Ready or Not…

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!

Three Months

It’s been a while since we’ve posted anything. That has not been out of forgetfulness or neglect.  Simply, our lives continue to become crazier everyday.

In the last few weeks, plans have changed.  Even Savannah’s diagnosis has changed.  For all the details, you can read the updated diagnosis page, but I’ll give you the Reader’s Digest version.  Going into our appointment in Cincinnati on October 16th, we thought Savannah’s issues were isolated to her heart.  Sadly, this turned out to not be the case. Savannah has heterotaxy.  This means that there are multiple organ systems affected by her illness.  We now know that her spleen, liver, and bowels have been added to the list.  This has, of course, added to our anguish.

Fast forwarding to the present, this coming week is going to be a tough week for a myriad of reasons.  This week marks the three month anniversary of learning of Savannah’s illness.  It also marks the beginning of a new phase.  This week Lori is moving to Cincinnati to be near the hospital where Savannah will be delivered.  This means Lori and I will be spending our weeks apart and only seeing each other on the weekends.  This is going to be exceptionally difficult!  Compounding this reality, I start physical therapy this week to treat some health issues I’ve been having.

All in all, these next few days are going to be tough.  Very tough.  Please continue to pray for us.  We’re taking it all one day at a time.  At this point, it’s really all we can do.

The Pit

In recent days, there’s been a growing pit in my stomach.  Why?  Everything so it seems, including a 22 year old Continental 816R-5B.  I won’t bore you with all the details, but there are certainly a few major concerns that involve Baby Savannah.

Having a baby is not a process we’ve been through before in our lives, so it’s scary.  Add any complication to a pregnancy, and it gets super scary.  Now toss in a set of complications so rare that there is minimal scientific research to guide me as a parent in determining a course of treatment.  As Savannah’s Daddy, I want to make the best and most informed decision I can regarding her care, but even our insurance doesn’t have a standard of care for her condition.  It’s scary!

As a husband and father, I recognize that I have a responsibility to support and be there for my wife and family.  This introduces another set of conflicts between working and keeping the jobs that support them and spending time with them.  I simply don’t know how I’ll manage my work responsibilities and my family responsibilities.  I know we’ll figure it out, but it’s still scary recognizing that there’s a vast unknown there.

I think the not knowing is the worst part sometimes.  Lori and I have been clinging to Proverbs 3:5-6 as we recognize that God has a plan.  And yet, it’s not our plan.  We’ve run into folks that have almost ignored the severity of Savannah’s condition by merely believing that God will heal her and all will be fine.  Can God do that if he wants?  Absolutely!  We continue to pray for her complete healing, yet we recognize that God’s plan is not our plan.  Just as Jesus prayed until he bled from his forehead to not die on the cross; ultimately, God’s plan was for him to die.  In Savannah’s case, God’s plan may just be for us to travel to Boston to have her heart repaired.

Adding to the stress, our insurance has been as helpful as you might imagine for an insurance company.  They don’t want to pay any claims that they don’t have to pay.  This will leave us on the hook for some rather expensive tests and procedures.  Add the fact that Savannah’s heart surgery will likely be done in Boston, MA next year, and the $600 that remains in our savings account simply won’t go very far.

We’ve crunched the numbers and are expecting this journey to cost us about $30,000 in the next year.  This is an incredibly large number in the context of our annual household income.  The journey from Birth to Boston is going to be enormous; and frankly, we need help!  We need financial help.

In a time where nearly every business, organization, and church group is raising money for some cause, Savannah’s Heart is being added to the list.  Lori and I are working on setting up the needed bank accounts and fundraising infrastructure, but we certainly can’t do it on our own.  We’re not here to beg, but to simply state “there is a need.”  I firmly believe that God will meet each and every one of our needs, including this rather large one.

Ask and it will be given to you; seek and you will find; knock and the door will be opened to you.  Matthew 7:7 NIV

Learn more on the How to Help page.

 

This entry was posted in Dad.

Echo and Ultrasound Update!

I should probably write a whole post; but for now, I’m just going to paste the update we’ve put on Savannah’s Facebook group:

 

God is good! We saw significant improvement in Savannah’s heart today!

The smaller chamber has grown significantly! The doctor said it is now comparable in size and looks much much better. The vessels we were concerned about also seem to have improved. We still don’t know for sure if they are all routed in to just the right part of the heart, but the doctor seemed much more hopeful that things could be correct. Either way, he feels confident that we can now aim for a 2 ventricle/4 chamber repair. The best news of all is that now everything should be able to be handled here at Riley instead of having to go to Boston. We are praising The Lord for that!

The cardiologist also said that he is now optimistic that she may not need ANY heart surgery directly after birth. If she does, it will be a much simpler non-open-heart procedure. We are also no longer looking at two major open heart surgeries for alternate circulation, but ONE surgery between 9-12 months that will be a REPAIR! This gives her a much much better long term outlook!

We had an extensive ultrasound at our appointments today, too. All Savannah’s organs and other body parts appear correct and she is still a very active baby! We will keep watching her intestines and spleen after she is born because they cant see those in ultrasound, but everything they could see looked good.

They did find one area of concern. Savannah is measuring small. This could be due to a lot of things, including her genetics (Mommy is not very big either!), the fact that she has a two-vessel cord (we knew this) that does not move as much blood as easily, her heart defect (heart babies are often small), or a problem in the placenta. The doctor said there is no way of knowing which thing or things it is, so they want to monitor her very closely for blood flow and growth. This means weekly ultrasounds to measure growth and blood flow through her cord. That way, if she has trouble or stops growing, they can look at delivering her early so they can help her to keep growing! They will keep her in as long as possible, but we don’t want to put her at any unnecessary risk if her body is not getting enough nutrition from her cord to keep on growing.

Thank you so much for all of your prayers. I am confident that those prayers are the reason we saw so much improvement today!

Please keep praying for her heart to keep improving. God is working in that tiny little heart and we are so thankful.

Please also pray very specifically for Savannah’s blood flow through her cord and her growth. The bigger she is when she is born, the better off we are for her heart condition. Please pray that the flow through her cord would increase and be sufficient. Pray also that her growth would stay on track and that she would be able to keep gaining weight. Prayer works and we saw plenty of evidence of this today!
Praising God tonight, and crying HAPPY tears!

This entry was posted in Health.