I never thought that this would be my story.
I always figured that I’d have a relatively uneventful life. A husband, a couple kids. Maybe even a goldfish.
Don’t get me wrong. I got it good.
Real good.
But, my story is just that: my story.
My husband and I had our son Henry the day after our 5 year wedding anniversary. He was born 3 weeks early and weighed a paltry 5 lb. 9 oz. (Despite my 45 pound weight gain!) Soon after birth, they detected a heart murmur, but we didn’t worry. After all, 30% of babies are born with murmurs…that go away on their own within 2 weeks.
As I’m sure you’ve guessed by now, his didn’t. Turns out he had Pulmonary Stenosis. We visited a Pediatric Cardiologist 60+ miles away, every 3 months. Each visit was torture. We were told early on that our little boy would need heart surgery…and that it was all just a big, fat waiting game. They wanted to wait as long as possible for him to get bigger, but not so long that it caused him trouble. Every visit I was sure we would be scheduling surgery. Visits came and went, and we kept being told to just come back again in a few months. Tor. ture. The weirdest part was that if I didn’t tell you, you would NEVER know that there was anything wrong with him. No meds, no special instructions…nothing! Made it hard to rectify the information and visits in my head with what my eyes saw.
In the meantime, I couldn’t find much of anything on the web about any of this. The good news was that Pulmonary Stenosis was the “best” of the heart problems to have…and the procedure he would undergo was the “easiest” of the surgeries he could face. The bad news was that none of that did anything to calm this mama’s heart. I didn’t know what to expect, I didn’t know how to prepare, I didn’t know anyone going through this. Even online discussion groups didn’t welcome me very much because my son had a “simple” heart defect. I didn’t fit in with the mama’s whose babies had major, crazy multi-syllabic conditions. While I was thankful in many ways that I didn’t “fit in” with these groups, I still felt really alone.
When Henry was 15 months old, we got pregnant again. We were jazzed. And even though I had no reason on the planet to think so, I couldn’t get the idea that I was having twins out of my mind. My husband poo-poohed my hunches and told me I was crazy. Must be the hormones. (Wanna make a pregnant woman turn into a raving lunatic? Blame her moods/thoughts/actions on hormones. Try it. Works every time.)
At our 12 week ultrasound, we saw two wiggling dancing little babies.
Much cussing and crying ensued.
Who does that??? I am *not* the twin mom. That is just. not. me. Twin moms are supposed to be chill and calm and collected. SO not me.
Apparently I didn’t get the memo that it didn’t matter what *I* thought about the whole thing. Weird.
Fast forward to May 21, 2009. Henry’s heart surgery. It was here. I was 33 weeks pregnant with twins. My doctors freaked out. They had me pack my hospital bag to have in the car. They printed all of my medical records to take with me. They were concerned that the stress of my 23 month old son’s heart surgery would put me into labor and I’d be having my babes prematurely at UCLA Medical Center…a few hallways over from my little boy. 200 miles from home.
Luckily for me, that didn’t happen. In fact, Henry’s surgery was about as easy as any surgery could be. His recovery was almost non-existent, the babies stayed baking, all was well.
And the girls kept baking…and baking…and baking.
And before I knew it I was doing jumping jacks, drinking raspberry leaf tea, and even having sex to try and get them out. ::Shudder::
Finally, at 38 weeks 6 days…3 weeks after Henry’s second birthday…I gave birth to two beautiful girls. Lucy was 6 lbs. 6 oz. Jill was 6 lb. 9 oz.
My 5’2″ frame somehow managed to carry 13 pounds of baby.
My stomach muscles will never forgive me.
My girls were full term, beautiful…and no signs of any heart troubles. Woop woop!
And then Jilly, my chubby one…my perfect little nursing champ…quit nursing…
…and then she started shivering…and shaking…and basically looking like she was altogether having little seizures.
Transferred to the NICU, she spent 4 of the longest days of my life there. While I was home recovering from an infected and oozing c-section wound with Lucy. My twinless twin.
After being seen by a Pediatric Neurologist and who knows how many other specialists, the doctors deduced that Jill had suffered oxygen deprivation at some point during the pregnancy or labor.
Her liver enzymes were crazy high, her blood acid levels were through the roof…and she shivered and shuddered through a tightly swaddled blanket.
Constantly. As in, pretty much non-stop. Break. your. heart.
Slowly her liver and blood numbers returned to normal, and her shivering…slowly…slowly…stopped. But it took a few months.
So far, Jill is doing pretty good. She’s a happy baby. Her eyes will bore a hole straight through to your soul. But coordinated movement is hard for her. Physical milestones are delayed. But a sweeter, sillier baby you won’t find anywhere.
She is amazing.
Jill continues to have therapy three times a week. She is being seen by a neurologist and orthopedic surgeons and a whole team of specialists I never imagined I would ever meet.
Jill has a diagnosis of Cerebral Palsy. It’s still hard to see those words.
Two weeks before her first birthday, she shocked us all by having a seizure. A 911 call, trip in the ambulance, overnight stays, MRI’s, EKGs and who knows what else later, we also have an epilepsy diagnosis.
Boo.
But…Jill’s epilepsy can be “outgrown”.
For now, it is all just one big, fat waiting game (sound familiar?).
No mama ever wants to be an expert. I have no desire to know so much about the workings of a human heart or the details of infant development and brain synapsis. Some days I am tempted to be bitter. Others I cry in overwhelming thankfulness. It’s a roller coaster for sure.
And Lucy? Well, she’s got enough personality packed into that little body that she doesn’t *need* to have any “special” issues to give me a run for my money! :)
Strong willed doesn’t even BEGIN to describe this child.
But in her stubbornness she is also fiercly loving and sweet. She’s quite the dichotomy.
Lucy makes me smile. She makes me want to pull my hair out too. But oh how she makes me grin!
Our life is crazy with three kids within 25 months.
A life with specialists, a million appointments, therapy sessions, and medical bills is not what I ever dreamed of.
Baby #4 was expected.
And then lost.
That was quite the surprise too.
And quite the hurt. I miss that little bean. Deeply.
But it is still such a precious, amazing life.
It’s just been rearranged a little.
(And if you *really* want to know more about my life, you can read The Proposal and Parts 1, 2, & 3 of how I met my husband!)
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of course i know the story, but to see it all put together in one post is so overwhelming! i so admire your perspective and (relative)sanity through all this.
Lindsey- I KNOW! It doesn’t really feel like that big of a deal in the day to day of life, but when I tell the story all in one shot, it is a bit overwhelming!
beautiful story jeannett.
when my husband and i did premarital counseling the counselor asked us to write a 5yr and 10 yr goal. we were prego 4 times by our 5th anniversary, in debt, and needless to say i was a bit insane! i wish i could go back to that counselors office and rewrite those goals. they would both say this, “remain in Christ.”
that is all the plans we have for our future. God writes our lives, in his mysterious, crazy, wonderful way. my plan is to HANG ON to him!
Life unfolds so differently than we could have ever imagined it!! Your story tugs on my heartstrings! =) I understand the overwhelming amount of medical issues in a short time… and the overwhelming team of many specialists… the non diagnosis… the worry in the mommy’s heart… feeling alone b/c your child does not fit into a mold … the medical bills! =) We have a sweet 7 year old…he is a witty, funny, smart little man who has a number of medical challenges… the overwhelming amount of specialists have not been able to “label” him … we treat symptoms… live life and hope! Life has been fairly steady and stable for a while… but… it has not always been! I have yet to share my story in the blog world… still trying to find my writing style … and the time to spill my heart properly…. =) the words will come at just the right time I guess! You are not alone darlin!! =)
There is a saying, “Life happens when you’re making plans.” You can attest to that wholeheartedly. Hang in there…..look at your children, listen to their laughter & open your heart & mind to what the Good Lord has for you. You’ll do just fine…maybe different than you had planned, but just fine. We adopted a 14 month old with CP. He is grown now & lives independently in an apartment. Since he is in a motorized wheelchair, he collects disability but cares for himself in all ways. We have learned so much from him & been given insights into our other 2 children as well. There’s a lot of living to do. Just go on & live it. It’s your life story.
Ok, I had posted on Kelle’s blog post with my question to you Re: chd but here I found your story. My daughter is 8 mo old and has a vsd…we are in the WAIT and see what happens stage. Pure torture as you said. We also go every 3 months for an echo and checkup to see how things are going. So far we are extremely happy that she has had no outward symptoms and has not needed meds. YOu’d never know anything was going on if someone didn’t tell you. However, there is a %30 chance of it closing on its own, so the odds aren’t totally on our side as far as that is concerned. She may need open heart surgery at some point…hers is in a location where catheterization is not an option. Anyway, you hit my feelings right on the head….I thought I’d have the uneventful life…and I also do not want to know the inner workings of the heart…I never gave two seconds of thought to anyone’s heart till my baby’s diagnosis, and now I don’t think there’s more than a couple of hours that pass before I am thinking about her’s again. No baby should have a cardiologist. I would in the very beginning after diagnosis get mad and sad that she had a 99% chance of NOT being born with a chd and she did….and WHY? But, as time goes on, I become more and more “ok” with dealing and accepting, and the thing that brings me so much comfort is that ultimately, she’ll be ok… whether she has surgery or it heals itself. I just have to do my best along the way, during this unknown stage. Anyway, sorry for the long rambling…but from one “simple” chd mom to another, I totally relate!! Your daughter is in my prayers too!
.-= Daniele´s last blog ..JJ Cole Outdoor Blanket =-.
Wow–what a story. God Bless you and your kids!
Oh wow, what a story. God bless you and your three little ones! CP is a brain injury, as you know, and so I’m just wondering if you’ve heard of The Institutes for the Achievement of Human Potential? They are in PA. My daughter was brain injured in a car accident at the age of 4 and this is where we took her. The program is very diffucult to carry out each day (you do it in your own home and visit the facility twice a year for evaluations), but wow — I have truly seen some miracles come from it, especially from those who get there at a very young age. They only work with children. They are wonderful. There is a link to their website on my blog in the navigation bar.
I’ll be praying for your daughter.
Beautiful story. Amazingly beautiful kids!!
WOW! I had no idea. I always say that you are one of the strongest women I know. I am very proud of you and Andy for being such amazing role models for your children. You are doing an awesome job!
Love,
Darci
I just wanted to stop in and say this is the first time I have heard almost an exact birth story as my son’s. We were also told that he has severe oxygen deprivation sometime during labor/delivery. Turns out he has a metabolic disorder. Specifically, mitochondrial disease. He is 5 now and is absolutely amazing!
I L-O-V-E your website! I follow Kelle Hampton’s blog, and came across your site, after reading her guest blog. I am a fellow mother of twins, as well! One of my daughters, Abby, has a rare brain condition called, Holoprosencephaly or HPE for short. I can totally relate to having a twinless twin at home. Abby spent nearly a month in the hospital, after she was born. She has since returned for two more stays. Our lives are full of doctor’s appointments, hospital visits, meds, but most of all lots of love and HoPE!!! Thank you for creating such a wonderful site! You have a follower in me! Maybe one of these days, a HPE organization can be a recipient on your site!
Carly
http://www.carlyandjay.wordpress.com
What an amazing story your family has. Your strength & faith is admirable! Praying for you & your family!
.-= mel´s last blog ..A Fond Farewell =-.
I came upon your blog today from a link on Lisa Leonard’s blog. I so admire your beautiful gift, which is this blog. I find it is so important to be open and communicate all about motherhood and the stories that go along with it. I adore how you share your words and story. Thank you!
I clicked on over to your blog from your button on The Nester. Thanks for sharing your story. . .so I am wondering is there an update on your little girl. . perhaps I need to go read parts 1, 2, and 3. I just wanted to leave a comment and say I am gonna get off this now and pray for your little one. . .for complete healing.
Thanks for sharing your story. I’m now a follower and can’t wait to keep reading. Your children are all beautiful!
.-= Kristin @ Ellie-Town´s last blog ..And the winner of the Picky Sticky Giveaway is…… =-.
Hey, I just happened upon your blog! My son Noah who is now 2.5 had the same “story” as your Jill- apnea at about 4 hours old, then an abnormal EEG and a CT scan that showed a very swollen little brain. Liver enzymes elevated as was his ammonia levels. What a shocker since he was born seemingly “perfect” and had suffered some trauma unbeknownst to us during L&D. What a long road we traveled after that….
Fast forward 2.5 years- Noah is thriving, no CP, no “diagnosis”, just a spirited, fesity little guy who talks in full sentences, runs, jumps, climbs….his biggest fault is he is super skinny and doesn’t ever want to eat, lol.
Just thought I’d share…from another mama who has “been there”
I have a blog as well: parentdise.blogspot.com
I love hearing stories of life. Beautiful, CRAZY, hard life. Thanks for sharing. We lost our first baby Evan to a fatal birth defect, full term, he was stillborn. We have a healthy little almost 3yr.old Rowan. Where I relate most to you is the hustle and bustle and waiting game of a child with “disabilities”, our darling baby Phoenix has Spina Bifida with many other diagnosis’, and my life is also consummed with the ups and downs of developemental delays and specialist, therapist appointments. All of that to say, you will and are an encouragment to many in your love and the way you live your life. My prayers will be with you and I know that God will meet you every step of the way with his undeniable Love and Grace.
God bless! Three little ones oh my! You must be a busy mama :) but very blessed. I kept reading for the crazy part to come, and honestly I thought when I saw that picture of your twins that they were Siamese. lol. Sorry! But really, I am sure you have a very full cup and I am sure you count your blessings. Thanks for sharing your stories.
I was a NICU nurse for 15 yrs then peds ED so my heart goes out to you for all you have gone thru and will go thru.In 32 yrs of nursing I have seen a ton of families struggle with unimaginable things.Great attitude and beautiful children !
Thanks for sharing your story. Beautiful kiddos! What stuck out to me in this post was how even though your son had the “best” heart condition parents of children with more severe problems might not have compassion for your situation. Maybe thinking they are suffering more and just brush your story aside. I always think about how each of our struggles is our own. Our problems, to us, are the biggest, but to other’s might not seem so. There’s always going to be someone with less problems and then some with more problems. I realize how important it is to reach out to that someone that might have what we see as a “small” problem, because to them it is a big issue. And rightly so, it’s their struggle. Does that make sense? Basically I hope to hear others more, to listen to their problems and care. Because even if to me it seems like nothing at all, to them it’s something weighing on their hearts. All that was to say, thank you! You gave me some perspective today!
Jeannett, your story of these precious little ones makes me smile and cry and want to hug each one of you. Prayers and blessings for your beautiful family! :)
Susan´s last blog post ..Depth of Impression
stopping over from Lisa-Jo’s and am LOVING reading all of your stories! you have such a beautiful family :)
Katy´s last blog post ..friday fifteen
Okay okay. So you probably think I’m a stalker by now. Rest assured, I am not. I realized after getting comment-happy on several other of your beautiful posts that I didn’t know your story. So I read it. And it was like I was reading my own. Only not with twins. I just want to tell you that you are a comfort to me. Me. Us. Who just recently learned that we are facing a “working diagnosis” of cerebral palsy as well. That news ROCKED OUR WORLD. Especially since it wasn’t even on our radar. For real. We’ve gone through an MRI and 3 EEG’s – one being over 24-hours at a special Epilepsy institute. So I know. I relate. I feel how you are feeling. I want you to know that I am praying for you and your family. I think of you often – especially when I am playing with Addie and compare her to other kids her age. Yes. Break. Your. Heart. I never imagined this to my story, either. I can’t imagine going through something like this without Him. Hang in there.
In His Grace,
Lindsay
I can’t even imagine that much rearranged! I was stressed out my first year of marriage because my husband had a minor (very minor) surgery and I didn’t have the job I thought I would. by the name of your blog it seems you have graciously accepted some tramatic rearranging! I admire your attitude about life!!
Gorgeous family! You have been through alot but what you go through makes you stronger. I, too, have one heck of a story to tell and every time I do, I cry a little. Us moms have to stick together! Bless you and yours.
Jyll´s last blog post ..Wasted Time of SO Worth It!
What an incredible story. I found your through SITS today. I love your beautiful photos and your words had me hanging onto the edge of the seat. It’s amazing what people can go through yet remain strong and feeling blessed. THank you so much for sharing :)
Mrs Green @myzerowaste.com´s last blog post ..Zero Waste – a Way to a Low Carbon Future
Hey There! I’m embarrassed to admit that I couldn’t find you SITS Day post, but wanted to wish you a Happy SITS Day anyway! You have an amazing story and are living proof that just because life doesn’t go as expected doesn’t mean it isn’t great! :)
Thank you for sharing your story. You have some truly beautiful children (those eyes!).
Lindsay @ Just My Blog´s last blog post ..Then he came home
Happy SITS Day! What an amazing story. You have beautiful family.
Mommie Daze´s last blog post ..Eat Smart Digital Scale Review and Giveaway
I’m a twin mom too and I can definitely relate to your feelings when you first learned you were having twins. It sure gets easier though doesn’t it?
Hi there!
Wow, what a journey you’ve had! I love that you’ve found a way to encourage others through your own struggles.
Keep up the great work!
Cheers from a fellow SITS gal,
Heidi
Nice blog, thanks for sharing.
Katy Lunsford´s last blog post ..a little something I had on my table last year love it!
Thank you for sharing your story – your kids are ADORABLE!
Happy SITS Day!
Stacy Uncorked´s last blog post ..Rainy Days- Winemaking- Banned Lunch- Schedules – Random Tuesday Thoughts
Thanks so much for sharing your story – what an amazing one it is. Happy SITS day!
Mellisa´s last blog post ..I am a Rockstar Mom
What beautiful children you have! Life sometimes builds and prepares us for what is to come. You never know what you will need “muscles” to get through! Great blog!
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WOW. I’m not even sure what to say. Stopping by from SITS and thought I would read about your busy life doing good things, but wasn’t prepared for this. God Bless you..honey, you need it! I’m so glad you were featured today. Baby just woke up from nap, but will read more later :)
Like so many other people I can’t even begin to leave a comment that will do justice to what I’m feeling right now. You are a strong beautiful mother and your children are so very blessed to have such amazing parents.
If you ever have time to read I might suggest you read the book “The Cure”. The dz is not similar to any of your childrens’ but the struggles of those parents sound similar to yours and you might find some helpful information.
Thanks for sharing and happy SITS day!
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What a story! Such an emotional roller coaster, but what sweet beautiful children. I guess sometimes we can handle more than we think! I pray with you for little Jill! What darlings! Glad SITS featured you today!
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What an amazing story. And we will pray for no diagnosis and complete recovery for Jill!
I have always said a prayer and been relieved when each of my 4 children were born. And now I have 7 grandchildren. All have been ‘healthy’ by the stories that I read on other’s blogs. My oldest had major scoliosis surgery at 13. My son had an undescended testicle and hernia surgery at 2. I have 3 very colorful ADD daughters, and a couple of my grandkids are looking that way as well!
My youngest grandchild is only 1 month old, and her mama had a difficult labor and c-section, but my son was right there with her. Baby had major jaundice and wasn’t nursing well and had to be readmited for a few days. She now is bottle feeding and gaining weight and jaundice is all gone!
Reading others stories makes me feel guilty for complaining at all! I look forward to reading more about your family, visiting from SITS!
Bernice
Ramblings of a Woman´s last blog post ..Trying so hard to be myself
You have three little beauties there!! :> But, I do know what it means to worry about a wee one in surgery and later worry about a young one with special needs….as if there isn’t enough worries in a day about a typical kidlet, especially when its your kidlet! But, you’re right, it is a rollercoaster and with that, each plummet down, leads to a climb up, and a crest to sit atop, smiling….beaming, with a few corkscrews along the way. And yes, while there are those downs, for me, I make it through them by seeking out the little things that make me smile. The little bits & pieces of life are so much easier to focus on, pick myself up with, and move forward! :> Thank you for sharing your story, I’m glad I’ve read it!
Stopping by from SITS. Happy SITS day. What an amazing story. Your children are beautiful and truly are blessings! thanks for sharing your story. I love your blog and all the giving that is going on here. You sound like an amazing person.
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wow i hope your girl gets better and doesnt have cerebral palsey i know how bad that would be.. My son has Autism spectrum disorder bipolar and ADHD so i can imagine how hard it would be witha much more severe diagnosis.
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Happy SITS Day! I enjoyed your stories about your babies. Your family is beautiful.
Your family is gorgeous! You are truly blessed, and challenged. Thanks for sharing your story.
Wow. Your whole family is filled with champions and troopers! You have been through so much and I admire your courage!
Christine´s last blog post ..With the Changing Colours
Wow that is amazing! I am overwhelmed with one special needs child (two kids under3), and can’t begin to imagine your life! Keep up the good work!!!
you story left me breathless! You have a beautiful family.
….stopping by from SITS
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Happy SITS Day!
What an amazing story! Your family is beautiful.
My dad had (has?) pulmonary stenosis. It wasn’t until he was almost 50 that they discovered that his heart just wasn’t working the way it should. He went through his whole life with no problems and they discovered the issue during a routine physical. He had surgery and they put a mechanical valve in. If you hold your ear to his chest you can hear it working.
Mrs. Mootz´s last blog post ..Guest Blogger- Guest Room & Guess Were Keeping It All-Natural
What an incredible story! Your children are beautiful, and I pray that your prayers for Jill’s full recovery and no-diagnosis are answered. Congratulations on your SITS day!
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