Sweet Piper Grace

Hello All.

I am breaking my long blogging hiatus to get something important off my chest. I’ve stayed up countless nights trying to decide how I want to word this post. Finally, I just started to type, and let my heart do the talking. Please bear with me, as finding words has been hard lately. This is a lengthy post, but please take the time to read and pray for my little family.

Matt and I have been quietly dealing with some serious issues involving baby Piper Grace for a while now. Issues we have needed to absorb as a family, pray about, and are finally ready to share with you. Please know, as our extended family and friends, that this post is written for you. We struggled with wanting to share news of Piper Grace with everyone individually; but found the task too emotionally daunting.  We are creating a space here for you to be “in the loop,” as well as our prayer warriors for what we are about to experience as a family.

From the beginning…

*At about 10 weeks pregnant - during a routine ultrasound, our doc noticed a small water accumulation on the back of Piper’s neck, called a Cystic Hygroma.  These little water sacs are, on their own, completely benign and go away after birth for the most part. WHAT THEY ARE – are a little warning sign to check for something going wrong with fetal development. Piper was telling us to look closely, so we did.

* At 12 weeks pregnant – Matt and I went to a high risk Perinatologist to do further testing on Piper, and speak with a genetic counselor. We learned that 70% of babies with a Cystic Hygroma have a genetic disorder. To test Piper’s genes, I went through a big ouchie belly poke to culture a part of my placenta (containing Piper’s genetic code.) Then we would wait for results. Terrible waiting.

A couple weeks later, we took a HUUUUGE sigh of relief as we learned that Piper had a complete set of perfect looking chromosomes! Whew! One hurdle down, praise the Lord!

* At 26 weeks pregnant – We went in for one last test to make sure Piper’s heart was ok (another thing docs worry about when a cystic hygroma is present.) Here, we did a tiny baby ECHO to get an in depth look at Piper’s ticker. This appointment would change our outlook on this entire pregnancy.

                - Piper’s heart anatomy & function was all intact and fine…

                - BUT a Congenital Diaphragmatic Hernia was discovered in her chest

                - BUT a Cleft Lip/Palate was discovered

Our plan of care for mom & baby changed right then and there. With these two issues wrong, my care would now be transferred to our (Nationally Recognized) Children’s Mercy Hospital, where I would deliver Piper into the best surgical care possible. We were devastated, scared, and confused.

Congenital Diaphragmatic Hernia – when a hole occurs in the diaphragm, allowing the stomach and some bowel to migrate up into the chest cavity, where it is NOT supposed to be. This crushes one lung, leaving it malformed and almost unusable at birth, shifts the heart to the right of the chest, and cramps the other lung, leaving it compromised as well. Needless to say, with the above prognosis, delivering Piper into the hands of surgeons that would fix this was our utmost priority. This was a physical, fixable problem. After an initial emotional freak out, we began to wrap our minds around what plans were needed for our little babe.

Cleft Lip & Palate - when the upper lip, as well as the roof of the mouth does not complete development, leaving a hole in the lip and palate. THIS, silly as is seems, is what broke my heart the most. No one wants to see their child with a hole in their face. We all want perfect little babies. I was so sad that Miss Piper might be looked at differently until she was 3mo old, which was how long they would wait to fix this. Again, this was physical. Fixable. We could do this.

*28 Weeks Pregnant – Now officially transferred into the care of Children’s Mercy Hospital, Matt and I had a big round table discussion with some serious VIPs. Here, we discussed a few FACTS about little Piper’s prognosis:

                - I would be able to deliver naturally/vaginally. No Cesarean needed. Yay! 

                - To control her breathing, she would need a breathing tube upon delivery (standard)

                - She’d be given 2-3 days to stabilize her oxygen/food intake before surgery

                - 1^st Priority – Surgeons repair Diaphragmatic Hernia

                 - Her lung function, highly affected by her hernia, would be the deciding factor of her survival

                - 2^nd Priority – Surgeons repair cleft lip/palate at 3mo of age

                - Her ability to breathe/feed with a cleft would be a deciding factor of her survival

                - Matt and I were looking at MONTHS in a Children’s Hospital with poor Piper

                - Her prognosis would be very very very touch n’ go throughout this process

                - Again. Physical. Fixable. Scary – but we could do this.

Using lists like above make me feel logical. Clinical.  But we were heartbroken. There’s no way to describe the feeling of having no control of a baby growing inside of you. I want to protect her. Matt wants to protect me. We both are emotional wrecks with worry about our baby’s survival, our family living in wait for recovery, our hearts heavy with the unknown. It has been pure agony.

*29 Weeks Pregnant – INSERT AWESOME FAMILY VACATION HERE! Praise God Matt, Tallan and I got to have a week away with our families in Turks & Caicos to fellowship. This was a great distraction and a huge necessity for our little family. Mom, Dad, Grandma, Mark & Kay will never know the healing they did on our hearts just by being there with us. I am so thankful for that bright spot in the middle of this darkness. We are beyond blessed for the family surrounding us in prayer, helping us with Tallan, and loving us through this.   

* 32 Weeks Pregnant – (THE BOMB)

Matt and I went in for a follow up heart ECHO, as well as a second round table with all surgeons, neonatologists, the cleft team, and cardiologist to discuss final findings/prognosis of Piper Grace. During our Echo, our cardiologist spent 40min trying to attain a measurement of Piper’s aortic arch. We had no idea how important this little tid bit would be during this final round table discussion.

When Matt and I sat down at this discussion, the first thing these experts ask is, “What is your knowledge of what is going on and the prognosis of Piper?” This is when my logical, clinical self spills my guts with the knowledge I’ve listed for you above. This time, I had to mention the truth of what Matt and I had to painfully discuss over the past few weeks: The fact that Piper, with the multiple issues presented to her, was in for a very huge struggle. A struggle she might not win. What a hard thing to say, but we had to take our hearts there to be prepared, and not shocked if a dire situation did arise. 

Upon stating that Matt and I were prepared for the worst of the worst, I saw the doctors sitting in front of me sigh in relief. Then they dropped the bomb on us.

Our cardiologist then spoke up to let us know that one final thing had been discovered. Piper’s aortic arch was not measurable. It was smushed by this hernia, and either too small or twisted behind anatomy where it wasn’t supposed to be. THIS issue is immediately emergent, and would now TRUMP the priorities of diaphragm and palate repair listed above. Rocking our world, and changing the plan, our cardiologist would need to get her hands on our baby first, but will never get the chance.

The aortic arch issue is fixable, but only on a baby with fully mature, 100% working lungs. That’s the bomb – we know that’s not our baby. Piper’s lungs will not be functioning enough to stabilize for the cardiologist to fix her. The bomb. The one last thing. The issue that tipped the scale. The ailment that is just too much. Leaving that round table, the experts in their fields left us with the word “dismal” for Piper’s final prognosis. Heartbreak.

All of a sudden, the wide view of delivery, surgery, recovery, and months of unknown narrowed into one solid black tunnel. Matt and I had prepared for the worst, and the docs had just confirmed we were correct. With her hernia, cleft and heart issues, she will have too hard of a time struggling to breathe to get herself to any surgeon that can help her. All of these issues, all physical, all fixable, have stacked up against her and are too much for her baby body to bear.
Her care plan now consists of making her as comfortable as possible upon birth. The timeframe of life, whether it’s minutes, hours, or a day will not be known until she is here. This is utterly heartbreaking to write, but Matt and I will not have the chance to bring Piper home. God has decided that our baby does not have to struggle. We, as her parents, will take the struggle for her; and now we will take time to heal. 

The months of worry about Piper’s fight has taken a toll on us. We are emotionally exhausted, frayed, scared, and hurting beyond words. Because this journey has been such a long one already, we have had time to process some things and try to be as prepared as possible for what is to come.  Randomly during the day, or late at night, I will have a profound thought that calms me, or a question will be answered that’d been bugging me. This can only be God’s Grace preparing me for this next step:

- We are so thankful that Piper will not endure months of struggle; and that her complete healing will be not on this Earth. 

- We’ve realized the pain will now be our emotional battle to win as a couple. We can do anything together to get through this with the help of our faith and family. 

- We are thankful that Tallan will not have to endure her parents being at the hospital for months. I am not losing the little family I already have. I could not bear to be without Matt or Tallan, and I know their presence will get us through this.

- I’ve struggled with this question: “Why must I go through 9 months to lose our baby?” “Why didn’t I miscarry if something was so wrong?” and I’ve realized that answer is because the God that created ME, made me perfect. This 9mo is a testament to the miracle of my body sustaining life, the miracle of being someone’s mother. For the things my body can do – I am grateful. I was chosen to be the mother of this angel, regardless of her time here on Earth.   Thank you, God, for choosing me, for showing me I have the strength to go through this, that Matt has the love to get us through this. We will get through this.

- I’ve realized that people these days have taken the term “normal” for granted. We are in our 20’s, with no risk factors and this still happened. “Normal” is already the miracle, and I hope to be an example of why we should appreciate that so much more.

- We can fight this journey tooth and nail, be depressed miserable people, and that will not change the outcome of this story. We’ve chosen to handle this with as much grace and poise as possible, so that God can lay his hands on us, and use us as an example of his Grace and Peace during times of terrible sorrow.

- I am blessed to be healthy and able to conceive. I know that one day, once we are healed and ready, that God will bless us with another baby. For that, I am truly grateful.

I am so sorry for this long post, but wanted to get our story out there before we quiet down to prepare for our Piper’s arrival. I hope to keep you posted as updates arise with our little family, and I thank you for taking the time to pray and think of us. There is no greater peace felt, than knowing that family and friends are surrounding us in prayer. Feel free to share with your fellow warriors, we appreciate it more than you will ever know.

To Miss Piper Grace: what a road we’ve been on baby girl, but you have taught our family so much about strength, faith & hope for the future. I know I will look back on this time of pain, and realize you touched us so much more than I can even comprehend now. Thank you for letting us be your parents. We love you so much.

                                                                                                                   Much Love to All,

                                                                                                                                                                                                                                                                                                Matt, Tara & Tallan