Wednesday, November 2, 2016

Our Journey Through Fetal Medicine: Praise God From Whom All Blessings Flow

Doctors' appointments are getting more spread out it seems for now, and our updates aren't as frequent. We have been in this limbo of not knowing anything yet having to wait until Ann Louise gets bigger to be able to see much else. Finally, we have some more news to share!

Last week they called to tell us the results of the amniocentesis. Of everything they can test for prenatally on the chromosomes, they saw nothing! This was great news. Most people are aware of the major genetic, chromosome, and neural tube abnormalities such as Down's, Trisomy 13, and Spina Bifida. Even before this test they were not thinking Ann Louise had any of these conditions that you commonly hear about; they mostly were testing for those very rare conditions that either were not on their radar or they themselves had never seen. But all reports showed no signs of any of these rare conditions.

When I spoke to the genetic counselor, I asked if she had a list of everything that had been ruled out in that test. However, she said many of these conditions do not even have names as they are so rare and the easiest thing would be for us to breathe a sigh of relief that our little one doesn't have them. I trust her immensely, so on we went happy as larks.

Yesterday I had an ultrasound with my specialist back in Odessa. I've had a lot of questions from folks asking which doctors I'm even seeing right now. We have a regular OB, an Odessa fetal specialist, and a Houston fetal specialist. The OB does the basic things he would for any pregnant woman. The specialists are working together to determine Ann Louise's condition, and to make it easier on us we only have to drive to Odessa for many checkups instead of going all the way to Houston for all of them. Texas is a big state! It takes almost as long to get to Houston as it does for us to go visit my family in Arkansas, so only driving 20 minutes to Odessa is a huge burden lifted. And technically my Odessa specialist does come to Midland, but I love the ultrasound tech in Odessa so much I'd rather drive to have him.

So yesterday I found myself on the road to Odessa sans Cash. It was my first appointment where he could not go since he had been summoned to jury duty this week...and of course with our luck he got selected for the jury. Because why not? 

I preferred to go by myself if he couldn't go, but I didn't realize how much I lean on him during those drives and hours in the waiting room and in the midst of the appointments. Right before I left Henry would not quit playing with the plunger and toilet bowl cleaner, and I started bawling. (Like, why?! Why are those fun toys?!) I wanted to talk to Cash and have him there, but as you know he can't have his phone during trial. His work is fairly lax and his boss has been awesome to let him just come with me whenever, so it was a new world for me to be without him. 

Luckily things did not take too long this time before the ultrasound tech came to get me. He was measuring every part of Ann Louise's body, every minute part of her brain, her little hands and feet. I started asking him what the measurements were and how they compared to a normal growth chart, and he couldn't believe that she is absolutely normal in growth. Even her kidneys which we had worried about so much were looking great: one was right under 7 mm and one was 4 mm. He explained that at 7 mm the doctors begin to have terms (that I don't remember) for them, but he said her kidneys were not to this point and in fact had not grown disproportionately since the last ultrasound he did. 

Once he got all the measurements, he said she was in the 51st percentile! It is hard to believe she is looking so normal and right on average with her age. I asked about her abdomen and does it seem to be disproportionately large compared to the rest of her body. He said actually no! Even with the fluid still built up in the bladder, her abdomen was only in the 59th percentile. If she were born today, you would not even notice the inside of her abdomen was enlarged. God...He is amazing.

As I was asking the tech all these questions, he stopped for a minute and his tears started flowing. He said, "Mrs. Pullin, I pray for you and your daughter every night. This is a first for me to witness. I remember the day the doctor said it was fatal if it was a girl. And then a few days later when I did the ultrasound, we saw it was a girl. I hurt so much for you and your husband then. I have prayed so hard. And now I get to see her kicking and playing and yawning. And the doctors are blown away. This has been amazing to see from where we started to where we are."

Of course I started crying as he was talking. We talked about God a lot and His faithfulness to us. We talked about how it has changed both of our lives and being more gentle to the kids we already have. We talked about his deployments to Iraq and Afghanistan and how this job has changed him from the hard man he was when he left the military. I could have hugged his neck...if I would not have had ultrasound jelly on me and my full belly exposed. 

It was an amazing moment to share with him. Cash and I both love him to our core and will never forget his excitement the day he thought Ann Louise's bladder had gone down (and it had). A lot of the times when I think about our miracle, I think about our ultrasound tech and had he not been with us every step of the way no one may have noticed her bladder had shrunk and her fluid levels were normal. He caught that. We can't repay him for it, but seeing his heart for his job and his true devotion to seeing us through with Ann Louise is something I will never forget.

Next the doctor came in and said Ann Louise was looking great. They still have some things they want to rule out at the MRI in 3 weeks (such as the microcolon, cloaca, etc.), but they were very hopeful at this point. He told me about his favorite patient he had ever had. It was a little boy he had diagnosed with LUTO, and much like Ann Louise his body just started making normal fluid levels and looking great. The little boy has gone on to live a perfectly normal life. His mom would take him once a year to urology appointments, and when she did she and the little boy would visit the doctor. Doc told me it was amazing to see that little boy grow and thrive. What he ultimately determined with him was that his kidneys had started functioning too early.

A baby's kidneys do not start functioning until 14 weeks because up until that point the urethra (that allows urine to pass from the bladder to the outside) is hard. At about 14 weeks the urethra begins to open and the kidneys start functioning. The doctors are starting to think Ann Louise's kidneys started functioning too soon. Without the urethra opened, the fluid built up in the bladder showing LUTO. Perhaps when the urethra did begin to open is when her body started releasing the fluid and looking more normal.

I was ecstatic! I asked, "So, I need to plan for annual urology appointments but everything looks good?" He chuckled and told me not to start planning college graduation. We have a long way to go. However, they feel more optimistic at this point and the early functioning kidneys are what they are leaning toward. The MRI in 3 weeks will rule out some major issues that we PRAY she does not have as they are brutal to everyone involved. 

I also asked about the sunken chest (pectus). He looked at it and said it was not major and told me about a friend he had in high school who had had pectus. The only thing with it is how you feel about it. Even as she gets older and ultimately hits puberty, it should not cause issues. He said if she was self-conscious about it then she could find the nearest plastic surgeon to fix it. I said only when she can pay for it herself; we have spent enough before she is even born! He laughed at that and ensured it was not a worry for us at this point.

He did not want me leaving thinking we were in the clear, and I know we have many miles to go before they rule everything out. But you better believe I am praising my God for the miracles He keeps providing to Ann Louise and to us. Right now we are praying for sustained growth and that these very rare conditions such as megacystic microcolon and cloaca are ruled out in 3 weeks. We have come so far in this 22 week journey we have been on. 

I hardly have a moment pass throughout the day that I'm not amazed. Amazed with the doctors who continue to provide hope and understanding. Amazed with our friends who have loved us so dearly. Amazed with Ann Louise and her little body that fights incredibly hard. And amazed with God, who even in 2016 when it seems like our world is crazy and in turmoil and hopeless, shows He is the same God that created the Heavens and the Earth. He is the same God who not only brought the Israelites out of Egypt but also gave them the Promised Land. He is the same God who called David to slay Goliath and go on to rule the lands. He is the same God who stood in the flames with Shadrach, Meshach, and Abednego. The same God of Ruth, Peter, Timothy. The same God who sent His Son to not just die but also rise again. He is the same God today as He was all those times before. And He will be that same God tomorrow too. 

After the appointment and Cash got out of jury duty, we met up with some friends at Rosa's. As we were walking in we saw a mother and son who are family friends of Cash's whom he has known since he was a little boy in Farmington, New Mexico. She asked the latest on Ann Louise, and we got to share with her more positive news. She told us how she has shared our story with friends and co-workers, many of whom are not Christians. She got tears in her eyes as she said that through Ann Louise God is being shared and testified that one lady in particular is beginning to notice that a God she never believed in is creating miracles.

I'll be honest. I don't want to go through this. I would never sign up for it given the chance, even if I knew the outcome. It's not really the excitement of motherhood I was searching for. But I remember: when God called Esther for such a time as this, she was terrified to go before the king and plead for her people but she did it with God's strength (and encouragement from a faithful uncle). When God called Mary to give birth to our King, she ran to Elizabeth scared but with affirmation from God (and support from her cousin and fiance) she saw Jesus through to his crowning of creation. I'm not Esther or Mary. I'm not even close. But God gives us those stories to draw His strength and to see His power. My goodness. If these women can risk their selves and nations yet steadfastly walk in faith, then surely to goodness I can finish up 18 weeks of a scary pregnancy with the hope and knowledge that the God of yesterday, today, and tomorrow will continue to perform miracles in Ann Louise's body and in my heart. Yet even if He chooses to not restore Ann Louise's body fully, we can rest knowing His a good, good Father who loves us despite our fears and anxieties and just plain humanness. He never promised a life without pain. He promised an inherited Kingdom without pain when we live this life with the faith that He is God. 

And if that isn't enough, I have other exciting news! Cash is on his way right now to pick up our friend Henry who is in the States from Uganda. If you have followed my blog for a couple of years, you may remember a post I did about two little boys we kept from Uganda before we were ever even pregnant. I have so much to share on this praise in another post on another day. For now I will say this...

We had lost touch with those boys and their choir leader Henry after the program they were in dissolved due to some financial issues with the African partners. When we heard that a new organization had formed, Bridge of Hope African Ministries, we began researching it. And right there as the founder of this very organization was the former choir leader Henry! We got back in touch with him and have been able to keep up with the boys and hope to Skype with them when they get back from boarding school over Christmas break!!! In the interim Henry came to the States to raise awareness and funds for BOHAM, and he is staying with us for the next week. We can barely contain ourselves and are looking so forward to seeing him! 

Over the past few months God has displayed himself to us in many ways. We are incredibly thankful for Ann Louise's little body and for our re-connection with the precious boys from Uganda we met nearly 2 years ago. Praise God for His many, many blessings. Some days it is little miracles that often times I take for granted. Some days it is news that a once fatal diagnosis is now a miracle and someone all the way around the world is back in your life. Praise God from whom all blessings flow!

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