Tuesday, June 15 - Power of Prayer

It's been awhile since we posted updates. We hope everyone is doing well and that you haven't given up checking on us. Thank you for continuing to pray for our family and for looking at our blog.

Andrew has had a great few weeks. It all started on Saturday, June 6. His doctor called us with an update. He told us that he had just seen Andrew, and it was the best he'd ever seen him. He hadn't spit up, he wasn't laboring on his breathing, and his lungs looked better. The doctor made some weaning changes to Andrew's vent and wanted to check his blood work on Monday. On Sunday, our church had a prayer night, and Kevin went to have the elders pray for the family and specifically for Andrew. The next day, Andrew's carbon dioxide had come down to 42 from 57, and the staff decided to wean him even more off the ventilator. This time they weaned his pressures. They gave him a week on these settings, checked his blood work, and the carbon dioxide levels came up a little to 51. Still a very good number. Yesterday, they felt he was doing so well that they weaned his rate, again! This time down 4 to 14. It's a big jump. Well, this morning his carbon dioxide was 48! We're so excited to see his progress. One of the nurses practitioners has told us that she thinks he's "turned the corner". We believe that the prayers that he's received has helped him to improve, and we thank God for it. Andrew is 9lbs. 2oz.

The girls are doing great. Adelaide's been eating better. She still has trouble in the late morning feed. We started mixing in formula bottles with the breast milk bottles since the supply in the freezer is almost out. Tara has done an awesome job of providing for them all. The girls are smiling and cooing all the time, and we think Adelaide is close to a chuckle. We're really enjoying spending time with them. We took them for their first walk last night. It's so hard to find the time to get them out, but there was a gap in between the feedings last night at dusk, so it worked out great. We also took them to meet their great grandmother for the first time. Mimi's birthday was on July 9, so we met her halfway for lunch. The girls did great on the trip, and we had several people stop by the table to ask if they were twins. We have the feeling that it was the start of many more table visits. Adelaide is 12lbs. 10oz. and Mattie is 9lbs. 5oz.

Praise

Andrew "turning the corner"

Great blood work results on Andrew.

Andrew not laboring after the changes on his vent.

Adelaide and Mattie eating better.

Our babies will be 6 months old on Friday.

Prayer

Continued growth and strength for Andrew.

Adelaide and Mattie would adjust to the formula.

Finding time to make preparations for Andrew's homecoming (getting his room ready, painting, interviewing agencies, etc.)

June 2010 Pictures - Andrew

June 2010 Pictures - Adelaide and Mattie

Wednesday, June 2

We had a Care Conference yesterday, and the staff at Our Children's House have pushed Andrew's tentative release date out to July 6. He's not as far along as they had hoped he would be, and his ventilator settings are still too high. While we're a little frustrated of having two more weeks added, we're thankful that Andrew will have more time to grow and get stronger before coming home. We certainly wouldn't want him to come home before he's ready. They have weaned him a little off the ventilator last night and will have a blood gas to see if his numbers will change. He also had some bacteria in his trach that they're treating with antibiotics and an infection in his g-tube area that is starting to clear after antibiotics. He weighs a little over 9lbs.

The girls are still doing good. We're trying a few different techniques to help Adelaide while she's feeding. Some days she takes her minimum, and other days she really struggles. We'd like her to be more consistent, so her doctor suggested a few things to try. The Nexium medicine that she's on seems to be working for her acid reflux. She arches her back and cries less frequently while eating. Adelaide and Mattie are starting to smile more and more each day. It's a great feeling to walk up to them in their crib, and they look up and start grinning really big.

Praise
The girls acid reflux is less.
Andrew's infection has started to go away.
Andrew is starting to get weaned off the ventilator.
Mattie takes her bottle consistently.

Prayer
The new techniques for feeding Adelaide would work, and she would take her minimum for each feed.
Strength for Kevin and Tara as we travel to Dallas each day to visit Andrew. Help us to remember the goal.
All the details of Andrew coming home (training and using the equipment, finding a home healthcare service, preparing his room and rearranging the home) would go smoothly.
Growth and strength for all the babies.

Wednesday, May 26

We've all been doing well over the last week. Tara's pretty exhausted, but is settling into a routine with the girls. Kevin's been busy building his business and working on projects.

Adelaide is still doing great. She continues to gain weight. She also suffers from acid reflux, but we recently started her and Mattie on a stronger medicine. So far, so good. She's around 12lbs. and is smiling a lot and cooing at us. She also sleeps for 5 hour periods overnight, which is a great relief.

Mattie got checked by the pulmonologist yesterday. He said that her lungs sounded great. She's still on a little bit of oxygen, and he thinks she'll be off in the next few weeks. He wants us to start weaning her each day for a few hours at a time. Last Saturday, we kept her nasal cannula off for 3-4 hours with no issues. He's reducing some of her medications and increasing others due to a cough that she has. She's a little over 9lbs now.

Andrew is doing well, but the same pulmonologist wants his rates and pressures on his ventilator to be lower. His carbon dioxide fluctuates from the 50's to 60's. He also has a new roommate. A big, big three month old. We try to spend the night twice a week. Tara will go one night, and Kevin goes another. We've been doing training classes on cleaning and changing his trach, assessment and treatments, and safety. It still makes us very nervous, but the more practice the better. Andrew has acid reflux still, and the staff is doing a culture to see if there's bacteria in his trach tube that would have come from his stomach. If there is bacteria there, it would mean his acid reflux is still coming into his lungs. The doctor said he would try a stronger medication first before performing a nissen.

Praise
Adelaide gaining weight and getting bigger.
Mattie's lungs sounding good besides her cough.
Andrew and his ability to light up a room. He continues to smile and grin.

Prayer
Andrew's protection while at Our Children's House.
Andrew would grow and gain weight, so his lungs can grow, and his numbers would get better.
Andrew's culture would come back with no bacteria from his stomach.
We would absorb all the knowledge we're getting.
We would find a good home healthcare agency for Andrew.
Adelaide and Mattie's acid reflux would improve.

Bad Math

We said it would be 6 more weeks, but if you do the math correctly, it's actually around 5 weeks until Andrew can come home. This makes us even more happy!

Tuesday, May 18

Andrew is doing really well. They've come down on his settings on his ventilator, and his carbon dioxide and other gas tests look good. He's been bottle feeding too. He took 15ml today. Tara had her first trach care class with him this afternoon, and Kevin will have one on Thursday. We met with the staff during our Care Conference today, and we have a tentative date for his release. It's June 22nd, which is 6 weeks away. We're excited to have a date, but also know that it's going to be a long 6 weeks of traveling back and forth. What's new, right? The joy of knowing he'll be coming home over shadows the drag of the hectic schedule. We have been able to spend the night with him a couple of nights a week, which makes it much easier. Andrew got moved out of his private room because another child that needed to be isolated was given the room. He had a roommate for one night, but she got discharged, so he's got the big room to himself. Andrew loves to smile. He smiles more than both girls combined. He has the biggest grin when people talk to him. It's really awesome.

The girls are doing great. The acid reflux is getting better, but still there. Adelaide seems like she's 12lbs. She's really getting big. Both girls had great evaluations at Our Children's House Grapevine. They passed their physical and occupational therapy tests. They gave us a few things to work on in regards to feeding. We really need to get the acid reflux under control, so they can thrive.

Praise
We have a release date for Andrew.
The babies doing so well.
Andrew settling in.

Prayer
Protection over Andrew while at Our Children's House.
The acid reflux would lessen for all three babies.
Strength for Kevin and Tara as we juggle our schedules and travel to Dallas.
Pray that Kevin and Tara would retain the knowledge they're getting in class and would not be fearful of how we have to take care of Andrew.