Day 58

Mabry is up to 4 lbs. Taylor weighed 4lbs when she was born, seems hard to believe because Mabry feels so small. Also she is wearing clothes for the first time. There is talk of her coming out of the hood soon. Alex got a new, bigger mouthpiece and has maintained his progress that he has made over the last few days. He is at a rate of 26 & 38% oxygen. I've noticed today that when he desats he is correcting himself without the nurse having to intervene by turning up his oxygen.There is also talk that a big move for Alex may be coming soon as well.

Cardinal Glennon - keeping families safe

Cardinal Glennon is working to keep families safe despite nearby civil unrest.   The National Guard is at the perimeter and the added feeling of security is comforting during a stressful time.

Hat tip to an old friend, and Centralia native, Damon Harbison for his leadership at Cardinal Glennon Hospital!

http://www.modernhealthcare.com/article/20141125/NEWS/141129990

NICU update

Here's a quick overview on Mabry and AJ after our visit and conference with the medical staff today.

Mabry - In my professional medical opinion she will be able to come home around her due date (Jan 21).   Mabry continues to have a destroyed septum so she will not be able to come home on oxygen.  

Mabry has done great so far but like her brother, or any other 24 weeker, still faces challenges in regards to vision, hearing, speech, balance, and development of higher order thinking skills.   

Alex has made progress on his ventilator but there is no clear time table on when he will be able to get off of ventilator support.    They are going to keep pushing him and see how he responds.  

Alex has chronic lung disease and will be at a high risk for pneumonia and other respiratory problems for several years in addition to all the risks for Mabry listed above.  Even 10 or more years from now he may show effects from his time on the vent.   We are praying that he can begin to heal as soon as possible.   

Day 56

Alex's rate was lowered to 32 today, he is currently at 35% oxygen, overnight he was 35-40%. Doctors had just made rounds before I called, and his nurse said his doctor seemed pleased with Alex's progress. No changes for Mabry. Alex is weighing 3lb 9.3oz and Mabry 3lb 14.8oz. We are going to visit them tomorrow:)

Day 55

Mabry is at 24% oxygen and weighs 3lb 14.3oz. Alex's rate is down to 38 and is at 34-38% oxygen. Hoping Alex has turned the corner now, and that he can get off the ventilator soon. He weighs 3lb 7.9oz. Happy Thanksgiving.

Day 54

Today I would be 32 weeks pregnant. I can't help but wonder how different things would be if my pregnancy had made it even this just far. I remember being on bedrest with Taylor and a nurse telling me 1 day on the inside for a baby was like 3 on the outside. 

Doctors have not made rounds, but their nurse said Alex is on 36% oxygen right now. This is good news, but he is laying on his belly, and Alex always does better on his belly. I am not visiting them today. We are not sure if it is safe for me to travel alone over there with all of the protests, and Taylor had a fever overnight, so I need to stay with her today. I miss my babies though:(

Day 53

Alex is still at a rate of 46 and 38-45% oxygen. He gained about 2oz yesterday, bringing him to 3lb 8.6oz. Mabry is at 3lb 10.4oz. The doctors have not made rounds yet today, but I don't expect any changes made for either baby. I asked her nurse about the conditions around the hospital. She said she did not have any trouble getting to the hospital this morning, but is concerned that the protests will resume tonight. She said the hospital has beefed up security.

I44 and grand st closed by protestors

This is about 3 blocks from the hospital and the route that we use to get home.   Please know we are not in St. Louis tonight and are safe at home.    Shift change for the nurses already occurred at 7pm and we have been ensured that the hospital has extra security on site.  Also I am hearing that staff will have some oppertunity to stay at the hospital if it becomes unsafe to leave.   My hope is that I44 is cleared for the morning shift to arrive safely.   Also I am praying for peace and healing in the hearts of all people involved in this protest.

Day 52

 Mabry's feedings have been increased to 35ml every 3 hours & she is still under the Super Dome at about 28% oxygen. Alex is still at a rate of 46 on the ventilator and at 39% oxygen. Blood gas this morning was a 58. He is eating 27ml every three hours. They were concerned that he had gained too much weight Saturday night, but he lost a little at last nights weigh-in, so they are watching that. He currently weighs 3lb 6.5oz. I'm thankful to see Alex's oxygen in the 30's, hopefully it will stay there or go continue to lower. Even the slightest bit of improvement is helpful for our spirits right now, it was a rough weekend for Don & I.

Day 51

Mabry has made some progress on her oxygen levels, down as low as 25%.  

Alex has not made any new progress  and remains in the 40% range.  

Day 49

There isn't much news to report today so let's do a quick recap of the situation.

Alex and Mabry were due on Jan 21st but born on Oct 4th.

Mabry's Positives - Breathing well on her own and tolerating feedings

Mabry's Concerns - Potential effects of her infection at 24 weeks, along with all other potential issues for all mirco preemies.

Alex's positives- Tolerating feedings, has been able to avoid additional infections and needs to continue to do so, o2 level down into the high 30's.

Alex's Concerns- Chronic lung disease caused by the ventilator scarring his lungs.   Needs to grow more and be weened of the vent and begin breathing on his own.

Day 50

No real updates today.   Thanks you for your prayers and support.

Day 48 pics

Day 48

Alex and Mabry have been reunited. The remodeling is done, and they are back in the same room in the twin hallway. So far that is the only big change for today. Alex is still at a rate of 46 and is at around 41% oxygen. The did increase his feedings to 27 ml every 3 hours. He did not have a blood gas today, but will have one tomorrow. Alex weighs 3 lb 2.1 oz and Mabry is tipping the scales at 3 lb 6 oz.

How long will Alex and Mabry be in the NICU?

Today is Day 47 of what will probably be about 110 days in the NICU for Mabry and even longer for Alex.  

 The doctors said that Mabry may have been on a path to come home sooner but due to her septum being damaged/destroyed she will not be able to come home on oxygen because we would not be able to get the tubes in her nose.   So my understanding is she needs to be eating, growing, and breathing 21% oxygen before she is released.  Lot's of hurdles still to climb for her.

Alex had his vent settings turned down today (good) but so far his blood gas is higher and o2 settings are higher (bad).  My hope for him is that he can hold his gains today.

Mom is visiting today.

Day 47

Alex had a pretty decent blood gas this morning, considering the weening to his vent settings over the last few days. His carbon dioxide was 61. The weened his vent back to 46 this morning. His oxygen was at 61%, but they were doing his assessment when I called, so they always have it turned up while doing that. I'm heading over to visit after all, hoping for no indictment decision while I'm there.

I got to hold both babies today, not at the same time, of course. Both tolerated it well. Alex has been in the 40s-50s on his oxygen while I've been here. 

Day 46

Alex did not have a blood gas this morning, but they weened the rate on his vent down to 50, and he is at 42-45% oxygen. He is on his last day of Fluconazole, the antifungal medication. He will have blood gas tomorrow. Alex weighs 3lb 1oz, and Mabry 3lb 3oz. Mabry is having eye exam today. I always visit the babies on Wednesdays, but due to the expected announcement of grand jury decision on Ferguson indictment and the protests to follow, it doesn't look like I will get to go this week.

World Prematuirity Awareness Day - November 17th

Today is World Prematurity Awareness Day.   1 in 8 babies are born premature.  For babies (like Taylor) who are born 3 to 6 weeks early premature birth may be a very small issue that is outgrown over 2 years.   Babies like Alex and Mabry are actually called "Micro Preemies" and complications from their low birth weight could present life long challenges.   The March of Dimes has taken the lead in raising awareness about this issue.

I'd like to take this opportunity to explain some things about our situation-

Every preemie is different - we appreciate the support from people who tell us they know someone with a preemie that "turned out fine" but each situation is very different and to compare a child that was born 6 to 8 weeks early to a micro preemie is unfair.   We are very glad to hear that someones cousin had a neighbor who had a co-worker with a preemie that is now "doing just fine".   However, that does not change the struggle for survival that Alex and Mabry are enduring and the uphill climb that they continue to face.

This was not preventable - There was absolutely nothing that we could have done differently to avoid this from happening.  This was completely unrelated to Taylor being born at 34 weeks.  We took every approach to avoid this and it happened anyway due to an infection that was impossible to prevent.   While I do support potential mothers becoming more aware, in our case, every possible optimal action was taken.

We appreciate your support-  Having a singleton baby a few weeks early is difficult (we know all about that) - but having twin micro preemies changes your entire life.   We appreciate the support of everyone who has reached out to us during this time and please know that your actions have made a positive difference in our life during our deepest time of need.   Thank you

Day 45

We now have two 3 pound babies! Alex weighs 3 pounds 1 oz. and Mabry weighs 3 pounds 1.7 oz. Mabry still coasting along under the "Super Dome". Alex had a good blood gas this morning, carbon dioxide was in the 50's, which I think is the lowest its ever been. Because of this they have lowered his vent rate from 58 to 54. He has had a couple destats to the 80's, but nothing major, he should be 90-95. They are giving him 60% oxygen until he hopefully gets used to the rate change.

Day 43 mini care conference

Today I met with 2 doctors in what I would call an impromptu care conference.    Both doctors spoke to me informally and were very generous with their time despite extremely busy schedules.   

We discussed Mabry's damaged septum and agreed that it is very disappointing that the damage occurred.   They did not point to a nursing error for this outcome but did mention that Mabry's poor outcome has 'raised awareness' of this issue at the CG NICU.    We agreed this is not just a cosmetic issues but one that can cause sleep, breathing, and sinus problems.   There is some hope that her septum will partially regenerate over time, as happened for a different baby in a similar situation here 3 years ago.  

I value the relationship with these doctors as they are consulting us on almost all decisions.   After much discussion I have instructed them to hold off on a second round of steroids until they can identify an 'inflection point' to maximize results.    This decision was made as a team and we all believe it is in Alex's best interest from a risk/reward standpoint.

I was able to hold Alex for the first time which was nice for the first few minutes.   Then he began a major desat into the 60"s and needed his oxygen boosted from 38 to 59.   At that time I expressed that I wanted to end the holding session and we put him back.   Shortly afterwards his oxygen level stabilized. 

My prayer is that God would decide to start moving Alex toward health each day and eliminate any difficult decisions for us in regards to his treatment.    We trust that God will guide Alex and our family in a way that is pleasing to Him.

Thank you for your prayers and support.

Day 42

Alex blood gas this morning was 63, down from 71 yesterday, so that is a little improvement. His oxygen is at 48% and rate of 60. He weighs 2 pounds 15.1 ounces. Mabry is right behind him at 2 pounds 14.6 ounces. Alex started a medical trial today for treatment of MSSA staph colonization found in his nose. MSSA is a common strain that responds well to medication. He will get an ointment put in his nose & on his umbilical area 3 times a day for 5 days. The ointment is already used on adults and in other NICU's, just not at Cardinal Glennon NICU. We did consult with Alex's attending physician before consenting to participate in this study. Please pray Alex continues to improve.
Finally found out their birth-weights. Alex was 755 grams/ 1 pound 10.6 ounces and 33 1/2 cm/13 inches. Mabry was 650 grams/ 1 pound 6.9 ounces and 34 cm/ 13 1/2 inches.

NICU Day 41

 Mabry is still under the oxygen hood at 25 to 30% oxygen.  No other changes for her today.

A.J. is at 50% oxygen and had his IV come loose this morning.  Instead of a PICC line they are going to give him all his medicine orally.  A.J.'s Doctor will call me later today to confirm this plan.

He is weighing in at 2lb 15oz and his vent setting is at 60. 

Thank you to everyone

I just want to take a moment to say thank you.   I know many of you are reading this blog and are helping us in different ways.   Readers of the blog have prayed for our family - please know your prayers and welcomed and meaningful.  Your generosity has been helping us to pay unexpected expenses and we are forever grateful.   Feeling your support during this time makes us realize how fortunate we are to have you all in our lives.   On behalf of Alex and Mabry and our whole family - Thank you.

Alex day 40

Alex got caught sucking his thumb, then got shy.

Mabry day 40

Getting some chubby cheeks.

Day 40

   One year ago today, 11/12/13, we brought Taylor home from the NICU. She was 6 weeks early, at the time I thought that was the scariest time of my life. Little did I know, less than a year later things would be so much worse. There is a huge difference between a late term preemie 6 weeks early and a micro preemie, or 2 in our case, 16 weeks early. Taylor spent 14 days in NICU, she was what they call a feeder/grower. Babies born at 34 weeks like her, are just learning how to eat. Mabry & Alex are now on day 40. They have to learn virtually everything, including how to breathe. They won't even attempt to bottle feed them until about 32-33 weeks. Today I would be 30 weeks pregnant. So for now they are fed my pumped breastmilk through a feeding tube that goes in their mouth down to their stomach. Breastmilk is the only thing, that I can do to help them right now. I have been diligent on pumping every 3 hours, day & night, and we have quite the supply frozen now. In fact, I'm going to need to borrow some freezer space from family soon.

    Taylor's early arrival, in someways, did prepare me for this. Because my water broke with Taylor, I was terrified that was going to happen again. I found a vitamin regimen that was supposed to help strengthen the amniotic sacks.  It turned out Mabry's sack was all that was keeping her in when I went to the hospital that evening. Also Taylor was slightly low birth weight for her gestation. I was also scared of this, especially since it was twins. I followed the advice to gain 24 pounds by 24 weeks, as well as eating a high protein diet. Alex & Mabry were of good size for twins of their gestation which helps give them a fighting chance of survival. The NICU, in general, isn't as scary the second time around. I have read so much about preemies of all gestations over the last year, I already knew what we were going to be faced with and how difficult it would be.

Day 39

Alex is most likely getting a PICC line today, since he is going to be on the antibiotics for atleast another week.A PICC line is used in place of an IV. Due to the smallness of preemie veins, it is hard to keep an IV in for more than a couple of days. So, they use a PICC line when an IV is needed for an extended period. This goes from the vein to the artery and can stay in for weeks. This way they don't have to constantly change the IV, which results in a lot of pokes. They can go in different places, the arm, leg, foot, even the head. There are risks, as with anything, but the main risks are infection and blood clots. Please continue to pray for Alex.

Day 38

Mabry is still under her "SuperDome" oxygen hood. She is at 27% oxygen, no changes to her feedings. She will have blood gas tomorrow. Alex was been destating this morning. His oxygen has been up to 64%, currently at 57%. He had blood transfusion yesterday, & they are giving him lasiks today because they think he looks puffy. He has no labs today. His feedings are the same, but they are giving him more liquid protein for extra calories.

Care Conference Part 3 - Potential Outcomes

In part 3 of the Care Conference the medical team explained potential outcomes.   This was difficult to hear, but we praying that Alex and Mabry will not develop disabilities.  Documented outcomes for children in similar situations have included a wide range from healthy to mild, moderate, or severe disabilities.   Whatever happens we will do everything we can to give them the help and support that they might need.

The medical team explained to us that Alex and Mabry are at high risk for developmental issues later in life.

Cognitive and behavioral examples given were various degrees of ADHD, opposition defiant disorder, or intellectual disabilities.

Vision and Hearing Issues could range from minor issues to blindness or deafness.

Muscular issues could include problems developing balance or cerebral palsy.

Alex and Mabry will be followed up on at Cardinal Glennon for at least 2 years to monitor these potential issues.

In the meantime Mom and Dad will try to help them with Skin-to-Skin holding and talking to and reading to the babies.   The footprints program will arrange a family photo.

I want to take a moment to again thank everyone who has supported us in any way including cards, gifts, and prayers.   This was an extremely difficult post to publish, but with the support of all the great people in our life who are reading this blog, I know that Alex and Mabry will have the resources they need to succeed in life.

Care Conference - Part 2 - Alex

Today is part 2 of a 3 part series describing our Care Conference which discussed active problems and potential outcomes.

Alex remains very fragile.   Unlike his sister, his lungs were not stressed at time of delivery, therefore not as prepared for life outside the womb.   His lungs remain very sick, damaged with inflammation from an ongoing need to use a ventilator.

The main goal for Alex is to minimize his vent support and maximize nutrition and growth which will hopefully lead to lung growth.   This could be a very slow process, and his vent setting actually went higher today due to a high blood gas in the mid-70's.

We need to start seeing improvement each week and are hoping that the inhaled steroids that he has been taking will start giving him the boost he needs.   They will monitor him for pulmonary hypertension by way of x-rays and ECHO's

Tomorrow in Part 3 will we discuss the difficult subject of potential outcomes for Alex and Mabry.  

Thank you for your prayers and support.

Alex and Mabry pics

Mabry in her oxygen hood and Alex getting his first skin contact with Mom.

Care Conference Details -- Part 1 -- Mabry

Today we met with Alex and Mabry's doctors, several nurses, case manager, and footprints care coordinators.    We discussed active problems for Alex and Mabry and reviewed the goals for both of them.

Mabry -  She was infected at the time of her birth, and was under stress in utero which caused premature labor.   This brought her out early (and she brought her brother out with her) but the stress of the infection allowed her lungs to develop faster over the last few days/hours.   This advanced development partially explains why she is so far ahead of her brother, but may or may not cause her long term issues because it's obviously not good for a child to have an infection at 24 weeks gestational age.

Mabry will need extensive plastic surgery to repair her septum.  We saw her today without a cpap and she is a beautiful baby, but her septum is basically gone.   The risk to this surgery is putting a young child under anesthesia, but we will go with the doctors recommendations when the time comes.  I hope to delay her first surgery to occur around age 2.   In the meantime her Mom and I will get ready to explain this over and over to people who look at her and ask whats wrong with her nose.   One day when she asks why she needs surgery I hope to tell her that the reason there is a problem with her nose is the same reason that she is able to breathe.

Both children are still at risk for some negative outcomes (more on that coming later) but for now lets review some positives for Mabry.   She is tolerating feedings well, has good weight gain, and had a normal head ultra sound.  

  Later this weekend I will examine some of the potential outcomes for both children in depth and give a detailed update on Alex.  Thanks to everyone for their support and prayers.

Care Conference Today

We will meet will all the Doctors this afternoon in depth.   We will post details later this evening.    Thanks to everyone for the support.

NICU Day 34

Doctors have not made rounds yet today. Alex is still the same on his ventilator. His blood gas was a little better than yesterday (good), but probably because his ventilator settings were bumped up yesterday (bad). They are going to do a test this evening to see if the antibiotics they are giving him are at a therapeutic level. Big change for Mabry today. They are changing her from nasal cannula to oxygen hood, to prevent more damage to her septum. An oxygen hood is used for babies who can breathe on their own but still need extra oxygen. A hood is a plastic dome or box with warm, moist oxygen inside. The hood is placed over the baby's head. They will have to see how well she tolerates this. I googled it, it looks like a glass bubble they fit over the babies head.

Day 33

No changes for either baby. Alex is ventilator settings are about the same as yesterday. He is still on inhaled steroids, antibiotics, & anti fungal medication. They are giving him lasiks again to get rid of extra fluid. Mabry is still coasting along. Her nurse said she is doing good, the only issue we have had with her is her nose. Finally after a month, I got to hold her. Maybe next time I will get to hold Alex. We meet Friday with Dr.'s and staff for care conference.

An open letter to my Son

Alex,

My hope for this letter is that you will someday be able to read it.

You were born at 24 weeks.  Most babies are born around 40 weeks so you and your sister didn't get the same start in life that others are afforded.   You may be wondering, why did this happen?  There was nothing your Mom did wrong, she did everything right.

What I can tell you is that your Mom and I are getting you the best care possible.  Doctors and Nurses are working with you every day to help you breathe on your own.   Why isn’t it working?  We don’t know that either, but I can tell you that it’s not your fault.  You have already shown us the strength to handle more adversity than some people encounter in a lifetime.

If our love would heal your lungs then you would be healthy enough to run a marathon.  Please know your parents love you and will do everything we can to give you and your sisters the best life possible.

You can’t see us, but we are by your side.  You may not understand us, but we are telling you that you are loved.   You are suffering, but you are being lifted up in prayer and God has a plan for your life.   You are persevering, and we are proud.

Love,

Dad

NICU Day 32

Today did not bring good news- adding to his lack of progress Alex has likely developed a Bronchial Infection.  A culture taken from his throat showed a high count of white blood cells (to try and fight an infection) so they are moving aggressively to fight it.  

Alex will receive antibiotics and anti fungal medication for the next 7 to 10 days.    Please pray that Alex can avoid pneumonia and simultaneously make progress on getting off the ventilator. 

No improvement for Alex - please pray for him

Alex is not showing any improvement after his first round of steroid treatments.   His vent continues to push 50 breaths per minute into him.    This is very hard on a young persons lungs and other organs.  He was diagnosed with cronic lung disease several weeks ago and that diagnosis gets worse each day he is on the ventilator.     

We have the utmost respect for the medical team at CG, which makes it even more difficult to see the lack of progress.   They are doing everything possible to help him, and giving him more steroids is a great idea, but I have no idea what will happen if this doesn't work.   In the meantime I am trusting in God's plan for our family.  

NICU day 31 - Praying for improvement

Alex is still on the ventilator at a rate of 50.   This is a major concern after 31 days that he is not making progress on the ventilator and I am concerned about the long term issues that this will cause for him.   Each passing minute 50 breaths are pushed into him, causing scarring on his lungs.  

The medical staff is outstanding, but they do not know why he isn't improving.   I am hoping for some kind of answer today when results of his lung secretion labs are returned.   In the meantime please pray for this young man and his future.

1pm Update- The lung secretion test came back negative for infection so they are starting him on a round of inhaled steroids to hopefully boost his lungs.

Mabry is staying the course - weighing in at 2lbs 5oz

Day 30 pics

Nicu day 30

Mom and dad are both visiting today!   

Mabry is doing a good job gaining weight. Mom got to change her diaper.

The medical staff is stumped as to why they cannot wean Alex of his vent.   He is eating well and growing but it's very important to get him off the vent as soon as possible.  Tests for infection have came back negative and we are waiting to receive the results of the lung secretions (should be Monday).   

Nicu day 29

Mabry no changes today, but she is up to 1kilo in weight!

Alex's Blood gas moved back into the 50's due to yesterday's vent settings being increased.   They are trying to figure out why he is not improving enough to get weaned off the ventilator so they will be suctioning secretions from his lungs later today and will test them to see if there is anything growing on his lungs that would prevent improvement.   Results should be in on Monday.