Here she comes! As of yesterday, we reached the 37 week mark. Full term! Now we are making plans to deliver our sweet baby girl.
I’ll be honest, I’m not ready for this. I don’t think anyone is every truly READY to have a baby, except those moms that just want that baby out. Frankly, this is very scary. All the appointments, research, planning, and prayers come to life external of Lori. Savannah will have to start fighting on her own.
I recognize that information and posts here and on Facebook have been limited in recent weeks. Part of that is simply busyness, and the other part is how emotionally draining it is to keep rehashing all the details. But due to the lack of posts, I want to offer a big picture look at what’s wrong and where we stand right now.
Both Lori and Savannah are doing well. Savannah’s heterotaxy syndrome has affected her heart, liver, spleen, and intestines. We don’t know of any other problems at this point. Without anymore surprises, Savannah should come out looking and acting like a healthy, normal baby girl. Due to her heart structure, she may appear a little blueish. This is because the blood going to and returning from the lungs will mix in one large chamber inside her heart.
After birth, which is NOT planed as a C-section for those wondering, Savannah will be stabilized, then she and I will travel just up the street to Cincinnati Children’s Hospital. There she will be placed in ICU. This will be for monitoring – lots and lots of monitoring!
This raises a good point when it comes to visitors. No one under the age of 18 will even be allowed into the ICU to see Savannah, per hospital policy; plus due to the risk of infection, we don’t want to put Savannah or the other kids at unnecessary risk with lots of visitors. Please don’t make the drive to Cincinnati thinking that you’ll be able to see her. Simply, you won’t. You won’t make it to the ICU, of which Children’s has several. Honestly, you won’t even make it up the elevator. The security at that hospital is incredible. Outside of our immediate family, we simply can’t risk other people being around her. We are asking everyone to just keep praying, sending us messages or gifts for support, but visiting is not a good option.
Why is this SUCH a big deal? Beyond the fact that it’s flu season, it actually has to do with Savannah’s spleen. The doctors are not sure if Savannah has a functional spleen. The spleen is important in the body’s efforts to fight infection and heal itself. Essentially, her immune system may be compromised at birth. We can’t run the risk of introducing her to a bunch of people and therefore, their germs. This will be true even after we get home from the hospital. Savannah’s not going to be making frequent trips to church, family gathers, etc. Frankly, doing so has the potential of killing her.
With regard to her liver and her intestines, the doctors do not believe that she will need any treatment right away. They can tell on ultrasound and MRI that these have developed normally and seem to function. Ultimately, she will always have an oddly shaped liver. But with her intestines, she will need a corrective surgery at some point. Our hope is that she can wait until after her heart reconstruction surgery to have a minimally invasive version of the Ladd’s Procedure for her bowel.
The big concern is obviously with her precious little heart. I won’t go into the whole list of defects or problems, but I will say that it’s a complex case. Our plan is for her to live and grow as is until about 6 months or maybe even 8 or 9 months if her little body can handle it. Then, we will travel to Boston Children’s Hospital for her complete heart repair. This repair would give Savannah a fully functional, four chamber heart. Hers will just be in the right chest instead of the left chest, like a normal heart.
In all honesty, the doctors have prepared us for the entire range of outcomes. Everything from still birth to a long, happy, healthy, “normal” life has been presented. Even with great advancements in medical science, there is still so much that we just don’t know. There is no formula, no set plan, not even a specific diagnosis and course of treatment yet. It’s all very vague and generalized at this point.
There are still so many hurdles for Savannah and for us as a family. Throughout all this unknown ahead, there are bound to be surprises. Lori and I are simply hoping and praying that these are GOOD surprises! We are boldly asking that you’d join us in praying for her continued healing, her survival and health. We recognize that God is sovereign and has control of this situation. But as a parent, it would mean so much for us to be able to raise this little girl.
Many thanks for all of those who have helped with meals, supported us financially, and surrounded us with prayer. Please keep them coming. Thank you for being the hands and feet of Christ in our lives. Simply, thank you!