CHD awareness week: Life and loss

I often talk about the immense fear I face everyday with the thought of losing Evan.  It’s suffocating.  But, it’s just talk….just thoughts.

Here are two stories of mothers who lived through every parent’s worst fear.

Thank you, both, for sharing your stories of strength, hope, and courage.

Meet Katie: Heart Mama to Angel Rowan:

My journey as a heart mom starts with the diagnosis of my daughter, Rowan. I was 19 weeks pregnant and found out at our anatomy scan that there was something wrong with her heart. Confirmed 4 days later that she had Hlhs, or half of a functioning heart. A term I had never heard of before and suddenly I was thrust into a world of scary possibilities, unknowns, surgeries and I had to reroute my plans for my daughter. My husband Ryan and I looked at different hospitals, surgeons, went through interviews and chose a children’s hospital nearby to deliver at and have her surgeries.


12/12/11 our heart warrior was born after a smooth induction and taken to the NICU where she was monitored. Four days later she had her first surgery, the hybrid Norwood, and came back to stay in the PICU. 6 days later she was back in the OR having her pulmonary bands loosened due to low O2 saturations. We were finally discharged 12/29/11 and it was quite the adjustment caring for a cardiac baby at home, no help, no nurses, lots of medications, tube feedings, weight and o2 checks.
At her next cardiology checkup, a week later, her doctors decided they wanted her cath-lab sooner than later.
1/8/12 we were readmitted and the following day she had her atrial septostomy. She had complications in the cath lab and her heart rate dropped down to the 40’s and required chest compressions. What normally required a three day recovery ended up being two weeks.
We did make it home again and after a while of ND tube feeds, we decided we should go the g-tube route since her reflux was so bad.
3/16/12 Rowan went back to the OR for her G-tube and fundoplication (a trap door at the top of the stomach to prevent food from coming back up).
Overall she did well with her new feeding tube though we did have some complications in the beginning with poor healing, leaking, and temporarily being put back on ND feeds. Our little warrior fought on and life went back to “our new normal” for a while.
The month of April we managed to stay out of the hospital and just got to enjoy our precious little daughter. She had us all wrapped around her finger especially her big brother.

In May I noticed she was retaining a lot of fluid and having labored breathing, excess sweating, so we ended up back in the PICU to adjust her diuretics and monitor her closely.

I knew her second surgery (and larger of the two) was near as she was outgrowing her pulmonary bands and needing supplemental O2 all the time. Her doctors informed me her surgery would be 6/1.
After one more PICU stay for diuretic adjustments, we were then admitted a few days before her big day. They planned to intubate her the day before and place a Picc line. That was unsuccessful, and Rowan returned to her PICU room, intubated. I was unable to hold her, and it hurt knowing I couldn’t until after her surgery.
6/1/12 our big day was finally here and I was scared out of my mind. Was I ever going to hold her again? Would she make it through surgery? So many questions pulsing through me, and scaring me. Transport came at 7 and at 9am surgery started. We waited in a room full of older people- most had husbands, uncles, fathers, mothers in for heart procedures. No one waiting for their infant.
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 was 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.
6:30 pm Dr. Carl comes out with a worried look. He is not one for hiding his feelings very well.
“Rowan did not tolerate coming back off bypass, she is in 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 shes 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 sat on the ground 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 was surround by family but I just wanted to be left alone.
I waited until after 1 am (almost 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.
She returned to the PICU and came with lots of equipment and machines. And so many doctors, nurses, surgeons, specialists. It was overwhelming, but there in the middle of it all was my precious Rowan. Hidden under so many tubes, IV’s monitors to keep her alive.
It was touch and go the next few days, small improvements, then a set back, never knowing just where the day would leave us. We never gave up on our daughter though, I knew she could overcome this if only she could rest and heal.
Her doctor informed me that they would need to decannulate her from the circuit sooner than later because it wasn’t a long term solution. They successfully managed to remove the cannula from her SVC but couldn’t go any further. They planned on removing the rest on 6/11. This was our last shot it and seeing them take her away that last time felt unlike anything I’ve ever experienced. Her life flashed before my eyes and I knew it was then a waiting game. Her room felt so empty and lonely without her and I sat there with Ryan, nerves shot, just staring at the clock.

Waiting.
Dr Carl comes into our room 3 hours later and said things were not looking good, that she had a 5% chance of survival.
He left and came back soon after and I knew she was gone. I swore I was dreaming some horrible nightmare. Losing our daughter was not suppose to happen yet it did. I was in shock for a while, then the waves of uncontrollable crying came. We had our photographer come in and capture the last moments we shared with our precious little

Sparrow. Our Rowan flew to heaven the day before her 6 month birthday.

Not a day goes by we don’t mourn the loss of her and the happiness she brought into our lives. We are learning everyday of life is blessing and that there is no better time than the present, so make it count. Our Rowan made every minute of her life count and she taught us so many things.
Healing and grieving has been quite a process since she passed as I am sure it is with anyone who experiences losing a child. Your life is forever changed and the loss is like a rock thrown in your smooth pond. The ripples radiate outward and touch, therefore affecting everything in their path. There is no going back and undoing what happened. No unseeing what what witnessed. No way to erase emotions felt.
I feel this grief is like an ember that is always smoldering, sometimes on bad days it catches and ignites, somedays outsiders almost can’t see it. But it’s always there, and you never know what kind of day it will be.
Shortly after losing Rowan we discovered we were expecting our third child. We always planned for another baby but didn’t expect things to happen so quickly. Excitement turned to fear, adding on anxiety and guilt along the way. Would we lose another baby? Would he or she have a heart defect? Will Rowan think I’m replacing her? Add pregnancy hormones and grief and its a messy, unpredictable combination. Thankfully Jake and Rowan’s little brother has passed all the scans thus far and appears to be healthy. Putting my trust in God to take the wheel again and knowing he is in control was honestly very hard. I felt like I had been forgotten, or my prayers unheard and that the life and healing had been saved for the next baby in need, not my baby. Everyday is a struggle still but I will continue to try to make the best of it and trust in His master plan.


Jeremiah 29:11
New International Version (NIV)
11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.

 

Meet Angela – Heart Mama to Angel Isabelle 

(Please visit Angela’s blog at http://www.isabellesheart.blogspot.com/

My Angel is 3 Months Old!

Dec. 22, 2012

Three months today I had to “physically” let get go of my Isabelle.
She will forever and always remain in my heart. My arms feel empty and I still feel a bit lost.  The pain is still very raw. Everything about my body is telling me that I should have a baby in my arms, even my mind tries to tell me this – but the reality of it all tells me something totally different.
Looking out the window the other day watching the leaves swirl around aimlessly reminded me of how I felt – like those leaves.

This is not going to be a “easy” Christmas for me.  I am grateful for Chloe and my loving husband Adam – I am not sure how I would be without them.
This will be my baby’s first Christmas in heaven!

Setting up a Christmas tree this year wasn’t something I WANTED to do, but knew I had to for my daughter, Chloe.  She needed to have that AWW moment when she got to see a Christmas tree all lit up.  I decided to set it up while she was napping that way it was REALLY a surprise for her when she woke up – and it was! I am glad now, that my husband drug it out of storage and that I set it up; Chloe just loves to look at it, touch it and tell me what colors she sees.  She brings the JOY of Christmas to me.

 

In my next few posts I will be “backing up” to the day we found out Isabelle had to be delivered…. to catch up so it, my story, our journey will make more sense. It, again, may take me some time but THANK you all for your patience, understanding and for following my blog!
MERRY CHRISTMAS TO YOU ALL!