A Breath of Fresh Air

The other day, we had a meet and greet appointment with Lily's new pediatrician (Tracy, thank you for the recommendation. Dr. V is fantastic!) Dave and I never know how doctors are going to take Lily and her condition. Are they going to be like the radiologist who was so rude, or are they going to be accepting and willing to take on our challenges?

I can't say enough about Dr. V. He spent so much time getting to know us, and he was so excited about Lily. Truly, the guy was practically shaking--he just couldn't believe that a Trisomy 18 child would make it to 13 months. It was just so nice to see him recognize and appreciate the miracle in Lily.

The appointment was only a meet and greet, but he asked when we planned to set up a regular appointment. I told him that actually, I was going to make one for soon because I wondered if Lily had a urinary tract infection. She had had a small wet diaper that morning. Dr. V, after telling us how crazily booked his day was for a Thursday, put his schedule on hold and did a routine checkup. Then he had his nurses cath Lily. Sure enough, Lily has a UTI. She is now on antibiotics, so hopefully, she'll be better in the next few days.

As for her g tube. . .what took us so long to agree to this procedure? Actually, I know what took us so long, but wow! I'm nursing Lily maybe twice a day. She's eating every four hours now, but even that will be changing soon. I was afraid that she would be dependent on nursing to get to sleep, but that's not even the case. She nurses at night, but she doesn't fall asleep. I hold her and rock her for a few minutes, but then she starts to fidget. Once she does that, I lay her in her crib, she rolls over on her right side (her favorite!), and she falls asleep. Thursday night she did wake in the middle of the night, but I think she either had gas or pain from the UTI (if there is pain from that). She's been sleeping all night long, too. Oh, how I've needed this for a long time!

As for eating, she's made such progress! She now will open her mouth and take her food. At first, she would just sit there with her mouth open and make this awful whining sound, as if to say "what do I do with this? what is this in my mouth?" She still doesn't take enough bites to make a difference, but there's such pleasure in seeing how much she's progressed! Her therapists would be so proud!

It's all such a breath of fresh air!

Lily is home

Lily is now home! The surgeons said she looks perfect, but we still have not heard back from the cardiologist. I should have called the cardiologist today, but it's been a whirlwind. Lily is tolerating her feeds, even though they are small--she gets 20 ml of breast milk and then nurses for her normal time. When she nurses, she's latched on for 30 minutes, usually, but she doesn't eat the whole time. Yes, I am not only the milk provider, I'm also the pacifier. I like that Lily finds comfort in me like that, but it's time to wean. I think we're going to take it easy this first week and gradually take out the nursing.

I'm just glad we're out of the hospital and Lily is doing well. Thank you, so much, again and again, for your thoughts and prayers. What a blessing you've been to our family!

Surgery

Just a quick post to let you all know that Lily is out of surgery. It went well, but there was a little concern about her oxygen levels--they kept dipping, and we'd prod her to help her remember to breath--so she's in the PICU for the night. Dave is staying with her and letting me stay at Momma's for some much-needed rest.

Lily's oxygen levels are getting better. They dip every now and then, but again, she's bringing them back up on her own. She does have some oxygen for the extra help.

Her cardiologist came in today. The surgeon wanted to make sure the oxygen problem wasn't a heart problem. Dr. L. and his resident doctor listened to Lily's heart and determined that it wasn't a heart problem BUT. . .drum roll, please. . .they also were not able to hear Lily's heart murmur. According to Dr. L., the VSD may be closed! They are going to perform an echo on her tomorrow to verify that. I'm trying not to get my hopes up--as much as I'd like--because he said it could be from the surgery that they're unable to hear the sound. However, he feels pretty confident because of the sound he heard the last time Lily had an appointment. If this is the case, this is WONDERFUL news!

Lily gets her first feed tomorrow. I'm hoping all goes well, but I'm sure it's going to be an adjustment for her little stomach. As for now, I'm off to bed to get that sleep I was threatened I'd better get. Good night!

The Day Before Surgery

Lily got glasses the other day. Gosh, she looks so cute in them, but she hates them! She already knows how to swipe them off her face, and she's quick to do it. I wanted to post some pictures, but the good ones are on Dave's mom's camera. All the moving and settling in to Charleston has not given me time to put the pictures on my computer to share.

Tomorrow we go in at 8:45 for Lily's g-tube placement. I'm quite nervous, so I'm just trying to put it in God's hands and let Him take care of our little girl. Still, fear wants to shake me every now and then.

Dave and I have no idea what to expect. I've had other mothers tell me that they were discharged the next day, but Lily's doctor said she could be in two to three days. Luckily, Dave's parents are down, and we have someone to watch Gabriel during the day. I'm expecting an exhausting couple of days to follow, but hopefully, over time, Lily's surgery will keep her little belly fuller longer, and she'll get better night sleeps. I'll try to keep everyone posted on how the surgery goes, but that will depend on computer access. Thank you for the prayers.