Learning More

This week featured our third visit to St. Louis Barnes-Jewish Hospital and the Children’s Hospital.  Below is a recap of how our day went. (note – items in pink are hyperlinks to more information.)

Ultrasound

We started the day with an ultrasound to check Reiss’ growth status.  She is growing on track!  Roy actually guessed the weight spot on – 5 pounds, 5 ounces.  She is now in the 51st percentile, which is just a little ahead of schedule.  Everything else looks fine.  There are no other defects.  She does have hair!  Papa Mark thinks it is red, while I think it is light brown.  After the ultrasound, we met with Dr. Rampersad to discuss the ultrasound and other questions we had.  This appointment went well, it was more informative than anything else regarding things that are allowed and not allowed during labor.

Surgeon and Newborn Medicine

We met with Dr. Boston, cardiac surgeon and Dr. Najaf, newborn medicine, in the Children’s Hospital to meet and talk about what we may see once Reiss is born. Dr. Boston talked about the actual surgeries which may or may not happen – this was before the fetal echo, however.  We’ll get more into the types of surgery later in the post.  Dr. Najaf talked about what we may see in the delivery room directly after delivery.  First off, there will be multiple teams of doctors there to take care of me and baby Reiss. Secondly, we will only have a small amount of time (30 minutes to an hour) to see her before she is taken to the neonatal intensive care unit (NICU).   Family and friends will be able to wait outside the delivery room in a designated area to see Reiss as she passes by on the way to the NICU.  They will stop for a little bit so pictures can be taken if desired.

NICU tour

After meeting with the doctors, we went on a small tour of the NICU.  It was hard to see all of the babies hooked up to monitors – some looked worse off than others.  There are two different types of rooms in the NICU.  One type is a private room for each baby and the other is an open room with multiple babies.  There is no way to reserve or get first dibs on either type of room.  It is first available at time of delivery.

CICU tour

We also looked at the cardiac intensive care unit (CICU).  Reiss will move to the CICI pre-op and post-op, and will end up back in the NICU before being released to go home.  I am not sure how long pre- or post-op lasts.

Olsen Family Garden

We had the chance to look at a roof top garden area on the 8th floor of the Children’s Hospital.  It looks like a great place to relax.

Fetal Echocardiogram

Reiss did her usual bob-n-weave, punch the wand-thing during the fetal echo.  It is difficult, according to the technicians, to get a good picture with a baby at 34 weeks without taking into account a wiggly baby. After the echo, Dr. Lee talked to us about what she saw.  Prior to this week’s visit, Reiss was diagnosed with tetralogy of Fallot, double-outlet right ventricle.  Part of the tetralogy diagnosis was that there was also pulmonary stenosis – a narrowing of the pulmonary artery.  However, Dr. Lee saw something different during this round of tests.  She believes that there is no longer a narrowing of the artery, but that the valve and artery are completely shut off.  This is called pulmonary atresia

There are three surgical options for tetralogy of fallot, double-outlet right ventricle with pulmonary atresia.

  1. Surgically placed stint:  With this option, Reiss would undergo open heart surgery 4-5 days after birth to place a stint from the Aorta to the Pulmonary Artery so that blood flow continues to flow in and out of the lungs, through the heart and to the rest of the body.  Because the oxygenated and non-oxygenated blood is mixing this whole time, Reiss may have a more blue-ish tint than most babies.  This would be a temporary “fix”.  Once Reiss is eating and growing well, maybe 1-2 weeks after surgery, we can go home.  We would then come back around 6 months later to fix the defect completely.  Fixing includes putting in a cadaver pulmonary artery and valve to replace the one that isn’t working.  Things to note:  cadaver arteries always fail and have to be replaced as the child grows, since it does not grow with them.  Reiss will have to have a new one approximately every 10 years.  Additionally, valves fail and will have to be replaced with a catheter type procedure during life.
  2. Catheter:  This option is a more modern option.  Instead of open heart surgery to place a stint, the doctor puts a line in through the baby’s belly-button and with the use of “moving x-ray” she places a stint in the ductus arteriosis.  The ductus arteriosis is a valve that is in place in the womb and naturally closes in hours/days after birth as the baby starts to adjust to life outside of the womb.  The stint would keep this from closing.  This would be a temporary “fix” just like #1.
  3. Fix the problem:  If Reiss’ heart is large enough, the doctor could go ahead with the open heart surgery,  patch the ventricular septal defect and put the replacement pulmonary artery in place instead of waiting until 6 months.

All three of these options are dependent upon Reiss’ anatomy and physiology at the time of birth.  She will have many tests after birth, including multiple echos to confirm their findings.  These echos will be more accurate since they are not also trying to look through the fluid and layers of my abdomen.

The doctors will know which way they will need to go within 2 days after birth.  It looks like our total stay in St. Louis will be around 1 month – instead of 1-2 like previously thought. 

The doctors were also very optimistic about Reiss’ future.  Yes, she will have multiple surgeries throughout her lifetime, but she should otherwise be a healthy, happy little girl and be able to do the things that all parents dream for their childredn – play on the playground, go to school, play (some) sports, go to college, get married, have children, etc.

Here are examples of athletes who have tetralogy of fallot or something similar…

Labor and Delivery Tour

We also went on a tour of L&D unit.  There was actually a lady in labor there yelling a bit. Eeek!

Social Worker

A social worker was made available for us to talk to concerning lodging and financial aid.  It looks like the majority of the resources will not be available until after Reiss is born.  At least now we know options and can semi-prepare in terms of who to contact once Reiss is here.  Below are some examples of resources we are looking into

  • Ronald McDonald House
  • Haven House
  • Barnes Lodge
  • Children’s Miracle Network
  • American Heart Association

There are others, but I do not have my sheet in front of me at this time.

Induction Date

We will not know an induction date until next week (the week of September 3rd).  The hospital does not allow induction dates to be set until one month out, which is the reason for the delay.  We do know that we will try to schedule this at 39 weeks, which will be some time between October 2nd and 5th.  Please note – this is an induction to deliver, not a scheduled c-section.

Other Information

  • I will continue to see my OB here in town.  Next week starts my weekly visits there
  • We also continue to do “non-stress” tests each week. So far so good there! 
  • If at any point next month I am dialated to a 3-4, I will be heading to St. Louis
  • I will post information later on visitors
  • I will not have to go back up to St. Louis between now and my induction date
  • We will have one more growth ultrasound in Springfield in 3-4 weeks

7 thoughts on “Learning More

  1. Sara, how wonderful of you to post this blog. So much went on yesterday. It was hard to keep it all straight. Thank you.

  2. Love it… Sara Jo is keeping me posted on your appointments and precious baby Reiss. She will be a fighter from day one! I have faith and am praying for you guys, you’re in my thoughts every day now! Looking forward to seeing your journey, and be strong – God has got this! BTW – you’re going to make a great mama!! (Sara obviously speaks highly of you)! 🙂

  3. Thank you for keeping us updated with all of this information. I am blown away by the strength that you and Roy have shown through this whole process. You and Reiss will be in my thoughts and prayers. Please continue to keep me updated with little Reiss’s progress. She is a little fighter already. I love the bob-and-weave punch th eand thing.

  4. I just wanted to tell you thank you for making this blog about Reiss and everything that is going on, it really helps everyone to feel closer and to stay up to date on what is going on. You and Roy have been so strong through all of this and Reiss will be strong as well. I already feel close to Reiss and can’t wait to meet her, I will def spoil her! We all just have to continue that God will continue to heal her and help her to be big and strong 🙂

  5. may god wrap his arms around everyone involved. know that you all are thought of everyday. Sarah and Roy if there is anything we can do let us know. god bless

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