Tuesday, September 20, 2016

It so difficult to believe that is has been only 2 weeks since Autumn made her entrance into this world!  It has been a whirlwind of activities and at the same time, it is amazing  that four days after having open heart surgery, Autumn is doing REALLLY well and is on the way to the Highway to recovery!  Since Autumn was doing so well and was very stable, late Sunday night she was moved from the CICU to a step down unit.  This room is nice and big and has a pull out couch for Megan and Andre to sleep during the night.

I am so grateful that Andre was able to be her for the surgery.  Megan and Andre have a very strong faith and are such a support for each other.  Andre will be leaving early Wednesday morning to join the troops in AZ.  Even in two days, it seems as though Autumn is well on her way to becoming a daddy’s girl.  His gentle voice and soothing lullabies calm her quickly.  He is a pro at changing her diaper while she is testing all four heart valves, screaming at full volume.  

Megan is radiant as a new mother and has that ability to calm Autumn down quickly.  She is eating well from a bottle.  For the first day, the staff was supplementing her feeds by a feeding tube as weight gain for her is essential. She is doing really well and hopefully; the feeding tube will be removed very soon.  The PT visited to provide support with feeding and very soon will begin to assist Autumn to begin breast feeding.

Megan and Andre have been able to spend the past few days bonding with their beautiful baby girl without family and friends interrupting family time.  I had my first official Nana babysitting job last night so Andre and Megan could go out to dinner.  Autumn was really good.  We read stories, sang songs, and figured out how to solve the world’s problems.  She LOVES to be held and it is SO MUCH easier with less tubes and wires!!

We are awaiting details of her discharge from the hospital as well as our departure from Houston.  Words will never be able to express our gratitude for the many blessings we have received on this journey!  Thanks be to God!!

She finished her 36 mL bottle and is ready to start with the 50 mL tomorrow

We can hold her and walk around now!!! No cords connected to machines.

Story time with Nana while Mom and Dad went out for crepes.

Quick Post-Surgery Updates

Autumn is recovering well from surgery. Thursday was a long day - about 7 hours of surgery. Andre, mom and I were able to sit with Autumn and hold her in the NICO before the team came downstairs to pick her up. Pastor Karyn from St. Paul's Methodist in Houston came by around 6:30 AM to sit with us and pray for Autumn on her way up to surgery. 

We felt worried but also at peace. We were hoping to get to surgery before Andre has to return to El Paso for his field exercise in Yuma. Andre and I walked up with the anesthesiologist team (incredibly kind and warm team). The lead anesthesiologist told us "there's no crying in anesthesiology" and somehow our usually squeaky quick to let everyone know when she's not happy Autumn was calm on her whole way up to the eighteenth floor. Andre and I gave her a kiss and then went to wait on the floor below. 

It was a day of waiting... every few hours the nurse practitioner came to give us updates. When she was fully under... when she was on bipass... how the surgery went... even what type of music the surgeon listened to (Dixie Chicks)... and after 7 hours Autumn was taken to the CVICU for recovery. 

Dr. McKenzie fully closed her VSD with her own heart tissue - so that will most likely never need to be fixed again. He also replaced her pulmonary valve which means her heart will function like a normal heart and blood will pump like any other baby. This valve will not last for more than two or three years because it won't grow with her, but we will be able to return to get the valve replaced again... a process that Autumn will probably need to repeat at least 3 - 4 times during her life. 

It's Sunday now and she's doing really well. She's had 6 of her 9 lines removed... meaning she looks more like our baby instead of a robot baby hooked up to many tubes. She is off the ventilator and started to eat yesterday. She remembers how to suck and was able to finish all of her practice bottle and her 26 mL bottle but struggled a bit with her 35mL during the night. She's got a little tube down her nose to supply her with any food she is not able to finish through the bottle. 

We were able to start holding her yesterday and had about 4 hours of time when she was awake and looking at us. We got some good bonding time and she only had eyes for Andre for a good period of time. She liked touching his face and listening to him while he sang to her and told her stories. It was great to not have to worry every time she cried about her heart and lungs not being able to handle the strain. 

Today and tomorrow we will still be in the CVICU, but looking to step down to a lower level early next week and then maybe take her back to our apartment in Houston at the end of the week or the beginning of the following week depending on how well she is eating and gaining wait. 

We are feeling very thankful for the peace that God gave us during the surgery and the success of the procedure. Thank you for the love and prayers and we will continue to update as we go along. 

We had a rough day today.  There were several emergency surgeries last night so there are no beds available in the CICU so the Cardio Team said the surgery would be Monday or Tuesday.  Since Andre's battallian is leaving on Saturday for Arizona, he will not be able to be here next week. Needless to say, Megan was upset and Autumn felt her anxiety and screamed most of the morning causing her oxygen levels to go down. Therefore, oxygen is now required.   After both my girls settled down, our nurse, who usually works in the CICU took us on a tour of the CICU to show us all the wires and tubes and busyness  of the unit.  She really took us under her wing and helped us prepare for the next part of our journey.   A sense of calmness was beginning to return to us when Meg received a phone call from one of the pastors at the church we have been attending.  She was very supportive and had words of comfort for Megs. She will be stopping by tomorrow for prayer.  We finally persuaded Megan to take a nap and afterwards  a walk through the park with Andre.  Then the surgeon walked in and told Andre

Surgery will be TOMORROW @ 7am!! 

What a whirlwind day!  Yet through it all, we continue to feel God's arms around us! Brian is on his way back to Houston tomorrow as he is a calm, stabilizing force for all of us. We are grateful for all the loving and caring staff and the hospital and are ready to have little Autumn's surgery so she can start the healing process.  I will keep you updated!

Thanks for all the support and prayers!

The Story

It's been a week. Here it is. 

THE STORY

After a good night’s sleep in anticipation for a long, drawn out induction and labor process, we received a call from the hospital at around 0800 that it was time to come in and get things started.  Of course, Megan wanted to get in one last good walk in prior to her hospital confinement, (and this is even after getting in 17,000 steps the day prior) so we parked in a nearby neighborhood and enjoyed a pleasant walk to the hospital.

ONE WEEK OLD

Thanks for all the cards, prayers and support you are giving to our family! Autumn is doing great. She looks so perfect it is hard to believe she has a heart issue. She is eating really well and lets the world know when she is hungry! The genetic team has done all kinds of testing and ruled out any kind of chromosomal issues��. Since she is so stable on the medication, she is not an emergency case and other newborns with life threatening issues take precedent over her surgery. 
Her case was presented at grand rounds yesterday. We love the team approach at Texas Children's. They have decided it is best to do the full repair on Autumn's heart as a stint is a temporary solution and feel the repair will be much safer for them to return to El Paso. 
Megan and Andre explained to the surgeon that Andre will be leaving for the field to command his battalion on Friday and will be gone for at least 30 days. It would be a great support for Megan to have him here during the 8 hour surgery. The team is looking at the OR schedule to see if the procedure can be completed this week while Andre is here. 
While we wait, I am helping spoil her rotten by holding her whenever possible. She is growing and opening her eyes more and more every day. 
I am truly amazed at the strength of Megan. She is a strong, faithful woman and a great mommy! Andre is such a calm, strong force that he keeps everything balance. Autumn has wonderful parents!
Thanks for your continued prayers and we will update everyone when we find out the surgery date

Autumn is Here!!!

This is a quick update as we have been consumed with grandparents' visits and time in the NICU. We have been spending between 12 - 15 hours in the NICU with our beautiful baby girl. We have adjusted into a bit more of a balanced schedule... Autumn is a big fan of being held and cuddled so we try to have her day filled with people holding her and singing to her while she waits for her surgery. 

The birth was about 7 hours. I was able to have her naturally - even though the Cervidil intervention brought on some pretty intense contractions. Andre and our Doula - Robin - were absolutely wonderful supports and I could not have done it without them. She got an APGAR of 1 then 8 and pinked up really well after her first 5 minutes of life. The docs put her on me right when she was born - just for a few seconds then for about 30 seconds after all her checks. For all the interventions and hospital procedures, I am happy with the birth that I was able to give Autumn. I would not choose to be in the hospital again, but I am thankful that she came quickly and safely into the world. 

She traveled with mom down to the NICU for all her first echocardiograms and ultrasounds and implementation of her Pic Line to deliver the prostaglandins that keep her ductus open. 

Andre and I got to visit her about 5 hours after my labor. I walked to the other hospital pushing my wheelchair like a walker and feeling pretty good considering that I had just delivered a baby. We got to hold her and talk to her before we went back for our 2 hours of sleep.... sleep has definitely been a struggle as we've been spending all the time we can with Autumn and I've been pumping every three hours - including throughout the night. 

At the moment, Autumn is very stable. Her condition was confirmed and she has Tetrology of Fallot with the hole between her two ventricles and the pulmonary valve that is not working. All of the other potential complications seem to not be present and the cardiologist is looking to do the full repair within the next week. 

We love her so much and have been so thankful to have this time get to know her. Can't believe it's already been 6 days. 

Upcoming posts 

- Andre's perspective of the birth

- Mom will also be updating Autumn's treatment

Weekend update on Monday Night

Week 5 - Hospital/Birth Updates

Autumn is on her way!!!

We are at 39 weeks this week. Andre has arrived from El Paso and will be here for the next 14 days. Even though induction is not part of my preferences for natural/gentle/unmedicated birth, the hospital team is worried about letting Autumn go too far past her due date. I have appreciated their flexibility to let me go past 39 weeks - their usual preference to induce - but they are starting to put more pressure on us to have her induced.

Some reasons for induction:
- They have diagnosed Autumn with Intrauterine Growth Restriction (IUGR) because of her small size - less than 5% on the ultrasounds. She has consistently been small from about 20 weeks and symmetrically small so it most likely is not because of a deficiency of nutrients. More likely she is just small. 
- Risk of infant stress/risk to her life rises after 40 weeks.
- Andre will be guaranteed to be here if we induce... and also present for her surgery.

Reasons I hesitate:
- I want her to be able to grow as much as she can before she's born... the bigger she is, the bigger the valve can be in the surgery.
- She's moving well and passing all of her Biophysical tests.
- Most induction methods can snowball into more and more interventions and I really believe in the idea of doing this as naturally and gently as possible.

With all the reasons to induce and reasons I hesitate, we have decided to go forward with our induction appointment on Tuesday. Until then, I am doing everything I can to naturally induce - from walking briskly to eating spicy food to Acupuncture and Induction Massage. With Lisa's help and lots of reading, we've got a few things in place to help get ready for the induction or hopefully induce me into labor before the 6th. 

If I do need to go to the hospital for induction, the plan is to use the least invasive/medicated method possible. We are still looking into the cost/benefit of the preferred methods of our OB... Cervidil vs Foley Catheter. I'm practicing relaxing through this process and being open to the changes in what my picture for her birth would be. In the end, I want to make sure that I've done everything I can to make sure she comes into the world healthily so she can be strong and resilient for her first few weeks. 

At the moment we are enjoying our last few days before we meet Autumn. It's a little unreal to think that we will be meeting her within the next week. 

Week 4 - Hospital/Birth Updates

Cord Blood Banking
We received some excellent news last week. There's a new trend in baby "insurance" called cord blood banking. It was an option that Andre and I were not even considering originally because we wanted to delay the cord clamping and have skin to skin time with Autumn as she adjusted to transitioning out into the world. With the changes and need for immediate intervention, we have started to consider different options.

Cord blood banking is the extraction of stem cells and tissue from the umbilical cord when the baby is born. It is still relatively new science and shows potential for great medical advances in the future. At the moment it seems to have been successfully used for a stem-cell transplant with diseases like leukemia and lymphoma with lots of potential for other treatments. Like most technology for future medical treatments, there is no guarantee that the stem cells will be able to be used for treatment. 

After researching a bit, we found that the cord blood has been used in some trial studies with another congenital heart disease - hypoplastic left heart syndrome. There are a few articles for potential studies with valve replacement with cord blood stem cells. Click here if you're interested in reading about them. The summary of this article says 

"In the future, babies with heart defects may receive new heart valves created from cells in the blood from their umbilical cords, saved at birth. These valves could grow and change shape as a child develops, avoiding the need for repeat surgeries to replace outgrown valves from animal or human donor tissue or artificial valves."

This could be a game changer for Autumn's treatments in her lifetime. She could eventually have a valve made from her own stem cells that would grow with her and continue to live without degrading. Because it's all uncertain science, Andre and I were evaluating and researching to see if it made sense to invest in something so expensive especially if there's only a potential that it will be able to be used for her. 

Fortunately, we did not have to make the decision to invest or not because our OB referred us to a Newborn Possibilities Program through Cord Blood Registry. They have a program specifically for children with serious medical conditions. The hope is that research in the next few years will help these children to use the stem cells in new medical procedures. With Tetrology of Fallot and the potential for valve construction - Autumn qualified for the program which means they will store her blood and tissue for 5 years for free. Great news for us and for Autumn's future treatments.

Here's our pack ready to go for the big day.

Week 4 - Hospital/Birth Updates

Cardiology Updates
Mom and I met with the cardiologists last week. As of now, they are still seeing the same condition (Tetrology of Fallot with the VSD and pulmonary stenosis - a hole between the left and right ventricle and a small valve connecting the heart to the lungs). However, the lead cardiologist is recommending a different pathway to surgery. 

Most babies with this condition receive a plastic - very temporary - shunt to send blood to the lungs... this lasts for about 5 months until they are bigger for a valve replacement surgery. Because we live in El Paso, he was concerned about the safety of this shunt. It is much more likely to move or have problems than a valve replacement and we are 13 hours from the Houston hospitals where she could come to have it fixed. 

He is recommending that we fix the valve right away.

Benefits with an immediate fix:
- She is likely to have blood flow going to the correct places because her heart will be functioning like a normal baby heart - less need for corrective action during the 5 month surgery
- She is likely to eat and grow better because her blood will be moving normally

Downside with an immediate fix:
- At the moment, all valve replacements (biological or plastic) have a timeline... they do not grow... they start to leak and degrade... Autumn's valve will - by nature of her size right now - be smaller than the valve they would replace at 5 months. This means that she's looking at a second surgery to replace this baby valve around 2 - 5 years instead of 5-7. 

We feel good about the reasons the cardiologists are looking into this immediate fix and plan to be open to their suggestions once she is born.

For the visual people, we are skipping the first step (The temporary shunt operation) and going to the complete repair with the VSD patch and a valve replacement.