Thursday, January 5, 2017

Our Journey Through Fetal Medicine: Appointment Catch-Up and Sermon Link

I just sat down after our 3rd trip to the doctor in 8 days. It seems like it has been weeks since I've sat down! Cash and I came home from Arkansas on Sunday and left little Henry with his grandparents, so we have been busy getting the house reorganized after the holidays. How is it that we spent zero holidays in Midland yet my house is a disaster? Oh, well. We had fun.

Last week we were in Arkansas enjoying some time on the backroads of Jethro. If you can't find peace on that farm, there may be no peace to be found. It was a great trip that seemed to last but a brief second. During our time there we had to fly down to Houston for a few appointments, so it seemed even shorter. The day in Houston was definitely a whirlwind.

We got the chance to walk through one rental house and drive by another, so we were able to truly see how long the drives would be and what the area around each house was like. I think we have found the house and should be able to move in right after the Superbowl.

Our first appointment that day was to meet our delivering OB. This is now the third OB I have met with during this pregnancy. It is kind of nice because I'm a bit of a baby with pregnancy pains, so I have been able to discuss different issues with each doctor and so no doctor gets worn out with me complaining about various issues. :) Like yesterday I asked the doctor if I had a hernia because it was hurting very bad. He poked me in the belly button and said NO, THAT IS A HERNIA! I screamed a little bit out of shock. Who pokes your belly button? But then he said that I did not have a hernia but probably just a sore tendon. And as far as he knows that's the only complaint I've had this whole time!

We really liked our new OB. She and I really hit it off when she commented how much she liked the Jordans I was wearing. If her love of shoes and presumably basketball shows us what kind of doctor she is, I think we are in good hands.

Then we went upstairs to meet the pediatric urologist. Have you ever watched Dr. Ken? Cash and I love that show, and we both kept thinking in our minds that this urologist was the muscled up version of Dr. Ken. His mannerisms, facial expressions, language...all of it was quite entertaining (in a good way). He also seemed to be extremely knowledgeable about our case and how he was going to go forward.

His PA drew a diagram for us showing the possibilities we may be facing with AnnLouise. Here is what is normal:
Image result for diagram of kidney ureter and bladder
normal kidneys, ureters, bladder, and urethra
So sometimes the ureters may not connect to the bladder properly, and a lot of times that is due to a double ureter system. That just means that one kidney has two ureters (and the other kidney has one). That is where a lot of ureteroceles are formed. However, they do not see a double system with AL; they see a regular, singular system (on both sides--but mostly we are talking about just one side here as the other side shows no sign of enlargement). They do know she has an ureterocele though. The kidney on this side is a bit enlarged but honestly not so much that they have major concerns. They suspect it will be a full functioning kidney, but if it is not then the other kidney should be enough for her. Amazing.

The first thing they imagine they may have to do is go in and eliminate the ureterocele although they do think it is likely all of this fixes itself after delivery. Apparently that is common in urologic issues after birth. 

Another train of thought is that the side with the enlarged kidney did not embed in 3 muscle layers in the bladder as it should, so AL could have some reflux there. They will do a test after she is born that will tell them if this is the case. If so, they can put her on a low dosage of antibiotics until surgery a year or whenever later. Again, it may correct itself if that is an issue.

Overall, the urologist felt very good about her prognosis and thought it was such a minor case that perhaps we could deliver in Midland. He also told us she should get out of the hospital in regular time--like 2 days. I can't even tell you how I felt in that moment. Going from fatal to a pretty normal delivery was full circle for us. To add to it he said she should go on to live a very regular life. I wish you could've felt my heart when he said that.

He gave us a list of 3 tests for the doctors to run when she is born. After those tests he will tell us when we need to be back in Houston (or go to Houston) for evaluation/surgery/etc. We will go to him for checkups every month then every 3 months and progressively begin seeing him maybe just once a year. 

Our last appointment that day was a bit rushed as we had to get back to the airport, but they measured AL and talked to us for just a minute. The fetal specialist wasn't as keen on the idea of delivering in Midland as the urologist was and said he is still scratching his head on all of this. We also learned she is measuring a bit small. It could have something to do with everything else or it could just be she is small. Overall, they are not too worried about her size (and this momma is a bit giddy about delivering a small baby).

The fetal specialist called us the next day so we could go more in depth about everything they have seen. He said he wanted me to meet with our fetal specialist here in Midland/Odessa before we decide either way on where we are delivering. The urologist felt okay with Midland, but the fetal specialist in Houston was still leaning pretty strong on Houston.

Yesterday I went back to my original OB--the one who poked me in the belly button. He said he would be glad to deliver us but felt that overall the team in Houston is best equipped for those just in case moments. Cash and I both feel pretty strong that he is right about that. We have gone through too much for us to make a silly mistake and not be cautious enough at this point. No harm comes from going to Houston but great harm could come from delivering here.

Today we had our weekly appointment with our fetal specialist here. I love him. Have I mentioned that? Every time he comes in the room he asks me how baby is doing. And most times I tell him I think she is good but was kind of hoping he would tell me that. Then he scans her body and always tells us how cute she is. He takes his time and will show us things that are just interesting. Like today he stopped on her heart and was saying how great of a heart she had. Then he showed us a small hole and said all babies are born with this hole that begins to close up once they take their first breath. He paused and said, "Who even thinks about those things?" I wanted to tell him only God does, but I just sat there in awe and wonder of how intricately our bodies are formed. 

He went on with the scan and said he did not believe her ureterocele was there anymore. He thinks it is now scar tissue. That was a first--but after all God has done it is not surprising. He also began to talk about her lack of uterus. I stopped him and asked what he was talking about. He explained that on the MRI it was not clear that she had a uterus, so they have some suspicion she does not have one at all. My heart did not seemed like such a small deal. And I think at the end of the day with what we have been through it is not huge. The doc even said just recently in Houston they have done a transplant on a uterus. They give the woman a uterus when she is ready to have a child and take it out after the child is born. 

While that may not be everyone's ideal version of pregnancy, I think it is miraculous. I hope for her sake she has a uterus so she doesn't go through that later in life, but just the fact that she's going to have a life I am thankful and will take these other issues as they surface. Plus, okay, let's be honest. If she doesn't have a uterus, we don't have to stay up late worrying about her getting pregnant in her teenage years. That doesn't give her a free pass, but maybe we will get some of our sleep back when she's 17 that we are missing out on now. Am I the worst mom ever for that being a thought? If I am, then I am I suppose.

The doc today talked to us again about delivery. He did not think Midland was a good option but that Odessa is. He said he understands if we go to Houston though as I would be stuck in Odessa while Cash flew with AL to Houston in the event anything showed up after delivery. I want so bad to be here in my own bed while I'm 9 months pregnant, but I don't think either of us would feel 100% comfortable if we weren't in Houston with the best doctors in the world. It is not what we desire, but at the end of the day we have to do what is the absolute safest route when all possibilities are put on the table. 

It looks like we are headed to Houston, hopefully about the time the Superbowl traffic is leaving. But it is not lost on us the miracles God has worked to get us to this decision. Right now the toughest decisions we are facing are 1) do we go to Houston and 2) do we get a Moses basket or a dock-a-tot. In October we faced if we were going to deliver at 19 weeks or at 40 weeks and then what songs to play at her funeral. That alone is God.

In my last update I mentioned I would be speaking this past Sunday at the church I grew up in. I have wrestled with the idea of putting the link to the recording on here, because I feel a bit vain for doing so. And my husband told me once or twice my Arkansas accent came out. But I've had a few people mention they would've liked to have been there. Bless all of you who were there in body and spirit---and thank you for encouraging me through it all. I loved hugging the necks of friends, grandparents, aunts, siblings, (former) church family. It was one of the greatest privileges of my life to stand in the same spot of the same church where I asked Jesus to be my Savior, where I stood by my sister as she got married, where I myself got married and to give to those people who poured into me all those years the testimony God wrote for us. When I finished and people clapped, I wanted to let them know that while they were clapping for me I was clapping for them--they were the ones who taught me about Christ from nursery to graduation. They are the ones who imprinted His love on me. They are the ones who smiled for a little, scrawny girl who would fling her dress up during children's specials on Sunday mornings. And when that little, scrawny girl grew up to be a (much) bigger pregnant girl, they loved me hard and prayed for miracles. What an amazing family that has loved me through so much. So, I wanted the applause turned back on them for giving a little girl with knees, elbows, and a deep sense of shyness the courage to walk through this journey and share God's miracles on the other side. 

You can click here for the link to the whole service. It is the January 1 service. While I go by my married name now, it just tickles me that they still have my maiden name on the post. And it is just fine by me if I am always seen as that little, scrawny Avery Kuykendall who left drool marks on her momma's dress when she slept in the pew on Sunday mornings. Somehow through all the naps the sermons got to me anyway. 😊

No comments:

Post a Comment