Mabry & Alex

Pics of Mabry

She sleeps A LOT.

Pics of Alex

Bored.

Concerned.

Mischievous.

Due date

Today was my due date, but instead Alex & Mabry are 3 & a half months old. Now we are in the positives as far as adjusted age goes. We will used the adjusted age for the babies developmental milestones. 

Alex and Mabry sleep a lot and eat 3 oz. about every 4 hours. This is one great thing that came from being in the nicu, they stuck to their schedule.

Alex smiling.

They love to cuddle.

Update from home - thanks for your support

Well we've been home for a few days and Alex and Mabry seem happy to be here.   There's lots to do in addition to the normal feedings and diaper changes.   Blood pressure checks, nebulizer treatments, medicines, and oxygen tanks are keeping mom and dad busy.   However we have been blessed to have support from friends and family and that has been a huge help.
 

I want to especially thank those of you reading this who have helped us with unexpected expenses or providing thoughtful gifts!   Your help is really appreciated is making a difference in our lives during a really difficult time.  

Also thanks to everyone who is praying for our children.   I know that your prayer has helped them and please continue to pray for their development though adversity.  

When Mabry found out about the nice people who helped Mom and Dad and she smiled!

1st night at home

Yesterday was very tiring. The babies were great, but we spent a lot of time waiting for discharge. They told us yesterday morning at about 930am that they were working discharge, so it would be sooner than we expected. That didn't happen and it was actually still about 1:40pm. Then there was a detour in St.Louis that added about 20 minutes to the commute. This threw the babies schedule off, but we're trying to get back on it.

The hospital sends you home with a lot of stuff, plus all the stuff we took for staying the night; it took some time to get everything put away. Last night went pretty well. It is too hard to drag Alex's oxygen & apnea monitor up & down the stairs. We decided to put their bassinets in the living room & I slept on the couch. We fed them at 9:30, 1:30, and 5:30.

Everyone wants to how Taylor reacted. She didn't really know what to think, she just looked at them. She had not had much of a nap & was crabby, but at least she didn't poke at them or pull on any of Alex's wires (yet). She stayed last night with grandma & grandpa to give us one more night to figure things out with the twins.

Day 106

Well we survived our night of parent care. It was a little rough. Mostly due to trying to sleep in this hospital environment and trying to fit 2 people on a mini couch. Alex's apnea monitor sounded a few times, but every time it was just loose lead wires. It is super loud & startling and basically you're just scrambling to make it stop.

The babies eat every 4 hours now (give or take a little) so that is much easier on us than every 3. We start preparing the feedings & any medicines about a half hour before. We hope to get out of here right after lunch.

Day 105

We are here at Cardinal Glennon doing our 24 hours of parent care before discharge tomorrow. During parent care one of us has to stay in the room at all times. We have to change their diapers, prepare feedings, give them their medicines.

We started by taking Mabry's blood pressure with the Doppler & feeding her. Then she had her car seat test. 

We fed Alex and hooked him up to the apnea monitor that he will have at home. Here he will be on it continuously, but at home he will only have to be on it if he is sleeping or in a different room from us. 

Day 102

 Alex was taken off diuretics yesterday, and we were told that if the babies "behaved" the next few days that they would BOTH come home at the end of this week. This was quite a shock because when we were there on Saturday they said Alex still had 3-4 weeks before he would be ready. He will be coming home on oxygen and with an apnea monitor. Friday morning a respiratory therapist will come to our home & setup Alex's equipment and then we will go to the hospital and stay the night for "parent care", which is basically us taking care of the babies all night instead of their nurse. After all the necessary trainings, they will be discharged and come home on Saturday.

Day 100

100 days in the Nicu. We still are not to their official due date, although we had planned they would come sometime around Christmas or New Years. It's easy to say this has been the hardest 100 days our lives. There has been thousands of miles driving, hundreds of hours spent in the hospital, and buckets of tears. I pump an average of 7 times a day, that's 700 times & over 20 gallons of breastmilk. But enough about Don & I.

Mabry has went from 1 pound 6.9 oz to 7 pounds 1 oz, and Alex was born at 1 pound 10 oz and is now 6 pounds 5 oz. Alex spent 62 days on a ventilator and Mabry about as long under the "super dome" oxygen hood. They endured multiple blood transfusions, countless heel sticks, a heart surgery, a damaged septum, and spent their 1st Halloween, Thanksgiving, Christmas & entire lifetime away from their family. They have both came such a long way, and we couldn't be prouder of how strong they are. We can finally see the finish line.

Mabry the first day we visited Cardinal Glennon.

Mabry now.

Alex the first visit.

Alex now.

Thank you all for continued support.

Day 99

Mom & Dad visited today. Alex has been weened down to 1/4 liter oxygen & is doing well. They are still going to try to ween him off oxygen before coming home. He is doing well on feedings but still has other issues keeping him from coming home (being on diuretics, gaining weight). So while they are working on those things there is still time to get him off the oxygen. If he is off the diuretics and gaining weight, he could be sent home on the oxygen. He just came off the cpap on Monday, and has already went from 1/2 liter down to 1/4 liter today.

Both babies ate really well while we were visited, eating upto 80 ml. We also learned how to take Mabry's blood pressure.

Day 98

Don talked to one of the nurse practitioners yesterday. Mabry is doing great respiratory wise but needs to work on feeding. They will try to ween Alex to 1/4 liter oxygen soon. He also needs to gain weight consistently and be off diuretics.

Overnight Alex ate 60-70 ml at his feedings, but only 37ml at 9am. Usually the 9am feeding has vitamins in it that he doesn't like, so that may be why. He only gained 5 grams yesterday, they would like him to gain 25-35 grams per day. Mabry doesn't mind the vitamins. She ate 55-60 ml overnight & 60 ml at 9am. Mabry gained 35 grams yesterday. Her blood pressure is a little lower since starting the medication yesterday.

Day 97

Mabry is starting on blood pressure medicine today. Both are still eating pretty well. Mabry ate 2 oz (60 ml) at her 9am feeding. Alex only ate 40 ml at 9am, but ate 70 ml at 6am, so they are ok with that.

Discussions have begun about the babies coming home, possibly soon for Mabry.  We took an hour and a half training on infant CPR at the hospital on Sunday as part of our preparation.  Mabry will come home with a doppler to check her blood pressure.

Yesterday they told us that when Alex comes home he will be coming home on oxygen.  We would ideally like to get him weaned off oxygen before he comes home.  Right now they are unable to give us an good time frame of when each baby should be expected to come home.  Both are to have another eye exam on Tuesday.  Alex is currently on 1/2 liter oxygen, the nurse said she thinks they would try to ween him to 1/4 liter before sending him home.

Day 96

Babies did pretty well overnight. They are allowing them to eat or not eat whatever amount they want every 3 hours. Sometimes they will eat about 60 or they may eat only 30. They have increased Alex's oxygen level (strength), but the flow is low (quantity).

Can't get over Mabry's lips here.

Prayers for my cousin Jami today as she says goodbye to her beautiful daughter, Sierra Lynn Wilder.

Day 95

Both babies have continued to eat well overnight. Mabry left about 8ml in one feeding, but the nurse said as long as she only leaves a smidge about once per shift, they would not put the feeding tube back in. They get vitamins in their 9am feeding, and Alex really does not like them. Alex is doing good without the cpap, oxygen is 30-40%.

Day 94

Alex is off of the bubble cpap! He is still getting oxygen (42%), but breathing on his own without the continuous pressure from the cpap. They took him off just after the noon feeding, and he finished his 3pm feeding by mouth. Due to the extra energy he is using to breathe on his own, the nurse said not to be surprised if he isn't able to finish his feeding  and they have to put the feeding tube back in. Mabry also has finished her feedings and is still without feeding tube. Mabry weighs 6 lb 13oz and Alex weighs 5 lb 15.6oz.

Day 93

Alex and Mabry are 3 months old today. Adjusted age is still negative 2 and half weeks, although I never expected to make it to 40 weeks. So far the feeding tubes are still out! The nurse said Alex is eating better than Mabry now. His feedings are a little smaller though. She gets 58 ml & he gets 50 ml. Both will have labs tomorrow & Alex's cpap may get turned down. They are watching Mabry's blood pressure, it is marginally high. It is common for some preemies to have high blood pressure.

Day 92

Both babies pulled out their feeding tubes overnight, and they left them out. They will replace the feeding tubes if they can't finish their feedings. So far they have finished all their feedings by mouth! 

Day 91

The nurse said both babies have been eating good today. She did tell us that Alex has a ridge in his pallet from being intubated for so long that sometimes interferes with him getting good suction.

Updates from the NICU Day 90

We met with the doctors today during rounds.   The gave us charts on Alex and Mabry's growth.  This shows a big picture view on both of them vs an average baby of the same adjusted age.   This chart gave me a lot of information and you can even isolate certain data points such as Alex's heart surgery and see how it affected his growth (part of the reason why he is behind his sister).    Mabry was able to avoid the ventilator, and subsequent chronic lung disease, so she doesn't have to burn as many calories to breathe.   As a result you will see on her chart that she is following nicely along the 50 percentile of growth.  

They cant tell us for sure when the will be able to come home but the estimate for Mabry is around her due date of 1/21.   Alex will most likely be a few weeks behind.    

The plastic surgery team will be meeting with us soon to discuss the eventual surgery required to repair Mabry's septum.