29 Weeks and running smoothly!

Yesterday we returned to STL Children's Hospital for a full day of appointments. It had been 8 weeks since they last saw us (I negotiated 8 weeks instead of the typical 4 that they routinely schedule, more about this later). It was again exhausting, however it was thankfully not near as intense as the first set of appointments. I think we may be past the fear and "shock and awe" of the diagnosis and have moved into a preparation and detail stage. 

Here is how the day went and updates to Baby P's condition:

1. ECHO and meeting with our Pediatric Cardiologist:

      This was the most anticipated part of our day since the last time we had an ECHO was during our second opinion at Cardinal Glennon where they mentioned 2 additional defects and therefore only one surgical option. We are extremely happy to report that per the latest ECHO those two defects were not found accurate. The right ventricle is a bit smaller relative to the left, however it is not prohibitive and is not near small enough to be considered hypoplastic. Additionally, the tricuspid valve does not appear to straddle the VSD...it is actually attached to the right side as well as the tip of the VSD which still allows us the possibility to close the hole and create a normal 4 chambered heart. Of course this all still depends on how far to the right the aorta is and if they believe can move it to the left ventricle and give baby a functional pulmonary valve BUT this is great news as it still leaves the best surgical option with the best long term prognosis for our little guy on the table! They did stress that no decision on the corrective surgery will be made for several months but hey I LOVE options and I am thrilled to have more than one!

2. Tour of NICU and Labor & Delivery Unit:

       This was a pretty emotionally wrenching experience for me...going from a warm and intimate homebirth experience to actually seeing the bleak and sterile rooms and hearing about who will be present and what will take place. I will be happy to not see those places again until we have to but it was definitely a necessary part of preparing for what is to come. I highly recommend to anyone who will be experiencing the NICU environment, please do a tour...it helps to desensitize you for when the day comes that your baby is the one hooked up to all the machines and you learn a ton about what to expect. For example, during our tour our care coordinator casually said "Oh and do ask to hold your baby often"...Pardon me? ASK to hold my child, you cannot be serious...we also learned that despite them telling us that siblings are allowed, they forgot to mention that they have to be two years old, so Evan will not be allowed in the NICU. This means I will have to leave one son, to spend any time with the other....not what I was planning on at all, especially when I will be feeding him on demand. There is also nowhere to room in and sleep (and that is if you are lucky enough to snag a room instead of the community NICU room where babies line the walls, it all depends on when he is born and how full they are). I can already anticipate the stay in NICU being the hardest part for me. Simply because he will likely look and be 100% healthy otherwise but due to the nature of his condition and potential complications with prostaglandin, they are overly careful and monitor every little thing so he will have to be hooked up to several monitors and get several routine tests (like blood draws, pulse ox, etc.) just as a precaution. 

3. Meeting with our assigned Social Worker

        Not too much exciting here. Basically we were given resources for a wide range of accommodations during our stay, support groups to contact, information websites, etc. I am sure this info will be helpful but being the research crazy I am, I was pretty ahead of the game on this.

4. Q&A with one of the two potential Cardio-thoracic Surgeons

         This was helpful, though tough to prepare for. I mean, what do you ask the person who could potentially be performing surgery on your little baby? Here is some of what we asked, hope it helps someone in the same boat....

      -Is there anything you are looking out for are are concerned with that differs from the pediatric cardiologist?

      - Do you perform the surgery alone or in teams? Are students present? If so, do they perform any of the procedure?

      - How many children have you seen with this defect? Any specific concerns?

      - If surgery begins and you find something unexpected, what happens from there?

      - Are we in the right place? If this was your child...would you be looking at other options?

      - Are you religious? Do you pray for your patients?

It was also helpful in that he ended up being kind of chatty and brought up things like potential medications and blood transfusions...things that we had not heard before but certainly have questions about now!  

5. Q&A with Newborn Medicine/NICU Director

      This was also very helpful as they are the team that will transport Baby P to NICU, get him on the prostaglandin drip, monitor vitals, and continue his daily care until his first surgery 5-7 days later when CICU will take over. We went over which routine newborn procedures we were okay with and which we would be opting out of for Baby P as well as touched on what to expect on a daily basis with heart babies as far as routine monitoring and tests, possible complications, etc. Its all circumstantial so I didnt get too wrapped up in the details but it is clear that I am going to have to question EVERY SINGLE line and procedure...I certainly do not want to be difficult but I have learned in my experience thus far that a lot is negotiable, you just have to speak up! 

6. Ultrasound to check growth

      Hallelujah! Everything looked great here! From their measurements Baby P is measuring right on for due date and is weighing in at just over 3 pounds. Typically heart babies tend to be on the small side but right now he is in the 70th percentile for his gestation. Could he give Evan a run for his money on birth weight?! Let's hope so!

7. Prenatal OB Appointment with Maternal Fetal Manager

        Everything was good here too! Urine clean, check! Weight, 132 (+18lbs pre-pregnancy), Blood pressure 114/60...we discussed our birth plans (will post more on that later) and also came up with a plan for care from here. I declined the glucose test and bought myself 3 weeks to research the dTAP vaccine they routinely do...I forgot they typically recommend it at 28 weeks so I was not prepared to decide right there. I had one with Evan just 18 months ago and the CDC's recommendation for adults is to have one every 10 years, so I question whether I really need to have it again as well as how safe it is for me to have it that close together. They didn't answer these questions well enough for me, and I am finding very little data since the recommendation to receive one with each pregnancy is fairly recent. 

As for plan of care, because the baby is doing so well they are allowing me another 6 weeks until our next ultrasound and ECHO so long as I remain healthy/feeling well and agree to see a regular OB here in Columbia to take my weight, Blood pressure, urine, etc in 3 weeks. After that, appointments will likely be weekly but because we successfully negotiated letting labor happen naturally when the baby is ready, we will be living in St. Louis full time at 38 weeks in order to avoid the routinely scheduled induction so no problemo....

Now onto continuing prayer and preparations!!

So much to do....

As of last Friday we are officially in the third trimester and this Thursday we have our first lineup of appointments at St. Louis Children's Hospital since about 8 weeks ago...man has time flown by! I know a lot of parents of heart babies typically look forward to these appointments so they can see how baby is doing and monitor growth and progress, but its not really my cup of tea. While I am certainly excited to see our little guy and learn about any changes, I also find these appointments extremely exhausting and adds to my anxiety as we approach his birth. It is certainly a blessing for us to have found out about Baby P's heart challenges beforehand, especially since we were planning another home birth. It is also nice to have the ability to plan ahead as much as possible. However, it is in many, many other ways a curse. Ignorance certainly was bliss.

So, what have we been doing with the last 8 weeks?

1. Growing our faith--We absolutely could not get through this without God, our growing confidence in Him, and prayer. We have been praying, sometimes at odd times or places, sometimes without even knowing what to pray for...just praying like crazy for a miracle. There are so many people across the country that are also praying for Baby P with us. This process we are working through with our new son has gone beyond what we can handle at times and I'm not sure we would be making it through so well without prayer from others. 

2. Spending lots of time with Evan--He has grown so much over the last couple months. He has developed preferences, learns a couple new words every week, LOVES reading, and continues to be a light in our lives. I am so thankful Baby P will have him as a big brother!

3. Researching housing options for our stay in St. Louis--Our main priorities are proximity to the hospital and having a place of stability for Evan. Not knowing exactly when baby will arrive leaves us needing to be in St. Louis full time by 38 weeks and because of the nature of heart defects, there is no way to tell how long we can anticipate needing to stay.

4. Staying as healthy as possible--yoga, walks, stretching, drinking tons of water, building our immunity, and sanitizing the house. I also began a morning ritual that includes thinking of something positive that has come from this experience...it helps get the day started off on the right foot!

5. Stocking up on everything! I have been couponing like a crazy woman on diapers, wipes, toiletries, non-perishable foods,...we will basically be on lockdown once he comes home to protect him from getting any kind of illness. Even if he gets a common cold it could mean several weeks in a hospital. And it just so happens that the period of his highest vulnerability falls in line with the peak of flu season, I am not taking any chances.

6. Finishing big house projects--Finishing our basement, remodeling the backyard landscaping, and possibly partially remodeling the kitchen are all being scheduled for completion BEFORE baby arrives. They most certainly will not be priority afterwards :)

7. Lining up possible care options for our house, dog, and occasionally Evan...I feel like I am already forgetting things!

8. Breaking out the baby gear from storage--It wasn't stored away for long was it?

9.  Enjoying our numbered days as a family of 3--even though I already consider us a family of 4, we will likely not have the freedom to be quite as spontaneous as we are with Evan these days.

10. Planning a short weekend away as a couple--It will likely be a long while before we feel comfortable leaving baby P anywhere. It took me several months before I spent even an hour away from Evan and well over 8 months before we ever even considered hiring a babysitter, which we have done only a total of 4 times since he has been born! I thought it would be easier to "let go" the second time around, but in this case it most definitely will NOT be.

And last but not least, we have been preparing for this next round of appointments. They have us scheduled for the works...another ECHO and pediatric cardiologist appointment, another ultrasound, a consultation with one of the two possible pediatric cardiothoracic surgeons that would perform the open heart surgery, a regular high risk OB appointment, meeting our assigned social worker, and also meeting with one of the NICU docs to ask questions and possibly tour the unit and acclimate ourselves to our "new normal". Its going to be a looooooooong day, better get some shut eye.