Home Again

Sleepy, but happy to be heading home!

We were discharged and able to head home on Friday and oh is it so nice to be back!  While we love all the fabulous people who take such great care and give such great attention to our Miss Sloan at UofM Motts, it's amazing how quickly you fall back into old hospital habits even during just a quick 2 day stay (losing track of time/which day it is, making beds out of what's available - for Kyle that was a yoga mat on the floor, staff coming in to take vitals on Sloan every few hours...whether she was sleeping or not).  So needless to say, we are all happy to be home and back in our own beds and on our own schedules.

So here is the results of Sloan's cath procedure.  Dr Armstrong was successful in getting access to Sloan's aortic arch and ballooning the exact space they suspected narrowing (where they did the original repair).  While in there, they also found that her heart had started to grow some additional vessels, which were not needed, so they coiled these off.  We don't want Sloan's one ventricle working to pump blood to these additional vessels when, with Sloan's heart, they are not needed.  They also just went in and took a good look at Sloan's entire heart to make sure all looks ok in other areas as well.  Nothing else was found from their research.

As for our path forward from here, we just continue to watch & monitor her arch.  If her arch grows as she grows, they don't suspect they will have a narrowing issue again.  If it doesn't grow with her, then we'll have to discuss other options (another trip to the cath lab or potential surgery).  Our hope, and prayer, is that this will resolve the issue long term and we don't have to worry about things in the future for this.  But as we do with everything for Sloan, we take things one day at a time, enjoy every moment together and worry about things as we need to.

Thanks for all who have been thinking and praying for Sloan.  This little hiccup was definitely not suspected or wanted.  But we feel fortunate that they found it early and were able to take care of it quickly.

As each day passes Sloan is more and more back to herself.  As I've said before, her resiliency amazes me.  She's one strong little lady!

Just out of the cath lab and still really groggy.  Entry points were
in her neck & groin area

Finally got her to take a much needed nap

Starting to feel better around dinner time that night

Happy to have clothes on and be one step closer to getting out of here!

Ready to go home

Ten Months Old, Big Brother Turns Three, Thanksgiving and a Cardio Update

Updates, updates and more updates....wow am I behind!  The past month has been pretty active, here are the highlights:

Sloan's Ten Month Stats:

- Weight & Height: 21lbs, 8oz.  29.61 inches

- Milestones/Personality: 

+ She is on the move!  Pulling up on furniture and crawling up stairs.  She barely wants to be held any longer, rather be on the floor

+ Another tooth has come in on the bottom - that makes a 7 teeth in total at 10 months

+ She's still a talker...says bye bye, mama, baby and has one of the loudest screeches you'll ever hear!

+ We were officially discharged from therapy!  Sloan scored right on target and they were very happy with her progress

Kisses for the baby

Crawling up the stairs

Big Brother Turns Three:

One Nov 22nd big brother Drake turned three years old!  We had a carnival themed party for him and he had a BLAST.  Sloan also had a lot of fun seeing some new faces and getting lots of attention.  Drake's favorite part of his party...the bounce house!

Drake's Big Top - love his face (hah)

The bounce house...his favorite!

Thanksgiving:

Aunt Vicki, Uncle Peter and cousin Aiden came up from Atlanta for Thanksgiving so Sloan was able to get some extra attention and love.  Drake was on cloud nine with Aiden around.  I think he asked for Aiden every morning when he woke up.  It was so nice to spend time with them and the rest of the family and to let the cousins all interact together.  

Cardio Update:

We headed up to UofM this past Monday 12/2 for our standard check up.  They wanted to pay close attention to Sloan's aortic arch, that they have been watching, so concentrated on that during the echo.  They found that her pressures were measuring differently than last time and when they took her blood pressure they also noted that there was a difference between her blood pressure in her arm and in her leg.  Both of these are signs that there is some narrowing in her aortic arch.  Dr Armstrong said that in babies with a defect like Sloan has (hypoplastic aortic arch - this is one of her defects) that 10% of the time there can be scar tissue that forms when they do the repair which causes narrowing.  This is what they are suspecting but they cannot be sure until they go in and take a look.  So we are back today (as I write) for a cath.  Basically they are hoping that they can go in, take a good look and if there is narrowing they can balloon the arch to open it back up.  If that doesn't work, then we will be talking about another potential surgery to fix this issue.  You wouldn't know there is a thing going on with her, which I guess is good, as she looks great, has good energy and is acting like her same old self!

We'll keep you posted on how the cath goes and what our path forward is from here.  Our hope is that they just need to go in and balloon and we are back on track!

At the hotel, practicing on Bear for tomorrow

Telling her goodnight and we love her before
she's off to the cath lab

Nine Months Old & Halloween

Wow - this past month has been a big one in regards to milestones for Sloan:

Sloan's Nine Month Stats:

- Weight & Height: 19lbs, 12 oz.  29 inches

Getting ready for the UofM vs MSU game

- Milestones/Personality: 

+ And we are officially crawling. It started about three weeks ago with an army crawl and then moved to hands and knees about one week later. She's getting along pretty good now.  She's not too fast, but I am sure that will come.
+ Sloan is able to pull herself up to her knees from a crawling position by moving over to furniture.
+ She loves to play patty cake. You just have to say it or start singing it and she will begin to clap.
+ She'll pass out kisses when asked....it's adorable!
+ When we place her standing next to furniture she is able to hold herself up there. She's not able to pull herself up to standing...yet. She loves seeing the world from this new view.
+ During our last therapy appointment, they said she seems to be catching on so well that we can  move to monthly visits rather than every other week.

We received a good report from our last cardio appointment with Dr Grifka. Her oxygen levels were in the mid to high 80s, she sounded good and her x-ray looked good. We don't go for another appointment until December in Ann Arbor where we will have a full day...echo, ekg, etc. Here's to hoping we receive good news at that appointment too. We are starting to enter cold and flu season so I am a bit nervous as I know we need to keep her as healthy as possible and keep those germs away!  We are all prepared with our flu shots, so hopefully we'll all stay healthy this winter.

We also celebrated Sloan's first Halloween this year and the kids were dressed to the nine's! We spent the time together as family and visited with both grandparents. We did take Drake around the block to trick or treat, but left Sloan inside where it was dry and warm. Here are some photos from the past month to get everyone caught up!

Giving kisses...ok this one looks more like biting :)

Halloween with mimi & poppi...the brains and production
behind these amazing costumes!

 

Pirate Drake

She's standing!

Our little octopus

If You Only Knew Then What You Know Now

Last week, September 28th, marked one year since we received the details of Sloan's diagnosis. I still remember the day so vividly; the outfit I wore, the drive to UofM, laying on the hospital bed crying as the tech carried out the fetal echo, the tech telling us she didn't think it was Hypoplastic Left Heart and for a moment me thinking our prayers had been answered. And then, shortly after, her mentioning Tricuspid Atresia which she stated was a serious CHD. As we cried, the tech began crying with us.  That started a lot of dark days for Kyle and I as we rode the emotional roller coaster a congenital heart defect brings to a family.

And now I look at where we are and wonder...if I could have seen what life would be like one year from that day at UofM, could I have saved myself a lot of tears? If only I had that crystal ball.

This little girl, and her brother, bring so much joy to our hearts. We feel so blessed and thank God each night for every moment we have together.

Here's to many more years from that life changing day of health and happiness!

Eight Months Old

Sloan turned eight months and she continues to do really well!

Sloan's Eight Month Stats:

- Weight & Height: Well now that we are only going for bi-monthly appointments, I don't have an update here.  I did weigh Sloan on a scale at home, and she showed just over 18lbs, so I know she's growing!

- Milestones/Personality: 

+ We've got more teeth! This little girl is going to have a mouth of chompers before her first birthday! We had four more teeth pop through (all on the top). 

+ Sloan's now a pro at sitting and doesn't need any support. She's even starting to go from sitting to her belly by learning forward on her hands and pushing her feet out behind her. 

+ She's trying her hardest to get up on all fours. She's made a lot of progress here in the last few weeks  At times, she'll be able to get her knees underneath her, we just need to help her keep pulling those knees close together so she can stay up. When she does get up on her hands and knees, she really enjoys rocking back and forth. 

+ We are beginning to catch Sloan waving periodically when people say bye bye to her. And she'll typically give you kisses (open mouth of course) when you ask her to. 

+ She continues to adore her brother - watches his every move, laughs at him when he pays attention to her and always wants to be by him when he's around. And is still the chatterbox she's always been - singing, growling, saying ma ma ma and da da da.

I recently took Sloan in for a physical therapy & occupational therapy evaluation.  I had asked my pediatrician to refer me to get the evaluation and am so glad that she did.  The evaluation consisted of two one hour assessments  Her OT assessment she completed with flying colors. In some areas, she graded above where she needed to be. Her PT evaluation went well, but there were some concerns that put her boarder line in a few areas. Primary concerns were around: preferences rolling to the left, preferences using her right hand, and weakness in her hips (which would prevent her from crawling). So we are now going to PT every other week for rehab sessions.  It's been great so far. They had told me they feel that she'll need one to two months and then will be caught up. They think that she'll catch right on after we start working with her regularly. I've already seen improvements just from the first session to the second and am so very grateful that we are able to do this.

We also got back our family pictures from our end of August session.  Here is a quick preview.

Seven Months Old & The End of Summer

Where has the past month gone? I can't believe it's taken me this long to post. I will fully admit I have been slacking, but it's for good reason - we have these two adorable kiddos to keep us racing around!

 

We've been busy trying to enjoy the end of summer and make sure that we help Sloan heal since her last surgery. We had a check up appointment at UofM on Aug 12th and overall it went pretty well. We ended up having to have an unscheduled echo due to a heart murmur that they hear on Sloan. Dr Armstrong said that after the hemi they usually don't hear murmurs so she wanted an echo just in case. In the echo they saw that her aortic arch is a little bit narrow and has a 90 degree turn in it (which are both things that they had before) so the good part of this is there isn't any change they are concerned about right now. The catch is they want to closely monitor the narrowing because if it was to narrow more they would need to do an intervention (i.e. heart cath). They are hopeful that if they need to do anything that they won't need to do it until her third stage surgery when she's two or three. Our cardiologist told us as we were leaving to not worry about this, so to keep my own sanity, I don't plan to until they tell me to worry about it. Moving forward we will visit our cardiologists every two months.

Sloan's Seven Month Stats:

- Weight: 16lbs, 3.6 oz 

- Height: 2ft, 3in (she's pretty much the same height as last month, just a slight growth but with rounding it still pretty much the same)

- Milestones/Personality: We've begun feeding her baby food...and she seems to be really liking it. So far she's had sweet potatoes, peas, bananas, apples, avocado and peaches.  There are a few top teeth trying to come through as well.  They are just at the edge of breaking the skin.  She's begun to roll much more frequently now - back to her old self prior to surgery.  She's also getting pretty good at sitting by herself.  She still needs us close by in the case the leans to far back or forward, but she will sit there by herself and play with her toys for quite a bit of time.  Sloan is also getting much better at her tummy time, she's even begun to push herself up on her arms! She'll also move herself around in circles to get different toys, but hasn't yet ventured in trying to push herself forward. It's exciting to see her progressing, reassures me that she's fully healed and feeling good.  She continues to be a talker and is starting to repeat noises like ma ma ma...could it be a sign that her first word will be mama?!?!  

With summer now officially over, I thought I'd share a few photos that sums up our summer adventures post Sloan's hemi-fontan. We are sad to see warm days go, but are excited about everything fall can bring.

Hope you enjoy!

Drake spent a day with his amazing god parents (Zac  & Christine)
visiting local farms, picking fruit, running through sunflowers and eating donuts

Flying a kite at the beach with dad -
one of Drake's favorite summer activities

We celebrated dad's 35th birthday in August

Drake went with mom to her dentist appointment in preparation
for his visit this November. He even got to ride in the chair

Fast asleep at dinner in dad's arms

Kissy face!

Getting good at pushing herself up on her arms

With her boyfriend Hudson, these two have no
idea that their parents have already set them up :)

We took many stroller rides this summer to
get out and enjoy the weather

Drake and his new balance bike.  He LOVES
riding it and has gotten really good at it

Our little beach baby - her first visit to the beach this
summer on Labor Day

Drake & daddy digging in the sand

This was Drake's "smile face" when I asked to take a picture of him

Six Months Old

Look alike?  I see more and more similarities
between these two

Wow, has it really been six months? That's what I tend to ask myself when I look back on our lives since Sloan joined us. What a wild ride it has been. This past half a year has flown by and creeped by at the same time. It's been such a challenging and rewarding experience, one that reminds me each and every day how blessed I am and what an amazing little girl we have!

Let's kick things off with Sloan's Six Month Stats:

- Weight: 15lbs, 12 oz (Her cereal twice a day seems to be helping to add some extra pounds!)

- Height: 2ft, 3in

- Milestones/Personality: Two teeth popped out since surgery, the bottom two to be exact. Sloan started teething prior to surgery (we could tell by all her drooling) and then after surgery she seemed to be in fast forward as they came in very quickly. I keep saying surgery has made her grow up, heehee. We've started to play peek-a-boo and she'll giggle and laugh at us. She also laughs at brother when he dances for her. Developmentally she seems to be on track cognitively but is still physically week. She has started rolling over from her stomach to her back again but hasn't ventured to really do her back to her stomach. Funny how she'll roll the way that gets her out of tummy time - the activity she despises the most. We've been working with her on rolling and sitting so hopefully those are to come soon.  Sloan also has discovered a new face & noise - she'll scrunch up her nose and start to breathe really hard till she gets a good laugh out of you. We've made a fun game out of it and we'll do it back to each other.  Here is a picture so you can get a visual on this one.  

My new funny face & noise.

I wasn't too happy with my mom when she was taking this picture,
but it is the best one to see my two teeth!

On the cardio front, we had a check up appointment with Dr Grifka this month and everything went well - we received a great report! When I arrived, and met with his team, I was able to spend some time with them talking about Sloan's surgery.  They actually both were able to go in and view Sloan's surgery so as you can imagine I had a laundry list of questions for them.  They told me that it was a very calm environment in the OR and that Dr Bove maybe looked up two times total during the procedure. There were maybe nine people total in the room, Dr Bove, his fellow, Dr Gifka's staff, a professor from Japan, anaesthesiologist, OR nurse and a few others. They had said that after the procedure was done, and the heart was beating again, that Dr Bove then spent time making sure everything was perfect - cleaned up any bit of fluid, cleaned up her scar, etc.  I adore that he's a perfectionist and seems to love and care for our little girl as much as we do.  When he was done, they said folks tried to speak with him but he expressed that the first thing he needed to do was speak to the Kyle and I.  How amazing is that!? He was worried about us - I cannot get over what a special person he is.

So all in all, we are wrapping up our past six months feeling really good and excited to kick off the next six (and many more) as a happy. loving family of four!

Hugs from big brother!

 

Stay-cation

Tomorrow will be two weeks since we've been home and three weeks since Sloan's latest surgery. She's been doing so well since we got home, and I can see each day that she's getting more and more back to herself. Kyle and I took off last week from work to settle back in at home (our stay-cation) and try to get Sloan back to some sort of a routine. It's amazing how one week in the hospital can put all of us out of whack! We had a few rough sleepless nights when we first got home, felt like we were back in the newborn stage. I think she may have been having those hemi headaches that everyone talks about. Now she seems to be sleeping more comfortably, we even have had a few recent nights where she hasn't woke up once!

During our week at home, we also were able to spend some wonderful time together as a family.  The weather was beautiful here in South Haven so we tried to take advantage of getting out for walks as much as we could.  We also had a few exciting developments for Sloan last week, she has one tooth that has popped through on the bottom (this could also be why she's had some rough nights) and we started her on oatmeal cereal.  She LOVES her cereal.  I was surprised how quickly she caught on to chewing and swallowing.  Hopefully the cereal will also help her pack on some pounds - she's a skinny little thing!

Later this month we go to see our cardiologist for a check up and Sloan will be evaluated again by a therapist to see if we need a little extra help with her development.  I'm eager to see how each of these appointments go!  I've noticed that she's a bit weak physically but mentally I am seeing her continue to grow & develop.

Here are a few fun photos from this last week:

I've discovered my feet, and am LOVING them!
I can't keep them out of my hands....or my mouth

Yummy, finally something other than formula - OATMEAL

Baking cookies with mom during our stay-cation

First time in my bathing suit.  Wasn't able to get out of the stroller
at the beach and feel the sand, but at least I was fashionable riding

Brother jumping on the rocks at the beach with daddy

It was a perfect week to break out the pool for Drake and he loved it...
especially when daddy got in with him :)

Big girl in my high chair!