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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Isn’t it funny how life turns out? Our family motto is Disce Pati or learn to suffer. Not because we think we should suffer but to remind us that it could always be worse and it’s better to live life with a smile than be mad at what is thrown at you. Our son had a stroke fro e.coli poisoning when he was 2. He is now 5 and just had brain surgery for deep brain stimulation to hopefully help his dystonia. In the middle of that our oldest daughter was diagnosed as bi-polar. Fortunately our youngest only suffers from princessitis! All though it is a demanding condition to be a princess every day! ;)
Three years ago our world was “perfect” by everyone’s standards but you know what I wouldn’t change a thing. I get to hold my son every day and my daughter is finally happy after I demanded several new therapists. I found out how strong I am and what I can go through with out falling apart (all though I am tempted to on a daily basis). We are all alive and together and every day that happens and I wake up breathing is a great day.
You are doing a fabulous job and I love your blog!
Erin´s last blog post ..Hectic week and a winner
Wow! Is all I can say. I can’t imagine going through what you did and are with the waiting game. You are a strong momma to deal with all of this. Your babies are beautiful. Your family and Jilly are in our prayers that there is no diagnosis.
Forgot to tell you I came over from SITSgirls.
Robyn´s last blog post ..Midwest Living Tips
What an amazing woman you are- I will keep your precious ones in my prayers.
Crystal (from SITS)
http://survivingandthrivinginmom-dom.blogspot.com
Crystal Lien´s last blog post ..Who am I Part 2 of 3
What an amazing story. All three of your babies have officially won over my heart.
Stopping by from SITS.
Missy´s last blog post ..My Testimony Part I
Wow, I was just on the edge of my seat reading this. And the pictures of your babies are just so beautiful!
Stopping by from SITS. What an amazing story. How lucky your children are to have you and I am sure you feel just as lucky to have your children.
When you were waiting for your twins to be born did you feel like calling those UCLA doctors who had made you pack because of a fear of a “stress induced labor” and tell them that you were STILL PREGNANT and that they had obviously jinxed you!!!
wow. i LOVE the picture of your twins.. i SO LOVE it! I’m sure you’re enjoying your family life!
I can’t get over. I went through the photos again and again. you have a BEAUTIFUL family! =)
PS.
visiting from SITS!
Viviene´s last blog post ..What is your dream job
I remembered this post from my wedding blog: http://avbigornia.weebly.com/5/category/wedding%20preparation/1.html
(just thought of sharing)
I really want to have twins!
Viviene´s last blog post ..What is your dream job
I winced while I read this. I braced myself for your next words. I didn’t brace enough. I’m speechless. No parent should have to experience your story. You’re obviously a capable, strong woman who loves her kids like nothing else in the world. But, I’d still like to offer an “I’m sorry.” Because, I think sometimes that’s really still ok to say.
Peace to you all.
Julie @ Practically Spent´s last blog post ..The Last Hurrah of The Birthdays
It’s amazing what life throws at us & how much we are able to go through, especially with such a great reward. You are lucky to have such a lovely family!
Happy SITS Feature Day!
Shelley´s last blog post ..Sundays in My City- The Puyallup Fair
I’m a day or two late, but in DeNae-land, that’s on time. Your story is so touching; I really hope all is well for your beautiful little Jill. One blessing she’ll always have is Lucy. And it could well be that Lucy will have enough personality, enough strength, to be the sister to Jill she’ll need to be. Hopefully this is all irrelevant; Jill will be fine. But if life has a different game plan for her, then Lucy will be a great companion.
DeNae´s last blog post ..Embracing Hel
WOW! I found your site from Momma D Jane, you have an amazing story. I admire your positivity and willingness to take things one day at a time. I can honestly say that I WALK in your shoes – My daughter has Tuberous Sclerosis. Her seizures started at birth. Being a first time mom and really no experience with children, I was not sure what to do. Her condition isn’t as bad as most in the same boat, so I know what you mean about the support groups. I almost feel ashamed to tell my story, because so many have it worse. I am thankful every day for her and all that she has done for me. I am a better person because of her. I think one of the hardest things I face and probably you too – waiting in the neurologist office!! UGHH!!! It is so heart wrenching. I see the other children and think “is that my daughter’s future?” “Could that have been her future?” In the beginning we didn’t know her future, so I would look around and soak in what I needed to be prepared for. She is doing great right now at 2 years old. We have a speech therapist and have worked with a occupational therapist – THANK GOD FOR THESE PEOPLE! I can’t imagine doing their job – Day in and day out dealing with difficult parents, struggling children etc…..
I am so glad your here and sharing your story! I needed to hear it!
Your family is such an inspiration! I’m sure the Lord is using your victorious spirits to touch many lives.
Linda´s last blog post ..Homemade Finger Paint
What an incredible story! I’m so thankful to have come across your blog, the manner in which you have chosen to handle the struggles that have come your way is so inspiring. You have given me hope and inspired me to give back in honor of our daughter. I plan to post a little something about your blog later and hopefully send some more people your way!
Rebecca´s last blog post ..Planting new life
Wow, what an amazing story! It is so scary when there is something wrong with your baby, whether it is minor or major. I was actually born with Pulmonary Stenosis, as was my oldest daughter, so it is a subject near and dear to my heart (pun intended :) ). I had surgery at 18 months and then again at 5, but have not been affected by it really since then. My daughter’s is way more mild than mine and she has been lucky to avoid any surgeries.
On another note, I was also shocked when I found out I was carrying twins. So much of that part of your story and the fear during the NICU I can so relate to.
I wish you and your family the best of luck in the future. Your babies are gorgeous!
What an amazing story. Your kids are all beautiful and you are so strong to have made it through…especially with all the waiting and not knowing. I’m so glad I found you.
I just clicked on your blog through the Blissdom Newbie site. (For some reason I have this crazy idea that I should attend…)
Anyways, your story is crazy! I just got chills when you said you knew you were carrying twins. That is just so neat! I love your honesty about how you felt when you found out. For some reason I feel like I will have twins at some point and let me tell you that doesn’t sound too easy to me. (I have twin sisters and lots of other sisters and we feel someone in our family will have them).
I felt compelled to write though because my son was also born with a heart defect. Honestly, I can’t remember the name but it has stenosis in it. And it’s funny because as a healthy 5 year old I completely forget at times that his heart is not normal. He had surgery at 6 weeks and so far we have been fortunate enough that that is all it has been.
It sounds like you have been given more than your fair share. You have a beautiful family. :)
Emily
I’m here via Rebecca who wrote about you on her blog. My heart, thoughts, hugs and prayers go out to you and your family. What amazing resilience you have. Thank you for sharing your story with us. Your family is adorable!
You are an inspiration to women everywhere! God bless you and your family. Keep blogging…it will help you get through the tough times knowing so many people are supporting you.
:)
-Leaza in Denver
Leaza in Denver´s last blog post ..Why am I Working Out…if Currently No One is Seeing My Birthday Suit
Such a beautiful story & a beautiful family :)
Traci´s last blog post ..In My Neighborhood Tuesday
Check out this blog, http://lotsofscotts.blogspot.com/ , for encouragement about a triplet who had a diagnosis of mild cerebal palsy at birth and has done an amazing job of catching up to his siblings. At age 6 they are all bright, talented and physically active. Their mother is a wonderful writer, as well.
hi, Found you tonight thru kelle hampton’s guest blog.. I am a follower of hers.. I want to tell you… My son has NF1 Neurofibromatosis.. and I dislike being an “expert” on his condition.. but It was great to find another mom… with a special needs child.. I also never heard of Reeces’ rainbow.. thank you.
Lisa
I am your newest follower
lisa fogarty´s last blog post ..Peace and plenty
Just found your blog! (via Kelle Hampton’s)
Lovely to read your story. I too am a mum of a two year old and twins born on my eldest’ second birthday. Lovely to see you doing so well. X
Loved meeting you!
Oh wow, momma. WE could be twins!
I had my twin girls first – one of them has severe asthma & maybe a touch of CP but is otherwise fine. The other has a host of birth defects (including CP and a heart condition). When they were 4 months old I got pregnant with their brother (who is totally healthy) – but I was sure I was going to have him at 26 weeks when my sick twin was having cranial reconstruction surgery. Still doing the waiting game with the heart – hopefully for a long, long time.
Oh wow, momma. WE could be twins!
I had my twin girls first – one of them has severe asthma & maybe a touch of CP but is otherwise fine. The other has a host of birth defects (including CP and a heart condition). When they were 4 months old I got pregnant with their brother (who is totally healthy) – but I was sure I was going to have him at 26 weeks when my sick twin was having cranial reconstruction surgery. Still doing the waiting game with the heart – hopefully for a long, long time.
Wow! That is pretty crazy! I hope that Jill doesn’t have to have a diagnosis either!
New to your blog, but am loving it thus far!
Just read your story. And I wanted you to know how blessed your realness is to me.
Thank you for blogging. Truly.
Rachel´s last blog post ..the bottom line
Jeannett, I can’t remember anymore how I found your blog- but I’m so glad I did! Thank you for sharing your story. My heart swelled while I read your story; it’s awe-inspiring to read about how your life has been rearranged and then how you embraced it all.
I’m not a mama yet, but when I am, you can be sure I’ll be wanting those qualities in myself.
Sarah´s last blog post ..It’s That Time Again
oh little miss thing. i somehow ended here, not sure the route i took but it all started at melissa’s blissdom blog-hop. love your de-lurking bit, and funny, bc ihave a post started about comments and the fact that they DO matter.. like minds! i was at blissdom too-enjoyed, but i’m so drawn to your story. your babies are all beautiful. i am a pediatric physical therapist and i’m here to tell you, no one can tell you fully what your baby’s potential is… there are educated guesses and it’s important to be realistic, but just remember that. she is a ball of potential waiting to develop… just like your other two. and those eyes! they ARE gorgeous!
patty´s last blog post ..February Resolutions
Wow that is a great story you are soo brave and have soo much courage.
Your family is adorable. I loved reading about you. I found you from A Deeper Story.
So nice to meet you!
Julie Todd´s last blog post ..Fanning The Flames Anew ©
This is one beautiful, loving story. I’m hooked. Your newest follower. Thanks for sharing.
Wow! What a story. I am going to have to read more.
I am new to your blog here & I really appreciate it! I came through Heather Hamilton’s guest post.
I plan to write a post in honor of my firstborn’s upcoming birthday, linking folks here to take part in the NILMDTS fundraising campaign.
erin´s last blog post ..Our House a little tour
surely much like your website but the truth is really need to check the punctuation in several of your content regularly. Some of options are rife using transliteration problems and I still find it incredibly frustrating to express to reality on the other hand I am going to undoubtedly go back again.