Home Sweet Home

"Lacie Rae had a great day today! Above the line!" She told us that her Mommy and Wyatt slept at her house last night! :)"
~note from Miss Lee Anne the day after we came home (her teacher at school)

Going in to this, we knew that it was going to be hard but we also had a sense of security about it. After all, we had one of the best surgeons in the country, we were at one of the best Children's hospitals and this was a pretty routine procedure. As all of the nurses and doctors said, "Of all the heart defects to have, this is the easiest to fix." But then the uncertainty started....the "bounding pulse" in his left groin (could there be another coarctation in his belly?) That led to the MRA which was a total disaster ending with him on the ventilator and on the CVICU floor 2 days earlier than we thought. Nothing prepares you for seeing your 1 1/2 week old baby like that - especially when you think they are coming back to you just as you left them. This is where the adrenaline kicks in. For 8 days, that is how we got through each day - pure adrenaline. You think you would be pounding coffee, caffeine, 5 hr Energy drinks....but you don't. It is like you totally shut down to what you need - physically- and everything becomes about what you have to do to make sure your baby survives.

I think that has been the hardest part about being at home - the transition from being in over drive to trying to slow down, relax and get back to normal. Or should I say our "new" normal - after all, we have added another baby to the mix! Things that are healthy baby things like being awake all day one day and sleeping all day the next can be cause for alarm for us - if he's too sleepy we have to ask "Is his blood pressure too low from the meds?" or if he is crying a lot - "is his incision sore or is he in pain?" so trying to relax is hard but does get easier every day.

I keep thinking that there is something greater that we should be taking away from this experience. A few lessons are obvious....one being is that my own personal faith is so much stronger than it has ever been before. I have learned that I am not in control and that is OK. Trust is a beautiful thing when it is given to Him.

Also, just yesterday, Lacie woke up from her nap while Jason was outside. She wanted to go help so we walked into the garage....Jason had the new Mumford & Sons playing, the weather was beautiful and Wyatt and I sat and watched as they finished up washing my car. A simple - what some would consider boring - Saturday afternoon but was one of the most beautiful memories made yet for our little family. A new appreciation for the every day things and all that we have is also a very moving feeling. Reminds me of a quote I heard not long ago, "Gratitude turns what we have into enough"

I think we will continue to learn from Wyatt and his story. He is such a strong little boy- both literally figuratively. After all, he had major heart surgery at 2 weeks old and came home (with no pain meds other than Tylenol) 6 days later. I cannot wait to see what lies ahead for him - he truely is an inspiration and my new hero.

Leaving the hospital !!

Somebody is so excited Baby Brother is coming home!

Sign that Lacie Rae made for the occasion!

Another sweet sign



2 peas in a pod

Waiting, Waiting & a Little More Waiting....

"Adopt the pace of nature: her secret is patience."
~Ralph Waldo Emerson

Not a lot to update - we have just been doing a whole lot of waiting and a whole lot of nursing. Wyatt's weight is the only thing standing in between us and home. He checked in at 9 lbs 15 oz last Monday (oh my gosh, I can't believe we've been here a week already) and weighed in at about 9 lbs 6 oz this morning. Not a huge drop but each day it fluctuates a little and they would like to see more of a consistent upward trend before we are discharged. He is still taking this medication called Lasix which is used to reduce fluid retention so it makes it even harder to gain weight at a good pace. BUT- we are working at it and we'll get there.

Good news is: he gets stronger every day, his congestion from the vent being in has cleared up and we are making a ton of new friends ;) All of the nurses love him and ooo and ahhh about how sweet he is. Already a hit with the ladies = trouble for me when he's older!

Lacie Rae and I got out for a few hours this afternoon and went to Discovery Place. We had such a good time and it was so nice to see her sweet smiling face for longer than an hour. I miss her dearly and cannot wait to get home so all 4 of us can settle in to our new little family life. While we were having girl time, Daddy and Wyatt watched a little football and Wyatt got his 1st bottle of "mommy milk" - took it like a champ!

Lacie is getting more and more comfortable here at "our hospital" as she calls it. She pulled a chair over beside Wyatt's bed and was inspecting what was inside. She said, "We're about out of diapers when he poops!" so I told her to call the nurse and ask for some more. We were shocked when she actually did it! One of those moments you wish you had on video "Could you please bring more diapers for my baby brother?" Absolutely adorbs....

Go Panthers!

Jelly Fish!

An exaggerated sassy pose

Big Sister Cupcake

Not scared to touch anything!

Watching out for Baby Brother already

 

Moving on Up!

You think they would move you down- as in closer to the main entrance-when you are getting ready to go home but instead we went up to the 8th floor - Progressive Care floor yesterday. The ICU & CVICU (Cardiovascular Intensive Care Unit) staff was amazing but we were glad to get out of there.
Thankfully, Lacie Rae was here when they moved us so she actually got to ride with us on the big "elebator" to take Baby Brother up here - and this was also the 1st time she's seen him since Monday morning. She had her poker face on but I think she was excited to see him. :)

We spent the afternoon working with Wyatt on nursing, hanging out and watching Aladdin w/ Lace. Speaking of Aladdin - this hospital is so incredible for a lot of different reasons but 1 is how accommodating they are to siblings of little ones that are here. We were in one of the many play rooms yesterday so Lacie could get some energy out (and we could check out a movie) and one of the volunteers came up and asked if she would like a goody bag. I told him that she wasn't  the patient and he said "Oh I know but we like to serve the entire family that is here not just the patient" -- I'll admit, I teared up at that and he brought over this awesome gift bag with a sketch pad, markers, colored pencils, play doh, etc....she felt so special! Then he even brought her a "baby" one to bring back to the room for Baby Brother that had a couple of baby toys and a blanket. Both bags had cards in them and it seemed like maybe a boy or girl scout troop or church youth group or something like that put them together. I'll never be able to thank who ever did that but my goodness, I hope they know how much it means. It's the smallest of gestures that go the longest way.

Last night, 3/4 of our little family got to go down to the cafeteria to have dinner together. It was so nice to be able to feel somewhat normal again - LR was super excited and very animated which can make any day brighter!

Other than that, we've just been hanging out. They have started to let me give his meds to him to practice for home - which is just 3 - an ace inhibitor to improve his heart function, a diuretic to get rid of some extra fluid and Tylenol. They also let me un hook the monitors so that we can both get comfy to nurse and snuggle - which is nice b/c it gives me some time to get used to him not being hooked up 24/7. Again, it's a love/hate relationship with those things. His incision is relatively small and actually on his back - strange, I know, but that is the best way to get to the aorta - it's really simple to take caare of that - just soap and water 2x a day.

The dr.'s haven't rounded yet this morning so I'm anxious to see what the schedule is as far as discharging us goes. Maybe today or tomorrow. :)

Riding in my new big boy bed to the 8th floor!

Cafeteria food isn't so bad!

Snug as a Bug in a Rug

Making Progress

We're on a good run here and honestly, I'm a little afraid to post about it for fear of jinxing it BUT...I'm just too excited not to!

For starters, last night Jason and I got one of the "golden keys" to the Family Sleep Room. We opened the door and found a double bed, sound machine on the night stand and gasp! Our own private bathroom.....WITH A SHOWER!!!! We both were so pooped that we were asleep within seconds of hitting the pillow and actually laughed this morning about how we felt like we got too much sleep.

I was so anxious about the vent coming out today. All of the nurses were preparing us for a long several hours before hand - they told us Wyatt would be very uncomfortable, trying to cry with the vent in (which is absolutely heartbreaking to watch by the way), etc... In fact, a couple of them said we should plan to be out of the room for it but I wasn't about to leave him there to go through that by himself. So - I hunkered in and got my game face on only to again, be amazed by my Baby Boy. The process started around 9:30am and the vent actually came out at around noon. I think I saw him try to actually cry only 2 times. He was so calm and collected. After the vent came out - we talked to him, ooed and ahhed at how much better he looked and then I FINALLY got to hold him. What a beautiful feeling that was. My gosh, I am at a total loss of words for how to describe it but I can tell you one thing, I will never forget it.

This is where the day got even better.....all of a sudden, tubes/equipment started disappearing! Obviously, the vent was gone but then the feeding tube, the chest tube, the atrial line, the thing on his head that monitored the oxygen to his brain! It was so awesome to watch him start looking like our baby again. As if all of this wasn't enough progress for the day after surgery, he has nursed twice now and latched like he never missed a beat = another huge step to recovery and getting out of this place!

They moved us tonight to another room in ICU but we are off the critical care bay so that is a relief. I haven't heard a machine beep at me since this morning - which oddly enough is a blessing and a curse. I hated them before because they are so scary but now I kind of miss them. Not because I want him to be setting them off but b/c it is a little comforting to know that they are being monitored so closely. Of course, he still has his vital monitors on but our nurse for the night said he looks so good that she is going to try and leave us alone as much as possible. I'll try to nurse every 3 hrs and we'll see how it goes.

Here are some pics from the day. It is hard to put into perspective how much better he looks in these because ya'll haven't seen him all hooked up but trust me, its 1,000 times better from where we were!

Right after he came off the ventilator

Holding him for the 1st time in 2 days!

He's missed his Daddy

Big Smiles!

Sleepy Boy after a big day

Stepping Stones

Today has not at all gone as we planned.....

Wyatt had a MR Angio this morning at 10am which is essentially a specialized kind of MRI to look at all the arteries/vessels in his tummy and groin to see how everything is connected and if there are any other coarctations that we need to be aware of. One of the major signs of an aortic coarctation is little to no pulse in the groin and his pulse is "bounding" on the left side. They had to sedate him for this procedure b/c he had to be totally still. To make a long complicated story short, since the MRI machine uses magnets they could not use warming blankets. Wyatt got too cold during the procedure and his lungs began to collapse because he wasn't getting the # of breaths he needed. He is stable now: body temp is back up to where it should be, vitals look good, but he is on the vent and on the Cardiovascular Intensive Care Unit floor.We thought that he would have the MR Angio and then come back to our regular room for the rest of the day/night, hang out all day tomorrow and have surgery Thursday. We didn't realize how good we had it in there. I could hold him, feed him, snuggle him...... In this room, I can put my hand on his sweet little head and talk but that is it. It literally knocked Jason and I off our feet when we walked in and saw him like this ...... I can't even explain it and honestly don't think I will ever get this image out of my head. Terrified is the only word that I can think of to explain how we feel right now - trying to keep our faith strong and praying literally about every 5 minutes. Jason made a good point though - this is not what we expected but we are one step closer to surgery. One step closer to recovery. One step closer to going home.

 His surgery has been moved from Thursday to tomorrow around 1:00pm. It should take roughly 5 hours from the time they take him back until the time we see him again.

Tomorrow is going to be another doozy I'm sure so please pray for strength for my baby boy, wisdom and skill for the surgeons and calmness and peace for me & Jason.

Updates to come as we get them......

"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

Sign we made for Wyatt's little crib here at the hospital

SO much has happened since Wyatt was born that I have honestly been putting off updating on the blog. This is going to be a long post- so settle in.....

Our sweet baby boy was born on 9.12.12 at 9:37am. There is a little discrepancy on his birth weight that his Daddy and I are debating about - in the OR, he weighed in at 9lbs 10oz. When they got him out the dr and nurses were saying "Oh my gosh! He's a toddler!" BUT....when he got to the NICU, he weighed in at 9lbs 5oz. I go with the 9-5. Jason, of course, is sticking with the 9-10. :) He is so proud of his BIG boy! At any rate, one thing is for sure- he was 21 1/2 inches long. Shortly after he was taken to the NICU - the Neonatologists came to see us in recovery and said that his initial echo looked great and they saw no reason to keep him in there. We were ecstatic and in shock as this was never an option given to us. We spent the next 3 days snugglin' and lovin on our sweet little boy and thanking God for allowing him to be with us.

To make a long story short- he had 2 additional echos before we left the hospital - all of which looked OK given that his duct had not fully closed yet. They felt confident enough that they sent him home with us on Saturday knowing that we had a follow up appointment scheduled for Thursday. Again, we were over the moon! He has settled right in - nursing like a champ, sleeping great and is so alert when he is awake. To top it all off, Lacie Rae is the best big sister ever! She is such a good helper and loves to "just kiss him on his head"

Wyatt had his follow up appointment Thursday with our cardiologist that we've been seeing since I was 18 weeks. He could not come to the hospital b/c he works for Presbyterian and I delivered at Carolinas Medical Center. ANYWAY- Wyatt does indeed have aortic coarctation (where the his main artery - the aorta - narrows significantly in one little spot which restricts the blood flow to the lower part of his body). The blood pressure in his legs was 30 pts lower than the blood pressure in his upper body. It should actually be equal if not a little bit higher.

The doctors at the hospital did not do anything wrong - they knew there was a slight narrowing but until that PDA duct closed all the way - there was no way to tell just how significant it was. Yesterday it was finally closed all the way so we had a definite answer....Dr. Ohmsteade said yesterday that it was "moderate" (on a scale of mild, moderate, severe). We also found out that he has an Atrial Septial Defect ( a hole in between the upper chambers of his heart) that we had no idea about. Dr said it was small and he wasn't that worried about that- we could just monitor it. Sometimes they get smaller and even close on their own.

So- he sent us home with instructions to keep a close eye on him over the weekend for signs of "distress." We go back Monday morning at 11 for another echo. If it is worse, we go straight to Levine to check in for surgery (through the side procedure). If it is the same, we come back home and follow up again. He WILL have to have this fixed - the question is just when.

Jason and I have went back and forth about whether or not to "share" this on Facebook but at this point- my thought is-the more people praying for our baby, the better. We have known about the possibilities since May so it is not a surprise to us but the roller coaster of good news, then bad news...has been exhausting. We appreciate all prayers and well wishes more than you know!

I will post more tomorrow after the appointment.

Thanks again for your continued love and support -
Jason, Melia, Lacie Rae & Wyatt

PS- If you are new to the blog- you'll have to scroll to the bottom and read up for the full story.

 

 

Levine Children’s Hospital (LCH) announced today almost $2.5 million in local funding to support pediatric cardiovascular services and the pediatric congenital heart program. These significant commitments came through the Partnership for Pediatric Hearts, a group of individuals and businesses dedicated to supporting pediatric care in the community. The Partnership was established earlier this year by an initial gift of $1 million from NASCAR and automotive business owner Rick Hendrick and his family. Two additional $500,000 pledges – one from the Tansukh Ganatra Family and the other from the Dreamcatcher Society; a recent $300,000 pledge from Showmars in honor of their 30th anniversary in business; and a matching commitment from Carolinas HealthCare Foundation brings the total amount pledged for LCH cardiac programs to almost $5 million. Levine Children’s Hospital has also committed to invest substantial resources in this initiative. Funding from the Partnership will support equipment and resources to help advance what is already one of the fastest growing programs at LCH. Just five years after opening, the hospital was recently ranked #33 by U.S. News & World Report for its cardiology and cardiac surgery program. LCH is the only facility in the region to provide pediatric open-heart surgery; a pediatric catheterization lab; heart transplant and heart assistance devices; and ECMO (heart-lung bypass).

 

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