Retina Troubles

So we began our first appointment for the day at Duke Eye center this morning. My parents drove us there because Dennis took Kaitlyn to her first real dental visit this morning. Kaitlyn did well at the dentist, she was a little scared of the electric cleaning tool, so they just cleaned her teeth the old fashioned way without the extra noise. Dennis got some really cute pics that I can post later.

Anyways, Dr. Freedman's associated began evaluating Kyleigh first. She was having a hard time with the left eye and so she pulled in the ultrasound machine. Then she called for Dr. Freedman to come in and take a look. Dr. Freedman said that the corneas looked clear and she was pleased but then she made the sound that told me something was wrong. She said that she didn't like how the retina looked in the left eye and this was troubling to her because of the eyes to have had complications from surgery she would have expected it to be the smaller of the two eyes, the right eye. But she did the ultrasound and saw that the retina was indeed not laying correctly. She immediately called for a pediatric retina specialist but they were tied up at the moment. She explained that she feared the retina had come detached and that this was a possibility from the surgery but again unexpected from the left eye because it was the easier of the two eyes to operate on. We had two other appointments to go to at Duke so she sent us on our way and told us to come back after the ENT and feeding appointments to meet the retina specialists. They were so kind to walk us to the ENT clinic completely across the hospital (for those that know Duke it is a huge and confusing maze). When we arrived at the ENT appointment we had the call to reschedule the feeding appointment because we very well couldn't be in two places at once and we were late leaving the eye center. 

The ENT, Dr. Kaylie, said her ear infection has cleared and that she should be fine to follow up with her pediatrician for all ear concerns. If ear infections become a regular problem then they will consider doing tubes at 6 months of age, otherwise they will plan to do tubes during the cleft palate repair surgery at 12 months of age. 

We left the ENT and headed to our feeding consultation with the speech therapist, Christine. Kyleigh was using the pigeon bottle and it is flowing too fast so they told us to try the valve with a Dr. Brown's nipple. At the feeding she became very frustrated and unable to get the milk out of any nipple presented to her. The therapist was puzzled. After 15 minutes of being convinced that she was drinking, we stopped to burp and noticed the level had not changed at all. That's right she hadn't eaten a bit. She was crying and crying and just plain exhausted. It took a while but the therapist finally got the Dr. Brown's nipple to work (despite some major leaking) and she took 2 oz in 15 minutes. Success, right? WRONG!!! Later the same method failed and since then she has only taken 1 oz at 4:30pm and 20 cc at 7pm. Seriously, I could cry trying to watch her feed. It's pitiful. We have another consultation scheduled for next Tuesday at 10am but we may have to go sooner. 

We then headed to the cafe' for some lunch ourselves and then to turn in her Rx to the optical shop for her glasses. Afterwards we met the doctor for her retina. I will just refer to him as Dr. M as I can't pronounce or spell his name. He was very nice and had left the OR to come and see Kyleigh. Dr. Freedman was also present for this evaluation. They determined that her retina has folded over several times and there is extra fluid in the eye. Her eye is very "soft" right now due to the fluid so they are unable to get a pressure check. The good news is they don't think she will have to have it surgically fixed. Instead, they are trying an oral steroid that may force the retina to lay flat. We go back Thursday morning at 7:30 am to meet with Dr. Freedman and the head pediatric retina doctor (she wasn't there today) to check the retina again. If the oral steroid doesn't work they may have to schedule an exam under anesthesia (EUA) and give her a steroid shot directly into the eye. We are praying that the oral steroid does what it needs to do without the side effects of (acid reflux and extreme hunger -- which is bad when she isn't feeding well). 

This is just a small taste of how Kyleigh's day was and how emotionally exhausting it was for all involved. All of this to say, please continue to pray for Kyleigh. Specifically for her retina to heal and no further problems with her eyes, for feeding to resolve and  that she will start taking her full feeds easily.