"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
In a month, since our last update, Julianne has had lots of fun! We had a pretty busy month, but enjoyed it very much. A very exciting part of this month was that we closed on our house!! I can't remember if I posted on the blog or not that we'd been looking for a house since April. We didn't have any prospects by July and it didn't look to promising, so we decided to rent for a while. We moved into the rental and 6 weeks later were informed that there was a problem with the construction and we had to move out. Two days after that we made an offer on the "perfect" house. We're currently painting and doing some small renovations and will be moving into the house in the next few weeks. We're so excited to be Zachary residents!
On the first weekend in October, we went to Lafayette to visit Kent's parents, Julianne's Mimi and Papa. We had a great time and Julianne enjoyed spending time with her grandparents.
Mimi, Julianne and Papa
In the second weekend in October we spent a nice Saturday at home and Julianne spent some time "playing" daddy's guitar before we headed off to a wedding.
We were also able to attend the 2nd Annual LPCF reunion picnic that weekend. LPCF stands for Louisiana Pediatric Cardiac Foundation. We were able to see several of our "heart friends" and enjoy some good food and play time for Julianne.
Standing all by herself for the group picture!
Mommy totally failed at getting a good picture of the whole group. :/
Releasing balloons!
Julianne decided to squeeze hers until it popped instead.
In the third weekend in October Julianne attended her first birthday party for a friend. She went to her friend Myles' party and although she was a little too young and wobbly to run with the bigger kids, she had fun bouncing in one of the fun jumps, playing with hula hoops and seeing her friend.
Julianne and Myles
We also had our harvest picnic at church that Sunday, during which Julianne spent most of her time on the swing. That girl LOVES to swing!!
Finally, this weekend we had plans to attend a Halloween function at one of the church's here in Zachary on Friday, but it was postponed. Maybe next year. We did get to take Julianne Trick-or-Treating for the first time! She'd tell the people, "Chich-a-cheat!!!" We loved it! We only went to a few neighborhood houses along with my parents and grandparents.
"Trick-or-treat, Grandpa, Grammie and Aunt Laura!"
I really wish I hadn't make this video SIDEWAYS, but I did. If anyone knows how to fix it please let me know. :) This is Julianne trick or treating at my grandparents' house, Julianne's greatgrandparents - PawPaw and MawMaw.
Afterward, we took our little pumpkin to eat with my family at Sammy's.
I haven't been able to post a detailed description of October 2nd 2007 until now...its just been too difficult to get out the words...or type out the words, I guess. Here it is:
It was two years ago yesterday that Kent and I experienced the most horrifying day of our lives. It was the day we almost lost Julianne...the day she went into cardiac arrest. I can still see everything like its an HD video in my mind. We went from being tired yet hopeful, to being terrified and desperate in a matter of moments as Julianne's blood pressure and heart rate plummeted after being given a stronger medication (Esmolol after earlier doses of Sotalol) to combat her stubborn SVT. We watched as more and more and still more doctors and nurses rushed to her bedside and someone yelled, "somebody cut this shirt off of her!"...the shirt that we'd been so excited to dress her in that afternoon. I can still hear the nurse giving us the play-by-play of what was going on and I can still hear Dr. Breitbart saying to us, "This is very serious." After staying for as long as we could hold ourselves together, we left her CICU room, tears streaming down our faces, wondering if we'd ever see our baby girl alive again. I can still see my mom texting prayer requests out to everyone she knew and I can still see the sweet Englerts coming in to offer their support even though their own little girl, Hannah, was struggling as well. I remember just praying over and over, "Please, save her!" They did chest compressions on our tiny baby for a half an hour to keep her heart pumping until they could get her on ECMO (heart-lung machine/life support). God did save our baby. He gave us a miracle. God is ALWAYS faithful. Even if this day had turned out in, what we would call, the worst way possible, (a way I can't even bring myself to type) God would still be faithful. However, we are very thankful, we are beyond thankful, I don't even think there's a word for how grateful we are, that this day didn't happen in that way. God gave us more time with our baby and that is such a precious gift. God has also given us a hope in that whatever plans we may dream up for Julianne, He has a much more wonderful plan for her and we trust Him to fulfill that plan. So, we are praising God for the miracle he gave our family on that day and we pray that Julianne's life and story will bring Him glory!! We are also reminded to keep praying for our friends who have lost their children. I can't imagine their heartache...
Julianne is two years old! At two years old she is walking, eating, dancing and imitating everything she can! She loves to play with balls, open "rader" (refrigerator), help Grammie make coffee, read books, play with her train, take the dogs outside and "walk 'round!" Julianne weighs just over 27 pounds and I don't know how tall she is (oops!). She tells us when she needs her diaper changed, when she wants to eat, when she needs a drink and when she's ready to go somewhere! She makes up her own songs and sings songs she already knows. She is eating stage 2 and 3 baby foods and beginning to munch on on "Veggie Straws." Julianne knows many colors, most of the alphabet, and is beginning to count objects (not very many objects, just counting 2 or 3 objects). She goes to bed around 8:00 - 9:00, wakes up between 7:00-7:30 and usually takes a 2-ish hour nap. Today she has a virus but is quickly getting better. Not the flu, (tested yesterday) just a virus. :)
Julianne's 2nd birthday has come and gone. I was almost dreading it because I thought I'd feel sad that she's not a one-year-old anymore. I was a little sad, but was filled with joy more than anything else. It seems like every birthday should be the biggest celebration ever when I think about how each DAY with Julianne is a miracle. I recently read the following on the Jack of Hearts Foundation website:
"Of 98 children with HLHS studied from 1971-1986, only one child survived and 97 died. 15 died on the first day of life, 70 died within the first week, and 91 died within 30 days of birth. Cynthia Morris, Jacquelyn Outcalt and Victor D. Menashe Pediatrics 1990 859:977-983"
Had she been born a little more than one generation earlier, she would have very likely not made it. We are so very, very thankful that God has given surgeons, doctors and nurses the wisdom and knowledge to give our little baby boo and so many others a chance at life. God has given us another year to love our baby girl here on earth and we cannot even express how grateful we are! We truly believe that God has given us a miracle.
Now, about the birthday party. Julianne has a couple of favorite things: Books and Balls. So, we decided to give her a birthday themed with one of her favorites and we chose balls! We had a little ball party on Saturday with Julianne and both of our families. We filled an inflatable pool with balls, played a ball toss game, attempted to make a ball-shaped cake and had ball shaped snacks, favors and decorations. I knew I would really enjoy planning my kids' parties one day, but I had no idea I'd LOVE IT!!
Julianne did ok for the party. She really enjoyed the ball pit. She liked the ball toss game when it was her turn, but got a little freaked out over all of the excitement during others' turns and ended up having to go outside with daddy while everyone finished playing. Julianne DID manage to hold back the tears during the WHOLE birthday song this year. She cried right after though. She did not eat any cake, but ate a good bit of ice cream. That was an awesome feeling to see our little girl, who so recently wouldn't eat anything, eating ice cream at her birthday party. She then opened her sweet gifts with the help of her daddy. Once again we went WAY-HAY-HAY overboard with the pictures and took more than 200 that day. The poor kid probably went to sleep still seeing flashes in her eyes.
Wow! I can hardly believe its been two years. Its gone by so fast. We had a great time today celebrating Julianne's birthday with our families. I will post more about it soon along with a more detailed "two-year-old" post. For now, here's a slideshow we made for our sweet, two-year-old, baby boo. :) Thank you, God for two wonderful years.
We had the privilege of taking Julianne to the beach for the first time last weekend! The vacationers included Kent, myself, Julianne, my dad, my mom, my sister, 3 aunts, 2 uncles and one cousin. :) Julianne did not like walking in the sand. When we tried to get her to walk in the sand she'd start to cry and say, "Bumped toes! Bumped toes!" She seemed to like standing in the water...until she realized she was standing on sand! We brought an inflatable pool with us and filled it up with buckets of water so she had a great time just hanging out in her pool. It was such a joy to bring Julianne to one of our favorite places. I have to warn you...I got a little carried away with the pictures. SOOOOOOOO I narrowed it down as best I could.
The car rides really weren't too bad aside from traffic and baby poop. Julianne was really patient and spent about 45 minutes just playing with her ball in the back seat. We're definitely bringing a ball in the car more often!
Modeling her swimwear
I couldn't resist a ruffle butt picture!
Finally seeing a "laughing bird" in person!
At a restaurant...SOOOOO ready to go
Playing in the sand is not so bad...just standing in it
"Ball, daddy?"
Watching the waves with daddy while Grandpa's on pool bucket duty
The coolest
Pooped out on Grammie!
Rested and ready for a swim
Breakfast with a view
Smile, Julianne!
"Pick me up!"
A tired baby heading back to Louisiana
We had a great trip and look forward to many more beach trips with our little bathing beauty! On Saturday Julianne will turn 2! I can hardly believe its been 2 years...wow. We are so thankful. :)
Wow, it has been WAY too long since I last posted an update. Part of my excuse is that we moved and didn't have the internet for about 2-3 weeks. Well, that only covers 2-3 weeks. Beyond that...no excuses. Anyway...
Since you last heard from us:
Julianne's fever and conjunctivitis decided to invite a full body rash to join in on the fun and bought Julianne a trip to the doctor. It pretty much looked like this, except all over her body. I'm not exaggerating when I say it was HEAD TO TOE!
As it turned out she had an Adenovirus. I'd never heard of this. Apparently all 3 things AND her cold symptoms were part of one virus. It took about 2 weeks and a 2nd bout of conjunctivitis to get rid of that thing!
For the 4th of July we went to Jackson, MS to visit my brother and had a nice time there with him and my sister too. No fireworks for us this year but we had a fun visit and, of course, took pictures:
Chinese food makes me go crazy!
Patriotic baby :)
Just for a comparison, here is Julianne in this same sailor dress last July:
And here is the Stay Puf't marshmallow baby:
Julianne had her very first "menu item" from a restaurant in July! She had a kids ice cream sundae. I can't tell you what a great feeling it was to be able to order something for her. All I can say is our favorite word...Awesome. Don't let the pictures fool you, she does not self feed. She will put a spoon in her mouth one or two times then its back to "mommy do it" or the food doesn't get eaten. Hey, we're just happy she's eating. :)
Like I said, we moved. We have not had much success in the almost 5 months we've been house hunting and decided to rent for now and continue the house hunt. Julianne is enjoying the new place AND, for the first time ever, she sleeps in her own room. The transition was much harder on me than it was on her. She didn't cry and, I don't remember specifically, but I'm sure I did. Julianne loves, loves, loves playing in the hallway with balls. She loves balls in general and sees them everywhere we go...real actual balls, ball shaped planters at the mall, and our waiter's bald head. Yes, that's right, our waiter walked up with a shiny, shaved, bald head and Julianne says, "BALL!!!"
Playing ball in the hallway
Julianne is still doing awesome with the eating! She has begun to gag a couple of times a day again, but not retch. We're not really sure why. In my last post I'd written that she was taking all of the "food" portions of her feedings by mouth and we were only tube feeding liquids and meds but she wasn't eating as well at that point because she was sick. Well, she's sick again (a cold) and is still eating ALL of the food portions and drinking some of the water. The only thing I've had to cut back on while she's not feeling good this time is the texture we've been adding to her food. Having a cold makes Julianne EXTRA gaggy. The combination of stopped up nose, post nasal drip and an ultra-sensative gag reflex make colds very difficult. Yesterday she couldn't get control of a gagging episode (usually she can get it under control and won't retch) and went into the whole retching ordeal. It kind of worried me a little because her g-tube site bled slightly after the retching. I checked her residuals and it had no blood so her doctor agreed that it was probably just pressure from the retching and the button rubbing the granulation tissue. Julianne has an appointment with her surgeon to have her g-tube button changed on the 17th so she'll probably take care of that for us.
Julianne is really doing well overall. Her last Cardiologist appointment was awesome. Great lab results, great echo, great holter results. No problems. :) In fact, she doesn't go back until DECEMBER! That will likely be her last visit before we head to Boston in the Spring for her Fontan surgery, but we're not going to think about that right now, right? Right. The Neurologist appointment went really well too. She was impressed. Really just the same as the last visit...low tone, we'll keep watching her and checking her every 6 months for now. Julianne's looming appointments include the surgeon on the 17th and G.I. on the 24th.
Julianne is now 22-almost-23 months old:
23-ish Months
She now weighs a little over 27 pounds! At 23-ish months Julianne is still loving to read. She always wants to read books and we think that is awesome! I hope her love of reading continues throughout her whole life. Right now she's enjoying literary classics such as, "Pajama Time", "Moo Baa Lalala", "5 Silly Monkeys" and "Sleep Tight Little Bear." Did I mention Julianne is climbing? Yes, she's climbing and between the chances of falling or pulling out her g-tube button as she slides off of the couch on her belly she keeps us busy. She can also count to twelve and knows most of the letters of the alphabet. She LOVES to play with her letters on the window or as Julianne says "Open window? Pway nedders? Nedder A?" Its one of her favorite activities right now.
"Pwaying Nedders" with daddy
Was there any doubt that we'd have a video? Nevermind the un-wiped runny nose...she has a cold ya know!
I think the most exciting bit of news that I have to share is that....drumroll please...
! ! ! ! ! ! !
JULIANNE IS WALKING!
We are so excited and Julianne is loving it. She just does laps around the house. She can't stand up without pulling up on furniture, a toy or a hand yet so when she falls she has to crawl back to where she started and pull herself up. She definitely prefers walking over crawling now, but still crawls, I'd say, about 1/3 of the time. I can't help but smile when I see those little legs and chubby little feed come toddling down the hallway! The physical therapist and Neurologist were both really happy that she's walking! You know how we are with the camera around here. Its like a baby reality show...the camera is always rolling. Well, video-ing has been in overdrive as Julianne has learned to walk. I had to narrow it down to 4 walking videos to show you :)
The proud walker :)
Wow, that was a long post. If you read all of that you, my friend, are awesome. I hope to not let so much time pass before our next post. She will be turning two in just a little more than a month (sniff, sniff). I can't believe how quickly our baby is growing up. We continue to cherish every milestone and every day with our baby boo. Thanks for checking in on us!
Oh! AND big news about the two friends we mentioned a couple of months ago Sofi and Lindsay are both home and doing great! Thank you, God.
Hi! We are Julianne's parents, Kent and Jessica. She was born with Hypoplastic Left Heart Syndrome and has undergone the first and second of her surgeries. Her Journey has been an eventful one. We thank God for giving us the opportunity to love and take care of our sweet girl. He has given us more than we could ever deserve. This is Julianne's story from the day we learned of Julianne's diagnosis until now.
Show me "sad", Julianne!
Mimi, Julianne and Papa
Standing all by herself for the group picture!
Mommy totally failed at getting a good picture of the whole group. :/
Releasing balloons!
Julianne decided to squeeze hers until it popped instead.
Julianne and Myles
"Trick-or-treat, Grandpa, Grammie and Aunt Laura!"
