Update - September 11

Snuggle times!

Her mouth is all crusty because she's in an incubator and gets really dried out.

Doing a lot better today!

Today was a better day than we’ve had in a while, sort of.

Lydia did a lot better today. She hasn’t had any seizures or substantial oxygen desaturations since yesterday morning! The medication they switched her to, in combination with the medication she’s already on seem to have her stabilized. We’re hoping that they’ll be able to take her off the medication she’s been on since birth and that the new medication will keep her seizure free. This is really great because the new medication doesn’t have any bad side effects.

Her doctor is already pushing to get her home to us soon. As always, we still need the same things to happen. She needs to breathe well on her own and not have seizures. We also need a way of feeding her. We’re pretty sure a G-tube is the way to go, although the doctor has his concerns. To do the operation, they’ll have to intubate her (put her on a ventilator). For babies who have a less than perfect time breathing, it can be difficult to get them to do OK off of it once they are put on it. The doctor is hopeful, however, because she has already been on one and came off of it without problems.

Some of the test results came back. Most of them showed nothing, but the ultrasound of her belly showed something the doctor didn’t expect. She has “innumerable” cysts on her kidneys. Thankfully, this doesn’t seem to be causing any problems with her kidney function. It is another piece of information that will hopefully point towards a diagnosis. They do have one syndrome in mind that she has several markers for but we have to wait for a blood test that will probably not be back until mid-week next week. We would ask you to please, please pray that it isn’t this syndrome.

It was nice to be able to spend some good time with her today without doctors coming and going and poking her and picking her up every five minutes. We got some good snuggle time together and she slept a lot today. We’re hoping they’ll soon take her out of the incubator and put her back into a regular crib. When that happens, I promise more pictures of cute clothes.

We are exhausted but for the first time in several days, we are hopeful to have her home before too long. We are thankful for the men and women working with her and as always, we are thankful for you who pray for Lydia, for us and for the doctors and nurses. I know we ask a lot of you, but please keep on praying. We know our Father in heaven is listening and using those prayers to change our hearts and our lives and hopefully yours too.

Much love and thanks to you all.