On Friday, we met with the Fetal Health Team at CMH. The hubs and I had several difficult conversations leading up to this meeting and desperately tried to prepare our hearts for what we could possibly hear. It is heart wrenching to have to talk about death and dying when you are preparing to bring life into the world. It is never what you imagine when you think about getting pregnant, becoming parents, or having a baby.

 There are no words to describe what it is like to prepare to go to a meeting to find out the fate of your unborn child. I made a list of questions and tried to ready myself for what would be. Despite what would be presented to us, it was and will continue to be the cry of my heart that Baby V knows just how loved she is. 

The hubs, my mom, and I set at a large conference table with 3 doctors, a fetal health nurse, a genetics counselor, and a social worker and listened as they explained Baby V's anomalies. There were heavy words said...intubation, oscillation, ECMO, surgery, cognitive deficits, renal failure, hemodialysis, transplant, quality of life,  and on and on and on. The prognosis is not good.

There will be may more difficult conversations to come as we try to process all that we were presented.  Regardless of the road to be traveled, Baby V has a momma and a daddy who will love her forever.  All we want is what is best for our precious daughter.

My parent's next door neighbor read my blog about Baby V and then brought this over...

She wanted Baby V to have her very own, handmade, baby blanket. I am so touched. Becky, if you read this...thank you. Thank you for caring so much about our baby to make sure that she has such a beautiful blanket.

26 Weeks

This is the week. 

I am so ready for the appointment at CMH yet at the same time, 

I have no desire to go. 

Thank You.

When I started blogging about Baby V, it was a way for me to let my thoughts out. 

Never did I imagine the number of people that would actually read my thoughts...or how many people would respond with love, support, and prayers...or how many people would take an interest in our precious baby girl.  I am simply amazed. We are blessed with caring and supportive people surrounding us. I cannot say thank you enough but from the bottom of my heart, know that I am so appreciative.

We have a consultation appointment set for next week with the Fetal Health Team at Children's Mercy. We will be meeting with a neonatologist, perinatologist, renal doctor, surgeon, a genetic counselor, a social worker, and a member of the palliative care team. The team will present us with what they feel are Baby V's anomalies and their recommendations (whether that be medical interventions or palliative care).  I pray that this meeting will provide us with direction.

In the meantime, we will continue to have weekly ultrasounds with the perinatologist at Saint Luke's to check the amniotic fluid levels and the size of the kidneys. Today, the fluid level was still within a normal range which is a sign that her kidneys are still functioning. 

Baby V's heart was beating at 162 beats per minute and she weighs 1 pound and 15 ounces. She is still just as active as ever in her comfy, cozy womb.

I am not sure where to start this post. It makes my heart so sad and full of worry just thinking about the future. I am so grateful for my hubs, my mom, and our family and friends who have surrounded us with love and support through the ups and downs the last couple of months. 

At our 22 week ultrasound with the perinatologist, things were looking good for Baby V. We knew she had a cleft lip and potentially a palate too but the only other thing they wanted to "keep an eye on" were her kidneys. One was measuring 4mm which was appropriate for her gestational age but the right one was slightly larger at 6mm. The perinatologist was not overly concerned because she said it could be slightly dilated because of how she was laying. The plan was to monitor the kidneys but other than that, her brain looked great, she was measuring appropriately, the hygroma had resolved, and she was just as active in her little womb as she could be. The 22 week appointment had been our best appointment to date, we were so elated. It had been a bumpy pregnancy but things finally seemed more optimistic and this momma's heart was overjoyed.

At 24 weeks (12.26.12), we went back to the perinatologist's office for an ECHO. They didn't anticipate anything to be wrong with Baby V's heart but cystic hygromas are associated with heart defects so an ECHO was needed just to confirm her little heart was healthy. The ECHO went great and the cardiologist said her heart was "perfect." The hubs and I were so excited but they didn't give us the green card to leave so we sat in the ultrasound room for a few minutes not sure if we were free to go. I wiped the ultrasound jelly off my belly and gave Baby V lots of praise for her healthy heart! As we debated about whether we were just supposed to leave, in walked the ultrasound tech and the perinatologist. The perinatologist decided that he wanted to do his own ultrasound (he was not in the room for the ECHO, just the tech and the cardiologist). He started at the top...her brain looked great, she had cleft lips, her heart was great, but then he stopped. Her kidneys which two weeks prior had measured 4mm and 6mm were now both well over 20mm. He said he gets concerned when the kidneys exceed 10mm because they should be around 4mm so to be 20mm bilaterally was baffling to him. Her bladder was full and the volume of amniotic fluid was sufficient so he said she was not in renal failure yet but he could not determine why or how the kidneys had become more than five times the normal size in just 2 weeks.  We had originally had an MRI of Baby V's brain scheduled for the next day which they were planning to cancel because her brain looked good but rather than cancel, they decided to do a full fetal scan to see if it could be determined why her kidneys were so dilated. The perinatologist anticipated finding a blockage or stenosis but the whole situation was baffling to him. The hubs and I held it together pretty well at this point. Obviously we were concerned but we were trying to stay optimistic until we had more information.

I checked into the radiology department at Children' Mercy at 9:30 on Thursday morning and the scan lasted about 45 minutes then I went back to work. They told me in advance that they would not give us any info immediately after the scan but that the radiologist would read the scan and then update our perinatologist and then he would call us. We were told to not anticipate a call until probably Monday. As I was getting ready to leave work on Thursday, the perinatologist called. All I could do was listen, say ok, and cry. My heart sank.

On Friday, I went to Medical Records at CMH and obtained a copy of the MRI report so that I could read it for myself. It was hard to read knowing that it was not just an MRI from some patient that I was taking care of, but it was my precious baby girl. 

Baby V has a right sided diaphragmatic hernia which allowed her liver and intestines to invade the area which should contain the right lung. She has right sided pulmonary hypoplasia which essentially means that the right lung did not develop because there was no space for it. She has a mediastinal shift which resulted in a small (for gestational age) lung on the left side. Her kidneys were markedly dysplastic. The left measured 4.3cm and the right 2.6cm. Both kidneys contain cystic lesions and minimal renal parenchyma was noted. A small amount of subcutaneous fluid, mostly likely representing hydrops, was also found.

Our perinatologist recommended that we followup with the Fetal Health Team at CMH. Currently, we are awaiting an appointment.

Her future is so unknown, she has so much to overcome. It is more than this momma's heart can bare to think about it all. I lay in bed at night and feel her moving and fight back the tears. She is my baby girl.

Baby V, your momma loves you so very much.

2013...

This year, I am grateful for my very best friend.  I love him so much. 

 

24 Weeks

 

This week brought lots of tears and uncertainty. The ultrasound and the MRI provided heartbreaking news about Baby V and we are awaiting an appointment to followup with the Children's Mercy Fetal Health Team. I will share more at another time but right now, this momma's heart is heavy.

Keep Baby V, her momma, and her daddy in your prayers.

Merry Christmas to you and yours! 

I hope this season finds you in a happy, healthy, and cozy place. 
God Bless! 

how far along:

22 Weeks

symptoms : 

Nothing really. 

I get pretty tired when trying to get stuff done around the house but that is about it.

cravings/aversions :

Not much here either. My diet has pretty much stayed the same since before I was preggo.

movement :

Yes! I can totally feel her moving around in there. I really notice it at night when I am laying in bed. I can't wait until the hubs can feel her move!

sleep : 

Pretty good thanks to my Chubby Hubby. Totally worth the investment.

looking forward to :  

Christmas! All my siblings start to trickle home over the next week and I love it when we are all able to get together.

worries : 

Still waiting on the results of the genetic testing. We should be getting the results soon. 

best moment this week :  

The ultrasound. Her little heart was beating away at 160 beats per minute and she is weighing in at 1 lb and 1 ounce. It was our most positive ultrasound to date! Good work baby v! 

We had our 22 week follow-up ultrasound with the perinatologist today.

I always get nervous heading to appointments but today both the hubs and I left feeling really good! The ultrasound tech and the perinatologist were different from the last two times we were there so it was a new prespective on our baby girl and the report was good! There were no structural abnormalities in her brain (no hygroma and no variant) and her heart looks good too! She is right on track for her growth and development for 22 weeks gestation. It did appear that one kidney is larger than the other but the perinatologist said it would be something that we just keep an eye on. They tried multiple times to get a good image of her little face with the 3D machine but the little stinker kept her hands in front of her face the whole time! 

What a relief to hear something positive about our little one. 

It is always so neat just to sit back and watch her move...what a little miracle!