Friday, June 08, 2012

Rowan's Story

Mama Katie & Rowan June 1, 2012
 Hello, my name is Katie St. Marie. Wife to Ryan, mother to Jacob (5 years old) and Rowan (6 months). Thank you for your interest in our daughter's (and family's) special story. That story began before she was even born. We first found out we were expecting our second child in April 2011 and were so thrilled after almost a year of trying. The first half of my pregnancy was pretty uneventful thankfully. August 1st was my 19-week anatomy scan and big gender reveal. We decided to have some family and our son there (he was very convinced he was getting a baby brother!!) I left work early to get to my appointment and felt some anxiety that I'm sure all moms-to-be feel before such a huge appointment. I prayed that my child growing inside would be healthy and safe. During the ultrasound I asked the tech if everything was looking good. "Everything is looking great so Far." okay. My nerves calmed a little. She made the announcement that Jake would be getting a sister! (He argued the fact and said there must be a twin brother in there somewhere!)

She continued and kept taking pictures, more pictures, and focused pictures on her heart, she wasn't seeing what she needed. She said nervously as she grabbed the long strip of printed pictures "I'll be right back" and left the room. I panicked and glanced at my family and said "that's never a good sign" what could possibly be wrong that she needed to leave.

She came back in a few minutes later (an eternity) and said point blank "I'm sorry there is something wrong with your baby's heart, you will have to be referred to a specialist and there isn't much more I can tell you other than it looks like hypoplastic left heart syndrome"

Ummmmmmmm..... What now? I don't know what that means. What it is, and you have to be mistaken. Your wrong. I started crying I got up, wiped the gel off my belly and ran to the bathroom. I came out some time later and hugged my OB. She told me they would call with an appointment with a perinatologist and to not go home and google. (I think every doctor says that and every parent goes home and googles).

I went home, cried, screamed, and sunk into a black hole. I see "multiple open heart surgeries" transplants, high mortality rates and stories of babies that have passed online. I was in denial, anger, asked "why my baby, why my family, why me?"

I had to wait until August 4th for my appt with the specialist. Those were the longest most agonizing days I've ever experienced. Google is a dangerous weapon in the hands of a newly diagnosed and distraught parent.

I lay on that table trembling with anxiety and grasping onto my husbands hands. They did a very detailed scan and measured everything. The perinatologist came in and talked after and they confirmed that my precious daughter did in fact have HLHS and we would need to be followed closely by a pediatric cardiologist as well them. What is HLHS exactly? The entire left side of her heart wasn't there, or was severely underdeveloped. What did this mean? Her left ventricle responsible for pumping oxygenated blood systemically was absent. She would not survive without surgery and medications right after birth, and at least two more surgeries to get her heart to function using one ventricle.

That was a hard and bitter pill to swallow. But we wanted to give this miracle every chance we could give her.

So I went to my appointments, monthly, then weekly, then sometimes multiple appointments in one day.

I transferred all my care to a

Children's hospital 35 minutes away and found a new OB to take over my care as well so I could deliver at the same hospital.

As we neared my December 25th due date I knew something big was gonna happen. My life would be forever changed. I would have to leave my job, we would probably have to find somewhere else to live, I would stay at home after her birth and recovery and become a mother again and nurse. I prayed that God would give me strength and guidance for this new journey I was about to embark on.

•December 12, 2011• 10:02 AM

5lbs 8 oz 18 3/4 inches long

A induced and very smooth and fast delivery (and dare I should say easy?) my perfect daughter was born to an audience of doctors nurses and it seemed like the number multiplied with every push.

She was here all swaddled with her hands on her cheeks, lips puckered and her button nose sticking out. The first part of her I touched was that button nose. I had about 5 minutes to hold her I told hubby "snap some pictures!" she stayed in the NICU until December 16th.

Morning transport came and took her down to pre op holding. Signing the consent and seeing my newborn being taken away was so difficult. Ask any heart parent, or any parent with a medically fragile child. She had her hybrid Norwood surgery and came out looking great, doing great. A week later however one of her cardiologist told me there was a chance they would need to take her back into surgery for some pulmonary artery band adjustments. They were just a little too tight after she had settled and they would keep adequate blood flow from going to her lungs. So December 22nd we sent her off again. This wasn't any easier but was necessary. We finally got our "walking papers" aka got discharged from the hospital December 29th. So scary and a blur I thought how I could possibly care for her BY MYSELF AT HOME WITHOUT NURSING STAFF. She required medications multiple doses a day, getting her weight and o2 saturation, heart rate to be charted and called in twice a week to her cardiologist. We somehow made it 12 days at home before being readmitted for a cath lab to have her atrial septum widened. What was supposed to be a three-day expected stay turned out to be almost two weeks. Rowan threw a few tricks and we were reminded again just how delicate these heart babies are. Seriously. A fine balance between stable and unstable. One pebble can tip their scale so fast. We continued on at home and finding easier ways to manage our hectic schedules. On top of her heart issue Rowan also has severe reflux (GERD) and could not keep down food even with her NG feeding tube. We tried a special tube that goes past the stomach (ND) but after multiple tubes being pulled out, MULTIPLE ER trips, Ro went in to have her third surgery March 13th, to have a G-tube and fundoplication. This kept her food down and a longer-term solution for her eating issues. We were gearing up for her second (and largest) heart surgery. She needed to be as plump and healthy as possible and her doctors were aiming for the 6-month mark. One thing about Rowan is that she has her own plans and runs her own show. She has never "made it easy" for anyone but that lends light to her feisty fighting spirit. That's what makes her so special. She keeps you guessing, smiling, and her smiles ARE CONTAGIOUS. The weeks leading up to her second surgery (comprehensive stage II) we found ourselves in and out of the PICU (Pediatric intensive care unit) multiple times to get her fluid levels correct with her diuretics. The last few weeks prior to surgery she required constant o2 monitoring and oxygen. I was growing very anxious with the huge surgery looming over our heads. Most everyone I had talked to in my Heart Mamas (support group) said life was so much easier after the second surgery. Your child is more stable and life calms down for the most part. We could plan small day trips, and beach time and play dates. We COULD get past this hurdle but we had to take that next step. Surgery crept up and our date was June 1st. I was scared out of my mind pushing thoughts of doubt and uncertainty around in my head. Would I bring Rowan home again? Would I need to order her medical supplies for June? Do I buy her summer clothes? No one wants to think about their living child in the past tense in that way. But it is a very real concern, a valid fear, and possibility for us heart moms and dads. We could possibly not be bringing her home again, or to grandmas, or anywhere again. We checked in two days early to the hospital to make sure her fluids looked fine and to a picc line placed. She was taken Thursday morning but before transport came I sat her on my lap and just prayed over her kissed her and let her hold my face. Not to be depressing or a pessimist but those could have been the last moments where I got to hold her and hug her and have her love me back. A very good friend and fellow heart mom told me to hold onto and cherish the present moments with them and don't spend every second thinking about all the possible outcomes because you'll miss out on what’s in front of you as hard as that may be. The picc placement was not successful. She remained intubated and came back sedated. I can't hold her until sometime after her surgery. I don't know when but it was already too long of a wait.

June 1st was here and transport came at 7am. Surgery was supposed to start at 9 and be finished sometime mid afternoon. Ryan and I spent an hour in the early morning praying, crying, taking pictures, and kissing her sweet face. It hurt that she was sedated and intubated so we were pretty limited to what we could do with her. After transport came we camped out in a waiting room. We got an update here and there, she was doing fine, prep work done, on bypass, Dr. Carl came out and talked to us about her pulmonary valve that was not looking good, it would need to be repaired or replaced and they would determine soon.

It's been 4:30 pm and Dr. Carl said they would have to replace the valve and take her off bypass while the cadaver valve thawed. 6:00 pm Dr. Carl said heart was liking the new valve much better and she was off bypass. They would finish up and come update in and hour. Dr Carl came in about 30 minutes later with a worried look on his face. He is not one for hiding his emotions real well.

"Rowan did not tolerate coming back off bypass, she is in very critical condition and will be put on an EMCO machine (machine that circulates and oxygenates blood) so her heart can rest, she wont survive unless she’s on it. There is also a lot of bleeding they are trying to control. We will update u as soon as possible."

10:30 they are still trying to stop her bleeding and having a very difficult time keeping her stable.

I was hearing what no parent wants to hear. Your child is on life support and has a 50/50 chance of pulling through. You see the looks on the doctors faces, and you get really good at reading people. I was angry. I looked out the big windows thinking I was losing my life. She is my life, my sweat blood and tears have been poured into this child and she was slipping away. I sat on the floor crying for a long time, my family showed up my husband was by my side. But I have never felt so alone before. No one could give me what I wanted. My child in my arms.

I waited until after 1 am (15 hours of surgery) to hear that the bleeding was under control and my baby was alive. PRAISE GOD. Her fight was FAR FROM OVER. Still so many hurdles to cross, a day can go from bad to good to bad so quickly. Blink and that's all it takes. I am celebrating in her baby steps and small accomplishments. That's all we have. We have to find some happiness in a room full of equipment and machines, pumps, drugs, tubes, cords, monitors a sweet innocent child who lies in a bed with barely a pulse, barely a heartbeat, barely recognizable. But healing. Rowan that's all mommy wants you to do is rest and heal. We have tried to wean a few times off the ECMO before, unsuccessful but we are making two steps forward with every step back. We have managed to get one cannula out of her SVC. Drs have said they are pleased with the direction she's going but we can't keep her on EMCO much longer. Either she goes into surgery to have tricuspid valve repaired that started leaking again after this last surgery and comes off EMCO 24-48 hours post surgery. Or her tricuspid valve function may improve after some fluids come off and we will de-cannulate her possibly Monday. We need sweet Rowan to do this on her own. She is so strong and has come so far and has so many more stories to tell. We have had so many people reach out to us during this journey; Rowan's story has caught like wind to a wildfire and is spreading. Our support is from family, friends, online December 2011 birth clubs who have been banded together since we first found out we were expecting. Our support is also from strangers all over the world reaching out to us, offering comfort and letters of encouragement. Decorated hearts started showing up in the mail from friends all over the globe. I'm hoping that whoever is reading this can see there is light in the darkest times. We need to trust that God will see us through. Prayer does work. Sometimes it's not an easy answer or what we feel is right or fair. But in the end God doesn't work with statistics and probabilities. He works with the impossible and making it possible. His plan is greater than we can ever understand and the hardest struggle is accepting a plan different than our own. I will never give up on my daughter. She has made a huge impact with 1/2 of a heart and two little feet.

Newborn Rowan, December 2011


Deb said...

My heart is crying and smiling at the same time - how is that possible? Every time I think of Rowan - which is at least every other minute - I think of the countless thousands of people who have whispered prayers for her. Her Porchlight FB page has over 1450 members thus far...and I'm sure for every member there are many others who are praying. God is so amazing - how He is using this precious child to draw so many close to His side as we band together in prayer for her. Lord, honor our prayers and heal her precious heart!!

Saija said...

we continue praying for that sweet child ... and her very very tired family ... knowing that the God of all comforts will continue holding everyone up ...

Crown of Beauty said...

Sara, thanks for sharing this story, now I understand better what I am to pray for (since I am not on FB).

I am listening to this beautiful song right now: Made Me Glad by Hillsong.

Baby Rowan, mom Katie, dad Ryan, and Grandma Cathy -- God is our shield, our shelter, our strong tower, our very present help in time of need.

He will deliver us from all fear, He has set our feet upon a rock. We will not be moved!