3 Weeks Old!!

Autumn is 3 weeks old. 

It's incredible to reflect on the past three weeks - Her birth... our 9 days in the NICU on PGE waiting for surgery and hoping Andre would still be here with us for surgery...the news on Wednesday night that surgery would be the next morning at 7:00 AM... praying with Pastor Karyn then walking Autumn up for her first big surgery... the long day waiting for updates for her 7 hour surgery... the recovery in CVICU with 10 different cords attached to our little baby girl... then the process of removing one cord by one... THEN IT WAS DOWN TO THE 15th FLOOR AND WE WERE IN CHARGE.

Day 1 After Surgery - It's still painful for me to see her with all these cords.

From the very beginning Andre dove in at the NICU... helping swaddle her, feed her, burp her, change her diaper, take her temperature and participate as much as we could in her care. The nurses in the NICU and CVICU were so helpful and willing to let us navigate the cords to hold her and take care of her. They gave us tips for how to best swaddle her - each nurse had a slightly different method and opinion about the best way to soothe her. Andre and I learned so much from them... we even discovered a potential culprit to Andre's sugar addiction... giving newborns sucrose water is a method NICU nurses use to calm down newborns. As Andre spent his first week in the NICU, we think he must have gotten more than his fair share of sugar water... I guess Autumn will share his love of chocolate.

Andre is an expert burper... 

And thanks to Occupational Therapy... Andre learned how to help her pace herself and finish her bottles

Last Monday they transferred us to the step down unit on the 15th floor. It was more or less a hotel room with nurses who came check on Miss Autumn every 3-4 hours. It felt so strange to be taking care of her almost full-time... for 15 days we had nurses staying with her all night. All of a sudden Andre and I were full time parents for a few days (with some great baby-sitters of course - Mom was always willing to give us some respite and do some Nana baby-sitting). Instead of sitting up and watching 'How I Met Your Mother' with Lisa to pump at 3:00 AM, I had to pump then feed Autumn. Andre and I spent the night with Autumn and instead of just waking up to her crying, we also woke up to the nurses checking her vitals during the night - not much sleep during those days...

Nana getting some good Autumn time.

To be released to the apartment, Autumn needed to eat well and gain weight. She relearned how to eat quickly and was soon eating 36 mL, then 50 mL then 55mL and even more because we began to request 70 mL as our baby girl was continuing to cue after she finished her bottle. She still wasn't gaining enough weight - about 90% of cardiac babies struggle to gain weight because of the energy needed to heal. We had to fortify my breast milk with formula (something I would rather not have done... but it's another detour moment...  best to help Autumn gain weight even though I am not a big fan of introducing synthetic formula into her diet). 

We said good-bye to Andre - he has a month long field exercise - and then hello to Christopher - first uncle to visit Autumn. Autumn has been listening to Andre's recorded voice since he's been gone. She loves hearing her dad sing Autumn Leaves, Summertime and Hum to her and looks around for him when she hears his voice. We can't wait to be together again in El Paso. It's definitely been the most difficult time to be apart since we've been married and we miss him every day.

First clothes!

Andre is a natural... he's so calm and gentle with her.

Chris came at a perfect time - his engineer brain was ready to help set up the stroller/car-seat (thank you Abuelo Clayburn) and drive Autumn back to the apartment. We were released on Friday as Autumn was gaining enough weight for the doctors to feel comfortable. It felt so strange pushing Autumn out of the hospital with no cords or monitors. Chris drove us safely to the apartment and we began our next journey with Autumn... about 3 weeks later than most infants... but home to the Houston apartment for the first time. Chris was wonderful - changing diapers, feeding Autumn in the middle of the night, and holding her to keep her warm. 

Getting ready to leave the hospital.

Chris meets Autumn...

And he's already making faces to make fun of her...

All in all - it feels like a rush... there are so many families who stay in the NICU for months and months but we transitioned out in 3 weeks. So many changes in less than 21 days and we are so thankful for the professionalism and compassion of the staff. Our baby girl has a chance that many children do not receive. This is just our first taste of surgery and recovery as Autumn will be needing 3-4 more updates in her life, but we could not feel more blessed and supported in this journey. 

Our tiny baby... only 5 lbs 4 oz... but she's growing!

No cords!!!

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