are you ready for a miracle?

I have had the Patti LaBelle/ LeAnn Rimes (think Bruce/Evan Almighty versions) in my head all day.

I have been and you all have been praying big things for our family and we started seeing them today!

Today was supposed to be our last doctor appointment day.  First at the perinatal specialist (the baby's doctor) and then on to my ob.  As you know, we had a c-section scheduled for Thursday, so this was it! The appointment at the perinatal doctor started just like any of them a nonstress test and the tech taking a long look at our guy. But when the doctor came in and started telling us what she was seeing that's when it got exciting. 

Y'all, the fluid in his abdomen is almost gone! Literally from last week to this week his fluid build up went from severe to normal. Normal! This greatly decreases the risk of the fluid putting pressure on his other organs.  The doctors aren't saying with absolute certainty why or how it has gone down but that it is a good sign that the intestine he has are most likely working. Huge Praise!

I love that the specialist even sent all of the pictures from today to her partner to get a second opinion because she was not expecting to see the fluid decrease so significantly.  She pulled up pictures of previous weeks to compare side by side while we were in the office and she was just stunned.

So this means we are going to let him keep growing, no eviction notice quite yet! No c-section this week! That is unless I go into labor. The doctors want to monitor me closely so I will have another appointment on Friday and again next Monday.  They still believe, at this point, that a c-section is necessary so I will get a new date from the hospital in the next few days.  The doctors are recommending the 29th or 30th and at that point we will be in our 38th week.

We still have a long way to go and so many more questions about his condition.  I have felt so restrained in my praise and just overall excitement over this news today but tonight I am just ready to abandon that.  This may be a small miracle in the grand scheme of his overall condition but tonight I just want to cry happy tears and give thanks and praise without worry of the future.  To celebrate today for the victory that it is!

So we will keep praying!  We will pray for miracles fully believing that we will see them in our boy.  Praying that his life will bring glory to His name. Praying Lord help my unbelief.  When I doubt your almighty power to save and heal help me to believe. Praying that my body can hold out for another week because man is this painful! We will worship Him and praise Him through it all.

Thank you, thank you, thank you for praying with us! 

 

 

 

 

almost time

It has been quite a while since I've posted and a lot of that has to do with the fact that we haven't really had a lot to update on. 

The nut shell is...
Our boy's condition is still exactly the same. 
Yet he is growing perfectly otherwise (estimated at 7lb 15 oz at 34 weeks, that is huge!).
This pregnancy has been hard physically. Really hard.
Matt is my hero.  He has taken over everything. And that's hard too.
We have been overwhelmed with love from our family and friends (so much so that when I try to write about it I can't find adequate words).
We are still filled with hope.
And the answer to the constantly asked question... Nope, he still doesn't have a name.

 My brothers wedding, Oct 19th

 

So now, after all of these weeks and this high risk pregnancy becoming normal life for us, he is almost here.  We are set to deliver by c-section on Thursday, November 21st at 9 am.  Folks, that is 17 days away! It seems unreal that we are already here.  
 

Our refrigerator is covered in pictures of his sweet profile.

As his delivery date draws closer and we work tirelessly on the to-do list, reality is starting to set in. We met with one of the neonatal doctors that will be overseeing his care in the NICU yesterday and it was a tough, emotional crash back to Earth.  We will be delivering a very sick baby.  The worst case scenario is still the worst case scenario.  If he doesn't have enough intestine to sustain life or if what he has doesn't work there is nothing that the doctors can do.  That is a reality I hadn't let myself think about in weeks or maybe even months.  On the other hand, the best case scenario remains too. If he has enough working intestine then there are a variety of options the doctors will explore. All of this will be determined in the hours and days after he is born. 

We are still praying for a miracle.  For a baby that is born healthier than we could have ever expected with his diagnosis.  For doctors and nurses to be confused and astounded by the miracle of his progress. For our hearts to find peace in the moment to moment uncertainty.    

Yesterday was emotional as we walked through the range of scenarios again but I find it no coincedence that when I went to practice G's memory verse for the week with him the Lord had a sweet gift in store.

Casting all your care upon Him: for He cares for you.
1 Peter 5:7

So this week, as my anxiety rises and fear tries to invade I get to focus on teaching a four year old just how much God loves us.  So much so that he wants us to cast it ALL upon Him.  And I get to hear G's voice repeat back to me what I so need to hear "Casting all your care upon Him: for He cares for you. 1 Peter 5:7".

G wanted to take my picture at Home Depot.

His idea of zooming was to instruct me to put my head on my belly.

Carry On

Life has been crazy, chaotic these last few weeks.  We have taken on some renovations to our home (some of which required us to stay at our parents house), celebrated the birth of my best friends baby girl, grieved the loss of my precious grandmother, Matt has been out of town for 8 nights and we've tried to keep up with all of the normal tball practice/games, church, school and doctors appointments. We've had an over heated boy puking in the car, car batteries die, special tests that require I keep urine specimens for 24 hours, blood taken and glucose drinks guzzled.  We've moved the boys into the same room, (kinda) celebrated Matt's birthday and had out of town guest stay with us.

It's been nuts!

In all of this, the doctors appointments have become fairly routine. The biggest new news that we received is that his left foot is turned in. The doctor noted it on the MRI but our perinatalogist was unable to confirm until last week.  Our guy had been breach and was sitting on his feet most of the time, so while they had looked and attempted to measure, the angle was very hard to see.  He has flipped for now and it is easier to see the angle between the foot and shin in his new position.  While the right leg looks to be normal the left is certainly clubbed. On their own, clubbed feet are not necessarily a big deal and can typically be corrected with therapy, orthopedics or surgery.  The concern in our boy is that he now has two abnormalities.  This just makes the doctors more suspicious that their might be a bigger chromosomal abnormality going on here.

BUT as always, we aren't sure!  It could just been a baby with two abnormalities.  Of course, we are hoping and believing this is the case. We hate that he will have one more battle to climb, but I know that the Lord will see us through all of the days ahead just like he has each one behind.

I read something a while back that has stuck with me from NatalieFalls.com. She has an incredible way with words and perspective that is a gift. A friend of hers is going through an uncertain pregnancy and asked for prayers and her response has not left me.

She writes:

"I held my daughter close and I poured out words that have come from the most difficult times in my life. And they are the most precious and sweetest of times in my life. It was a time when I was desperate for Christ to be my comforter. When no human could possibly offer me any comfort, my Savior was reminding me to trust in Him. Not my plans and my direction. But His perfect plan. His good and perfect plan, one that I would have never picked for myself.

 

As I told my friend I would pray for her, she's been on my mind ever since. And that test has been on my mind. It can tell her a few things about her baby, but it will never tell her all the things God knows about her baby—after all, He is her baby's creator. The one who formed her beating heart. The one who knows every soft and delicate hair on her precious head."

This is certainly not our plan and one that we would have never picked for ourselves.  But it is the Lord's plan for our family and our son. His perfect plan. And she is so right! No matter how many doctors we see or tests they run, they can never know all the things our Creator knows about our boy.  They can't tell us about his spirit, about the glory he will bring the Lord and the joy he will bring to our lives. These tests don't know our baby.  The Lord does.  We, as his family, will be privileged to know much of that ourselves.

For you formed my inward parts;
you knitted me together in my mother's womb.
I praise you, for I am fearfully and wonderfully made.
Wonderful are your works;
my soul knows it very well.

Psalm139:13-14

I pray that our souls.  That your soul. That each of our boy's souls would know His wonderful works so very well.




  

doctor, doctor

We had two more doctors appointments this week, but don't have a lot to report. 

I had to change ob's in order to deliver at Medical City and we had out first appointment this week. We are so thankful that she took our case, as it's high risk and it's not common to change doctors at 25 weeks pregnant.  She came into the room on Monday hobbling on crutches, fresh off of emergency knee surgery the previous Friday.  So either she's crazy, a very committed doctor or maybe a little of both.  Either way, we absolutely loved her.  She spent a lot of time catching up on our history and current pregnancy.  She seemed extremely concerned with keeping up with my (and Matt's) physical and mental well being, recommending spending time exercising, reading, going on dates or doing anything to get a deep breath, keep stress low and our marriage strong during this time. Since we hadn't been back to an ob since the original diagnosis (all of our doctors appointments dealt with our son's health and very little with mine) it was interesting to find out that I am at an increased risk for preeclamsia.  So I will be monitoring my weight and blood pressure at home each week and get to do some fun tests to measure the protein in my urine.  We see her again in 4 weeks and then are already bumped to appointments every 2 weeks.       

On Friday, we went to see our perinatal doctor who does the detailed sonograms every 2 weeks at this point, soon to be every week.  She also went over our MRI results in detail with us.  As we found out he does have what they are calling a microcolon.  While we are still taking it as good news, she confirmed that we really don't know how good of news it is.  We probably won't know until he is born if it is something that can actually sustain any kind of function. 

So we keep on, keeping on.  We have a brief break from doctors appointments and then they really ramp up for the remainder of this pregnancy.

We are believing and standing firm in this today...
We have this hope as an anchor for the soul, firm and secure.
Hebrews 6:19 

poop talk

Today I went in for a fetal MRI.  For the first time since his original diagnosis, just over a month ago now, we got good news!

The MRI today showed that there was meconium in his rectum.  That means 2 things.
1. He has a rectum! This couldn't be seen on the ultrasound
2. The poop got there somehow! This means that his small bowel is attached to the rectum somehow.  It is not fully showing at this point, but the doctor today diagnosed it as a microcolon. It is not nearly what a colon (also called large intestine or large bowel) should be but it seems there is a connection there.

We are not sure exactly how good of news this is, but we are certain that it is good news.  After all that time and talking through so many possibilities with the surgeon, this one possibility did not come up.  Currently, we have no idea what this means for future surgeries or his over all diagnosis.

The doctor today also believes he has meconium peritonitis.  This is a tear or perforation in his bowel and what would be causing his ascites.  This is one sign of having cystic fibrosis so we will probably be testing for that in the near future.  He does not have any other indicators of cystic fibrosis at this time, so the doctor indicated that is more to rule it out.  Cystic fibrosis is a recessive genetic disorder, so Matt and I would both have to be carriers for him to have it.  They will test me first and if I am a carrier then Matt will be tested.

This also means that he most likely has meconium in the fluid that is in his abdomen.  The doctors were already aware of this possibility, so they will just continue to watch for stress it may cause on his organs.  This can also be harmful once he is out of his current sterile environment, so they will address it when he is born.

There were also several other things that were sort of a mystery about his case, which is what we have grown accustom to. Lot of comments like "usually when we see this ______ also happens, but he is not showing any signs of that".
The other great news is that his brain, lungs, and all other organs still look perfectly on track for his gestational age.

Next up: Another visit with the perinatal specialist and first appointment with our new ob next week.

More Information, Only a Few Answers

Today was a big long appointment day. I hardly know where to start with all of the information flooding my brain.  While we received lots of information it all still falls somewhere into this broad spectrum, because so much is and will remain uncertain until he is born.

We first met with the pediatric surgeon, who will most likely be the one to operate on our baby boy.  He took a look at all of the sonogram pictures and just went to town filling our heads with lots and lots of information.  So much so, that I am not even sure how to get you up to speed on it all.

Worst case scenario is still the same.  That our boy would be still born due to distress of any type while he is still inside.  He also added that although we are seeing small intestine on the sonogram it needs to be working (somehow we hadn't thought of that!) and that hopefully he has enough small intestine to work with.  If for some reason that small intestine is not working, then they would just be keeping him comfortable at that point. A transplant on any part of the intestine is not a viable option right away and/or most likely ever.

He explained how complex the small intestine is and the function of the large intestine as well.  If the small intestine is in full working order you can totally live without a large intestine!  Great news! 

He also explained several options if the small intestine falls somewhere in the middle between not working and fully functioning.  These options include several surgeries over the course of the first year or two.

More praise! We found out that it will most likely not be emergency surgery. The surgeon said he  expects him to be stable when born. That most likely they will be able to give him a couple days (on iv for feeding) before he operates.  They will do x-rays and contrast dye before surgery to get a better idea of what his intestine look like and how they are functioning.

He did say that although there are several steps they go through, this surgery will still very much be a make it up as you go type procedure.  His case is so rare and will be so specific to his body that there is not necessarily a predetermined route to take.

He also said for us to expect at least a month stay in the NICU.  While it is impossible to determine how long and any little change will make that longer (especially if he is delivered prematurely) that was his very best case scenario answer. 

We were very pleased with our visit and how thorough he was with us.  By the end of our appointment he had filled the whole table with drawings to help us better visualize each situation.  It was fun to see him jump into action when he walked into the next patients room where there was actually a child.  It seemed like he was really in his element with kiddos. 

So straight from that appointment we went to meet with a high risk maternal coordinator at the hospital. She took us on a tour of the hospital and they are not joking when they call it Medical City.  It is enormous. We went through labor and delivery and on to the NICU floor.  It was good to see and learn more about the policies and procedures.  Matt and I were both heartbroken to hear that the boys will not be able to visit their brother at all.  The coordinator also explained a few services that are available to us, one of which is a Child Life Counselor.  This counselor can meet with Matt and I and also with the boys to help give us language and tools to help the boys understand what is going on. This was a huge praise for us because our hearts are so heavy thinking about what this is going to mean for them.

So today we are thankful for modern medicine.  We are thankful that all of the dozens of doctors, nurses, specialists and office staff that we have met have been so kind and encouraging.   We are beyond thankful for the prayers, texts, emails, calls, meals, childcare and general outpouring of love on our family.  Sometimes this world can seem so awful and in these days which could easily be overwhelmed by darkness every where we look there is light. It shows up in so many unexpected place like letters from sweet little girls and even right there in a hospital window!

We are still praying that I would be able to carry him full term, that the fluid would not spread and that he will be born with a healthy large and small intestine.  We are praying for my care and for wisdom for the doctors who are guiding this journey. We are praying that no matter where on the spectrum our boy falls that we would rest completely on the strength of the Lord and that his life and our lives would bring Him glory.

The steadfast love of the Lord never ceases;

his mercies never come to an end;

they are new every morning;

great is your faithfulness.

"The Lord is my portion,"

says my soul,

"therefore I will hope in him."

Lamentations 3:22-23  

a plan

Friday we had our second appointment with the specialist and were able to ask tons of questions.  Several of the answers were we won't know exactly until he's born, a few more were now directed to the pediatric surgeon we have been referred to and a few of them we even got answers to.

We did find out that our boy is not showing any signs of a chromosomal abnormality at this point.  Our decision was to do the blood test and not a full amnio so we don't have a complete work up, but everything they were able to test for came back negative.  We were so thankful that the waiting period was over and to get that news!

They also did another sonogram, which they will do at every appointment from here on out.  After our next appointment it looks like we will meet with the specialist weekly. The sonogram showed exactly what we had seen previously, severe ascites and no signs of a large intestine.

The plan for now is to continue with the regular observation of him.  They are looking for any signs of distress, like the fluid growing or spreading to other areas (heart/lungs/brain) or any sign of chemical distress to his other organs that the fluid might cause. I will continue regular care with the ob also.  Glucose test is up next! We will be meeting soon with a maternal care coordinator at the hospital who handles high risk cases and the pediatric surgeon.  They should be able to answer a  few more questions for us.

This road ahead is long and very uncertain.  There are many things that we simply won't know until they do or don't happen.  Out goal is to get the information that we can and continuing to trust and have faith with all the unknowns.

We are praying against any signs of distress and that I would be able to carry him until he is full term.  We are praying for peace to continue to wash over our family. And always for a miracle!