Our daughter, Ramona Mae, was born November 26th, 2006. Her birth was a much anticipated and joyful event. But her amazing story started long before her conception.
My husband Andy and I had been struggling with infertility since 2003. We prayerfully considered what our next step should be towards building our family and decided to pursue domestic adoption. On January 1st of 2006, we signed our adoption contract and began working on our home study, hoping to bring home a baby in the next 12-18 months.
On March 31st we were completely flabergasted to discover that I was pregnant. We were excited but also nervous, having suffered a miscarriage in 2004. Then on April 11th we received a call that a baby boy had been born and would be available for adoption the next morning. So on April 12th we brought home our beautiful three day old son Simon. What a whirlwind that was. He slept in his car seat for three weeks while we mustered the energy to set up a crib.
The pregnancy was pretty uneventful, unless you count non-stop vomitting and mind-blowing leg swelling. It got a little tricky towards the end as I approached parade float size and Simon approached 18 pounds.
On the Friday after Thanksgiving my water broke. We waited overnight for labor to begin in earnest but by morning I was still only dilated the tiniest bit. So our plans for a homebirth were scrapped and off we went to the hospital. The next thing that got scrapped was the idea of a drug-free labor. After 8 hours of pitocin I opted for the epidural, highly recommended. By the next day, now Sunday, I had finally fully dilated. I pushed for 3 hours but we just couldn’t quite close the deal so off I went for a c-section, also fun. When she was delivered the cord was wrapped twice around her neck and there was a knot in it. She weighed 7lbs. 5oz.
We were all stunned by her dark and “exotic” appearance. We even dumped our favorite names in favor of Ramona, which seemed to suit her so much better. She seemed healthy and although she slept quite a bit and was slow to nurse those few days at the hospital, no one seemed too concerned.
Fast forward 11 weeks. We are finally settling in at home. It’s mid-February. I’m getting the hang of two babies, seven months apart. Andy has returned to work, the meals have stopped coming and help from our generous moms has slowed, things are finally getting manageable. But Ramona just isn’t gaining very much weight. She’s borderline. She’s meeting her milestones, exclusively breastfeeding and otherwise seems content. But I just have this nagging feeling that something is off. After several trips to our usual pediatrician I decide to get a second opinion. Just to be safe, due diligence and whatnot.
The second pediatrician didn’t seem overly alarmed by Ramona’s slow gain but did comment on her bluish coloring, which I had always thought was normal for her. To be on the safe side she ordered an echocardiogram, which is an ultrasound of the heart, to rule out a blood oxygenation problem. This was done on February 10th. On February 13th I received a call from the cardiologist who read the results of the echo. I listened in shock as she told me that Ramona’s heart was “quite abnormal” and I needed to take her to the emergency room right away.
Andy decided to stay with Simon and a girlfriend met me at the hospital. Within about 10 minutes of arriving at the triage desk Ramona was in a trauma room surrounded by a dozen doctors and nurses. People were talking quickly, firing questions at me and getting Ramona hooked up to God knows what (I know what all those tubes do now, but I didn’t then). Before Andy had even arrived she was intubated, unconscious and paralyzed.
A doctor explained that she had serious heart defects: Tetralogy of Fallot, Pulmonary Atresia and MAPCA’s. She would require open heart surgery before we’d be able to wake her up, much less take her home. The next day they did a cardiac catheterization and discovered that her branching pulmonary arteries (BPA’s)were a miniscule 1.5mm. This prevented them from placing a shunt and instead they gave her a right ventricle outflow patch (RVOT). This means that they sliced open her main pulmonary artery and patched it with some of her pericardium (the covering of her heart). This created an increased blood flow to her BPA’s.
She had a rough time in surgery (on Valentine’s Day) and there was concern that she would not survive the night. But she did survive that night and the next, and every night since.
Several weeks after her surgery, she was diagnosed with 22q11 Deletion Syndrome, also sometimes called DiGeorge Syndrome. The full effects that this will have on Ramona, if she survives her heart defect, are still unknown. We do know to expect some learning delays. Ramona is currently receiving speech, physical, occupational and developmental therapies at home.
In June of 2007 it was discovered that Ramona had developed an aneurysm at the site of her first repair. We were again admitted through the emergency room and Ramona had her second open heart surgery a few days later. She recovered well and came home again just five days after surgery without supplemental oxygen.
And that is about where this blog picks up. The hope for Ramona is that some new treatment would be developed that would allow her heart to be repaired. She is not a candidate for a transplant. She is scheduled for another heart cath in November of 2009.
She is doing well at home with us and is now up to a whopping 34 lbs, eating entirely by mouth (many children with 22q11 get supplemental feedings through a tube as Ramona did for over a year). She wears orthotics that help support her during weight-bearing activities. She’s taking supplemental calcium and a beta-blocker 3X a day. She’s walking, talking, knows her alphabet and her colors. Her last surgery was an angioplasty in May of 2009.
Please pray with us for her happiness, her health and her healing.
Love, Jane.
Hi Jane: I am a friend of Jen Sage’s. I helped you plan her baby shower two years ago. Just wanted to share with you that we are fervently praying for the Lord to walk with you all during this time and for His miraculous healing for Ramona. Blessings to you all.
Hi! We are friends of the Bradburns and just wanted to let you know that a whole bunch of folks in Charleston are praying for your precious baby girl. May God continue to uphold and support you during this time. I know He is holding sweet Ramona in the palm of His hand! Love and Blessings! The Fischers
Hey there Andy & Jane,
It was so precious to see little Ramona in the hospital and the memory of her porcelain skin and her ruby red lips is forever in our hearts. We have been praying for her constantly and all of our circles of friends all over the world are praying for her as well. We love you guys and are here for you over the long haul.
Peace to you, Carlos & Janeil
Prayers will be going up for you, Randy & Jane, Simon and little Ramona Mae, from a small group in Oaxaca, Mexico. We are Janeil (Nellis) Ruiz’ parents. We know that the Lord will is your strength and he is right there with you and your family, carrying your burden for you. So wish we could be helping hands, but know that prayer does count. Love, Dave and Wendy
Andy and Jane, Our hearts are breaking for your sweet daughter’s. We so wish we could help her to heal quickly and take away your sorrows. You will never be far from our thoughts and prayers. Love, Brian and Melanie
Jane and Andy,
This sucks! We are praying and believe God heals. Ramona sounds so strong and has touched so many hearts already. What an amazing girl!
Wendy and Tom
Dear Jane & Andy & Simon —
Ramona is beautiful and what incredible spirit!
I’ve forwarded information re the challenges
your family is encountering. Prayers are winging their way from your “extended family”
in northeast Iowa,Az,Fl, Wi, etc. This is
a powerful group who have interceded on behalf of Mike, Molly, Michael and baby Jane. Thank God for caring people — and miracles. Peace.
Ross & Mary (Molly’s parents)
Dear Andy and Jane,
Stand strong, do not faint, God is at work.
You are loved.
Always and always.
Jane and Andy,
Word of your little fighter has made it to Atlanta, Ga and Cumberland Community Church. Many of us are praying for peace in your hearts and streangth and recovery in her’s. Take care of one another and know that God is with you.
Danna and David
Dear Jane and Andy,
Our prayers are with you and your precious children. Any words of comfort we could offer feel so inadequate. We pray you would know what it feels like to be held in the palm of His hand and to abide under the shadow of the Almighty.
Leah and John (friends and neighbors of Toby and Bekah
Andy and Jane,
I will keep you all in my prayers. Ray had forwarded the site to me. Romona looks so sweet, what an angel, she looks like a true fighter. God bless her and be with her during this process. My heart goes out to your family. Peace and Prayers, Katie Sheehan
Andy, Jane, Simon, Ramona –
You are all in our prayers. I’ve let those who met you at our wedding (Ramona still in utero then) know what is going on as well. Thank you for sharing with us.
Anne & Pete Ellis
Hi Jane & Andy,
Jane, I’m the lady that you saw at Jewel with Simon a few weeks ago. My prayers are with you. Ramona sounds like quite a fighter, I will say an extra special prayer for her tomorrow morning when I go to mass for Ash Wednesday.
I don’t know how much help you need with Simon. But I have 2 boys at home. A 7 year old and an almost 2 year old. If you need help with Simon I would like to offer to take him for a “Playdate” with my boys if it would help. I have a minivan and an extra car seat, so picking him up with be no issue if its something the 2 of you are comfortable with. Just let me know. Andy has my work number.
God Bless You,
Judy H.
Thank you for emailing us about Ramona. You are all in my prayers. If I can help out in any way, please let me know.
In Him,
Tricia, Chris, Arielle and Liberty
Jane, Andy, Simon and Ramona,
We are thinking of you all and you keep fightin’ Ramona!! You are an amazing little girl:)
Take care of eachother,
love,
Jenny & Elliott
Dar Jane, Andy, Simon, and Ramona,
I’m Will MacLean’s girlfriend, Emily. I met you both at his BBQ last summer. I just want you to know that I’m thinking about you, and wishing you all, but especially your fabulous little Ramona, continued strength and hope.
Hugs and kisses even though I hardly know you.
Emily
Dear Jane and Andy,
http://www.savingtinyhearts.org/about.html.
I am a good friend of Tine Kelly’s who told me about Ramona Mae. Attached is the link of a website started by two parents, Francie and Brian Paul, who are going thru exactly what you are. Their newborn son, Joshua was born with Severe complex congenital heart defect.
Francie and Brian are dear friends and could offer the support and comfort you need right now. Her email address is Francie Paul
franciep@savingtinyhearts.org.
Hi Jane and family,
I met you in passing at Karen Beattie’s jewelry party a few months back and was inspired by your family’s story.
I saw Karen this evening and asked about you and she referred me to your amazing webpage. I cannot imagine how difficult things may be for you and your family right now… Just have faith in knowing that Ramona’s story will be heard and that your strength will see you through. I will be sending many positive thoughts your way…
Peace to you and your family,
Emily
Hello, I hope that this note finds you well.
I work with Wayne Deitrich (Am based in the Philippine office) who was kind enough to show me this site during his last visit to our Mill. I would like to extend my prayers and support to Ramona Mae and her family. She is such a beautiful little girl and it breaks my heart to read about her daily trials at such a tender age. Rest assured that you have people on this side of the world (My family and friends) storming the heavens with prayers on her behalf.
Keep smiling and God bless!
Love,
Bianca
hey jane..it’s me cassy… I hope ramona is doing better!! she is very lucky to have you as a parent… both you & andy.. I wish the best for both ramona and simon.. they are both very cute!! every night i pray for her..
from,
Cassy
These pictures are truly beautiful of all of you. Thanks for adding them.
Blessings to your family,
Nicole
Dear Jane, Andy, Simon and Ramona,
My name is Kate and I found my way here from the IVillage December ’06 Snowflakes.
I have been following along with Ramona’s progress, and I read your blog religiously. I think of your family everyday and feel like I have come to “know” you all a little bit.
I also wanted to add that Jane, you are such a gifted writer! I come here each day, checking for updates and I’m always moved by your writing. Whether to tears or laughter, it depends on the day, but I’m always moved.
Thank you for letting me look into your lives. I admire your strength, your love, your honesty and your faith.
I wish all of you the best.
~kate
some of our experinces are simulaer . I am sorry that you where also ignored and had to push to find help for your daughter. You are doing a wonderful job helping her. I see why we have so many feelings that run together as I read your blog I find myself agreeing and fighting along with you at times. you are a very powerful mother and your children are benifitting form your strength!
Izabells story is at http://www.phacesassociation.com/
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Jane and Andy,
We have been praying for you and Ramona. I didn’t know you had this site up, so now we can walk with you a little closer. We love you, and greatly miss seeing you. May the Lord continue to bless the work of your hands and the courage of your hearts.
For Ramona:
The Lord Bless you and keep you; the Lord make his face to shine upon you and be gracious to you; the Lord turn his face toward you and give you peace. Numbers 6:24,25
Ann and Ivan
I am a fellow December 2006 Snowflake momma. I didn’t join the board until July and was unaware of you situation with your daughter. I would just like to know that I will be keeping her and your family in my prayers, That she grows strong and big without the need of more surgeries and for you to have the same strength to overcome the trials that are sure to come in the future. Good luck and God Bless you, your family, and your beuatiful little Snowflake.
Andy & Jane,
I grew up with Andy and Toby in Roswell. I spoke with Toby the other night for the first time in several years. I am going to tell all the Sutters, Wetzels, Fischers, and Devincentis’ to keep your baby Ramona in their prayers. My brother, Richard, is currently studying in Rome, Italy for the priesthood. I am going to ask him to make a special appeal to the holy father, Pope Benedict, to place Baby Ramona on his prayer list and will ask Richard to have his order say a mass daily for her health. Know that you and all the Dietrich’s are in our prayers.
This week we begin fund raising for our March of Dimes campaign at Publix. I will make sure to stress the importance of supporting their programs for the help they provide to young ones like Ramona.
Christopher Sutter
hey your baby is so cute
I send all my pray’s for little Ramona. My 4 month old son goes for surgery on July 8th 2008. I am so scard!!!!! There a nights when i just hold him and cry. I know in my heart that he’ll do fine it just knowing I can’t take the pain away. I am also sure Ramona will come out fine also, she looks like a very strong little girl. So I send my deepest heart felt prayers to Ramona and your whole family. I know its hard.
Jane-
My prayers are with your family. You were so wonderful to me when I had my wedding jewerly party back in 05′ at Curious Jane. I remember Simon in his car seat!
I am a SAHM now and am in Jeff Park, so I would love to help out if I can…
My prayers are with you…
Nicole Cosmen Lennert
I came across this site by accident…google searching for an old childhood friend. Your story is amazing. Your children are beautiful. I will pray for Ramona, Simon, Andy and you. I have three children and naturally worry about every cough, scrape, fever and bruise. My daughter has vitiligo and I worry about her self esteem as she grows up. But really, as much as that will matter, at least she’s guaranteed a chance to grow up without any health obstacles challenging her along the way. This has put my worries in perspective. Good luck to you and God Bless you and your babies.
Hi,
My name is Elizabeth Gross, i am a senior at Columbia Montour AVTS and i am doing my project on Tetralogy of Fallot. I was wondering if i could interview you through about what it’s like to have a child with TOF. My email is pennnitany42@gmail.com. Your information would be greatly appreciated. Thank you for your time.
Elizabeth Gross
Andy & Jane-
Molly just called me with the news about Ramona’s surgery. I wanted to let you know that Ramona is in our hearts and prayers. Please let us know if you need anything after she gets home.
Pax Christi,
Mike
I came accross this and I need to comment on it. I am a 17 year old girl with Tetralogy of Fallot and I was suprised to hear that there really are other kids with this rare condition. I have had 4 surgreys in my life so far and more to come. I am praying for a happy healthly life for your young girl. I now feeling better knowing that I am not alone with this type of heart condition.
– Kateln
Dear Andy and Jane,
Dear Andy and Jane,
We had dinner with your folks when they were in Appleton visiting John and they told us more about your daughter. She is GORGEOUS and I know how much her grandparents love her. We will add our prayers to yours and expect that God will bring blessings and peace to each of you. With love and hope, Fr. Bill and Bev Johnston
hi to you. I was just searching google for a picture of TOF and I came across your page. I am deeply touched of Ramona’s story and would like to share a little something for Ramona and the parents.
For you created my inmost being;
you knit me together in my mother’s womb.
I praise you because I am fearfully and wonderfully made;
your works are wonderful, I know that full well.
My frame was not hidden from you
when I was made in the secret place.
When I was woven together in the depths of the earth,
your eyes saw my unformed body.
All the days ordained for me were written in your book
before one of them came to be.
– Psalm 139:13-16
God bless your family.
I am the mother of Henry Bridges-Simpson’s also diagnosed with TOF, PA, MAPCAs and DiGeorge Syndrome and you commented on our website via Sophia’s blog. I just got a chance to read Ramona’s blog and your family’s story is one of such love and strength. Ramona is a beautiful little girl and in our thoughts. We will definitely follow your story- these children are so resilient:)
I came across your family on the Pink Hippo website. What an amazing family you have. I will keep Ramona in my prayers – she is one strong and beautiful little girl. I am 27 years old and monther of two. I had a very rare heart defect and had open heart surgery at four weeks old. It’s a miracle what the doctors can do. I will continue to check this website and I just wanted you to know I will be thinking of your family.
Indeed, God bless Ramona and God bless you. Blessed, Blessed BE!
Beautiful family! Our daughter was born 4-15-07 and diagnosed 4-17-07 with TOF. She wasn’t diagnosed with 22q11 deletion until 3-08. Your blog is wonderful. I pray for your family.
MISS YOU GUYS
Hello! Someone in my Facebook group shared this site with us so I came to check it out. I’m definitely loving the information. I’m bookmarking and will be tweeting this to my followers! Terrific blog and wonderful design.
My daughter & son-in-law had their second child, a daughter, on 12/31/10. She was diagnosed with TOF. She is being tested next week for DiGeorge Syndrome. My daughter is still struggling with everything. I feel she would be comforted by communicating with someone who has been through what she’s going through. Does it take awhile to be receptive? I’ve mentioned it more than once but she doesn’t seem interested.? Thanks, Tanya
Hi Tanya,
It is such a shock to learn your child has such a serious diagnosis. I would be honored to talk with her when she’s ready. Everyone deals with this sort of thing differently. At the beginning I was not very interested in talking to other families affected by TOF or DiGeorge. I think I just really didn’t want to be in that “club” and talking to another mom would make it so real. Your daughter may just need more time to find her own way through this wilderness of worry.
Your daughter is blessed to have a loving mother and congratulations on the birth of your granddaughter, I hope her days will be long and happy ones.