Wednesday, May 26, 2010

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.

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.

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.

Wednesday, May 19, 2010

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, 2010

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.

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

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.

Monday, May 10, 2010

Andrew to Our Children's House

We got word that a bed opened up this afternoon. Andrew will be transported to Our Children's House from 10-11. Please pray for a smooth ride.

Monday, May 10

We hope everyone had a great Mother's Day. We spent ours at the NICU visiting Andrew, taking a quick nap when we got home, and taking the girls to Kevin's parent's house for dinner. Thanks to Kevin's brother, sister-in-law, and niece for watching the girls while we went to Dallas.

We found out on Friday that Andrew is waiting for a bed to open at Our Children's House. The coordinator is visiting with him today, and we hope something opens in the next few days. Andrew's carbon dioxide levels have come up a little, but they're still in an acceptable range. He continues to need oxygen in the 20's, which is awesome. The nurses snapped some great pictures of him on Friday and made Mother's Day cards for Tara. He's really photogenic. We also had a nice surprise on Saturday. One of Andrew's nurses from Grapevine called and asked to baby sit the girls for us. It was a great surprise and gave our moms the weekend off. We were able to go see Andrew and have an early Mother's Day date night.

The girls are doing ok, but still suffer from acid reflux. They're going back to arching their backs, crying, and sputtering their milk when we feed them. The increase of Prevacid worked for a couple of days, but now we'll be calling the Pedi again. They continue to gain weight and strength. Mattie has a re-check appointment on Tuesday. Her calcium levels were high last time, so they decreased one of her meds. We're also taking the girls to Our Children's House - Grapevine on Friday for an evaluation for therapies.

For great moms.
For first time moms.
Andrew still doing good with no setbacks.

A bed would open up for Andrew.
The girls' acid reflux would decrease, and they would be comfortable.

Thursday, May 6, 2010

Thursday, May 6

We got a call from the neonatologist this morning, and he had spoken to the pulmonologist, who is following Andrew's case. He will also be seeing him at Our Children's House. He was very pleased with Andrew's progress and how he responded to being put on the home vent. His x-rays looked pretty good and his carbon dioxide level was 50. They want to wean him a little off the ventilator and re-check his carbon dioxide tomorrow, but they are planning to move him to Our Children's House on Monday. We are overcome with joy and actually danced when we heard the news. It will still be several more weeks of being at Our Children's House, but Andrew is one step closer to coming home.

Wednesday, May 5, 2010

Wednesday, May 5

We've had a really good week since Andrew's surgery. He is improving daily, and we've seen some numbers that we've never seen. Andrew's carbon dioxide levels were 42 on Monday and 48 today. This is unbelievable. His oxygen needs have dropped to the 30's and last night he was actually at 21% for some time last night. He looks awesome too. His color is great, and he has seemed very comfortable. He is off the morphine and is getting his staples taken out today. He got moved to the. home vent today as well, and when we arrived his oxygen was 23 percent. We hope the move to the home vent is his final step to discharge from the hospital and over to Our Children's House. He had an x-ray last week, and we could actually see his heart. Instead of cloudy white, his lungs were dark and relatively clear.

The girls are doing good. They had some issues this weekend with feeding. They were both crying and arching their backs when we fed them. We thought it was frozen milk until they did it with fresh milk too. Our pediatrician increased their Prevacid, and they are doing much better. Mattie took a bottle for Kevin in 13 minutes today. They are both becoming more alert during the day, which is a lot of fun. Tara and her mom took the girls to the backyard yesterday and put them in their pack-n-play under a tree. The girls loved it.

Tara had a really rough Monday with the girls when they were still having acid reflux issues. After she fed Adelaide, she was holding her when Adelaide threw up all over Tara. Kevin was at home, but about to leave for work. He helped grab burp clothes and a clean shirt, but it threw the whole day off. Tara had puke in her hair the rest of the day. Mattie decide to pile on to her mom's pain by also throwing up on her at the end of the day. We thought everyone would enjoy a throw up story since we've shared so many poop stories.

Andrew's unbelievable progress.
Tara's mom staying with us overnight and giving us rest.
Both of our moms helping daily while we go to Dallas.
Adelaide and Mattie feeling better with the increase of Prevacid.
Andrew's last eye exam went great. The doctor doesn't want to see him for a year.
The meals keep coming. Thank you all.

Andrew would have a good x-ray and blood gas now that he's on the home vent.
Kevin and Tara can work on their schedules.
Continued weight gain and growth.