Wednesday, April 28, 2010

Wednesday, April 28

We are simple amazed at how the surgery went today. The surgeon called it a "God thing".

They opened Andrew up to perform the nissen, and as the surgeon was lifting his liver, his liver slipped out of his hand. The surgeon put his hand under the liver and felt something hard. He discovered that the sphincter between the stomach and the small intestine was hard and the opening had contracted. In fact, he also discovered that the g-tube that was supposed to be in his stomach was far into his small intestine. There's a big medical term for the hardening of the sphincter, but we can't say it or spell it. Apparently, Andrew developed this condition since his last surgery. Since the sphincter was contracted, the food in Andrew's stomach had no where to go but up, which is probably the cause of the reflux. The doctor placed the g-tube in the correct spot and corrected the opening to the small intestine. He is hoping that this will correct Andrew's problem, but a nissen may be needed later. We are so thankful for the answer to our prayers. Andrew is resting comfortably.

Mattie's heart rate increased to over 200 last night. There could be a couple of reasons, but we're hoping it was effects of her immunizations. The pediatrician suggested a cold compress and that helped her. We'll keep an eye on her and will be taking her to Cook Children's if it happens again.

Andrew didn't have to have the nissen.
Our skilled surgeon.
The prayers and support for Andrew.

Andrew's recovery and healing.
Mattie's heart rate would stay down.
Adelaide's fever would go down. Side effects from the immunizations.

Tuesday, April 27, 2010

Tuesday, April 27

The pulmonologist visited Andrew yesterday, and Andrew was laboring and working very hard to breathe. They call it retracking when he's breathing so hard that his ribs are showing. The doctor decreased his pressures and rates on his ventilator. Andrew's carbon dioxide levels were elevated as well, and they're still high today. They were back in the 70s. We also received the results of a culture that was done on his trach. It showed that he has two bacteria growing that are from his acid reflux. So, his acid reflux is getting into his lungs and he's aspirating. We were hoping that they might be able to perform a procedure that would extend his g-tube to help relieve the reflux. The pediatric surgeon told us that he's too small for this procedure. Our last choice is to perform another surgery called a nissen. We've exhausted every option because we don't want our boy to go through another surgery, but we have to get the nissen done to help his lungs. The nissen is when they wrap the stomach around the esophagus, so the reflux can't go up. The surgery is scheduled for tomorrow at 4:00.

The girls had their 4 month checkup, and they did great. Adelaide is almost 10lbs and is in the 90 percentile. Mattie is almost 8lbs and in the 19 percentile. They did really great with their shots too. They're tough kids.

The girls great checkup.
Andrew's great doctors and nurses.
Meals, meals, and meals. You continue to support us, and we are so thankful.
Our friends from church and our neighbors, who helped us with our yard.

For a successful surgery.
That this would finally help Andrew's lungs.
A speedy recovery and a move to Our Children's House.
Skilled hands for the surgeon.

Sunday, April 25, 2010

Sunday, April 25, 2010

Last time we posted, Andrew had been moved to the home vent. It was all good; however, as the week finished Andrew's co2 had risen and his lungs began to get murky again. They changed his pressure and rates and so far he seems to have responded well. The pulmonologist is strongly suggesting another surgery called a nissan. Our other option would be to extend the g-tube into the duodenum, so food could bypass the stomach and go straight into his intestine. This would help his acid reflux to stay out of his lungs. There are problems with both options, but the extension on the g-tube seems better to us because he won't suffer the long term effects a nissan would bring. Andrew's.co2 needs to continue to drop in order for him to be moved to Our Children's House. Tomorrow the doctors will be re-evaluating him to come up with the next step in this journey.

Andrew continues to charm the nurses and doctors. He is very aware of his surroundings and continues to "suck the green off" his pacifier. (This term was coined by a friend/RT at Grapevine). He weighs 7 lbs. 6 oz.

Mattie and Adelaide are doing really well. They become more alert everyday. They are also taking more notice of each other. They crack us up when we put them in the play pen. They kind of slide into each other and play touch-me-not games. Mattie also has an eye on Adelaide's giraffe wubbanub. I'm sure this will get a rise out of Adelaide when she is older.

We bought a digital scale a couple of days ago and we think Adelaide is 10 lbs. And Mattie weighs at least 8 lbs. We love to watch all three of them grow.

Watching the girls in their play pen in hopes of them holding hands.
Modern technology and medication, doctors and nurses who have helped and loved on our babies.
The future that Our Children's House brings - it means one step closer to getting Andrew home.

Andrew's blood gas and lab work would look really good in the morning and would continue to look good.
God would give Kevin and Tara discernment as to Andrew' s next step for treatment.
The doctors would have good judgment concerning Andrew.
Kevin and Tara would have peace about the future.

Wednesday, April 21, 2010

Andrew Update - April 21, 2010

We just called the NICU, and Andrew's carbon dioxide level was 54! He was also on 28% - 40% oxygen. So, he's hit the mark the pulmonologist wanted him to. They're moving him back to the home ventilator, and they will re-evaluate on Monday. Hopefully, he continues down this path and next week we can transfer him to Our Children's House. Thank you all for your prayers, thoughts, and kind words.

Tuesday, April 20, 2010

Big Day for Andrew

Tomorrow is going to be a big day for our boy. The pulmonologist and neonatologist met on Monday to evaluate Andrew. His carbon dioxide level was 69 and oxygen needs around 43. The pulmonologist wants him to be in the 50's for carbon dioxide and 40's for oxygen before moving him to the home ventilator, so we're halfway there. They discovered that Andrew has some air leaking around his tracheotomy that may be causing him to have higher carbon dioxide levels, and his acid reflux is getting into lungs causing more problems.

They put in a larger trach and are giving him until tomorrow morning to get his carbon dioxide levels down. Since the new trach was put it, his oxygen levels have come down to the 30's, which is a positive sign.

If his carbon dioxide levels come down to the 50's, and his oxygen needs stay in the 30's to 40's, then we'll be moving to Our Children's House next week on a home ventilator. That is what we want. One step closer to getting him home.

However, if his carbon dioxide levels are still in the 60's, we'll have to make some decisions. We could wait and give Andrew time to grow. This would mean a move to Children's Medical Center where he can get better help developmentally. As he grows, his lungs would grow, and he would slowly get better. We would also continue to have the issue of the acid reflux getting into his lungs, which is slowing the process down.

Another option is to have another surgery. They would perform a nissan, which wraps the stomach around the esophagus, so the acid relux can't come back up. There is no guarantee that this would work though. It would hopefully fix his acid relux, but there's an unknown on how it would help his lungs.

They could also put him on a burst of steroids, again. This seems to be a short term fix with possible long term developmental issues. He's had them in the past, but we would rather not have him go through another round.

Please pray for Andrew. Pray that his lungs would become more clear, his carbon dioxide levels would come down to the 50's, and his acid reflux would become less and less. Pray for God's will in Andrew's life.

Saturday, April 17, 2010

Saturday, April 17

Life with the babies is going well, and we're adjusting to lack of sleep and a hectic schedule.

Andrew is still on the Evita vent and running around 50 percent on his oxygen needs. We spoke with the pulmonologist, and he would like Andrew to have his oxygen needs in the 40s, and his carbon dioxide levels in the 50s before moving back to a home vent. Andrew's carbon dioxide levels have been in the 60s lately, so we wait. If his levels don't come down by early next week, the doctor may try more medications including another round of steroids. The doctor thinks Andrew's acid reflux is really holding him back, and is getting into his lungs. We're tired of Andrew being in there and really want him to get better, so he can come home. Another issue that we may run into is that Andrew is 3 weeks past term and may need to move to the pulmonology or Pediatric ICU wing. A decision will be made in the next few weeks.

Thursday was a very busy and stressful day for us and the girls. We spent most of the day at doctor's appointments. One appointment was planned and the other was scheduled the day before when the doctor's schedule opened up. Mattie was able to be squeezed in to see the same pulmonologist that Andrew has. He said Mattie looked good and wants us to try removing her nasal cannula for short periods of time to see how she reacts. He's also going to increase some medications for her lungs. The second appointment was worse for the girls. They had eye exams, and they hate them. The doctor uses an instrument to hold their eyes open that looks like something out of a sci-fi movie. Adelaide's eyes looked great and will not have to be checked again. Mattie's eyes are not completely developed, so she'll be examined again in 5 weeks. After we left the appointment, our car wouldn't start. The battery was starting to go, and we had to get it jumped. We thought we were going to be stuck in Plano. We got home late after stopping for a new battery, and turned around to go back to Dallas to visit Andrew. Quite a long day.

Adelaide's eyes look great.
Mattie getting in with the pulmonologist.
Weight gain for the babies.
Andrew's Echo looked awesome. No heart issues.

Pray for the decision we need to make on Andrew's care.
Pray that he will improve in the next few days, so he doesn't have to go through steroids, again.
Pray that Mattie's eyes will develop.
Pray for Kevin and Tara as we try to juggle work, medical paperwork, family, doctor's appointments, and visits to Andrew.

Monday, April 12, 2010

NICU Family

Please pray for the D family. We met them a week after the triplets were born. Their daughter, T, passed away today. Please pray for comfort and peace.

Monday, April 12

We've had a set back with Andrew. He had a really bad blood gas, and his carbon dioxide levels have come up. His x-ray didn't look good either. They have moved him back to the Evita ventilator, which is what he was on when he first arrived in Dallas. So far, he's doing better. His blood gas this afternoon is improved. He'll need to get more stable on this vent before he's moved back to the home vent. His been suffering from acid reflux and has been spitting up. The staff is concerned about aspiration, so they put a tube down his nose that goes past his stomach for feedings. This should help with the reflux. Andrew's last eye exam was great, and he doesn't have any problems.

Mattie and Adelaide continue to do well at home. They're both pretty calm babies. Adelaide only screams when she's hungry. We have an eye appointment this week to see how they're doing.

Tara's last day was Friday and it's good to have her home.

Tara's last day.
Babies feeding well.
Weight gain. Especially for Andrew.
Our moms helping us care for the babies.
Andrew's good eye exam.

Andrew would recover from his vent change.
Andrew would be comfortable. Whatever his hurting him would stop.
Mattie would wean off oxygen.
Adelaide's acid reflux would improve.

Wednesday, April 7, 2010

Wednesday, April 7

It's been over a week since our last posting. We hope that you didn't think we forgot about you. It's a crazy busy life that we live. Tara's last day is this Friday, and Kevin's been working on a project that has taken up a lot of time. We've had an enormous amount of help from our moms. They've been working long days, so we can work and visit Andrew.

Andrew is doing good with his trach. He did pull it out late last week, but luckily, the scar tissue had already started to form, and his surgeon happened to be in the NICU visiting another baby. The staff was able to place it back in his throat. He's been weaning off his vent, and his carbon dioxide levels have looked good. The staff started to feed him again, and he's been increasing almost daily. Today, the doctors are testing him on a home vent to see how he does. He's completely off sedation, steroids, and pain relief. He enjoys listening to a CD that we made of us reading books and singing and playing guitar.

Adelaide is doing really well. She's eating a bunch and has a great appetite. She has had some nights of stomach pains, which has kept us up. She's been having trouble going to the bathroom, so we've been trying some home remedies suggested by the doctor. She enjoys her tummy time and is a really sweet baby.

The rooming-in went really good with Mattie. After having one with Adelaide, we were used to the process and got some sleep. It also helps to know that we have the crutch of the monitors. She did have a bad brady episode while Tara was feeding her on Saturday. It scared Tara a bunch. Her first doctor's visit went really well. Kevin had an interesting time getting her there with all the monitors and oxygen. It also took him a few minutes to figure out the stroller. Mattie weighed 6lbs. 10oz., and will be seeing a pulmonologist to make sure her lungs are good.

Andrew doing so well. The home vent is a step closer to home.
Easter pictures of Adelaide and Mattie (coming soon).
Kevin and Tara celebrating Easter morning at home with a reading of the Easter story (no, not the rabbit story).
Babies eating well.
Mattie being home.
Help from our moms, and family and friends.

Andrew would do well on the home vent. His carbon dioxide and oxygen needs would be low.
Adelaide and Mattie would be "regular".
Strength and rest for Tara, Kevin, and our families.
Mattie would wean off her oxygen and stop bradying.

Thursday, April 1, 2010

Andrew - 16 Week Pictures

The first two are before the surgery, and the last one is the first time Tara held Andrew after the tracheotomy. They had stopped his paralyzing medication.