Wow.... It's been 4 weeks from when we brought Malia home! Where has the time gone? I can not put into words the joy and elation we felt the day we got to take her home! We were a bit nervous I must say but excitement definitely overshadowed our anxiety. I'm not sure where to start since I have four weeks to catch up on but I guess I'll start with week one. Bare with me :)
Week One: We came home with Malia on a routine of eating every 4hrs. 105 ml's of milk, 22 calorie count formula additive, 6 feedings a day. She would eat about half of her feeding from a bottle with thickened breast milk and the other half of her feeding would be through her g-tube, 2 out of the 6 feedings were solely g-tube feeds at night(except the first night, read on). She came home with oxygen for the bottle feeds just to give her the extra energy to drink and keep her heart rate up. She also came home taking Propranolol for her heart 3x's a day and Prevacid 2x's a day for reflux. Feedings were taking about an hour each time with maybe 15 minutes for clean up. The first night home they wanted us to continuously drip her feeding into her over a 8hr time period. It sounded wonderful thinking we were going to get a full night's rest but that wasn't the case at all. Not ever sleeping with this child before, we had no idea that she could grunt and I mean grunt! It was so loud we were up all the time checking on her making sure she was ok. We still needed to get up every 4 hrs to change the milk in the pump b/c you can't leave breast milk out for 8 hrs. Needless to say, the "drip" plan didn't work and it was about to get changed the following night. The next day, Harley and I came up with a plan where he'd take the late night feeding, I'd take the early morning feeding, I go to bed early, he sleeps in a little. It worked like magic. That became our night time routine for the next two weeks. During the day though, things were not working out so well. She began throwing up her feedings in large quantities at least 2x's a day all over the furniture, all over herself, all over us. We were getting pretty frustrated and trying to figure out this sudden change. Just when we thought we knew the reason, we'd make the change only to have her throw up on us again. Grrrrrrr.......this girl was definitely testing our patience to say the least!
Week two: This week was the week of follow up Dr. appointments. We started off the week at the pediatrician. Malia was gaining good weight despite her throwing up, the Dr. increased her reflux medicine, gave us some good pointers, and was overall happy with Malia's progress. Next was the ENT follow up. The Dr. assumed her issues with her throat were the same since her voice hasn't really improved volume wise and wants to do a scope of her throat in 2 months to see if any healing has taken place. Then we had a follow up appointment with the pediatric surgeon to look at her g-tube sight, everything looked good. The last appointment of the week was with the opthamologist who did her eye surgery. We received wonderful news that her eye surgery was successful and she no longer has retonopothy. Yay, praise God!
Week three: She's still puking but it doesn't seem to be as bad. Maybe once daily or even not at all on some days. Things seem to be looking up for Miss Malia and then we go to "feeding clinic". Feeding clinic consist of a Doctor, Occupational Therapist, Speech Therapist and Dietician. They think it's best to put Malia on a 3hr. eating schedule, decrease her milk volume but increase her calories and then let her sleep 6hrs at night. The plan sounded good. Sleep 6hrs. of straight sleep at night, wonderful! Well........... not so wonderful. By the next day Malia was puking up EVERY feeding. We were absolutely beside ourselves! You can only get puked on so many times before you have a melt down. So, I had a melt down! Harley and I tried to brainstorm every possible reason she would be throwing up more. Were we moving her too much during or after feedings, was she upright enough, was her reflux medicine working or is the additional calorie formula too much to tolerate. We had no idea but we needed to make a change so we decided to take her off the calorie additive to see if that would make a difference. Well, it did. She was eating like a "rock star" keeping everything down and even finishing her whole feeding by bottle at times. We thought we had it all figured out again but then 4 days later, she started spitting up and even puking some of her feedings. How frustrating, we were back to square one!
Week four: The dietician suggested we switch calorie formulas so we did and that was even worse. Man o' man, finally I went back to the schedule before feeding clinic, tweaked it a little to coordinate with our schedule better and have been slowly getting her calories back up with the original formula. We go to the pediatrician next week, so hopefully she is gaining some weight and everything is ok. As of now, she is tolerating most feedings with minimal spit-ups. We have gotten really good at recognizing discomfort while feeding and know when to burp and know when to keep her completely still. Harley's step mom, Katie, and 2 little sisters flew in from IL. to help out while Harley is in Haiti this week. It has been absolutely wonderful having them here. Katie is a Labor and Delivery nurse and she has taken on the role of feeding Malia. It has been an amazing break and she's doing a great job! Thank you Katie!
Hopefully from now on these updates will be at least weekly and not monthly. We apologize for not blogging sooner but life has been busier than we have ever known it to be! She is absolutely precious and seems to be thriving at home.
Specific prayer requests for Malia:
1)Healing of her throat and vocal cords.
2)That her brain is developing on track with a normal six week old baby.