Addalyn's Birth Story

When we met with our OB at 32 weeks, we discussed scheduling an induction date. It was impossible to pick a date, as it made us feel like we had a countdown until reality would hit us. Our doctor felt it was best to not go past 37 weeks and Nate and I agreed that we didn't want to be induced before 36. Our OB is amazing and she supported every decision that we made. She never substituted her medical knowledge for our parental instincts so the plan was to meet with our OB on March 21st for my 36 week appointment and she would tell us exactly what date we would come in to be induced based on my cervix. Our tentative induction date was Monday, March 25th. 

Such as most things in our pregnancy, plans changed as Addalyn decided she wanted to make her entrance into the world a week early.

My mom and Audrey stayed the night at our house on Sunday March 17th. They had an early flight on Monday morning to fly to Salt Lake City to join Emily in the second leg of her drive home from San Francisco. I got up at 4:30am to take them to the airport and when I went to the bathroom, I noticed that I had a little bleeding. I felt fine - no cramping or discomfort. I asked my mom, who has given birth to 7 kids, and she said that light bleeding is common when the cervix begins to dilate. I didn't think much of it so we headed out to get them to the airport to catch their 6:15am flight. 

As I pulled back into my garage and got out of my car, a gush of fluid ran down my leg. I found Nate and I started bawling. I told him that I thought my water broke and that we needed to call the doctor. He remained calm but he was confused as we had been told all along that I would not know if my water broke because Addy's kidneys were essentially non functioning leaving me without amniotic fluid. I put a load of Addy's blankets in the washing machine (it was the last thing on my to do list for the week), packed our hospital bags, packed Addy's bag (we picked out a special outfit, hat, and socks for her to wear, and also packed special baby soap and lotion for her) and I took a shower. I was hoping that this was a false alarm but as I continued to run around our house trying to get everything together, fluid continued to run out of me. 

I put my scrubs on to prepare to go to work and Nate put his work clothes on too…we were hoping it was a false alarm and we could head to work. At 6:59am, I paged the on call doctor. The OB returned my call about 40 minutes later. I tried to talk to her but I just kept crying. I first explained that I knew my OB was out of town this week (she had told us that she would be on vacation for a few days and it just so happened that she would be out until Thursday) and I explained that my mom and two of my sisters were somewhere between KC and Salt Lake City. As I continued to cry, I explained the blood and the continual fluid and she explained that it sounded like my water broke. I explained that was not possible because I didn’t have amniotic fluid but she instructed us to come in to labor and delivery to be checked. I was overwhelmed and scared. This could not be happening, not without my doctor, my mom, or two of my sisters. Nate held my hand and we sat in silence as we drove to the hospital.

We got to the hospital around 8:30 and we were greeted by a nurse. She asked for us to explain our story and again, I bawled. Nate had to do the talking. The OB checked my cervix, 1 cm dilated and 20% effaced. The first test to see if my water broke was inconclusive. The second test was instantly positive and we were being admitted. Again, I cried. The OB apologized that my OB could not be there and she also explained that they didn’t have my records yet because they were still at the doctor’s office so they were waiting for them to be faxed. Thankfully I had packed a copy of our birth plan that we spent so long carefully planning and I gave it to the nurse.  How could this be happening…no mom, no OB, and no records.

The nurse gave Nate and I a few minutes to ourselves before she took us to the labor and delivery department. He held my hand and told me how much he loved me. We both cried. 

I tried to get a hold of my mom but she was en route to Denver so I kept getting her voicemail. I called Emily and she said she would try to get ahold of mom during their layover. I texted my siblings and called my boss. Sweet baby Addy had a plan of her own and she was ready for us to meet her. We tried to focus on the joy of finally getting to meet our daughter but everything felt so out of control and we thought we would have one more week of being pregnant.

Once we got to our room, the nurse completed all the admission paperwork, started my IV, got some labs, and at 11:40am placed the cervidil. It had been a whirlwind of a morning, we just wanted to go home and come back next week. We just were not ready for what was to come. The nurse explained that the plan was to remove the cervidil after 12 hours, reexamine my cervix, then start Pitocin. Luckly, my mom got a return flight from Denver so she made it back to KC around 1. She left Audrey in Denver and Emily was going to drive to Denver to pick her up and together they would make the rest of the journey home. My dad picked my mom up at the airport and they along with Nate's dad met us at the hospital.

At 1:30, I felt another gush of fluid and when I looked down, the cervidil had come out with the gush of fluids. I put my call light on and the nurse said she needed to call the doctor. She said I could get up to go to the bathroom and to eat. Our dads had picked up Cheesecake Factory. I had potstickers, orange chicken, and a slice of cheesecake. I ate like it was the last meal that I might ever be able to eat and it was delicious.

At 3:30pm the nurse started Pitocin and our families began to visit us.  We were so grateful that both our parents, all our siblings and siblings-in-law, and my grandparents were able to make it to the hospital. Around 8pm, the contractions started to pickup. They were now about 3 minutes apart and more painful on the left side. I told Nate it was so unfair to have to experience labor only to know that our baby would not survive. He cuddled with me and reassured me that I was doing a good job. My night nurse could tell that I was getting more uncomfortable. She was a pretty amazing nurse and I am so grateful for her.  She called the OB in and he checked my cervix,  2cm dilated and 80% effaced.  An entire afternoon of laboring and I was only 2 cm dilated. I was physically, mentally, and emotionally exhausted. The nurse convinced me to get an epidural, she was worried that if I wasn’t able to sleep that the fatigue would set during my time with Addy and she didn’t want me to miss those moments. I got an epidural at 10pm. Our families came back by to say goodnight and we promised to keep them updated on the labor through the night. Nate and I read Addy all the books that we had packed like we have done throughout our pregnancy. Then Nate made his bed in the recliner instead of on the convertible couch so that he could be next to me. He rubbed my head as we feel asleep around midnight. He is the best hubby.

At 3am, the OB rechecked me and I was 3 cm dilated and 100 % effaced.  I tried to go back to sleep but I could tell my contractions were picking up and I could feel them on my left side. I called the nurse in and I repositioned to my left side to see if that helped. It didn’t, I could still feel them. She called anesthesia and he tried to reposition the epidural catheter but still I could feel everything on the left. My nurse was such a good advocate for me, I think she could tell how overwhelmed and scared I was and she did everything possible to help ease my anxiety.  At 5am, anesthesia placed a second epidural and I slept.

At 7:15am, the night nurse brought the day nurse in to meet me. I didn't want to see my night nurse go, she was just so good in our unique situation.  I repositioned from laying on my left side to sitting up in bed. As I repositioned, I felt pressure. I said that out loud and the day nurse looked at me like I had said something crazy. She said she needed to check me. She did and she said I was fully dilated and that she could feel Addy's head. I bawled, I was not ready. The night nurse stayed, stood right by my side, and held my hand while Nate brought me my toothbrush and a washcloth to wash my face. I called my mom to alert the family and Nate called the photographer from Now I Lay Me Down To Sleep. Nate went into the bathroom to brush his teeth and put in his contacts. When he came out my legs were in the stirrups, a light had dropped from the ceiling, and the OB was sitting at the end of my bed. He had a look of pure shock on his face. Everything happened so fast.

7:30am I began pushing with Nate holding tight to my right hand and the night nurse standing at my left side. The infant loss L&D RN grabbed my camera and took lots of pictures for us (I am so grateful that she thought to do this, she captured moments that we will never get back). Nate and I both cried. He held my hand and with his other hand he stroked my head. He was so comforting. 

After 4 pushes, Addalyn Lane Voigt was born at 7:49am. 

The doctor laid her on my belly and a love that I have never experienced came over me. 

Nate and I spent time alone with Addy soaking in the preciousness of our daughter. 

We held her, kissed her, bathed her, and told her how much we will always and forever love her.

She never cried but she looked at peace, an answer to this momma's prayer.

At 9:30am we were joined by Addalyn’s nanas, papas, great grandparents, all her aunts and uncles, and one of her cousins. They took turns holding her, loving her, and admiring how precious she was. Nate's brother Jim said a prayer of dedication. 

There were lots of tears but we were so grateful that our family was able to meet Addy. 
She was surrounded by so many that love her so dearly. 

After our families left, Nate and I spent the afternoon with Addalyn. We held her, told her things we wanted her to know, and Nate even read Frog and Toad to her. 

We wish so much that we could do it all over again. Not to change anything, but because we long to be able to hold our daughter again, to kiss her precious little lips, and to tell her how much she is loved. 

Addalyn, until we meet again may you always and forever know how loved you are. 

We miss you so very much our sweet precious baby girl. 

Meet Our Daughter...

Addalyn Lane Voigt

 

Born Tuesday – March 19, 2013 at 7:49 a.m. 

She went to be with Jesus shortly after her birth.

Addy weighed 5 pounds, 6 ounces and was 18 inches long.

She had a full head of hair, her momma’s chin, chubby cheeks, the most precious nose and lips, and the softest skin. She was simply beautiful.

In her short life, Addalyn was surrounded by her great-grandparents, 
nanas, papas, all her aunts and uncles, and a cousin. 

She knew nothing but love, comfort, and peace.

 

Meeting our daughter created in our hearts a love 

that we have never experienced nor that can ever be replaced.

 

 Thank you to our family and friends who have continued to shower us with love and support during this most difficult time.


Should you desire to do something to honor Addy's memory, donations can be made to Alexandra's House.

The Zoo

Nate loves to read Addy a book called "Zoo Babies" and after reading it one night, we decided that little Addalyn needed to experience the zoo. Unfortunately the 70 degree weather of yesterday did not stick around today but that did not deter us. We spent the afternoon at the zoo and thanks to my hubby, we had the Lion King soundtrack to get us in the animal mood on the way there!

 

34 Weeks

I know I have said it before, but it feels like I have been pregnant forever yet at the same time, it is hard to believe that we are 34 weeks pregnant. 
It is one of those bittersweet aspects to our journey. 

I truly love the feeling of being pregnant but given our circumstance, it is also rather difficult. I get asked random questions all the time. If you have ever been pregnant, you know what I mean. It's inevitable  because people love pregnancy. If it is someone I don't know, I answer the questions then move on...it is my first baby, it's a girl, she is due in April, and her name is Addalyn. On the other hand, if it is someone I know, I feel the need to explain our situation rather then just let them keep asking questions.  I let the wind out of their sails when I explain Addy's story. I watch as their smile fades and tears well up in their eyes. As they begin to apologize, I find myself feeling the need to comfort them. I say things like, "it's going to be ok" and "you didn't know so please don't feel bad for asking." I cry every time I find myself in this situation, it breaks my heart. It is emotionally exhausting.  I wish so much that Addy's story would be different. 

As difficult as it is to be pregnant, I don't think I am ready for the conversations that will ensue post pregnancy. I can picture being asked, "do you have any children?" Surely saying yes would lead to the next question, "how old is she." I would have to answers, "she would have been..."  I don't want to have those conversations either. I also don't want to be driving and face the realization that it is just me in the car. Right now, I spend my time in the car talking to Addy. It is our time and I dread the thought of being alone. I will miss feeling Addalyn wiggle and having Nate rub my belly. I will miss seeing him be amazed as he feels his baby girl kick.  Being pregnant has become a part of who I am so despite the awkward conversations, I am scared to not be pregnant anymore.

I know that I will never be ready to face what is to come but the reality is, my days of being a pregnant momma are fading. As hard as it is to be pregnant, it is equally hard to think about not being pregnant. Oh so bittersweet.

Nate's Alma Mater...

Praying for Peace

Today, the hubs and I met with the palliative care doctor at Saint Luke's as well as the fetal health coordinator to discuss the day when we meet Addalyn. While I find myself fighting back tears during almost any appointment, the unknown is terrifying to me so anything we can do to help alleviate some of the anxiety is helpful. This meeting allowed us to ask questions about things that can be done to help ensure that Addy is comfortable after she is born and to discuss our wishes in terms of aftercare. Strange conversations I tell you but necessary so that our wishes are known in advance which we hope will allow us to savor our time with Addy.

 
As I was driving home from the appointment today, I found myself hoping for a sense of peace and for time so I am asking for prayers for those very things...

Through our journey, we have been faced with challenging and difficult decisions at every turn.  I would never have imagined there would be so many things to plan. When we try to have conversations regarding our desires, we both end up in tears. What we want is to be able to welcome a healthy baby girl into the world and sadly, that is just not a reality for us.  As Nate and I struggle to make all the difficult decisions, I pray for wisdom, guidance, and a sense of peace. 

.........

 We know that precious Addalyn's life is limited and we have heard estimates that she may live between 1-2 hours.  Such is life though that nothing is guaranteed, but this momma desires more time.  We have to fit a lifetime of love, hugs, snuggles, and kisses in before we have to wait our lifetime to see Addalyn again. It is my prayer that we will have time with Addy. No amount will ever be enough that I will be ready to say goodbye but I pray for time with my precious baby girl.

There are no guarantees in life, seize the little moments...

 

Embrace today!

32 Weeks

We had what we expect to be our last ultrasound on Wednesday. There were no changes, good or bad, in Addalyn's condition. Her anomalies were still present and the amniotic fluid was sparse. She is on par with the growth chart for her gestational age and her heart is as strong as ever...142 beats per minute! Her little head is still in the right lower quadrant, her bottom in the upper left quadrant, and of course her hands were up by her face (the lack of amniotic fluid prevents her from moving around).

While it is always neat to get to see Addalyn, the ultrasounds are difficult. I wish I could say they provide comfort but in actuality they make both Nate and I anxious. It is their responsibility to tell us what they see but hearing all the problems just makes us sad. Addalyn wiggles and kicks enough to remind me that she is present (and Nate has actually been able to feel her a couple of times! She is most active around storytime at night...I think she likes being read to!) and since we know her prognosis, we didn't feel it was necessary to continue to have the ultrasounds. The perinatologist was fine with that...she actually said if they were comforting then we could do them weekly but since they aren't then there is no need to keep doing them. Perhaps it is living in denial but I prefer just to feel her moving and watch my belly grow than to go weekly for an ultrasound to have to be reminded of all the problems. 

I love being pregnant. It is simply a miracle that there is life within me. I am fascinated with my ever growing and changing body and the fact that I can feel Addalyn's every move. Nate has commented before that we are going to stay pregnant forever...at least we know that Addalyn is safe within her little womb.

Ultrasound #12...

Sweet Baby Addy's Valentine's Box Overfloweth...

We were simply amazed by the number of Valentines that Addalyn received. Valentines came from family, friends, co-workers, and complete strangers.  Amazing!  

Nate and I spent the evening of Valentine's Day reading all the cards. 

They were so personal...we laughed, we cried, and we were touched.

Thank you for loving Addalyn and for making her Valentine's Day (and her mommy and daddy's too) so very special.

And a big thank you to my hubby who came up with the idea. Addalyn is lucky to have such a special daddy. He loves her so very much.

30 Weeks (One Week Late)

Approaching 30 weeks was difficult for me. 30 weeks represents the last stretch of a pregnancy. It's the last few weeks where you scramble to finish the nursery, gather the last of the baby essentials, complete all the hospital classes, and prepare for a baby. Bitterness sets in when I think about what should be. I don't want to discuss an induction, a funeral home, a memorial service, or anything to do with death. It just simply should not be. I don't know how to answer the challenging questions or make all the arrangements. There are days when I want to just pull the covers up over my head and hide. 

I want to prepare for life without having to be preparing for death.

And her name is...

 Addalyn Lane

The hubs and I had a short little list of girls names and we easily picked Addalyn 
or Addy for short. 

Her middle name is after my youngest sister, Erica Lane. 

When the hubs and I started dating, Erica was 6 years old! Nate is the baby of his family so he didn't have a lot of experience with kids prior to dating me. Erica loved Nate from the day we started dating. When he would come over, she would crawl up on his lap, suck her thumb, and play with his ear. The first few times, Nate was really uncomfortable and weirded out but over time, it just became normal to him. 

We have had almost 15 ultrasounds and every time we get to see Addalyn, she has her hands covering her face. Never have we actually seen her cleft lip because her hands are right at her mouth. Nate decided early on that we needed to name Addalyn after her Aunt Erica because he is convinced that she is in there, ever so content sucking her thumb just like Erica used to do.  

Valentine's Day

A very special message from my hubby and Baby V's daddy...

First, I’d like to thank everyone who has given us so much love and support during this difficult time.  Your thoughts and prayers are very appreciated and we feel so blessed to have such amazing people in our lives.  This week, Aly and I would like to give you the chance to show our baby girl, Addalyn Lane, your love and support for her as well.

If you’re a regular visitor to this page, then you know that little Addy’s time with us is limited.  February 14^th, 2013, will likely be the only time our little girl experiences Valentine’s Day.  The idea that she would never get the chance to make a Valentine’s Day box with her mom, take it to school, and exchange valentines with her friends just didn’t seem fair to me.  So Aly and I decided we would make Addy her very own Valentine’s Day box.  Of course, I wanted it to be as cute as possible, so I just supervised…

We want this to be the most special Valentine’s Day that any little girl has ever experienced, and although Aly did a great job making the box, it’s not quite enough. 

We want you to be Addy’s valentine! 

We’d like to invite you to take a moment to make little Addy a Valentine’s Day card with a short (or long) personal message for her.  We love reading to Addy, and nothing would bring us more joy than to read your message to her.  However, if you’d like for Addy to hear your message in your own voice, feel free to buy one of those cards where you can record a message and we’ll play it for her. 

 

Again, I want to thank you all for your love and support and I want to especially thank you for making our baby girl feel loved.  I hope you all have a wonderful Valentine’s Day!

- Nate

 

  If you need our address, 

leave a comment with your email address and I will email our address to you.

 

It is the cry of this brokenhearted momma's heart that my daughter knows that she is loved. I don't know how to prepare to see her precious face for the first and last time. Will she know in the short amount of time that she in my arms that she is loved? 

Will she know how wanted she truly is? Will she be at peace?

I want, more than anything, for her to feel loved. 

One of the things that I was most excited about in thinking about becoming a momma was the moments when we would snuggle in the rocking chair and read. I remember those moments from my childhood and I was so excited to share those moments with my baby. So excited that I started buying books when I first found out that I was pregnant. Baby V's Aunt Emily and Nana also gave her some books.

While I may never have the opportunity to rock Baby V and read some of my favorite books to her, I don't want her to miss out on those moments. The hubs and I have a pile of books next to our bed and at night, we take turns reading to her. 

She is wanted and she is loved.

One of my coworkers and friends gave me a book recently that truly touched me. 

It is written by a momma that navigated the road that I am traveling before me and she writes in such a way that her words touched my soul. 

What a blessing this book was to me. 

28 Weeks

Do you ever have those moments when life seems to put you back in a place you never thought you would be again? Last night was one of those moments for me. 

When I was in nursing school, we did a community project where we chose an organization in the KC area to research and then educated the rest of the class on the mission of the organization. My group and I randomly stumbled across Alexandra's House. Alexandra's House is a perinatal hospice system for parents pregnant with babies who's life is expected to be limited. My group of peers and I toured Alexandra's House and met with Patti, the founder. We learned all about the services they provide and the amazing resource they can be to overwhelmed parents. 

Last night, I found myself back at Alexandra's House. Pulling up, I wished that I was that nursing student again working to finish an assignment. Instead, this time as my hubs and I pulled up, we were those overwhelmed and heartbroken parents whom Alexandra's House was created for. Never would I have imagined that I would be back on such different terms.

The hubs and I met with Patti, the founder of Alexandra's House. Her passion toward parents like us was evident. She is so genuine, compassionate, and loving. We felt at home. 

What a blessing Alexandra's House is to the Kansas City community. 

http://www.alexandrashouse.com/

When we found out at 12 weeks that Baby V had a cystic hygroma, we were presented with the option of termination. Never would I have imagined that I would ponder termination but I would be lying to say that it didn't cross my mind. We knew that a miscarriage was possible but we wanted to give Baby V a fighting chance...and a fight she has given.

At 18 weeks, the cystic hygroma had resolved and things were looking good. If you have been keeping up with her progress, you know that at 24 weeks, things took a turn in the wrong direction. After many challenging conversations, the hubs and I agreed that we wanted to do what was best for our daughter. She is wanted and she is loved. Hearing the fetal health team talk about all the anomalies and her prognosis, we struggled (and so did they) to think that all the medical interventions are what is best for her. It is so conflicting for your head to tell you one thing but for your heart to tell you something completely different. How do you prepare to welcome your baby into the world knowing that soon after you will be saying goodbye? 

It is to difficult to ponder the unknown and we would never judge anyone for the choice that they make. Trust me, there is no guide for this.  If we could do everything under the sun and know that Baby V would have a quality life, we would. Any expecting momma and daddy would.  We didn't want to play God at 12 weeks and terminate but we also don't want to put her through a mounting list of needed medical interventions believing in our hearts that it won't provide a quality life for her. In the arms of Jesus, Baby V won't struggle...she will be at peace...something we can't provide her here on this Earth.

She is wanted and she is loved.

This momma's heart weeps at the thought of what is to come. 

I have no idea how to begin to navigate the world of palliative care.

I know that I am nowhere near ready to face what is to come, how could you ever be. 

I love my baby girl so very much. 

Happy Birthday to the love of my life...

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.