Day 1 - Michigan Fetal Intervention

We had our first day of appointments at Mott Children’s Hospital (University of Michigan) in Ann Arbor, Michigan, yesterday. The great news is, they did not add to our list of complications for our baby girl. They confirmed everything we already knew-Hypoplastic Left Heart Syndrome (HLHS), Intact Atrial Septum (IAS), Cystic Hygroma, Multi-Systic Kidney, Turner Syndrome (TS) short femurs, short humorous (these are due to the TS). Her growth is around the 50^th percentile, but her femurs/humorous are only in the 6^th percentile. The cystic hygroma continues to look smaller, and there seems to be almost no fluid left inside of it-it’s now mostly just extra skin. She moves and kicks around all the time. She is just as active in the womb as her sisters were! And cute as can be of course J

Everything with me checked out just fine. I am healthy, and they feel comfortable with my medical history to put me through the procedure. They told us, which put my hubby at great ease, that I am their number one priority. They will not do anything or continue to do anything during the procedure if my safety is at a higher risk. Obviously, there are minimal risks to me with this procedure. I feel the main one is due to the fact they are putting a needle into my uterus. Anytime something like that is involved, there is risk of bleeding or infection. These are very rare, but if something did seem to not be going right on my end, they would abandon the procedure immediately for my safety. I think it calmed Mark’s nerves a lot to hear them say that their main concern is for my safety as he is obviously most concerned about me being OK through this procedure.

The doctors said that without a successful fetal intervention, they believe her chances of surviving through her first surgeries after birth are only about 10%. If this fetal intervention is successful, it could get her chances up to 50%. Our prayers in this procedure are (i) it would be successful; (ii) the hole they are able to make is nice and big and stays open (it’s always possible they could make a good hole but then it could close up again before birth); and (iii) it would make her much more stable at birth (though she will still be high-risk for sure and may still need immediate surgery).

Even during the procedure, if her heart rate is not doing well, they could abandon the procedure and not do it at all. Or, if they can’t get her in the right position, they will not do the procedure. Or, they could try and poke a new hole, and it just doesn’t work. There are still so many little things that have to line up exactly right during the procedure to even have a chance of success. Honestly, we will be grateful whether or not it is successful as long as our little girl makes it through this. Even if it’s not successful, we will have peace in knowing we tried everything. We just want her to be OK after the procedure. We, of course, are terrified of the worst-case scenario.

We will be the eighth fetal intervention they have done on the atrial septum. They actually just did a successful intervention two weeks ago, so we are glad they had a little practice round before our procedure to refresh their minds and hands J It’s also comforting knowing they have done this procedure successfully on a TS/HLHS/IAS baby before. She is 4.5 years old now, I believe. Hearing other heart warrior stories of beating the odds gives us hope and strength to keep doing everything we can.

We go back on Monday to meet with anesthesiology and then the team of doctors for the fetal intervention. They said it will be a full room of about 15-20 doctors. Mark will be in the waiting room (with several friends-he won’t be there alone). It may take 2-3 hours, which includes an ultrasound, getting the baby in position, my epidural, meds for the baby, the actual procedure, then watching the baby afterwards. They will keep me most of the day and plan on discharging me in the evening so I don’t have to stay overnight, given everything goes well and no complications. We will fly home Wednesday late afternoon.

If the worst-case scenario did occur, we would know very quickly the day of the procedure. Once we are home on Wednesday night, we can feel pretty confident that she made it through successfully.

We want to take a moment to thank our church family and friends. We have only been living in our new city for a month and a half, and our new church family has taken us in with open arms. My girlfriends and my hubby’s aunt watch our girls during all of our appointments, our life group is providing dinners every night while we are here in Michigan for our children and their caregivers, we have an army of prayer warriors, my church has arranged childcare for Raegan once the baby comes during the same time Kenzie is in preschool during the day so that I can be at the hospital those two days of the week. They have been such an unbelievably huge blessing. We have been overwhelmed (in a good way) and humbled by their selflessness and desire to help us through this without really even knowing us that well yet. I know so many heart parents who do not have a lot of support through their journey, or their situation scares people away. We are so thankful that we have been surrounded by people who are not afraid to step up and help us through this in a multitude of ways. So, THANK YOU – to our new church family, our friends and family near and far, to those praying for us that we have never met, to anyone who has read our blog. Thank you from the bottom of our hearts.

Specific ways to pray for us:

1. God to direct the hands and minds of the medical team during the procedure and to just be over everyone in the OR that day.

2. If this is not the path we should take, then God would close the door somehow.

3. Continued peace for Mark and I as we go forward with this procedure.

4. That God would bless our decision to do everything medically available for our little girl to give her the best chance at life.

5. Our little girl has already beat the odds in so many ways-from resolved hydrops to TS (only 1% of babies with TS make it to birth) to her CHD-she is a fighter for sure, and we pray that God would just continue to sustain her life in the womb and protect her through this.

6. Kenzie and Raegan as we are apart from them and for their caregivers while we are gone. That they would have an enjoyable time during our absence and be good little girls J