NICU Day 28

Alex had a blood gas of 73 this morning so he's back up to 50 on his vent (wrong direction) and oxygen level at 45. 

Mabry is down to 26% on her oxygen (good) and not too many changes.  She is growing some new tissue on her septum.

NICU Day 27

Dr.'s haven't made rounds yet today. Alex's blood gas has improved since yesterday. His ventilator rate was decreased from 48 down to 45, which is still a significant number. Reducing this, is one of the first steps to getting him off the vent. His oxygen is hovering around 40%. His feedings are 18 ml every 3 hours, and he gained 10 grams last night bringing him to 2 lb 3.8 oz. Mabry still the same. Her feedings are 19 ml every 3 hours. She gained 20 grams last night and weighs 2 pounds 1.2 oz.

Day 26

I got my weekly reminder on my phone this morning from Baby Center that I am 28 weeks pregnant. I haven't turned off the reminders because each week is a week closer to bringing them home.

 I spoke to plastic surgeon about Mabry's septum. For now they are just watching it and letting it heal. She will need surgery(s) but probably not for a couple years. She said kids aren't affected psychologically by these things until about school age. Besides her nose, she looks beautiful today, someone put a bow in her hair. I finally got to touch her, it seemed like her oxygen sats went up while I was touching her. No major changes for her, just letting her grow. 

Alex weighs a kilo! Oxygen is between 40-45%. They are slowly trying to ween him off the vent, but don't want to go too fast because if he has to go back on, they have to reintubate which is hard on them as we'll. He is also looking handsome today.

NICU Day 26

Alex had a blood gas that was just a little high, but it was not necessary to take action.

No other changes since yesterday.  We'll check back in a bit later after rounds.

 Mom is visiting today and will speak in person to the plastic surgeon.

Plastic surgey in Mabry's future

A plastic surgon from Cardinal Glennon called today with an update.   As we have known the prongs on the cpap have damaged Mabry's septum (nose)

Once the wound heals there will be scarring (her body trying to close the wound) which can cause changes to her nasal shape. The goal for now is to heal the wound on her septum with a little as scarring as possible. 

They would wait a few years until she grows more develops more tissue and then give her plastic surgery to repair it.

They will talk to us more about some reconstruction and when to do it.  It may require more than one surgery as she grows and may require multiple revisions over time.
 
The is a new powder called Matristem that we could consider using on Mabry as she heals (Click here to read more about it).   If we go in that direction Mabry would be the first child at Cardinal Glennon to use it.  

NICU Day 25

Alex is on about 42% oxygen - co2 was up a little on his blood gas reading - so he went back up to 48 breaths per minute on vent after being at 45 this morning and 50 yesterday (split the difference).  He has resumed his feedings and grown to 2lbs and 1 once.

Mabry has grown to 2lbs.   Still on the bubble cpap at 6.  They are adding liquid protein to her diet.  She had a few heart rate drops during feedings overnight but self resolved them without intervention.

Thank you!

I want to give a special thank you to all of you have supported us with cards, gifts, and prayers over the last 3 weeks. 

Your support is helping us tremendously during this difficult time.  

We are blessed to work with the most outstanding and generous people!

Also thank you to our friends and family who continue to help us though this journey.

NICU Day 24

Alex stayed between 33 to 50 percent on his oxygen overnight - is currently on 45 percent. 

Mabry is still on the cpap at 6 and tolerating her feedings well.

NICU Day 23

Alex has moved down to oxygen level of 40 to 45 today and made some progress on his ventilator settings.     Mabry is doing ok she does have damage to her septum (nose) due to the prongs in the cpap.   She is still at a 6 on her cpap today.  

Day 22 pictures

Nicu day 22

I spoke with the doctor today and she gave me detailed updates.   Both brain scans are looking good right now.  This does not give us a long term answer on their brain development but it can be considered positive.

Alex is still trying to recover from his surgery.    His drainage tube has been removed they have began feeding him a small amount of milk again.    Over the next few days we need him to make some progress getting off the ventilator.    His oxygen rate is at 55 currently.

Mabry is on "cruise control" as of right now.   She dis not like having her cpap turned down to 5 so its back at 6.    No other major updates on Mabry.    

NICU Day 21

Update- 3pm -  Alex received a new chest tube to better fit his airway (1/2 centimeter larger).   This was an uncomfortable procedure for Alex but he handled it well.  The tube was placed on the second attempt and he had a chest xray to confirm that the placement was good (the xray will be read soon).   His oxygen level is at 60%.  They have also decided to give him another blood transfusion due to red blood cell counts being a little low. 

update - Mabry is has had a few heart rate drops but has been able to recover without much stimulation.



Alex is staying at 62% oxygen and has been given some blood to help with his heart rate drops.



The NICU is being remodeled so Alex and Mabry will be moved to new rooms (next door to each other) but unfortunately they will not be in the same room.   This move will probably take place today or tomorrow.

NICU Day 20

Update 9pm- Alex's oxygen level is up to 62 percent (wrong direction) and he was given blood today for low hemoglobin. 

Mabry - still on the bubble cpap at a 6.   Blood gas was ok this morning, same as yesterday.  Her feedings are being extended to 1 hour instead of 30 minutes and that has helped her heart rate dips happen less often. 

Alex - oxygen is at 55% today which is high but not unexpected because of yesterdays surgery (the eventual goal is 21%). His chest tube is ok with not much drainage coming out (that's good) and his incision from surgery (in his back) seems to be healing ok so far. 

Surgery was a success

Alex did very well during his surgery and the medical staff has informed us it was a success.

I supported this surgery for many reasons, one being the high success rate.    I trust the staff at CG to recommend what is best, and they did a good job explaining the risk/reward.   Regardless of outcome this was the correct thing to do.

My concern over the last few hours was for Alex personally.   Even though this was the right decision for him he does not like being touched and handled.   I envisioned a young man who is not feeling well being cut into and felt the pain and anxiety that it would cause him.   The next few days will be difficult as he recovers from the procedure.  My hope for him is that he will bounce back and this surgery will allow him to grow stronger and healthier. 

Surgery Ordered for Alex

Update- surgery is scheduled for Wednesday morning.   

Alex has a heart problem called- Patent Ductus Arteriosus (PDA)

The link above explains the issue in detail.   Surgery has been ordered to correct the issue.  As soon as a heart surgeon is available to determine if he is a candidate for surgery (he is) they will schedule the procedure.     Updates will posted as soon as they become available.

NICU Day 18

Mabry - still on bubble cpap - hemoglobin is down a bit so she will recieve a blood transfusion.

Alex- had a quiet night staying 32% - 40% settings oxygen on his vent. 

NICU- Day 17

Alex's echo came back showing moderate PDA. Last week they said it was small-medium, & it's supposed to get smaller, not bigger. Not sure what's going on with that, maybe it depends on the person reading it. Despite this the nurse said he has had good, high oxygen saturations this morning, so they have been able to ween his oxygen back a little.

NICU day 16-update 2

Both babies had a good afternoon. Mabry had her 1st diaper blowout. She now weighs 1lb 11 oz. Alex is on 28% oxygen and weighs 1lb 14oz.

Nicu day 16

Alex had his echo done.  Results will be in tomorrow.   He has increased his feedings by 2ml.  

Mabry has lowered her cpap from 6 to 5.

Both babies are currently sleeping in the photos below.

Diaper pic

Not sure how many more sizes there are, but I'll try to post them all as they grow.

Mabry under phototherapy lights

Mabry napping

Mabry on 10/15/14

Nicu day 15

Update - Alex's echo will be tomorrow and results will probably be available to us on Monday.  

Both Went up on feedings from 12 to 14ml every 3 hours

Alex will get an echo on his heart to check his murmur and see if his heart valve is closing.   Alex has chronic lung disease and has not made any progress on getting off of his vent over the last few days and this echo will see if his heart valve issue is impeding his progress.   

Alex off his oscillator & eyes are open

Alex on 10/15/14  

Update 2 - nicu day 14

Alex had some heart rate drops today so he was given extra blood which brought up his hemoglobin and seemed to solve the problem for now.   He is tolerating his feedings so they turned off iv fluids.

Mabry is staying steady at a 6 on her bubble cpap.   Her pic line could come out tomorrow if she keeps tolerating feedings.     

Thanks to everyone for the support

Alex and Mabry - pictures

NICU Day 14 - Update

It's crazy to think this is the 14th day in the NICU for Alex and Mabry.  Our first daughter spent a total of 14 days in the NICU and was sent home healthy.   Alex and Mabry still have a long way to go but we are blessed to have so much support and so many people praying for them. 

Another positive update today-

Yesterday Alex went down to a 40 settings on his vent - blood gasses are at 63 which is good.   If he can get to a 10 or 15 on the vent then they will try to transition him away from it.

Alex and Mabry are both tolerating their feedings well, getting 10ml of milk every 3 hours.

Mabry still on the bubble cpap at 6 (this is better than being on a vent).  She only had one drop in heart rate last night and none the day before.

Mommy's Blog- A history of updates from the NICU

10/4/14: They are doing as well as expected for 24 weekers. If everything goes well, we can expect to bring them home around their due date, which was January 21, 2015. Mabry is on room air with Cpap for help. Blood test showed signs of possible infection, which may be why Mabry needed to come so early and had to bring her brother with her. She will be on antibiotics for 7-10 days, & Alex will be on antibiotics for 2-3 days, even though he has no signs of infection. They both got umbilical lines and a 2^nd dose of Surfaxin for their lungs.

10/5/14: Mabry’s carbon dioxide levels are good. She is having “Brady’s” which is her holding her breath and her heart rate dropping,a common occurrence for micro-preemies. Alex is intubated with breathing tube and on oscillating ventilator, receiving 50-60 breaths per minute. His carbon dioxide is higher. Doctor’s mentioned him having chronic lung disease, which is a general term and doesn’t necessarily mean he will have it his whole life. Both babies have good blood pressure, are peeing well, and have good heart rate. Both will likely need a blood transfusion in the next couple of days. They are fed 2ml every 3 hours through feeding tube.

10/6/14: We visited the babies for the first time. They are very small, their eyes are still fused shut, and their skin is red and waxy looking. Mabry is on nasal cannula & cpap, 24% oxygen (we breathe 21%). They detect a slight heart murmur. Ales is on his oscillator at 43% oxygen. They say he has P.I.E., air is escaping his lungs and is in his chest. Both are pooping and have good blood pressure. We met with neonatal nurse practioner, attending physician, and pastoral care.

10/7/14: Mabry still on Cpap and her sodium levels were up today, they will treat that with IV fluids and monitor. They dropped Alex’s settings a little as he was doing well, but he is still on oscillator. Both are under phototherapy lights for jaundice. Mabry only had 2 Brady’s today. They are both still eating 2ml every 3 hours but will be increasing that. Mabry’s hemoglobin was 11.9, Alex’s was 12.6. They will be doing head ultrasound in a few days to check for brain bleeds.

10/8/14:Both are doing well today, tolerating feedings & billirubins are down today, no phototherapy lights. Mabry is at 21% oxygen (what we breathe), has had less Brady’s, they are still watching her sodium levels. Alex is at 21-25% oxygen now. They are both eating 4ml every 3 hours.

10/9/14: Both got a blood transfusion today. They are testing their blood so much, the babies can’t recoup it on their own. There are no feedings today because of the blood transfusion. Mabry & Alex both have a PDA, open valve in their heart. They will first try treating with indocin, which they say helps 70-75% of the time. If it doesn’t work, they may need surgery, which they say isn’t as bad as it sounds. They are going to do the brain ultrasounds today. They are both getting PIC lines and will have the umbilical lines removed.

10/10/14: They got Alex’s PIC line in on first try, but will have to try again on Mabry. Brain ultrasounds were good. Mabry’s was normal, and Alex had a grade 1, which is the lowest, most minor & should have no long term effects. They both started their indocin, which means they won’t be fed during this time. Both had good blood gases and no phototherapy today. Mabry is at 23% oxygen & Alex is at 22%. Alex showed some signs of infection, so he will receive antibiotics and have CBC tomorrow.

10/11/14: Mabry had a good day. She is at 21% oxygen & they got her PIC line in. Alex’s oscillator is now on the lowest settings it can be on, and they will try to ween him off it in the next couple of days. The follow-up echo on their PDA shows Alex’s is now small to medium & Mabry’s is moderate, so both have improved and the doctors are satisfied with that for now. They will continue to monitor the PDA’s, they may continue to close or surgery is still an option. They are starting steroids today. Steroids help their lungs and survival. Some possible side effects are they may not grow while they are taking them and it may hinder the ability to fight infection. They are both eating 2ml every 3 hours again. Mabry’s nose is irritated by her cannula. Her night nurse spent a half hour cleaning her nose. Since Mabry’s labs have been good for several days, they are giving her a break from labs tomorrow.

10/12/14: We went to visit again. Alex & Mabry were baptized today. They gave them each a little gown that was laid over them during the baptism. Alex was extubated and on Cpap, but he wasn’t tolerating it, so they had to re-intubate and put him back on oscillator. Mabry was crying, sounded like a little kitten.

10/13/14: Both doing good today. Mabry’s blood sugar was a little high. They say she is feisty. Alex is still doing well on the lowest setting on oscillator. They expect to put him on a regular ventilator in a couple days. He has had good blood gases & will have x-ray of lungs.

10/14/14: Mabry is still on 21% oxygen & weighs 1 pound 9.4 oz. Alex is at 25% oxygen. There was some food left in his belly, so they are watching that.

10/15/14: Mommy visited. Their eyes are open! Alex is on regular ventilator at about 30 % oxygen & tolerating it well. They check his blood gases regularly & tweak the settings accordingly. Mabry is on bubble Cpap and also doing well.

NICU day 13 - Update

Today's update-

Alex had a good blood gas this morning, he is still on his new vent at 21-25% oxygen at a 45 rate.

Mabry is on bubble cpap at a 6.

 Both are being fed 10ml every 3 hours and get fortifier added for extra calories. They both got their last dose of .1 steroids, tomorrow will start lower strength.

Thank you to everyone for your support and prayers!

Just a normal (birth)day

Ever since we've been married Adrianne and I have often went out for dinner on Friday nights.   This Friday night was no different, we went out for dinner and everything was fine.

It was just a normal day.

After dinner Adrianne started to feel a little different, but we didn't think much about it.  Later in the evening it seemed like she may be having an issue, so we went to the Emergency Room.

When they told us she was having contractions I thought things would be OK.  I thought they would give her medicine to stop the contractions and put her on bedrest.  After all, these Twins were not due for 3 more months! 

A few hours later helicopters were flying to Cardinal Glennon Hospital to take away our new born,  1 pound and 6 ounce twin children. 

It started as a normal day, but it became the birthday of our two beautiful children Alex and Mabry