Saturday, March 15, 2014

Kinsley Anne's Recovery

I am still just absolutely blown away with the support we've had throughout this week.  Kyle & I have always known that Kinsley Anne is a special little girl with a big life ahead, but I don't think we realized just how much others love her as well! Makes a mama's heart swell, let me tell you!

eating a cake pop... Katy, Stephen, & my parents had the CUTEST get well cake pops delivered to the hospital. and we loved them!

child life was great about bringing activities to her room. she wasn't really into them until the afternoon that we went home.
  
I knew that Kinsley Anne was feeling better when she wanted her lips on.

resting on the day of discharge

Kinsley loving on all her sweet friends! Aunt Carol brought her activities to play with as well as a huge bunny, Sophia the First doll, and a giraffe!!!


Kinsley Anne was discharged at ~545pm Thursday...right into the worst of Houston traffic (not to mention that the rodeo is in town), but I was probably never happier to sit in traffic....until Kinsley Anne announced that she needed to pee. HA! 

Kinsley and Daddy waiting on our car to pull up so we could leave!


I think it's safe to say we were all THRILLED to be leaving.


On the way home, we stopped for chewable Tylenol, since KA cannot have Motrin for an undetermined amount of time (bleeding risk).   We also stopped & picked up Little Caesar's $5 pizzas...yum!! Kinsley Anne asked no less than 5 times on Thursday to see her friend, Ava, that lives down the street from us. So, I texted her parents to let them know that we were on our way home & Ava and her family came over to greet her when we got home...they even brought her flowers!

Kinsley Anne has recovered really well. I've said several times that if it was me going through what she's gone through, I probably wouldn't have gotten off of the couch yet. But she acts like nothing ever happened.  Kids are so resilient!! She has asked why she has "brown spots" on her (bruises) but we have just told her that it's where the doctors fixed her heart and she seems OK with that explanation.  She has a little bruise on the right side of her neck and in her left groin.  These are from the venous access catheters that they used.  She also has a bigger bruise in her right groin, which is where her arterial access catheter was. 

a peek at her neck where the venous line was. so little! It's now bruised but will look great soon, I'm sure.

She only took 1 dose of Hycet in the hospital (Tylenol with codeine).  That helped her so much & I'm thankful that they were able to get that for her.  She has only had 2 doses of Tylenol since being home...she doesn't ask for it, but Kyle & I can tell when she starts to slow down & seems sore. 

As far as restrictions or instructions, she is still allowed to do a lot of things, which is good.  She is supposed to be taking it easy this weekend & will go back to school on Monday (with the teachers watching her closely).  She is not allowed to do any "straddle" toys, like a bike for example.  She is also not allowed to take a bath for a week.  She took a shower last night & thought it was very fun, because that's not her normal mode of bathing.

In regards to results from her cath & V/Q scan, we talked with Kinsley's cardiologist on Thursday before being discharged. The original measurements of her left pulmonary artery were 3.8 x 3 mm. THAT IS TINY.  The final measurement after ballooning was 5.5 x 5. Still small, but that's a big increase! It actually ~ doubled the blood flow.  The doctor said you can actually hear a murmur now that she has more blood flow.

Now the V/Q scan that she had on the day of discharge...what a test! It is done in nuclear radiology.  She had to lay on a table (very much like a CT scanner) & they papoosed her so that she couldn't move.  First, they put a mask on her so that she could breathe in a gas (Xenon) for ~2 minutes.  They took a LOT of pictures during this so that they could see how well she ventilates each lung.  Then, they injected some low dose radioactive dye in her IV & took 8 minutes worth of pictures to watch the blood flow into her lungs.  This test helps the doctor understand if both the ventilation and perfusion are decreased to her left lung or whether it's just the perfusion that is decreased.  If it just the perfusion that is decreased, that lets us know that we may need to do this ballooning again in the future to continue to help the artery grow.  We talked to Kinsley's cardiologist's nurse coordinator yesterday (the doctor was the attending on the cardiac floor yesterday and was swamped).  She read some of the report from the test to me, but obviously we will follow up with the doctor in April at her appointment.  It sounds like 90% of her blood flow goes to the right lung, 10% to the left.  We do not know what it was % wise before the ballooning, but it couldn't have been good!  The report did not give %s for ventilation, but did say there was slightly less airflow to the left lung versus the right.  Kyle & my guess is that we will be doing this again in the future....when? we do not know.  The doctor did not seem to want to even think about doing another cath on her again for at least 6-12 months, but we will see.  





We follow up with cardiology at the end of April & Kinsley will have an EKG & echo at that appointment.  That will help clarify that everything is functioning well, given that she now has a murmur.  

Hope that helps feel caught up!! 

We love yall and truly appreciate every one of you.

Until Next Time...
Love, Jen

Thursday, March 13, 2014

Kinsley Anne's Big Day!

Yesterday, as most of you already know, Kinsley Anne had a heart cath. Maybe we were naive, but we thought it was going to be a 2 hour procedure... It was 8. But, with that being said, we are so blessed.  All day, Kyle & I felt so peaceful. Seriously, we didn't stress out at all.  Obviously, this mama shed some tears when they took her from us at 9am this morning, but that is to be expected. The preop nurse was amazing & did not allow for her to get anything done before some oral Versed took effect ~30 minutes before the procedure. No vitals, no IV, no name band, no hospital gown. I could have kissed her.  That helped Kinsley Anne so much.  Before Versed, she would whimper when anyone would come to talk to us. After Versed, when the nursing assistant came to do vitals, she greeted her with a loud "heyyyyy" and all of the staff burst out laughing.  Here's a little video of Kinsley Anne "drunk" on Versed....


I got myself together fairly quickly & Kyle and I went on a little walk to find breakfast and chill out for a little while. The waiting room we were told to use was for CVICU & was HUGE.  We were lucky to find 2 recliners next to each other & set up camp for the day. We were able to catch up on our work emails & rest comfortably.  We received hourly updates from the awesome OR nurses which is what I'm sure every parent looks forward during the duration of their child's procedure.

Now, for what they found during the cath....

1) They found out that Kinsley Anne was born without an Inferior Vena Cava (IVC).  This is a large vein that carries unoxygenated blood from the lower half of your body to the bottom of the heart.  This sounds alarming, but despite being extra rare, it actually carries no risk to her.  Her body has compensated by using other veins that insert into the Superior Vena Cava (SVC).  The SVC is a similar vein the IVC but carries blood from the upper part of the body.  

The only time this would ever matter is in the cath lab. They typically access the heart via the IVC and in her case, had to go through a vein in her neck.

2) They were able to get into her pulmonary artery & take some fascinating pictures.  The pictures were able to beautifully compare the left & right pulmonary arteries.  It does not take a doctor, though, to be able visualize that there is DEFINITELY a difference in hers.  Once they got into the left pulmonary artery, they took measurements (3.8mm) and decided that they would try ballooning.  They blew up a 4mm, then 6mm, then 8mm balloon.  The doctor said that with the first balloon inflation, they actually slightly tore the very innermost lining of the left pulmonary artery (which is a good thing!!). As Kyle put it, just like when you are working out, muscle tears a little before it grows.  So, KA's doctor explained that now with this tear (that will heal) & increased blood flow, the hope is that the pulmonary artery will continue to grow.  She tolerated all of this beautifully & the best news is that her pulmonary artery stayed open after the balloons were deflated, so no stent was needed!!!


The big black vessel in the top 2 pictures is her RIGHT pulmonary artery (normal).  The little vessel to the right of that is her LEFT pulmonary artery.  The left is before balloon, the right is after. Obviously still not normal, but a significant improvement.

The bottom 2 pictures is just the left pulmonary artery (abnormal side). Before on the left, After on the right.


3) She does have some collateral circulation built up as a result of the small left pulmonary artery.  That is actually a good thing as it helps her compensate.

4) All of her other vasculature appears to be OK! 

5) As far as her recovery goes, she has done pretty well.  She obviously is not happy that we're still in the hospital. She has to have a test done today called a Ventilation/Perfusion Scan (V/Q Scan) which makes sure that the amount of air going in & out of her lungs is compatible to the amount of blood going to each lung.  If there is a discrepancy, it just means that we may have to go in at some unknown time in the future to try getting her left pulmonary artery bigger again.  She was having pain last night from where her arterial catheter had been in her right leg.  She wanted to sit up but couldn't because it hurt.  So, the nurse finally was able to get an order for & give her some narcotic pain medicine & out she went.  It was glorious to see her finally rest easy.  We slept decent last night.  We slept ~2 hours after the pain medicine then woke up for her nurse assessment & vitals. At that point, she decided she was hungry for Pringles & thirsty for ice & water.  Then, we slept about 3 more hours until the next nurse assessment & vitals.  Again, she decided she wanted some Cheetos, fruit snacks, and water.  We then slept for ~3.5 more hours.  Pretty good for a hospital stay!!!  She is sore this morning, but says she does not want to take any medicine (it is evidently pretty nasty tasting from her reaction to it last night).  She has been such a little trooper through all of this.  After all, she is a 3 year old who hates people messing with her & this is just not her (or anyone's) idea of fun.  She has become accustomed to her arm hugs (blood pressure), finger light (oxygen sensor), and her temperature being taken. She doesn't like it but now lets them check her pulses in her feet when they need to.  We're just praying that her IV still works well enough to use for this V/Q Scan today because placing a new IV for one test is just not ideal.


her poor little eyes and face were so swollen yesterday. It took until ~3am to resolve.


Kinsley Anne definitely takes after daddy with anesthesia recovery. As soon as she was awake she wanted to drink. She drank 4 apple juices & ate a popsicle all in recovery. 



Kinsley trying to get some rest when we finally got to her room upstairs. Please notice that her hospital gown is covered in giraffes. 

Kyle put it really well when he said how much Kinsley Anne has helped us grow our faith. Amazing how little ones can do that, huh?  Everyone has wanted to know how we stay so calm & strong.  The answer is that we prayed coming into this, prayed over her yesterday morning in pre-op, and then put it in God's very capable hands.  We were absolutely blown away by the number of people praying for our sweet girl.  Kyle & I talked about that all throughout the day & it provided unbelievable peace.  Thank you from the bottom of our hearts for every prayer, FB message/comment, text message, & phone call. We have been surrounded by incredible love & support and could never thank yall enough.


Until Next Time...
Love, Jen

Monday, March 10, 2014

Mama Jen @ 32 weeks with Wyatt...and prayers for Kinsley Anne!

Weeks: 32 weeks yesterday

Cravings: My cravings have really petered out.  I like food in general, but I am at that stage where I can only eat about half at a time because I get full super fast. If I push beyond full, it actually hurts.

Any foods you don't want? Not really..

Symptoms? Wyatt is still somehow finding room inside to wiggle & roll. It was really neat for my parents, sister, and aunt to witness my belly moving this weekend while they were in town.  I have had minimal contractions (YAY! thank you, modified bedrest) but my hips/back still hurt no matter how I sit/stand/alternate.  My heating pad is my best friend.  I also still have the gallbladder pain, but I'm hoping that will go away after his birth!  

Showing: oh, absolutely!

Boy or Girl?
 Mr James "Wyatt" Settle

Bought anything? Yes! We bought bedding!! It's actually from Buy Buy Baby.  Kyle & I have liked it for a while, but when I went to Buy Buy Baby a few months ago, the set they had on display looked like horrible quality. So, I had basically given up on the set.  However, we went buy a different location on Friday & it looked great! So, we ordered it & it should arrive later this week.  I will post pictures of the nursery once we get everything put together (in the next couple of weeks).


Also, my parents, my sister, & one of my aunts all flew in this weekend & threw Wyatt and I a baby shower.  It was so very generous of them & so much fun!  Because we are doing his room in a rustic theme, they threw the shower at a local BBQ restaurant & used western decorations. Everything was so great! They even sent everyone home with ball jars of BBQ rub as a favor.

Baby Wyatt is going to be super well dressed & we got several baby gear items that we had not yet purchased! Thank you to EVERYONE who came!!! :)


Shopping for anything? We need to place our first order for diapers/wipes.. I think we are going to try ordering them from our Amazon Prime account. I think it will be so nice to have them just arrive at our doorstep when we need them!

..And the dad to be? Love him.  Watching him entertain the kids at the baby shower this weekend made my heart swell.  He was so good with all of them & KA loved that her daddy sat with her during "Wyatt's party."


...And the big sister to be? Such a super star! She was SO excited to help me unwrap presents & I was calling her my little Vanna White because she would parade his clothes/gifts around for everyone to see. She was so proud!

Most recent appointment? My 30 week appt, 2 weeks ago.


Next appointment? I have my 32 week appointment tomorrow.  I plan to ask if I need a 3rd trimester ultrasound for growth since I suspect that he is a big boy.  We'll see!...


Onto non-pregnancy things..

  • We went to the Houston Rodeo & Livestock Show while my family was in town this weekend. So much fun! Because I'm supposed to be taking it easy, I went in a wheelchair.  I'm glad I got to go because I wasn't so sure we could make that happen!!  We all had fun minus KA's mini meltdown over the Ewe who had just had twins. She did NOT like seeing the placenta coming out.  Kyle had to chat with her about farm life. ha!
this is how Mama Jen rolled... hehe

KA was so happy to be on a purple tractor ride!

 Kinsley Anne was still recovering from the sheep incident.
But Daddy was happy to be doing some country living!

  • Kinsley Anne has a really big week this week. Bless her heart (no pun intended), she has no idea.  She has a cardiac cath procedure set up for this Wednesday morning.  2 pediatric interventional cardiologists will be performing the procedure with a surgeon on stand by for consult.
    • Our prayers are that:
      • Kinsley Anne doesn't have a complete meltdown in preparation for the procedure. We plan to ask them to give her an oral sedative before any IVs are placed to help with her nerves/memory of the situation.
      • Kinsley Anne does well through the procedure without any complications.
      • That the cardiologists would use accuracy & precision to get ALL of the information that they need during the procedure...information about her pulmonary artery, pulmonary veins, inferior vena cava, and any other cardiac vessels in question.
      • That stents could be placed, where possible.  This would help us to avoid a more major heart surgery later this year!
      • That Kinsley Anne would be relaxed and calm during the 6 hours after the procedure where she has to lay flat.
      • That Kinsley Anne could be discharged the following day & not require an ICU stay.

  • Kinsley is officially signed up for gymnastics and starts next Thursday, as long as she has completely recovered from this week! She is ecstatic!
Until next time..
Love, Jen

Wyatt,
This weekend, you were showered with so much love & support. Family & friends came together from all over to provide you with so many amazing gifts to show their love for you.  I may be biased, but I think that they know just how special of a little boy you will grow up to be! Mama will try to take it easy & rest for you this week, but it might be hard for a couple of days.  I love you wider than the sky, sweet boy!


Love, your mama (and daddy & big sissy Kinsley Anne)

Monday, March 3, 2014

Mama Jen @ 31 weeks with Wyatt...

Weeks: 31 weeks Sunday

Cravings: All food. HA! I have a steady appetite but have been trying SO hard to eat 3 meals and minimal snacks. It's hard though.

Any foods you don't want? Not really. Cajun doesn't sound great to me, which is one of Kyle's favorites. But, if he really wanted it, I would eat it.

Symptoms? My stomach rolls & wiggles all.day.long.  Ok, so maybe he does nap for short periods, but he is a really active little man.  Kyle says he doesn't remember Kinsley Anne having such huge movements, but I can't honestly remember either way.  It is really neat, but I am a little scared of what that means for once he's born....I seriously will wake up to roll over in the middle of the night & he is moving all over.  Wyatt, mama loves her sleep. You better learn to, too! HA :)

I have continued to have hip pain on & off. It happens most after sitting (working) for prolonged periods or standing/walking for a while.  I also have had bad pain in my right rib cage. I distinctly remember this same pain with Kinsley. My OB at the time thought it was my gallbladder. I had a normal ultrasound then, and I was told it would go away after delivery...which it did!  So, I am hoping that's what's going on. I saw my GI recently for a routine follow up and she said that a lot of pregnant women have gallbladder dysfunction that resolves after delivery.  Fingers crossed, because the pain is no joke!

Showing: undeniably, yes.


 30 weeks


31 weeks

Boy or Girl?
 Mr James "Wyatt" Settle

Bought anything? No. I have made some progress with browing online at crib bedding. I just hate themes and it is hard to find something that is not themed, but still fits in a rustic boy's room. I found two sets that a store ~45 minutes away has on their display room floor. So, I will have to make a trip that way at some point to look in person.


Also, over the past several months, I've found a love of shopping used for baby clothes.  I am uber picky, but have picked up some amazing monogrammed items for Wyatt for super cheap. My most recent is this adorable shirt for next summer. $11 shipped! I mean, I can barely take a shirt to be monogrammed for that.




Shopping for anything? Bedding.  And I am going to place my first order of diapers/wipes soon. I think I'm going to try out Amazon for my baby supplies this go round.

..And the dad to be? He's awesome.  I'm sure I drive him nuts with the "feel this! He's moving like crazy" all of the time, but he does it with a smile :)  He has helped keep up the house while I'm not really able to do as much as normal.  He has been great about applying horse liniment to my aches and pains, helping me get up off the couch when I'm nearly in tears from my hips, encouraging me to take baths & generally take life easy, etc.  What would I do without him?!


...And the big sister to be? She is such an awesome little girl.  She was hysterical this weekend with him.  Wyatt was sticking his booty or shoulder or something out to the side of my belly, making my belly look really distorted.  KA thought it was absolutely the best thing ever and started poking him and patting my belly.  She said she was tickling him & thought it was so much fun that he kept kicking/flicking her.  I said, "Kins, you keep it up and he's gonna come out poking & prodding you!"  Her response? ME?!?! like she had done nothing... ha

She tells me a billion times a day how much she loves me and how she hopes I feel well. She helps daddy get me off of the couch when I'm in pain & often dives into the bathtub with me so that she can play with my hair and "feel me better."  Such a sweet heart she has.

Most recent appointment? Last week I went in for my 30 week appt.  I had only gained 1 lb in 2 weeks! WAHOO. Best news ever to a pregnant woman.  I heard his sweet heart beat (140s) and was applauded by my doctor for taking it easy and following her directions.  She told me, "you know this as well as I, but you are saving yourself from unecessary hospitalizations, IV sticks, medications, etc. Keep up the good work."  That makes all of the pain, contractions, and rest worth it.  I would do anything for my sweet babies.


We also went on our OB tour yesterday. It was really good. The hospital where I will deliver is a part of Texas Children's & is less than 2 years old.  It is all state of the art with the newest & best technology.  I was really happy to hear how "family centered" they are. I am praying that we will all be able to stay together this go-round! No NICU prayers are appreciated!!! :)

Next appointment? Next week is my 32 week appt.  I don't expect any big news at this appt. However, I will be asking my doctor if she thinks a 3rd trimester ultrasound is necessary.  Wyatt has been ~2 weeks ahead on all measurements/ultrasounds and she had mentioned it early in the 2nd trimester.  So, I will ask about that. We all know that I like to birth big babies (KA was 7#3oz, 5 weeks early).



Onto non-pregnancy things..

  • Kinsley Anne went to her "best friend's" gymnastics birthday party this weekend.  Ava is a neighbor & turns 5 today! Hard to believe how old our sweet girls are getting.  KA had a blast! She is signed up to start gymnastics again on 3/20. 


 love that she is on her tip toes....to keep up with the big girls!





silly faces!

Until next time..
Love, Jen


Wyatt,
WE LOVE YOU SO MUCH! I cannot wait to find out what you look like, but will gladly wait 6 more weeks for you to be a healthy {big} boy! You are going to be born into a family that will always love you, always support you.  I can't wait to see how my love will multiply when you are born.  Before your sister was born, I never thought I could love someone as much as I loved your daddy.  But, I fell in love instantly with her.  I can't wait to have that happen all over again with you.  They say that kids are a piece of their mommy's hearts walking around outside of their mama.  I think that's pretty true!  I love you wider than the sky. Keep growing & getting strong!!


Love, your mama (and daddy & big sissy Kinsley Anne)