Our Little Miracle

It's been a month since updating.  I've wanted to update sooner but it seems my life never slows down long enough to have uninterrupted time in front of the computer to do an update.  So here it goes....
Reagan is doing fantastic.  After getting out of the hospital back in September she continued to have a yucky cough and her lungs were really rattly but at her last pulminology appt. her dr. had us try a new bronchodilator, Foradil, to use with her breathing treatments & it has made a remarkable difference.  Reagan has used Xopenex or Albuterol since birth and I was having to give her extra treatments with not much luck.  Since starting the Foradil (which is a longer-acting bronchodilator) her lungs sound so clear.  Amazing, the difference.  Hopefully, these results will continue on into the yucky fall pollen season and winter months.  Winter is a time we heart moms dread with our little ones as they seem to be sicker but we are praying for a hospital-free winter.
Our other major thing we are still dealing with is her blood clot.  I continue to give her twice a day shots of lovenox.  Poor baby is bruised all over from the shots as they are an anti-coagulant so cause bruising.  I will be so glad when I do not have to give them to her anymore.  Back in September when the cardiologists reviewed her case, the hematologist overseeing the lovenox pushed for them to wait and give the lovenox more time to work on the clot before going in and placing a stint to try to open the vein that the clot is in.  The cardiologist agreed and so we are continuing the shots through Oct. 30 and then will have a time off before re-echoing the clot to see how it looks on Nov. 12.  After that echo, the cardiologist will decide whether to leave it alone or pursue further measures.  The hematologist did tell me that she believes it's been there long enough now that a layer has probably formed over it and "trapped" it to the side of the vessel therefore leaving a small chance that it could be dislodged.  I think as long as it is not obstructing too much flow through that vein to the heart and as long as no other clots form we will be able to leave the clot alone and take no further action.  Or so I pray daily.  I am ready to be done with this and let her enjoy her childhood for once.
She is coming along so well in all areas.  She is a  walking now.  Or should I say she's been walking for awhile now but perfecting it these days.  My back is so thankful that she can get herself from room to room now without having to be carried.  It is a wonderful thing until...she's missing and I cannot find her- ha!  She is on the move these days.  Here is a video of her walking through Bed, Bath & Beyond the other day as I shopped for a pillow for daddy.









She does still tire easily and cannot walk for long distances but we are working on building her endurance so she can keep up with her peers.  She continues to do gymnastics once a week and loves it! It is truly great for her muscles and her confidence.  Coach Melissa is great and very patient in helping Reagan to accomplish the tasks during class.  Thank you Coach Melissa!







Reagan also goes to a swim lesson once a week with Miss Britney.  I think this is the third month of swimming and she loves it.  She is no where near being set free in a pool but again the whole routine of it is building her muscles and it's something she enjoys doing so we continue on.  Thankfully, it's an indoor facility so she will be able to continue through the winter.  Thank you Miss Britney for working with Reagan.







In addition to moving and grooving these days, she has become quite the little talker.  She still goes to Speech Therapy twice a week and now is working more on articulating her words correctly.  Wow, a year ago she didn't have but about 15 words to articulate-  ha!  Amazing how awesome our God is bringing this little one sooooo far!  She is a walking, talking miracle!!
Her teacher, Mrs. Melissa, comes to our house 4 days a week for 30 minute lessons.  Although, it is only 30 minutes, Reagan is learning so much.  She now has 9 letters that she can recognize and is most proud of R for Reagan.  She now picks out R's all around her world and says "R for Reagan".  She was sitting in a little person sports chair in the backyard recently watching Nolan and I throw football passes to each other when I hear her say, "Mama, look, R for Reagan".  She had spotted the R in the small circle on the chair for the registered trademark sign.  She amazes me daily at her progress.  I hate that daddy is missing so much but try to video and take lot of pictures to keep him updated.  She will be ready for sure for our first official family vacation when daddy does come home.  I ask her daily to please be mama's girl today and daily her answer remains the same, "No, daddy's girl!"  We miss you daddy.  Stay safe and strong!!

Home Again, Home Again....

Well, we're finally home from the hospital.  Reagan was discharged this morning (Wed.) and we were home a little after noonish.  She remains on oxygen and still has a yucky cough which brings up thick mucus.  We're hoping in the next week she can clear those lungs out and be able to finish off this bronchiolitis and do away with the oxygen.
Originally, Reagan's cardiologist had scheduled an MRVenogram to be done outpatient yesterday.  Since we were in the hospital they went ahead and did the procedure.  This was so that they could get a better look at her blood clot and make sure there were not more clots higher up in her veins.  She did have to be sedated for the procedure.  I was able to go into the procedure room and stay with her while they put her to sleep with a gas mask.  I then had to leave.  Mom & I waited for about 2 hrs. for a procedure they said would take about an hour.  I finally was able to go see her in the recovery room.  She was none too happy to be there but was glad to have mama.  Unfortunately, they had to intubate her for the procedure but was able to take the tube out immediately after.  Later that day, her cardiologist, Dr. Johnson came by her room and gave me the results of the scan.  It appeared that there was just the one blood clot--thank you Jesus!!  He is going to bring Reagan's case up this Friday when all of the cardiologists have a conference to decide if we should give the Lovenox shots more time to try to deal with the clot or go in through a heart cath in the very near future to place a stint in that vein to open it up.  Hopefully, I will know something before laying my head down Friday night.
Reagan will follow-up with her pediatrician this Friday, hematologist on Monday, and pulminologist in 2 weeks.   We appreciate all your prayers and support through this journey, as always!!!
Here are a few pics from the last few days:

Me speaking at Women's Conference day before Reagan went in hospital

In ER @ 7am with Reagan Sunday morning

Reagan in her room coloring after being admitted

Reagan with her vest on getting ready for a breathing treatment. 

(We told her she looked like her daddy with his vest on in the cockpit)

Getting her breathing treatment while the vest "shakes" her lungs to break up all the yucky stuff

Heading to her MRVenogram on Tues.  Poor baby, she had no idea what was coming, 

she was just so glad to be getting out of her hospital room

That's wraps up this update, I'll keep you posted on what the cardiologist decide to do about the blood clot. 

In the Hospital Again....

Sorry, for not updating in awhile.  I had meant to do a big update to tell how good Reagan has been doing over the past month but have been busy preparing for a speech.  I spoke at my mom's church Sat. Sept. 11 at a Women's Conference on the Legacy of Motherhood.  In my spare time, I have been preparing for that which was this past weekend and then had planned on doing a good update on Reagan today but things have changed.  While we were at my mom's house this weekend she got sick, or should I say worse.  She has been really rattly, junky, & wheezy sounding for about 2 weeks now.  We did a round of steroids at home and extra breathing treatments but to no relief.  The junkiness continued in her lungs and work of breathing while doing activity.  No fevers though so I had kept her home.  Early Sunday morning around 4am, I awoke at my moms and felt of Reagan and she was burning hot with fever.  I had already decided I was going to take her in Monday and make someone see her and find out what all this junkiness was about.  Being about 2 1/2 hrs. from Austin at the time worried me with her junkiness, work of breathing and now fever so I awoke Aunt Kay & decided we better take her to the ER.  Aunt Kay had gone with us to my mom's to watch the kids while mom & I attended the Women's Conference on Sat.  So around 5am, Kay & I headed out from Whitney and headed to Austin, I actually made it in a record 2 hrs. driving with my flashers on.  Thank you God for not putting any cops along our path.  In the ER, she had 101.6 fever.  They did a chest x-ray which to my surprise didn't look much different than her baseline x-ray.  They decided it's probably a viral bronchiolitis but with the fevers, drew labs to make sure there's nothing bacterial going on.  They also admitted her to watch overnight.  Once moving to the floor Sunday afternoon , they decided to put her on a little oxygen, she's only on about 1/5 L of oxygen but has brought her oxygen sats from 88 to high 90's just with that little bit of O2.  She also ran a little more fever Sunday afternoon in her room but none overnight.  Overnight, she did however, threw up about 3 times and hasn't had an appetite this morning.  She has done alot of coughing and has begun to cough up some thick mucus which she had not until this point brought anything up yet.  The pulminologist suggested using the "vest" on her during her breathing treatments while here but doesn't see a need for it at home. She used it for the first time this morning, it's meant to help break up congestion in her chest.  She did really good with it.  It's quite loud and shakes her whole body but mom & I told her how big she looked in the vest and that daddy wears a vest when he flies.  She smiled and thought that was funny!
For now, we are just hanging out and watching her closely to  make sure the fevers don't return and nothing grows from the blood work.  So far, so good.  Will try to keep you posted.  Hopefully, they'll just watch her for a day or two more and then we can go home.  Praying she only gets better from here on and not worse.  Thanks again to everyone for your prayers and support!

Going Home....

Well, today is supposed to be our last day here at Dell Children's.  Reagan will receive her last dose of i.v. antibiotics at 5pm today and then we will be discharged.  She will unfortunatley have to have oral antibiotics at home for another 2 weeks but at least it will be at home.  Other than starting the i.v. the first night, I think Reagan has enjoyed her time here.  Seeing that she feels fine and all, we have gotten out of the room many times to go on wagon rides (her i.v. is in her foot so she hasn't been able to walk since Thur. night). 

getting all settled in Thurs. night before getting her i.v.

hanging out by the waterfall with my new crown

checking out all the water features here at Dell

enjoying her food trays

Yummy Cream Cheese & bagels

giving herself a breathing treatment

having a sucker party

finally, relaxing & watching her favorite movie, Toy Story

I'm not even sure if her blood culture that grew salmonella was real or not but the infectious disease dr. did say she had one other child that this happened too and they treated her the same way as Reagan and she was fine.  I'm thankful Reagan's team of caretakers heir on the side of safety for her because we would not have wanted the salmonella to spread and make her really sick.  I was able to retreat home Friday to go to a doctors appt. myself and spend some one on one time with Nolan.  I tried to get him to go to a movie with me and out to eat but he preferred Chuck E. Cheese instead so that's where we spent our date night. 

Mimi & PawPaw stayed with Reagan Friday night and then I relieved them on Saturday.  Thank you so much for helping out.  Also, thanks to Warren & Lori Kostencski for having Nolan spend the weekend with them so I could come back to the hospital on Sat.  I'm sure Nolan had much more fun with your boys than he would have in the hospital.  Thank you so much!!! 
Well, Reagan has her follow-up appts with cardiology and hematology on Tues.  The cardiologist will probably do an echo and check on the blood clot and then the hematologist will do a lab draw to check Reagan's lovenox levels and discuss how long of a course of these shots she will have to do.  Hopefully, a shorter than longer course as she is bruised all over from the shots and has only been on them a week now. 
Lastly, when we were in the hospital in California, we met the LaPointe family- baby Arden's parents.  Reagan fell in love with Arden and played with her big brother Elliot at Ronald McDonald House. 

Arden LaPointe

Arden has spent the majority of the time in the hospital since her birth with only a short period of time at home.  Please pray that the doctors can decide the best treatment for her heart so that she can be able to go home with her family.