Monday, January 19, 2015
Disclaimer: I didn't proof read this post. I am going to go play with my girls instead. :-)
I am firing up the blog again for an unexpected reason. As most of you know, we are expecting a sweet baby boy. Our son's name is Tyson Hugh Hooper and he is currently 29 weeks in utero. Most parents have only seen 2 ultrasounds of there little one at this point, but we are will acquainted with Ty. At our 20 week anatomy scan the ultrasound tech declared that there were "a couple views of the heart" that she couldn't get. I was a little concerned because she had spent so much of our time in the ultrasound room looking only at his heart, but this seemed to explain it. At our follow up appointment a couple weeks later I was hoping for a quick ultrasound and a healthy check up from my OB. When I hopped up on the table for the ultrasound the tech told me there were just a couple of images she needed of the heart and that it would only take a few minutes. I asked if my OB would get the scan results right away since I was headed there next. She assured me that she would fax them right up and so we could review them at my OB appointment. This put my mind at ease - no waiting to make sure everything checked out. Unfortunately, that is not exactly how things went down. After our "quick" ultrasound turned into a near hour long experience in which the tech barely spoke and took picture after pictures and measurement after measurement of our son's heart, my heart sunk. I just knew. I knew in my heart that his was not okay. My fear was confirmed when I arrived at the OBs office and was told that they wanted the MFM to look at my scans before the released the report and I wouldn't know anything for a couple of days. I was already crumbling, but trying so hard to have faith and keep it together. The reports came back way faster than expected and that afternoon the OB called to say we needed to come back for an echocardiogram with the MFM because they saw some things they didn't like on my scans. Still, it was stated that it might be "positional." We had to wait almost 2 more weeks for this appointment. At the echo it was confirmed that our baby's heart was a hot mess. He had 2 holes near the center of his heart, an aorta that was too small, something else that was too big, and a valve that they couldn't tell whether or not it was correct or not. We were in a daze, but faced with this and told that this type of heart defect is often found in conjunction with Downs Syndrome, we decided to have an amniocentesis. Our results wouldn't impact our decisions regarding the care of our baby so much, but Chris and I would be able to prepare if we knew ahead of time. This was just a few days before Christmas, so the wait for the results and the follow up with our team at Vanderbilt were a ways away. We had to celebrate Christmas and New Years not knowing exactly what our baby's diagnosis was. On January 2 our MFM called with the amnio results. No Downs Syndrome, but there was a chromosomal abnormality. Some Y chromosomes were missing and he was mosaic for this. We held it together for a while, praying and trying hard to trust God and his plan. After all, He designed this baby and chose us to be his parents. Google scared the (insert bad word of choice) out of both of us with worst case scenarios and suddenly the complex heart defect went to the back burner while we poured over studies and information (or lack thereof) about his chromosomal abnormalities. After a lot (and I mean A LOT) of praying and waiting, last Monday we finally got to meet with most of our medical team at Vanderbilt. We had a thorough ultrasound, met with an MFM about the findings on the ultrasound, met with a genetic counselor about the chromosomal abnormality, met with a social worker about dealing with all of this and ways to get help if needed, and then finally met with our cardiologist for another echo and an official diagnosis.
Praise Jesus, the chromosomal abnormality does not appear to be life altering for our little guy. According to our genetic counselor, she said he should look and act like a boy. (We feared he might be ambiguous.) She had researched and only found 11 other cases of his specific genetic mutation, some of which had been terminated. Her evaluation of the situation was, that if we hadn't been poking around his chromosomes for an answer to the heart issue, we never would have known he had a thing different with his genes. He is, indeed, missing some Y chromosomes from some cells, but the cells that do have Y are mutated and include an extra portion of the male-making instructions. God is amazing. In my mind, this makes up for the missing Ys. Yes, I admit, we have a 3D pictures of our little boy's man parts on the fridge. :-) He is, indeed, and boy. She can't seem to find anything that would indicate any other issues for him other than the possibility of being sterile. We'll have some more genetic testing done when he is older so that he will be aware that he carries a mutated Y. He will need to know if he might pass it on to his children or if he can even have children. In the mean time, however, his funky Y chromosome is on the back burner. (Chris says he will be an x-man because he has a genetic mutation.... boys, lol.) The cardiologist says this may have caused his heart condition. The OB says this may have caused my miscarriage last year, if it was a boy. Those questions will remain unanswered for me and that is perfectly fine.
His Precious Heart:
In short, it's a hot mess.
Ty has a complex heart defect. He has been diagnosed, therefore, with Congenital Heart Disease.
Problem #1 - Coarctation of the Aorta. This means his aorta is narrow, so much so that our cardiologist fears that it might be fused shut. When Tyson is born, he will be immediately given IV medication to buy us a couple of days. All babies have an extra part in their heart that alters the way blood flows through their heart because they get oxegenated blood from their mothers. This medicine will keep that from sealing up after birth, like most infants, so that he can be in the outside world for a least a day or so before he has to undergo heart surgery. They will remove the narrow part of his aorta and sew the two ends together. Hopefully this will be done through an incision on the side of his chest. If his echo after birth shows that a larger portion of his aorta is fused, this surgery will become open heart and might require the use of other material to replace the part of his aorta that they have to remove. Either way, we have been told to expect a lengthy ICU stay after he is born, somewhere in the neighborhood of 4- 6 weeks for this repair. While they are in there, they will band a portion of his heart to help prefect congestive heart failure from this other defect while we await surgery number 2.
If all goes well, after 4-6 weeks, we will get to bring Ty home for a few weeks (6-8 probably) before we return for surgery number 2.
Problem # 2 - Antrioventricular Septal Defect (AVSD). Surgery two will address this defect. They will remove the band that is in place to hopefully delay congestive heart failure and proceed to work on the issues involved with AVSD. They will patch a hole between the top two chambers of his heart and patch another hole between the bottom two chambers. Then, they will take his too-large atrioventricular valve and separate it into two valves (it should have done this in early pregnancy, but his stayed as one large one instead of two smaller ones). This will be the "classic" open heart surgery through the chest and will keep us in the hospital for 3-4 weeks if all goes well.
THE GOOD NEWS:
First and foremost, God is good ALL of the time. He is with us and with our precious baby boy every step of this journey. There is purpose to everything and though we might not ever know how, God is using this situation for His glory.
Second, while in utero, our little man is fit as a fiddle! Because his oxygenated blood comes from me, he is oblivious that he is presenting such health challenges. He is developing as any 29 week old should and until shortly after birth will not be impacted by his little heart.
Third, we found out early! From my reading, it would seem this is a huge blessing. Some people take their babies home and don't find out until weeks or months later that their child has a CHD! Sometimes even after tragedy strikes. We are comforted to know that we have a great team at Vanderbilt that know what is wrong and how to fix it.
Last, although our guy will probably never be an Olympic athlete and may have a leaky valve, he should lead a happy, healthy, full length life. He will always have a cardiologist and follow up visits, but if all goes well, his repairs will grow with him. If we can get through the first year, we should be good to go.
We Need Your Help (and the help of your friends and family too!):
Because every parent wants to be with their child when they aren't well....
Because we have two other children to care for and to get to and from school and activities...
Because we need to maintain as much "normal" as we can for our girls...
Because we live a pretty good distance from our closest family and several of our friends...
We feel that it is a need for Chris to take FMLA time off while Tyson is in the hospital. This will result in a major loss of income. We will also be logging lots of miles back and forth to Nashville. We have already been incurring income loss and additional medical bills for the many tests and specialists we have already seen. I will start weekly trips to Nashville next week - to 100 Oaks for OB and Vanderbilt for MFM and Cardiologist visits.
We need financial help!
We have set a goal to raise $15,000 before Tyson is born so that as we begin to face time off work and medical bills, we can focus on Ty's needs and not worry about how to pay the bills. There is a paypal donate button at the top of this page. You can make a donation to our family's needs with any major credit card, bank account, or pay pal. We will be eternally grateful for each and every donation. We also ask that you share our story with your family and friends and ask them to donate as well. This is a heafty goal and we feel awkward raising funds for our own family, but we just don't see any other way.
Last, and most important...
Please pray for Ty and for our family as we go through all of this. We worry, of course. We worry about our girls and how this will turn their world upside down. We worry about Ava Grace even understanding what is going on and why she can't meet her baby brother. We worry about Ty and the battle he has to face just to survive. We try to turn all of these worries over to our Lord and trust that His plan and His will are so greater than our own. Please join us in praying for health, healing, and provision for our needs.
Thank you so much.
We will use this page for updates throughout this journey. We felt like it would be best to have one place to update everyone.
Monday, January 13, 2014
I often find myself wanting to hop on and post, but then something distracts me. I pressure myself into what I think I should really be doing instead of staring at the computer screen. Sometimes I persuade myself not to post because I haven't done it consistently and if I'm not going to do it 100% I shouldn't do it at all. Seriously? Why do we put pressure on ourselves? That pressure doesn't come from anywhere but within. So, today I kind of wanted to post. Then I read my friend Lena's new post at her brand new website and I was a bit inspired. Following that I read this post and was even further inspired. So I'm posting because I want to today with no promise of regularity of perfection, but just the opposite... transparency and beautiful imperfection! There are many things in my day and life that have to be consistent and regular and dependable. This is not one of those things and I will not pressure myself into thinking it is. This is for me and for you and for fun.
Ava Grace turned TWO Saturday! We had a mostly-family, laid back, doughnut brunch for her birthday! Those of you who know her well know that she loves "dough-utts!" It was so fun to visit and watch our "big girl" be wound up and wild for her birthday! She proclaimed herself a princess and thoroughly enjoyed all of the attention of being the center of the world for a whole morning!
We are so proud of our little princess. Just about the only time she's not talking is when she is singing. She is mighty and wild and has a spirit that can't be contained! She jumps and tumbles and flips and flits and rarely cries - she is one tough cookie. She is working on sharing and taking turns - those are HARD lessons when you are only 2. Some days she is better at them than others. She loves to "write" and to read books and play baby and doctor. She practically tried to potty train herself, but still has a stubborn streak and won't go when she's busy - so the pull ups are still on! She really enjoys building things with her leggos. She is pretty amazing to tell you the truth. She's also hilarious, has a great sense of humor, and loves to make us laugh.
She LOVES her grandmothers! And I mean loves them! She loves just about everything and everyone, come to think of it. She is always so happy and full of joy. It brightens every moment of my day.
I am so proud to be Mommy to this jewel! I am sometimes surprised at how blessed I am and so thankful that God entrusted this gift to Chris and I.
Happy Birthday Beautiful!
(I still can't believe you are 2!!!!)
(I still can't believe you are 2!!!!)
And... just because I like having menu plans to look back at for ideas, I'll post our menu for this week!
Grilled pork chops and roasted root vegetables
Crock Pot Steak and Gravy
Rice and Green Beans
Chili or Veggie Soup
Fajita chicken and veggies
Garlic Chicken and
(nearly) fat free mashed potatoes
with green beans
Tuesday, November 12, 2013
Warning: Total stream of consciousness post. Just clearing my head.
(This is my view every morning out of our bedroom window before I get out of bed. It's such a peaceful sight to wake up to!)
I miss blogging, but time is so valuable these days! I haven't been here blogging, because my "spare time" (ha-ha) on the computer has been spent creating family photo albums on Shutterfly. I have finally switched everything to Shutterfly and I am doing all of my albums on there instead of the old way - ordering prints, putting them in albums, and writing captions. So, over the past month or two I have gone back to January 2012 and worked my way forward. Yesterday I finally caught up!
("Touch it snow mommy!")
So, today I sit here. Just finished my quiet time. Mickey Mouse Club House playing. I am sipping coffee. Ava Grace is running around in her footie Pjs half watching tv and half playing baby. It's snowing outside (yes, you read that correctly). I'm snuggled and warm and have no where to be until 2:00. Great time to blog, right? Yes. I think so. But then I also think it's a great time to read my magazines that are piling up. It's the perfect time to do a load of dishes and start some laundry. It's the perfect day to "catch up" and I need to go to the grocery store. I could put up the fall decorations and start getting out some Christmas stuff. It's a great morning for story books and puzzles in the "fort" with Ava Grace. It's cold and good time to snuggle and watch a movie with her too! My mind quickly gets clouded with all the want-to's and the have-to's and it is so hard to choose. (...and I'm thankful to have so many choices. That in and of itself is an amazing blessing.)
Confession: Most days the only thing on the list above that actually gets done is meal preparations, a few dishes and a load of laundry if we are lucky. I spend much more time playing kitchen, baby, working puzzles, reading story books, and pretending that we are zoo animals than I do cleaning, catching up, or... blogging... obviously. Sometimes I let a little guilt creep in and think of what I "should" do with my time, but then I try to always remind myself that I have never heard a parent say, "I wish I had spent more time cleaning and less time playing..." or "I wish I had spent more time at work..." So maybe I am doing okay.
In the light of our miscarriage last week, I find that a bit of the cloudiness has cleared. I feel reflective. I feel the need to simplify. Our family stays way too busy and spread way to thin. We need to be home more. Play more. Go less. This weekend while I recouped from the procedure Friday, we stayed home. My Mama was here to help - it was so nice having her here to just be with us. Chris had to take care of some things Saturday, but other than that we all spent the entire weekend at home in our PJs. The girls played, we relaxed and watched a good mix of Christmas movies and football. We all took naps (except for Lily, of course), and it was peaceful. We need more peaceful and less... well... less of a lot! Less stuff, less obligation, less self-inflicted pressure.
("Do'wat 'gin Mommy! It Cooooold")
So I guess today the answer to the question "to blog or not to blog" was... blog. Just a record of my thoughts. Not perfect or proofread or written in one sitting (in the process of this post we have had a doughnut and chocolate milk (and more coffee for me) - total indulge... taken baby for a stroller ride... changed clothes... and played in the "snow" on the deck - she couldn't resist). I think my goal this week is to take each day one at a time and to just be. Just be me. Take care of what is most important and not worry too much about what doesn't get done. Maybe I'll blog again this week.... but if I don't I won't let myself feel conflicted about it. We'll just wait and see.
Posted by Meagan at 6:28 AM
Monday, September 9, 2013
Beans and Rice
Buffalo Chicken Sandwiches
Leftovers or Pizza
Monday, August 26, 2013
Chicken Bacon Ranch Quesadillas
Cheesy Chicken Noodle Casserole
Grilled Pork Chops
Steamed Broccoli and Cauliflower
Smash Hot Potatoes
Saturday and Sunday:
Plans with family!
Sunday, August 18, 2013
Grilled Pork Chops
White Chicken Enchiladas
Home Made Pizza
Grilled Burgers or Hot Dogs
Tuesday, August 13, 2013
My phone is full of pictures and I try to load them to the computer and clear them off the phone on a pretty regular basis. The key word there is "try." It never actually happens. I usually only manage to do it every 3 or 4 months. Today, I did just that. So, here are a few of my favorite phone photos from this summer...
Grandmommy and Ava Grace picking flowers.
You know I had tons of pool pictures.
I'm only sharing a few, but had to share this one of our sweet neighbor and friend, Kassidy! Both our girls love her and think she is the coolest.... because, well, she is! Have I mentioned today that we have the best neighbors ever? Ever.
This picture is posted as proof that I exist. It's a running joke at our house because I am always the one taking the picture and thus never in them!
These two have gotten crazy close over the summer. Chris is just plain and simply the best. daddy. ever.
If one paci is good, two is better, right?
Playing at the park with Papaw.
Ava Grace is a little dare devil! She loves to slide and swing!!
This was the summer of the scooter for Lily! This thing went everywhere with use!
Okay, one more pool picture! This water bug is all about "wimming." She even jumped off the diving board at Grandmommy and Papaws!
Too cool for school...
LOVES Mommy's glasses!
Chris and Lily at her favorite place...
the ZOO of course!
Fun with Daddy at the gym!
Sister can put away some milk!
The best view is from daddy's shoulders!
Okay, a couple more pool pictures.
They are just too darn cute!
Ava Grace loves to go to the golf course and ride in the golf cart and "help" Daddy golf. Last time we went, she insisted on bringing her own clubs and playing alongside Chris. It was too cute and she was so proud of herself!
Fishing at the park.
2nd day of 4th grade! I forgot to take a picture when we picked her up on her first day... ooops! She is getting so big and grown up... I STILL can't believe she's a fourth grader. Every time I say it sounds weird!
Lauren and Courtney's new addition, Connor!
Me and Connor
Courtney and Connor!
He is the CUTEST little thing! I was blown away at how tiny he was. I swear I don't remember Ava Grace being that small. Too. Too. Sweet.
Ava Grace's new, most-favorite-in-all-the-world thing to do is play "chi-chen" (kitchen). We moved Lily's play kitchen to the loft and Ava Grace has played with it every single day. She takes me to the bottom of the stairs every single morning and asks to go up and play kitchen. This morning I snapped this picture of her serving me a breakfast of hot dogs, chicken and a very large carrot. Yummy.
Dinner and a movie!
This little plastic chair and table, that we got for the deck, have been loved and used all summer! Inside AND out!