Our Journey Through Fetal Medicine: Thanksgiving

Was last week really Thanksgiving?! Well, to keep in the spirit of the holidays I will still be thankful this week. We have so much for which to praise God.

Our Friends/Family
I have no idea where we would be in this journey without our friends and family. Y'all have been prayer warriors, confidants, shoulders to cry on. You have been present. It is not lost on us that you carried us through the past 26 weeks.

Our Doctors
What a team of specialists we were blessed with. From Odessa to Houston and all in between our doctors have coordinated and shared results, research, and knowledge to help us through this pregnancy. Even when we had the most grim outlooks our hearts could imagine, it was the doctors and genetic counselors who let us ask questions and cry whenever we needed. They did not shut their doors when it was a fatal diagnosis. They still let us come into the office and receive ultrasounds so that our hearts could be full. I don't think in this day and age we hear enough about the quality of doctors we have in this country, but I am so thankful for our healthcare and the level of understanding our doctors have.

The Holidays
Last week we spent a week in San Antonio and all of South Texas visiting with Cash's family. It was a sweet time to relax and let Henry enjoy playing with his cousins. We saw all of the grandparents and most of his aunts and uncles. I'm sure my sister-in-law woke up this morning extra thankful she was only cooking for the 5 of them, but she hosted us so graciously for a week. A WEEK, Y'ALL!! A week of her mother-in-law, father-in-law, brother-in-law, sister-in-law, and nephew in her space. I think I heard the pope was giving her sainthood. She also sent us with three large boxes of girl clothes. I have never been in such a sea of pink, but I couldn't help but ooh and aww over every outfit I pulled out. (Side note: please, no one, send clothes for Ann Louise. The girl now has enough to last through her senior year of high school!)

Did I mention the girls whooped the boys in Battle of the Sexes?

Henry, Cash, and Mamaw--our first time to see her stand on her own since her stroke 2 years ago. She's a rockstar and where Ann Louise gets part of her name.

MRI Results
Last, but certainly not least, today we received preliminary MRI results from last week. The doctor said it was all positive! The bladder and kidneys look the same as they do on the ultrasounds, so no surprises there. The liver is good (which was a relief after the ultrasound showing possible signs of a spot last week). And the biggest of all was the colon: they see nothing abnormal!! That rules out some nasty stuff such as the megacystic microcolon and cloaca. That call relieved us from worrying about multiple organ transplants and/or another fatal diagnosis. This was huge.

The doc also said she will meet with the team tomorrow and visit with the urologist. Hopefully Wednesday we know more about where we may have to deliver. At this time she is leaning toward Odessa instead of Houston because it does not look like Ann Louise will have to have an immediate surgery. Due to her thick bladder chances are high that she will need some sort of surgery or a permanent catheter at some point after birth, but that will depend on what the entire team of specialists conclude as well as postnatal monitoring. Great news would be to deliver in Odessa.

Midland does not have a NICU. We know certainly Ann Louise will need ultrasounds after she is born, so at minimum we will be in Odessa. However, Odessa does not have the type of pediatric surgeons Ann Louise may need, so a good chance still remains that we will temporarily move to Houston, Dallas, or Forth Worth for a couple months. If they think she can wait on the surgeries, we will deliver in Odessa. If there is a chance the surgery is imminent after birth, then we will go to a major medical center.

our traditional going to the doctor for Ann Louise picture

The Actual MRI
I am thankful we were able to have the MRI. It is hard for me to say I'm thankful to have gone through it. I've never had an MRI and had no idea what to expect. As they were walking me into the room, they said to expect 2 hours in the machine. TWO HOURS!!! As I went head first into an enclosed capsule I thought no way was I going to make it. I almost started crying.

It was 11:30 and I could not eat until after the testing. The only thing I had that morning was some apple juice and 2 Benadryl. I was so sleepy but had to keep holding my breath as they took different images so the baby would be as still as possible. After about an hour I got hot and started thinking I couldn't make it. I finally called to the technician and told him I was too hot and he needed to get me out of there. He said surprisingly he was on his last one. I thought okay, I can make it just a few more seconds. Then my whole body started going numb, and all I could feel below my shoulders was tingling. I could feel myself starting to pass out and started yelling to get me out of there, but he was still on his last image. As I braced myself to hang in there, I kept thinking, "They are going to find me in this machine plum passed out."

Finally, he came in and said that the baby cooperated and he had gotten all the images in only one hour. Well, shoot. Just one hour of my entire body including my arms strapped to a gurney whilst not moving.

The doctor was with him the entire MRI and had headed up to her office to load the images. They felt certain we would get preliminary results that afternoon. After grabbing a quick bite, we went in for our ultrasound with a different doctor. It showed nothing really new, so the doc had us head back to San Antonio and said she would call that afternoon with MRI results.

We did not hear from her until this morning, so it was a long wait. As I mentioned the MRI was going to reveal some big, nasty things. It was the pinnacle of this stretch in the pregnancy. So while we tried to avert our attention, it was hard not to wonder all weekend if we had another fatal diagnosis or if we had a healthy baby. That's a pretty big difference in results.

Patience has become our game. We are resting now that these major complications have been ruled out. Knock on wood, but the next big news we expect to get will be after Ann Louise is born. I can hardly believe that as I type it. God has been so faithful to us. From holding our hearts when we found out our dear little girl would be born without a chance at life to the miracle he performed on her body to now giving us peace as we continue to wait, God has shown us time and time again that He does not leave us nor forsake us. The past 26 weeks have been perhaps the longest of my life, but they have also been some of the best.

That sounds a bit crazy to say these are the best weeks of my life. But we have been able to rest in Christ and receive one of His miracles while growing our marriage and leaning so much on one another. This Thanksgiving I'm thankful for so much, but perhaps I'm most thankful for God making me wait all those years ago when I wanted to be married so badly but had not a {good} prospect in mind. I look at my husband today and know without a doubt God gave me the greatest earthly gift in him. He is my absolute best friend, and I couldn't make it through these trials and times of worry without him sitting there by me in the doctor's office or holding me while I cry in the middle of the night.

Last week as we waited to get checked in for the MRI, Cash reached over and put his hand on my back and said a prayer. It was silent. I don't have any idea what he said. (Okay, maybe an idea..) But while we sat there I said my own prayer thanking God for all of his miracles but mostly for the one sitting next to me.

Henry giving Dada kisses while I melt.

Our Journey Through Fetal Medicine: What Normal Looks Like

Tonight Cash and I are back in Houston awaiting tomorrow's MRI and ultrasound. We have waited on this for 6 weeks, but suddenly today my heart has been heavy and anxious.

First, we left our little man in Victoria where Cash's parents are keeping him overnight at his grandparents' house. Henry needed a nap, so as we were leaving I put him in the crib. As I slid my arm away he grabbed me and was screaming. I walked out and wanted to cry. I hate leaving him. He has no idea when he wakes up that he won't see us for another 24 hours. Although we obviously have to do it, it rips my heart out to walk away. He was asleep before we even left and got in a good 2 hour nap, but as I sit here tonight his little face is all I can dream about.

We were told last night that we'd get to stay in the Ronald McDonald House. I was very happy with this news because I'm already tired of doctor bills, hotels, gas, restaurants. It is a blessing that places like this exist. Except it feels really different...not a way I expected.

I don't know if I ever realized how good doing good things makes ME feel. Sure I've tried to do good for others, but at the end of it I can always sit back and say, "Man, I got more out of that than they did." I have always felt confident during those times of my life. But tonight Cash and I have been on the receiving end. And that feels a lot different than those good vibes of doing good.

I sit here thankful and appreciative in so many ways for the room we are staying in and the food we were blessed with. But tonight as I stood in a line to receive my plate of food prepared for us by an organization looking for volunteer hours, I felt a bit helpless. Sad. Needy. Yikes...as a Christian we like to be the ones giving, not the ones needing. It is hard and vulnerable to be needy.

As I took my plate and said thank you, Cash and I found a spot by the window. I looked around realizing everyone there had a really sad story. It is one thing to be the one in your friend group or Bible study needing some big prayers and all the attention is given to you. It is another thing to be one of many whose only hope rests in doctors and (maybe) God.

A family was sitting close to us and I overheard the young mother say that when they got here last July she was pregnant, so they have been here nearly a year and a half. They are waiting for her child to reach 22 pounds to get a transplant. I could barely eat. My heart sank for her, for the other stories I don't know, and the fear for our future.

We quickly finished and decided to go for a drive. Once we were in the car I started bawling. I don't want the Ronald McDonald House to be my normal for a year. I want my cushy life in my manicured neighborhood with my adoring husband and cute baby. Not a fiber in my being yearns for this to be how we raise Henry or spend even a week of our lives. That sounds selfish. It probably is. But it is real.

Tonight brought me back to the reality we are facing. A few well spoken prayer requests and nice blog posts don't cut it. We are facing a battle with Ann Louise's body and a battle with Satan's grasp of our minds and fears and anxieties. I've asked you for prayers before, but tonight I beg you for them. Pray for our MRI tomorrow. Pray for our hearts as we miss Henry. Pray for our minds as we continue to endure the anxiety of what lies before us. And please, pray for the peace of God to come into this place, that hope isn't found solely in doctors but in God alone.

You, my sweet friends, have prayed us to the cross. Now we must pray us past the grave.

Bridge of Hope

For those of you who have followed my blog for some time, you may remember this post I did almost two years ago after Cash and I hosted two boys from Uganda. We were heartbroken when they left, and we have thought about them daily since they have been gone. Last year about this time we learned the organization they were with was having issues and ultimately was dissolving. We had no idea what the boys were going through or if they were getting to go to school or what.

Cash texted what we thought was their choir leader Henry's number. He even got a few responses. Later on we found out this was not Henry we were communicating with.

So for about 6 months we were crushed and thought we would never know what the boys were doing or how they were being taken care of. We had to hope in the Lord that He had His mighty hand on it.

This summer I received an email from our priest that said the previous organization was referring a new organization to the sponsors. The new organization, Bridge of Hope African Ministries, would take over sponsorship of all the former Asante choir children and several other children in the villages. I immediately got online to search this new organization and could not believe my eyes when I saw Henry--the former Asante choir director--was the founder of BOHAM! I emailed the address listed for the organization and in no time heard back from Henry. He could not believe we had found him!

What we did not know last year and during this entire time of waiting to know what was happening was that Henry had started BOHAM even before Asante dissolved. He felt the Lord calling Him to do this bigger work. In the interim Asante dissolved and would ultimately recommend BOHAM, but they could not give any church or sponsorship information to BOHAM. Henry had taken in most of the choir children, in particular one of the boys we hosted--Eric. He asked Eric if he remembered Cash and I, and Eric responded, "Uncle, how could you even ask me that? Of course I do!" He told Eric he wanted so deeply to find us but was unsure how he was going to.

Once we had gotten back in touch with Henry this summer, we learned the boys were doing well and would still be going to school this fall. Henry even offered for us to skype with Eric, but it was in the midst of our initial doctor's appointments with Ann Louise so time just fell away from us. By the time we had picked ourselves back up, Eric had already left for the fall term of boarding school.

Henry emailed that he would be in the States from October-December, so I worked with our priest to get him scheduled to come to Midland and speak at our church. I am still in shock that after all this time and all the distance we were able to host Henry for nearly a week. He was a light in our house during that time, always singing whether he was working in his room or in the shower. Always singing.

We were able to give him a good West Texas welcome starting with Friday night football.

Midland High vs. Odessa High

On Saturday morning members of the clergy, missions team, and vestry came over for brunch to meet Henry and get to know more in depth the ministry he has started in such a needed place in the world.

Henry explaining BOHAM and life in Uganda to members of the Vestry

Later that day Cash took him to the gun range, because we live in Texas and Henry wanted to get the whole Texas feel. He shared that only a select few can have guns in Uganda, so this was pretty big for him to get to go to the gun range. They shot rifles, pistols, and the AR. I think they both had a good time!

gun range

On Sunday he spoke at both church services and shared his story. At 3 years old he lost both parents and was taken in by his grandmother. She was put in touch with an orphanage who connected Henry to the Afriacan Children's Choir. He toured with them until he was 7. Afterwards he was able to go to school and ultimately graduate from college. When you listen to his story and how he vowed to God to give back after what others had done for him, you cannot help but feel as if you need to do something. Our church and the people in it were amazing to BOHAM. They really stepped up and let God do the rest.

getting sponsors for all the kids!

That night he got to share his experience and ministry with my in-laws. They had met the boys a couple years ago and were excited to be back in touch with such an awesome ministry. I could sit and listen to Henry share his experience and watch their expressions every day. It is truly something incredible to get to be a part of, even for just a short time.

sharing with the in-laws

Little Henry loved Uganda Henry being in our home. When Uganda Henry would start singing in the back bedroom, Little Henry would crawl as fast as he could with his head down trying to get to his room before I scooped him up. He loved when Uganda Henry would pick him up and play with him. I loved sitting back and watching two worlds come together. Perhaps the most incredible part of the entire week to me was thinking of how God orchestrated such different lives to be a part of the same thing. Cash and I growing up in the States have no real comprehension for what Henry has seen and done in his life. But God allowed us a moment of time into that life where we could give what we had--a house, a few meals, a friendship.

the Henrys

Already we are missing our friend and the joy he brought into our days. We cannot wait to visit him in his homeland (one day--when I am finally not pregnant! ha) and see all of the children. Our hearts have forever been torched with a love for the people of Uganda.

If you would like to hear more about Henry's story, the mission of BOHAM, or how you can sponsor a child please visit their website: https://boham.org/. You will never regret opening your heart to such a precious man and ministry.

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!