repeat the test tomorrow to ensure it is still going down. They are concerned about these levels because they indicate kidney function. Speaking of kidneys, we haven’t heard from the kidney doctors today (yet) but hope to soon.
They are having serious trouble getting enough blood for the work up requested by genetics. That is what they are working on now.
Matthew had his skeletal survey. There is no bone in his hand where the thumb should be. But, he already does show favoritism using his index finger as a thumb. This will be important when we talk to the orthopedist at a later date to determine our options going forward. From what we have read, there are several options, with some of the more appealing ones needing surgery between 6-18 months of age.
We are amazed at the efficiency of the hospital. Our only comparison is to the Children’s Hospital in Austin, where we took Alyssa at 3 months for failure to thrive. There, it took us a week to get the tests we needed and she only had about a 1/8th of the tests that Matthew is undergone in the 2 days he’s been here. We are so grateful for the wonderful doctors and staff!
After every consult with our neonatologist, we ask “what needs to happen for us to go home?” Today’s answers: he needs to eat, they need to be comfortable w/his weight gain, we need to get a consult from renal/urology, and we need all of the tests done that genetics, renal/urology, and nephrology are requesting or will request. From the list, it sounds like we’ll be here at least through tomorrow. Hopefully we’ll be able to go home Friday, but as is typical, we should know more tomorrow.
We have come a long way in 2 short days. When we first got here, I saw a picture of a baby who had been here and thought to myself “goodness, I don’t want any photographic memory of this”. Today, a camera is on the list of things for Darren to bring tomorrow. I want to remember when we are months or years removed from today just how far we’ve come.
Thank you for all of your prayers and positive thoughts. We cannot convey our appreciation in mere words!