34 week Update!

August 27, 2014: (Yes I am posting this over a week late!)

It had been 6 weeks since our last visit, so we were in for another full day of appointments...Even though these appointments are more frequent than I would like, I have to admit I was a bit curious of how he was doing at this point since we are getting so close!


1. Ultrasound:
Our first appointment of the day was an ultrasound to measure his growth, heart rate, and my fluid levels. His heart rate was still strong in the 150's and he weighed in right at 6 lbs which they were extremely happy to see since babies born with CHD's typically are small when born and continue to have growth and development challenges...Looks like Evan's brother is going to give him a run for his money on birth weight and we are thrilled that he is already surprising them!

2. OB:
Everything normal here. BP 96/60ish which is still on the low end of the scale, but completely normal for me. Weight 136lbs (+22lbs pre-pregnancy and officially over my weight gain of 19 lbs with Evan). We met with another OB in the practice that could possibly be there for delivery and we went over our birth plans in great detail to make sure we are all on the same page. I am hopeful we will avoid having a conversation about any issues while I am in the throes of labor...

3. Tour of CICU: 
In comparison to the NICU, I cannot wait to be in the CICU. It is much more inviting and family friendly...We will have our own room and assigned nurse, 3 people can be in the room at a time, the rooms are much more inviting and comfortable, and Evan can actually visit us for a few minutes and see his brother unlike in NICU...I know the first few days spent there after surgery will be some of the toughest of days but those small differences are going to be sooooo welcome by that time!

4. ECHO: 
Diagnosis remains the same. They did get a better look at his PDA and because it appears to have formed a bit curly rather than straight it is highly likely that he will be receiving the shunt as opposed to the stent...so unless major changes occur between now and then, or valves miraculously open or close,  we are fully expecting open heart surgery to place the shunt within the first few days of life. Deep breath.

5. Consult with Neonatologist and Charge Nurse: 
This was an unexpected but very welcomed meeting. The neonatologist we met with actually typed out a very detailed report of our preferences as well as what we can expect in those first few days after he is born. She detailed everything from birth and post birth expectations, transport details, blood draws, fluids and meds that will be administered, etc. It was a lot to take in but gave us a clearer picture of what we can expect and gave us the opportunity to voice concerns, care preferences, ask questions, etc. We are in a much more stable state of mind right now than we will be when all of this is being done, so we greatly appreciated that extra effort on their part.


If you happen to be reading this and facing a similar situation, I strongly encourage you to ask as many questions as possible and request they outline something similar for you so that you can avoid surprises. In talking to other fellow heart families and medical staff about their experiences, while our concerns and preferences may be shared by others, they typically are not asked for because people just assume they have lost the right to request them. This is not the case, you still have quite a bit of say about you and your babies care despite their challenges. We have been able to negotiate almost every aspect of routine care pre-surgery while remaining fully aware that we will need to remain flexible and fluid if his condition is less than ideal.

We will be making our way to St. Louis soon, so in the meantime I am doing a final cleaning/organizing of the house, spending as much time with Evan as possible, prepping freezer meals and foods for us and for Evan, packing virtually everything we may need, making sure our fridge has only the essentials in case we need to "run" out, prepping babies things for when we return, and the list goes on.....

Next stop, St. Louis!