November 4th, 2013 | Written by Jo
We went to the doctors today to get a quick shot and it was the first time Clara could play with the toys and interact with the other kids there. She made two friends, girls who were just a few months older than her. Clara was in heaven. Then we ran into one of the Mom’s at the scale and I saw her very surprised face as Clara’s scars and button were out in full view. It was funny and I was proud. Proud of how normal Clara is that you wouldn’t have guessed!
When we got back from Clara’s last surgery, My Mom had moved in with us so that I could go back to work. My soul had no peace with this decision, which was made with my rational brain. I was confronted with the thing that I have swallowed and tried to put down.
Clara’s heart scares me. I feel like I live in the unknown and the worst part is, this fear is reasonable. I will get years or decades with this girl, either way I don’t want to miss anything.
Working make me realize my actions didn’t match my values. Turns out I care more about my family than I care about financial security. So I resigned. Money is tight, but I’m full time, loving on our girl, soaking in every baby minute I can get out of her and REJOICING in every growth. I’ll eventually go back to work, but this is where the Lord has placed me in this season.
After I resigned, my Mom went home to catch up on her life. I was so sad to see her leave. I am so thankful for the time Clara got to fall in love with her amazing grammy.
Right now, the Portnoys are home and living life as normal as possible. Our time is filled with family visits, adventures, new discoveries and a lot of Joy! We have been so busy!!
Clara’s diagnosis is full on HLHS, but all the efforts to avoid this diagnosis have made her a “Really Strong” HLHS kid! She gets a little bit of pumping power from her left ventricle, which is like having a back up generator. All her valves and plumbing are looking great.
Here are some amazing things we have seen as answered prayers:
Clara at 10 months, caught up on her motor skills! She started weekly Physical Therapy at 3 months old, and this curious studier-of-all-things-new girl, has let us push her until … last week she started crawling. Crawling I said, at 10 months!!! I cried. She even started pulling herself up and walking herself along furniture. I’m forever thankful to Stephanie, our PT, who gave us these skills and who at 10 months told me she hit every milestone!!
Clara at 10 months may eat normal formula and baby food. Thank the Lord for his faithfulness to our family. Clara for the last 4 months has been on a fat free diet because her bodies’ response to fats, was to create pools of fluid on her lungs. We are back on fats this week! We are not all the way on the voluntary eating yet, but we have come from complete oral aversion.
Clara has had precious time with family who doesn’t live in DC. We took an adventure to Lynchburg where: cousin Chloe was gentile and attentive and filled my heart with her tenderness, cousin Bennett couldn’t contain his high pitch cute oogles and insistence to sit next to Clara for dinner, and little Rhett, Uncle Ryan and Aunt Kelly showed Clara how to do a Portnoy dance Party. Grammy poured her love over Clara day in and out for months! Aunt Jill came to confuse Clara, who thought she was Aunt Jennifer. Even Aunt Maureen came to play and shower our sweet girl in Love!
Clara took on a cold and nothing really came of it. I was warned it could mean hospital admittance. Guess what it was like for her? Like it is for any baby with a cold! That is rad.
We are planning to go visit CO this week to see more family and to test out the altitude on her little ticker. Pray for her to hold up like a champ, like she has in every other way! Our family has a goal of moving to CO to be closer to family and to get out of the hood.Leave a Comment
August 28th, 2013 | Written by Joe
Clara is approaching 8 months old and it’s fun to watch her grow and learn. She see a physical therapist every week to practice rolling, crawling, and her motor skills. She also started meeting with an occupational therapist to learn how to eat. It’s fun to watch her gain confidence in her abilities week by week.
While there are many characters in Clara’s story from doctors to therapists to family to friends who graciously donate breast milk to our heart family friends who have been an amazing support group for us, there is one character who deserves the highest praise.
Joanna. My wife.
I often say she is the strongest woman I know but I would add that she’s also the bravest person I know too. She is the rock of our family with her patience and humility.
One year ago, today, Joanna and Clara had the fetal intervention procedure done. We tend to downplay Joanna’s role in the procedure because our focus was so much on Clara’s outcome but Joanna’s focus, patience, and determination to do everything she could to save Clara’s life is the greatest gift she’s given to our young family.
Joanna doesn’t like the attention put on her but I couldn’t let today pass without expressing my love and admiration for such an amazing woman. She is a precious gift to me and one I don’t take for granted. Six years ago, this week, we started dating and she has endured me and my sin. She stood up to the challenges of our first year of marriage and fought each day in prayer for me. She has forgiven me unconditionally and continues to love me well as each day passes. She loves our daughter with a fierce joy that is a pleasure to experience.
We tell Clara, “be strong and courageous little one, the Lord is with you,” whenever she goes in for a heart surgery or catheterization and I am confident she will know this truth because she has no greater example than her mother. Even in the face of Clara’s unknown future, she has a mom who exhibits a faith in God that manifests itself in strength and courage.
Joanna, you are the love of my life and my words cannot express the deep appreciation and joy you bring to my life. You have made me a better father, a better husband, and a better man. I love you!Leave a Comment
August 23rd, 2013 | Written by Jo
We are home, we are happy, we are ALL pink in color and there are zero Portnoy family members using oxygen!
Clara is doing awesome, it’s like we have a normal baby or something! I am trying my hand back at work while Grammy stays with Clara. Work doesn’t feel like it matters that much anymore, our perspective is so different now (we still work hard and appreciate that our employers pay us for the good work that we do — to be 100% clear to our employers if they are reading).
This weekend we are going to Colonial Williamsburg. Its going to be our first family vacation.
Is this normal life we are in?!? Have we arrived to normalcy?!?
We are happy.
The year mark for Clara’s diagnosis was on August 21 and the Fetal intervention was one year ago on Tuesday, August 28. Joe and I aren’t sure what to say about it. We are different people, we are still changing and learning to be Clara’s parents. We will probably never be able to say we feel secure about her future. We still mourn all the struggles Clara has had and all the ones we know are in her future. We love her with all our of hearts and hope it helps make up for the fact she only has half of hers. She has made us a family. She has taught us how to love better. We want all she has, doesn’t have and everything that comes with the Clara package. We love being Clara’s parents and I don’t blame you if you are jealous.
Lord willing, Clara will not have another open heart surgery for almost 2 years! God has been so good to our family.Leave a Comment
July 29th, 2013 | Written by Jo
She is still puking and we are even stopping the puking meds, they obviously aren’t working. We can’t go home yet.
Clara has another GI appointment on Thursday. If our new eating plan works, we might get the all clear to go home Thursday.
Not being admitted is a HUGE improvement, don’t you think?!Leave a Comment
July 27th, 2013 | Written by Jo
Thursday we got discharged, Clara had only puked once that day so we were feeling ok about the meds starting to work.Turns out the puking isn’t over, it’s back in full force. I’ve been ready to walk her right back into Chlidren’s about three times already.
I’ve been talking to Dr. Tworetzky, and Terra (her NP) the whole time. Following his direction I stopped giving her food to stop the puking today. I am giving her some partial feeds, but it’s mostly just pedialite and she is handling that ok-ish.
Cardiac babies are typically professionals at the projectile vomit - but not Clara,this is new territory for us and I’m so thankful for all her chub right now.
Clara is so tired these days. I just can’t tell you how much I love my Mom for being here. She just takes a vomit covered Clara, pulls her into her arms and rocks her to sleep.
Monday is our checkup to see if we can go home to DC. I have NO IDEA how it will go. I want to go home, but not until she is totally healthy. I really want to go home.
We are praying that her medicines start working and she really does stop puking! Also that we can continue in hospital housing past Wednesday if we have to stay.Leave a Comment