Life in the NICU and a Diagnosis

It has been 7 days since we've been blessed with our little miracle, yet it feels we've lived in the NICU half of our lives. The days in here go by so quickly but are so long at the same time. I think we are starting to establish a routine as we figure out the best way to care for AnnLouise yet spend time with Henry.

I've been holding off on publicly updating on her condition until we knew the severity of it. After delivery some new things came up we weren't expecting. I think I had in my mind that because she was a miracle then she wouldn't have any complications and would be out of the hospital in a couple of days. Instead we were given a diagnosis that, sure, could be much worse on the severity level. But it is still a new world in which we are embarking. We've had to get our minds around not only the diagnosis but also how severe her case would turn out to be. We are glad to have a diagnosis, but it is life changing to know what it is.

Her cousin Addi knitted a cap for her. 

Our sweet baby has Prune Belly Syndrome. Don't Google it, I promise. You will see pictures of all sorts of things and babies at the most extreme level. This is not AnnLouise. They think she is mild to moderate. So don't go scaring yourself looking at pictures.

Basically she does not have abdominal muscles, so her intestines protrude when she coughs or sneezes or does anything that would typically tighten the stomach muscles. Some kids look more severe than she does; her obvious physical difference is an oval shape in the center of her abdomen where her stomach muscles do not connect. It looks more like a hernia.

Because she has no abdominal muscles, she was unable to empty her bladder completely on her own, both in utero and now. This explains why she had such a big bladder! The urologist attempted a couple different methods of relieving this issue, and after a surgery on Friday she is set for at least a few years.

The neonatal team has monitored her so well. They start their rounds at 9 each morning, so we try to get up here and talk with them each day. They have steadily watched her creatinine levels which show her kidney function. For Prune Belly babies the biggest obstacle in life is forever their kidney function. But just like she did for 9 months, AnnLouise has surprised them with how stinkin' good her kidneys have done.

Prune Belly Syndrome is very rare. Only 1 in 40,000 babies will be diagnosed with it. In that number less than 5% are girls. Many of these babies don't make it to birth. Many who do have renal (kidney) failure shortly thereafter. All Prune Belly babies have to watch their kidneys throughout life. 1 in 3 need a kidney transplant at some point.

As for her lack of stomach muscles, her life will look different than many kids. She probably won't be a big athlete or be competitive in anything that would involve her stomach muscles. But there are so many things she can do...and we are thankful for that. The urologist has already discussed a possible abdominoplasty with us. It is basically a tummy tuck! We will continue discussing this until the time is right, but ultimately it would take much of that loose skin away and connect her stomach muscles. This would theoretically give her more control of all of her abdominal functions as well as adjust the cosmetics of prune belly. Although, if you ask me, she is perfect and adorable despite that belly!

There is no cure for Prune Belly, but there are management techniques. Her life may not be what we originally thought when we got pregnant. No parent wishes for their child to have to monitor their kidney function forever. But...we praise God she is here. She is our miracle baby. And she is perfect in every single way.

We just got word she may get discharged tomorrow. Those words sound so sweet. As you pray for AnnLouise, we ask specifically you pray for her kidneys. We rest in God's grace and praise Him for AnnLouise's life as well as the friendships He gave us that have meant so much through this time in our lives. Thank you all for loving AL and Henry and us. Thank you for your prayers, your friendships, and your unwavering faith in the miracle God gave us.

Love from Momma

Daddy and his girl 

Until next time...
Avery

Our Journey Through Fetal Medicine: She's Here!

Monday afternoon on a rainy Houston day we met our precious AnnLouise Scout Pullin. She met us with a small cry and big, bright eyes. Every part of her is perfect.

Because they thought she would be small and other complications which gave concern, the doctors were hesitant to ramp up the pitocin too much so the labor was a bit longer than we had hoped. But she did GREAT. The only time her heart rate dipped was toward the end when the contractions were at their peak. I was already at a 9, so they knew they could monitor and let me have her naturally.

Meeting her was surreal. When they laid her on me and I met her for the first time on this side of the ultrasound machine, all I could think was that God knew I needed her and knew the world needed to know of His miracles.

I was worried I wouldn't love her like I do Henry. Not because of her complications but because I didn't know how to love like that times 2. But I do. I hold her hand and stare at her and...love her. I fell in love with Henry in a way I didn't know...the way a mother loves a child. I fell in love with AnnLouise in a new way...in a way I didn't know God loved us. His miracle in her life has given me a new understanding and focus for His absolute love of us.

We got some time with her before she was sent to NICU. We tried to get Henry to be interested in her, but he mostly picked his nose. Finally, he did give her some kisses, but our only picture as a family of 4 was of him screaming. Oh, memories.

Once she headed up to NICU, we knew Henry wouldn't be able to see her again until we went home. Cash and I and our parents have been able to spend time with her as she receives her care. Henry is getting lots of grandparent time. I don't think he will be ready for his vacation to be over!

I wanted to let you all know that our sweet, baby girl is here. She's handling life well so far. Once we know the complete picture of her diagnosis and steps forward, I will update. Right now we are working to get all the specialty teams together. Your prayers for our sweet miracle and our decisions as parents are appreciated. We knew this would be a new stage in this journey once she was here, but nothing prepares you for what you will face. I need strength to speak up, ask questions, and to be her voice. Please pray for that.

Thank you to everyone who has sent messages. We read every single one. Sometimes I read them repeatedly. Thank you to Webb City Baptist Church who sent the most beautiful flowers--you all show God's love so well, and it was felt in Houston, Texas yesterday! Thank you to the Bonner family who has visited and prayed with us this week--what a beautiful orchestration God ordained in giving us long time friends at a time and place where it was desperately needed. Thank you to so many like the group in Hot Springs who held a prayer vigil for her. Thank you to our parents who watch Henry, visit AnnLouise, and keep our heads up when we want to sit and cry. And thank you to our silent prayer warriors. You all have prayed for AL and for us so much. We truly have felt it. Your continued prayers are coveted as we transition into the unknown.

Much love--
Avery

Our Journey Through Fetal Medicine: We're Having a Baby!

Yesterday was all over the map. I couldn't even compose myself to sit down and write an update, but this morning I'm feeling great and like a new woman!

Last week before we left Midland my OB said I was dilated to a 2. Since I had been dilated with Henry for WEEKS, I didn't put too much stock in it. Then as we walked around some sights in Houston this week I told Cash I could literally feel her dropping. My mother-in-law also said she thought she could see from one day to the next that she was much lower.

So yesterday morning we started at the OB here in Houston. She said I had moved closer to a 3 but could feel baby's head. Y'all. I don't know much about delivering babies, but I feel that is pretty low. We talked about inducing, and she said it would depend on my ultrasound that afternoon and what the fetal specialists thought.

At the ultrasound the tech tried to measure AL's head circumference but kept telling the doctor she could barely do it...the baby's head was almost engaged. I was elated that I hadn't gone mad when I kept saying she was super low. I was just hoping she was low enough they would let me have her right then. My body is so ready.

The fetal specialist then came in. We see multiple high risk specialists while in Houston, so we had not met this doctor before. I just kept staring at him and thinking, "Wow. He is very, very handsome." He said he thought he had met us, and I was thinking to myself that no, I would have remembered this.

He said AL had stopped growing. Although she's always been small, she is declining on the charts. Therefore, he didn't see any reason to keep delaying the birth. He went and spoke with our OB and they decided to induce Monday. And life stopped.

It is one thing when your whole body is ready. It is another thing to prepare your heart. We've gone through so much emotion in this pregnancy. Often times I never thought we'd ever really get to meet her, like she was an ultrasound instead of a real baby. But to have a date set and it be within the week, wow.

I honestly had to choke back tears while talking to the doctor. All I wanted to do was go home and hug Henry and tell him he has given me the best 15 months of my life. I was so sad in that moment that 15 months is all I had with H. Every day it is just me and him. He has taught me so much and made me grow and learn as a mom. While I'm elated to see him as a brother, last night my heart was torn when the reality of him not being my baby hit.

After we talked to the doctor a bit more and got some clarification on what it should be like immediately after delivery, we went into a conference room to wait on the nephrologist. While she was a nice woman, our conversation with her had both Cash and I scared. She was not overly optimistic (read: not at all) about AL's time in the NICU or really what her quality of life might be like. After weeks of appointments where AL had been the same and almost forgetting at times she does have problems, this news was like a dagger to the heart. As the doctor talked about dialysis and our need to find a pediatric nephrologist close to our home, I wondered how we had slid backward in AL's outlook. I was just realizing we were really about to have this baby, and now this doctor was painting a grim picture of her life.

After she left, Cash and I both just sat there. What could we say? I finally told him that was hard to hear and was ready to meet the neonatologist to hopefully get some answers. We waited. And waited. For an hour.

My patient coordinator told us she was trying to find the neonatologist but was having a hard time, so she wanted to reschedule us for Friday since I was having my last ultrasound then anyway. I told her we really needed answers and didn't want to leave without them. Another lady in the office assured us we could see the neonatologist on Friday. Again, I said we have been waiting so long for clarity and this doc had skipped us last week and I didn't want it to happen again. They went and got soap opera star doctor, and he sat back down with us.

He apologized about the appointment being canceled but promised he would personally call her and assured she would be there Friday. I think he saw our concern all over our faces, because he got up and shut the door as I told him we were confused and disheartened after our meeting with the nephrologists. We explained that since our urology appointment in December we had expected a few tests and to come home within a few days. In fact we didn't even think she'd be in NICU. But now the nephrologist had told us a minimum of 2 weeks in the NICU and perhaps dialysis and no kidney function.

Soap opera star doc said that surgery (urology) and medical (nephrology) always differ. He understood our struggle as a high risk doctor and as a parent of a child born with 2 enlarged kidneys. He said that it was a large stretch to say AL didn't need a NICU. She needs a NICU. But a minimum of 2 weeks was probably a stretch on the other end too. He said as a parent he would suggest us to expect 2 weeks and then if we get out early we will be happy.

He took his time to reassure us that this wasn't a death sentence and that we would get through this. All joking about his looks aside, I fell in love him as a doctor in that moment. He seemed to really care about our family and our concerns. He didn't brush them under the rug or act like we were overthinking it. He cared deeply. Even Cash said he was his new favorite doctor there, despite his soap opera good looks.

Once we got back to the house and settled for the night, we were able to just think about the whirlwind of the next few days. We are so busy! But we are trying to get in as much sleep as we can knowing the next few months may find us sleep deprived and ready for normal! 😊

I can't say enough how thankful I am for you going through this journey with us. It is your prayers that got us through so many hard times. As we enter into a new stage we reflect on the miracles God gave us, the friendships we strengthened, and the love poured on us. Thank you. Thank you.

Our next post will be about the delivery of our little AL. See you on the flip side!

Our Journey Through Fetal Medicine: The Home Stretch

Today was our next to last appointment at the Perinatal Center out here in Midland/Odessa. Our appointment next week is literally right before we leave for Houston. It feels surreal to be getting so close.

Overall, she looked good today. Her right kidney that was dilated last week had NO fluid in it this week! Her left kidney is still dilated but not showing scarring. Her bladder of course is still enlarged. She is still measuring a bit small but nothing alarming at this point. Her abdomen is pretty big as expected. I told the tech that she looks like her mom--small head and a big belly. 😂

I've been having some contractions that were amped up during a stomach bug the past 20 hours. I was a little concerned I would go into labor before next week. Doc said they wouldn't stop the labor since I'm 35 weeks, but if I do go into labor to call his cell phone. I have no idea what we would do, but I'm just praying now for the contractions to stop until we get to Houston.

Houston also called and scheduled the remainder of our consultations with the various specialists we haven't met yet. The day we move into the house we have appointments with the nephrologist and neonatologist as well as a tour of the NICU. We also have our regular OB and ultrasound appointments already lined up. I'm ready to not sit and wait in a doctor's office anymore and to get this show on the road!

Today our sweet ultrasound tech surprised us with a gift he created for AnnLouise. I've talked about him before and the love we have for him, but I could never describe how much comfort he has brought to us week in and week out at every appointment. Even when one of our recent appointments was scheduled for Midland, he drove to the Midland office to do our ultrasound. That is going above and beyond!

But today. Today he made the whole office cry. We were about to leave when he brought in a package. Inside were pictures of her and a CD with her ultrasound images as well as this beautiful angel that has AnnLouise's picture in it. Engraved on it is:

AnnLouise
May the angels always watch over you

The angels sure have watched over her the past 35 weeks. We know that by the miracle God performed on her body, but we also know that because God put in our path a doctor who is the smartest man I know, a genetic counselor with the sweetest heart I can imagine, and Oscar--our amazing ultrasound tech who saw her bladder had shrunk and walked every hard step and miracle milestone of this journey with us. To have someone who loves your child to that level...that is when you know God had His hand over this before we even knew we'd need it.

We are ready for Houston and to meet our sweet baby, but we will miss the people who have gotten us this far. It is down to the final stretch. Let the countdown begin.