Dear Tennessee Grace

Before I start where I left off a few days ago. Today is day 10 baby girl! you have been such a fighter and I am so proud of you!! Today however has been the scariest day so far. We will get into my daily blogs of your nicu stay as soon as I catch you up with my exciting pregnancy journey. But today, you are struggling. Through out the night last night you became bloated and now have a very serious and scary infection. Doctor used the word “very concerned” multiple times and when mommy uses that with her clients at work, that means mommy isnt sure how good the prognosis is. I dont like “concerned”. As your mommy I am more than concerned, I am terrified. As I sit by your bed, I am watching your chest rise and fall with every breath and pray every 13 seconds it seems like. You have had a big morning. They have intubated you, sedated you with morphine, placed an arterial line for better access to your blood, given you a blood transfusion and started you on multiple antibiotics to treat your necrotizing enterocolitis. I know you are such a strong fighter and mommy is trying her best to stay strong too. You look so peaceful but I dream of the days when your’e running around picking wild flowers with mommy, playing with your sisters or cousins or riding your pony for the first time. We have so much planned for you baby girl, we pray the clock speeds up for you to heal and grow but you are teaching me patience and overwhelming love every day. I’m so lucky you chose me to be your mommy…. As i wipe my tears from the heartache that today has brought, lets go back to where we left off and Ill update more about today when we get there in the blog. Writing about a different time allows me to escape today’s reality and is therapy for me, its also inspiring to me to reflect on other hurdles we have beat to encourage me to stay strong for today’s struggles.

Let’s get back to where we left off during pregnancy.

April 30th… the most exciting appointment of our whole pregnancy. We are 16 weeks along and daddy is SUREEEE HOPINGGGG for a baby boy! Will you be a little boy that daddy can take hunting and fishing and hiking and do all the boy stuff with or will you be mommy’s little mini me… the girl who wears bell bottoms and bows but also hunts and rides horses and does “tough boy” stuff too?? We are so anxious! We joke about daddy having more grey hairs if you’re a girl as your sisters are 17 and 14 years old right now so daddy feels like he needs boy back up! haha

We arrive at the appt full of excitement! Today is the day! We had cute gender reveal plans. Mommy planned to add special medicine to IV bags (blue or pink) to tell her staff if you’re a boy or a girl and daddy thought about shooting at a target that would turn blue or pink. I’ve told you a little bit about mommy by now but what you will soon learn about daddy is he loves firearms, is a police officer and trains other police officers about gun safety. So we figured it would be a cute idea for daddy to shoot a target and blue or pink powder would explode to show the world what you are! So many silly cute ways to reveal your gender. However, truth was, we are already so in love with you no matter what. It is still early so I cant feel you kick yet but I can feel that you love me too.

We go back to the exam room and the nurse does her routine blood pressure check and checks your heartrate- its perfect as usual. 🙂 Her mood seemed quiet but I didnt think much of it. She stated all of our screening results are back and doctor would go over those results.

Dr. Weiss comes into the exam room and sits down. My inner doctor instinct radar went off. Why is she sitting down? I only sit down if I have to discuss something serious with my furry patients and their parents… this is when “routine screening became not so routine”.

She advised us that one of the chromosomal conditions came back as abnormal. Chromosome 22q11.2 deletion syndrome were words mommy, daddy or nana had never heard. I felt myself leaning in to understand and hear every single syllable Dr. Weiss was explaining. She stated this test still needed to be confirmed with an amniocentesis but the blood screening test is typical “pretty reliable”. She started to describe what this chromosomal condition is- its horrific for lack of better terms.

When most people think of chromosomal abnormalities or defects with babies, they tend to think of “down syndrome”. However, with modern day medicine down syndrome is manageable and very rarely is fatal or severely debilitating. Chromosome 22q11.2 microdeletion is far worse. It effects nearly every organ of a growing fetus- brain, kidneys, liver, digestive system, immune system, respiratory, pancreas, musculoskeletal, neurologic TO NAME A FEW… Babies born with this condition often need multiple surgeries to sustain life and even then, they may never live a normal healthy life. Most of the time, they spend the majority of their life in children’s hospitals and are basically artificially kept alive with medicine and procedures through out their life. Those that don’t receive care die at a very early age. It can be fatal or severely debilitating with a lot of suffering involved. Dr. Weiss was very honest about this condition and recommended termination of pregnancy but advised we should pursue confirmatory diagnosis via amniocentesis with high risk doctor first. I asked her “What would you do if this was your child?”. Her response was quick and blunt, “I’d terminate.”

Mommy, daddy and nana walked out of this appointment quiet and in shock. This cant be happening. After all we had been through to plan and try to conceive you, there is no way you are leaving me. That just seemed so unfair. Dr. Weiss texted her colleague at the high risk pregnancy center in phoenix that evening and we had an appointment the following week for the amniocentesis. I know this is a big word but it just means a big giant needle will be poked into mommy’s belly to sample the fluid that’s surrounding you. This will confirm or deny our worries and will allow us to make the best and most fair decision for you. That evening I went to nana and tata’s house. I walked in the door and sobbed in tata’s arms as if I was still a little girl. I will never question God but I will always beg for understanding. Tata cried with me, we sobbed together at the reality that we may have to say goodbye before ever holding you. Shattered would be the most appropriate word to use to describe mommy and our whole family at this time. The 7 days of waiting for the specialist were torture but we remained optimistic. Nearly every night was my time to cry and mourn the potential reality. I still went to work to distract myself but the drives home were my time to unwind and face reality once again. Many days I would walk in the door to daddy and he knew by my swollen eyes that I had cried all the way home… he was always ready with open arms to cuddle us and remain optimistic, even though I know daddy was terrified too. He always finds a way to be the strong one, I cant wait for daddy heal your ouchies like he always does mine.

May 10th

We meet Dr. Patel. High risk doctors are so impressive to me- so much schooling and knowledge. He welcomes us into his office, a big beautiful office with dim calm lighting (like you see in the movies) to discuss the possibilities and realities. He discusses in depth the chromosomal microdeletion condition that we are faced with, otherwise known as Di Georgi syndrome and warns us of the harsh reality of your future if you have this condition. Again, its horrifying. I wouldn’t want anyone, especially my child to ever endure this reality. (every parent makes different decisions and I am not here to make decisions for other parents, but for us, we could not allow you to endure such suffering after birth. It seemed more selfish of us to do that to you than to let you go). Daddy said it best when he said as your parents we would rather suffer the pain of losing you than to have you ever feel pain or suffer and endure all that is encompassed in this disease. Dr. Patel asked if we wanted to go ahead with the amniocentesis, without a doubt the answer was yes. I didn’t care about the pain of the procedure, I wanted to know FOR SURE before we made any decisions.

The procedure was painful. A long giant needle being inserted into your sac. I don’t think I ever laid so still. Any movement could cause hemorrhage for you or me and this was my first time doing my best to protect you from harm. The ironic thing is I think you knew how important this test was also. Every ultrasound we had, including earlier in this appt, you were always wiggling and dancing in mommy’s tummy. However… the minute Dr. Patel slid the long needle into my tummy, you stayed so still and calm, not moving a muscle. It was as if you knew Dr. Patel needed a good sample in order to get us some answers.

We were sent home and told Dr would call us in 5-7 days with results. During this time, mommy stayed home from work as she couldn’t imagine getting this type of call while trying to do medicine at work. The test had multiple delays which led to multiple meltdowns and frustration. I started to notice my belly grow and I was stuck between wanting to celebrate and wanting to be so angry at the reality of possibly having to say goodbye. Despite this, you continued to grow. It was as if these two weeks is when you grew the most. I didn’t want to look at my body changing because my attachment to you grew more and more everyday and I feared the more I bonded, the more the heartbreak would be if we had to say goodbye. But bonding comes naturally, so regardless if I looked at my growing belly in the mirror or not, I loved you more than I had ever loved anyone in my entire life. Looking back, this was a rollercoaster. Many nights I laid on the floor of the shower crying until I couldn’t cry anymore, trying not to ask God why but at the same time wondering why. At the end of the day, I am human.

3 weeks had past since our appt with Dr. Weiss. THE CALL finally came. the phone rang and I ran to get daddy. Dr. Patel said the first test came back as a BALANCED translocation of chromosomes between 11 and 13. All of this was new to us. In short, when a baby has a BALANCED translocation of chromosomes, it doesn’t usually cause any defects!! This is very different than UNBALANCED translocation. This means as long as all the genetic information is there, it doesn’t really matter where it is in the chain of DNA- which to mommy’s doctor brain is FASCINATING! Part of your chromosome 11 is attached to 13 and part of your chromosome 13 is attached to chromosome 11! But its all balanced!! There is one more specific test for the Di Georgi syndrome itself but Dr. Patel is cautiously optimistic that you have beaten the odds of the horrific diagnosis! Our prayers continued…

Later that day mommy logged into your portal online. I saw results for the Di Georgi syndrome, it was NEGATIVE. Mommy reads blood work all the time, she knows its negative. but she needed Dr. Patel to tell her. So I called the doctors office again, doctor was busy so the wait continued for confirmation. At 6:30pm that evening the doctor’s phone number came across my phone. I answered and he confirmed- you DO NOT have Di georgi syndrome. You are going to be OK and we don’t have to say goodbye to you! I hung up the phone and stared at the wall for over 3 minutes in complete silence before I realized the nightmare was actually over. Then the tears came. I cried and cried and cried. I called daddy at work and we both cried, daddy rushed home to hug mommy and the biggest feeling of relief had hit us like a ton of bricks. I called nana and titi and tata. Tata cried with me on the phone and thanked Jehovah for answering our prayers. I continued the phone calls to our closest friends and family who had been praying so hard for you too. 🙂 Everyone is so ready to love and spoil you now that we can all take a breath and mommy can continue to love and protect you… now I was finally ready for you to kick me and tell me you are doing good in there! but that didn’t come for another few weeks 🙂

From this point further, we could take a breath of relief. That night I undressed to get in the shower and looked at the small belly I had been avoiding for 3 weeks, I smiled and talked to you. I told you how much I love you and how perfect you are. I told you I would do everything in my power to protect you forever. You are my everything and I get to keep you! Off to the shower we went, I cried and cried, but this time it was tears of relief and thanking God for the biggest blessing. You.

The next two months were uneventful. Our frequent visits to see you were amazing.

August 16th is our next update…