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. 

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.

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.

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.

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! 

Snoogle!

Two pretty big things happened this week and I am so excited to share...

First, sleeping started to become a little bit more of a challenge so I was waking up a lot at night to reposition. Sleeping on my stomach is not an option anymore and all the books tell you sleeping on your back is not safe at this point so I found myself flipping from side to side all night. Lack of sleep for me, means lack of sleep for the hubs. So we made a trip to Babies-R-Us and made a little investment....

I call it my "Chubby Hubby" and it has proven to make sleep a little more peaceful in our home! It comes highly recommended from me!

The second big thing that happened this week...

I felt our baby girl moving! I think I have been feeling her for a couple of weeks but since I am a first time momma, I wasn't really sure what I was feeling. Well, the hubs was not home on Saturday so I was laying in bed and there was no denying that what I was feeling was our baby girl. It was the strangest yet most incredible thing that I have ever experienced. I texted the hubs to tell him and then I just layed there and experienced the moment. 

What an incredible feeling. What an amazing little miracle.

20 Weeks

Half way there!

On one hand it seems like the first 20 weeks flew by but on the other hand it seems like I have been pregnant for a year. Strange how that works, right? I have felt great through my whole pregnancy...no morning sickness, no nausea, no weird food cravings/aversions (expect one really weird week where I ate 3 fish sandwiches from McDonald's. I have not had McDonald's in years and I don't really like fish but apparently I needed 3 in one week).  My doctor did prescribe migraine medication to me as I had pretty intense headaches around 14 weeks but I think it was a combination of stress, anxiety, and lack of sleep. Overall, I can't complain about how I have felt!

We want to say again that we are so very grateful for all of our friends and family who have been thinking of and praying for our baby girl. We are so blessed.

Here is to hoping that the next 20 weeks go a little smoother for our sweet baby girl!

We Have Some Big News:

We are expecting a baby girl in April! 

We are so excited to hold our precious little girl. We know she will be just perfect but the pregnancy has been anything but...lets start from the beginning...

 We were so excited (and a little surprised too!) to find out that we were pregnant! 

I had been really tired so while I was at work, my friend Casie encouraged me to take a pregnancy test. I tried to convince her that I was not pregnant but I took the test anyway.

The hubs patiently waited for the timer to go off so that we could look at the pregnancy test! 

 One positive test was not enough for me...four tests later, it was confirmed...we were having a baby! I was beside myself with excitement! I was a mommy!

We had our first appointment with our OB at 8 weeks and everything looked perfect! We told our family our exciting news over Labor Day Weekend. To say they were excited would be an understatement! My mom was squealing, my grandma started crying, and the hub's momma was is disbelief! Our baby was instantly loved!

At 12 weeks, we went back to our OB for our next checkup. Our OB was attempting to find the baby's heart tones with the Doppler but the baby was not cooperating. To ease our anxiety, the OB decided that we would just get a quick ultrasound to make sure all was well. 

The ultrasound tech instantly found the heart tones and we heard our baby's little heart beating away at 164 beats per minute. We thought we were good to go, but the tech said she was going to get the OB. They both stared at the ultrasound monitor with concerned looks on their faces. Finally, the OB said that she found something that she thought was "concerning" so she wanted to send us to see a perinatologist. I bawled.  She made lots of calls and they were nice enough to get us in to see the perinatologist immediately. The perinatologist did another ultrasound and she told us that it appears that our baby has a cystic hygroma. 

We were overwhelmed, confused, sad, and scared. 

We met with a genetics counselor and she explained what a hygroma was and what it could possibly mean for our baby. We faced the potential of a miscarriage, chromosome abnormality, genetic mutation, or heart defect. We had a chorionic villus sampling (CVS) to look at the baby's chromosomes to see what we were facing. 

48 hours later, the genetics counselor called us and told us that the baby's chromosomes were normal and that we were having a girl. Normal chromosomes meant that the hygroma was not a result of a chromosome abnormality like Down's Syndrome, Turner Syndrome, or Trisomy 18. We learned that just because her chromosome were all normal didn't rule out the possibility of a heart defect or a genetic mutation. We also learned that the risk for miscarriage is very high in babies with a hygroma. We were given all our options but we were so confused.  The unknown is so overwhelming. 

The next ultrasound was scheduled at 18 weeks so for the next 6 weeks we tried our best to keep going. There were lots of tears and sleepless nights. As a pediatric nurse you see and know too much to stay sane when you find out that something could be wrong with your child.

We had our followup appointment with the perinatologist on Thursday (11.15.12).  The plan was to look at the hygroma (to determine if it was getting bigger or smaller and if any hydrops had developed) and to look at the structure of the heart. The tech measured every single thing on our baby girl. The ultrasound lasted an hour and a half!  I laid there for an hour and a half watching her click and zoom on the ultrasound while simply nodding at the machine. When she finished she said, "it looks like the hygroma has resolved and the baby's heart looks structurally normal."  I waited for the "but" and sure enough that was the next thing that came out of her mouth, "but there are few things that I think are concerning so I need to get the perinatologist." 

I immediately started crying. 

The perinatologist came in an did his own ultrasound while mumbling to the machine. I heard him drop a couple of terms. I could not keep quiet any longer so I started the string of questions. He said that he was concerned about a possible Dandy Walker Variant on her cerebellum. Again, as a peds nurse when I hear Dandy Walker I immediately get an image in my head of a patient that I once took care of. He assured us that she does not have Dandy Walker Syndrome but could potentially have a variant. He said that he can't confirm that it is there because at some angles it looks normal. I asked what a variant would mean and he said worst case would be slight development and motor function delay but that sometimes a variant doesn't even present with symptoms.

The other thing that he mentioned was that she has a bilateral cleft lip. Twelve weeks ago if you would have told me my baby would have a bilateral cleft lip, I probably would have been crushed but given what could have been with her, I will take a cleft lip. It is something that is surgically repaired and she will be set. That, I can handle. 

Because of the possible variant and the history of the hygroma, I will have an MRI at 24 weeks to better visualize her brain. We will also have an ECHO at 24 weeks to confirm that she does not have any minor heart defects. Unfortunately we can't rule out any genetic mutations yet but they don't have any reason to believe at this point that there is a mutation. 

I am sure that I will never stop worrying until I can see her for myself but the baby girl got her first outfit this week, we finally started the name conversation, and I looked into starting her registry. It is time to prepare!

I am going to be a momma to a very precious baby girl.

She is so very loved (yet grounded for all the stress that she has caused this far).