Saturday, November 28, 2009


I mentioned in my last post to stay tuned... and I mentioned that because we have big news to announce!

Paxton was released from the CVICU on Wednesday evening, the day before Thanksgiving!

My goal since I found out Paxton was sick and that he would need surgery was to have him home in time for Thanksgiving.  When we got to the week before the holiday and no word about home had been mentioned to me after two months, I bumped my goal back to Christmas. Only I got the call on Monday that they were considering letting him go home in 2 days. I roomed in with him to prove that I could do ALL of his care without the help of nurses.  I learned his meds, his monitors, his feeding tube care and was retrained in cpr. We did not mention a word to anybody because we were told in the beginning of all this that you never tell anyone until you are in the car. To many times they have told parents they were going home the next day only to have something happen that night and they don't leave. We were very close to that.  Wednesday morning was our goal only it seemed Paxton's potassium was being affected by one of his medications so they had to modify that dose and see if the level went down on 5 o' clock blood draw.  His doctor said to plan on Thursday instead. I was worried as we waited that this might not happen. The hours were eternal as I waited to hear if we would be able to take our son home.  I did not go pack up at Ronald McDonald until I knew for sure. I felt like I might jinx us if I jumped the gun.  Finally at six that night we got the word that we were free to go.  It was the most amazing feeling. I called my husband and asked him if he was ready to blow this popsicle stand. He said "for real?" We both just really did not think this time would ever come. So he jumped in the car and made the two hour drive to pick us up while I went and packed 2 months worth of stuff up.  I made it back to the hospital in record time and we prepared to head home. We said good bye to some of our favorite nurses while we waited for my husband. Take a peek at all of Paxton's girlfriends:

While these are only a couple of the amazing people we had caring for our son in the time we were there, I happen to have a soft spot in my heart for J, she was our nurse while we waited to get word on whether we would go home or not and I think she wanted it as bad as we did. She got goose bumps when the doctor told her yes on the phone.  S, was also one of our favorites because she took the time in the very beginning to teach me a lot things about HLHS babies. She gave me advice, showed such kindness and truly cared for Paxton. She even made us call her to tell her we got home the night we left.  It is actually bittersweet to leave because the nurses become your friends while you are there. You lean on them, talk with them, even laugh with them and you put your child in their care all day every day. It's virtually impossible not to have a connection with them.  As we left, we walked near the board by the nurses station that has all the patients names listed and as tradition in the CVICU, the parent erases the baby's name as they leave. I walked up and as I erased his name after 2 insanely long months away, I was covered from head to toe with goosebumps at the journey we had just traveled! 

We were ready to be a family again. Paxton did great on the two hour drive home and slept the whole way. We got home around 1 a.m.  and went straight to bed.  We were very excited to see the boys reaction to their new baby brother. It was priceless and for that you should stay tuned...that post is one of it's very own tomorrow.  
Thanksgiving day went well. We spent a great deal of the day trying to get situated. I mean I was gone for 2 months and I had a lot to get settled into. Luckily my mom was here for a few days and worked her butt of with me to get everything in order. Big thanks to her!!! It takes a lot to get used to life with a special needs baby as well. He's on 6 medications, a heart rate/oxygen monitor 24 hours a day and must be kept on a pretty strict eating schedule so that we can get him nice and plump for his next surgery and he can't cry for long. I consider myself a pro at "mommyhood" after having 2 under 2 for a long time, but having a baby with such a severe heart complication makes me nervous. I am constantly checking his color, his temperature, his monitor, his breathing.  I am scared that this will all end soon and he will have to go back. I am scared to go back to St. Pete on Monday and have them recheck him for fear they will readmit him.  It's a scary process. It's not easy mentally to have a sick baby. The worry never ceases, but I take it one moment at a time and give thanks for what we do have, and that is him here with us now and seemingly doing well.  We even cat napped in bed together tonight which is what I have been aching to do with him since he was born.  Dave just stares at him, feeds him and of course:

they watched football together!  We are adjusting to life at home and taking it day by day.  We are so happy to all be under one roof again. The older boys are beyond excited to have Mommy back and are loving their baby brother.  It has been one heck of journey this far. Some days I didn't know how I would make it. Some days I wondered if we would ever all be under the same roof again, but here we are and it is heaven.  I relish each and every second that we are here because we never know how things will change and we do have to do this all over again for his second surgery in 4 months.  We know to appreciate it all and man do we!  We are so blessed and as we jumped around hooting and hollering today trying to get our Christmas card picture for this year, I stopped in the moment, looked around at my beautiful family and sighed, we were home. All of us are home!
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Anonymous said...

Yay! I'm so happy to hear Paxton is home safe and as a complete family. Please continue to update us.

Lorena from LB, California

Hailey's Mom said...

Congratulations!!! I can't wait for the day I get to bring my girl home. This is one of the most amazing days in a heart mom's life!!! I got goosebumps just reading this!

Melissa G. said...

Oh that's awesome!!! I'm so happy he's home with you and in time for Thanksgiving too! =)

~Jamie Kubeczka~ said...

Oh YAY Jenn!! I am so glad you were able to spend Thanksgiving day at home with all your boys! This is great news and I will continue to pray for you. Thank you for keeping us up to date, as I know you hav a lot going on.

Gretchen said...

What a beautiful blessing for your family!! I couldn't imagine a better Thanksgiving present for you all!!

And special nedds children are.... special! But you will adjsut to your new normal and things will become second nature to you. I know I did, and I NEVER thought I could be a special needs mom!


Nikki said...

I started reading your blog a few weeks ago (came over from the BbB website)... and just wanted to let you know that we have been praying for Paxton -- for ALL of you -- and we're so glad you are all home! Praise God! Praying for a positive doctor's visit tomorrow...

Neha said...

I am soo soo happy to read this! So happy that Praxton is amidst his family that the boys have got to see their younger brother and so happy that all your patience and perseverence of the last couple of months has finally reaped fruits! Ever since I read about Praxton, I've been anxious of his home coming too and now that he is home, I was getting goose-bumps while I read it and had tears in my eyes! Don't worry anymore, He will take care of all you...for if He puts us through it, He also gives us the strength and courage to overcome it. Praxton will be fine very very soon. God bless you all with loads of happiness in times to come!

Jenn said...

Hello from one Jenn to another!
I came across your blog on Baby Be Blessed and wanted to leave a message--one of my best friends has a son who was born with HLHS so I am somewhat familiar with your journey. Her son went through all of his surgeries with great success and he is now an otherwise healthy, active little 5 year old boy! Praying for your strength through such a trying time--just wanted to share a great success story with you!

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