Monday, November 30, 2009

Have I Mentioned...

Today was a very long day for Paxton and I, but so worth it in the end.  We made the journey to St. Pete for his first round of rechecks since he was released from the hospital on Wednesday.  He had to see his cardiologist, get xrays, echocardiograms and ekgs. All of which came back great for his anatomy.  We were allowed to bring him home again which was such a relief since I was told on Wednesday to always bring a bag for these recheck appointments "just in case".  I was nervous to say the least, because I know how fragile HLHS babies are in the time between their Norwood and Glenn surgeries.  I have to say I spent the greater part of last night waxing and waning between the pure joy of being home and the gripping fear of possibly not returning tonight.   I packed my bag with tears streaming my face, hoping and praying that we would get to come home. I doubted the little fighter that is my son and I should know better for he has time and again surprised us all in how he has handled each step that has been thrown at him. Whether it be open heart surgery at 4 days old, the closing of his chest a week later, an infection, g tube surgery, feeding, endless blood work, iv's or making the transition from hospital to home, he continues to prove how tough he is.  Today was no different for he handled the two hour drive to St. Pete quite well. We stopped to feed once and pulled over on the side of the road to replace a lost paci. Road rangers rolled up on us and when I told them that we were pulled over because our little guy has a heart condition and is not allowed to cry for long, he proceeded to follow us the entire way to All Children's Hospital so that should I need to pull over again, he would be right behind to put his lights on to keep us safe. Such a kind man!  The ride home he slept the entire way. I think he wore himself out crying at our last appointment of the day, which was an unexpected trip to his GI doctor to have his feeding tube checked. I noticed last night that it looked infected and immediately blamed myself for not cleaning it well enough. I made an after hours call to get him in today, knowing we would be there already. So, we headed another half hour north of St. Pete to Tampa where the doctor did indeed confirm it was infected. He praised me for noticing and told me that it was not in fact my fault, but that the tube was on to tight which didn't allow air to breathe and circulate causing bacteria to grow.  So he scrubbed it (poor little Paxton turn a bright shade of blue during this from crying so hard) and replaced the cover on the tube with one that will allow it to breathe better. Once again being braver and enduring more than most of us can imagine!

I sit here in my big comfy chair late tonight, having showered in my own shower, with my baby boy here beside me. I just went in and kissed my other two boys good night and let them know that Mama was home (Austin freaked out when Daddy picked him up today, because he wanted Mommy to pick him up, once again they thought I was leaving them) I am going to rest my head in my own bed tonight with my husband beside me.  We are home!  He did it!  
Have I mentioned how amazing our son is!  Have I mentioned just how strong he is!  Have I mentioned how proud I am of him for continuing to fight for each day here with us.  He is so gorgeous and happy. He smiles, takes in all of his surroundings and to date watching ceiling fans is his favorite hobby! 

As for the boys meeting their baby brother. They did really well!  Mason really doesn't care all that much.  He's more interested in having his Mommy home, but Austin is so excited.  "Baby" "Baby" he says. He goes up to him and pats him and "shh's" him. He will try to give him his paci and wants to hold him. It melts my heart to pieces.

I wish I could say that I have some pictures of Mason with his brother, but he is definitely our rough neck, so while he isn't that interested, we also don't push the issue! I knew Austin would do great with him. He is going through the wanting to be a baby phase, but we let him, knowing it's normal. We have all been through a lot of change these past couple of months. We have all had our rough days and we have all come out on the other side of it stronger and closer. When the boys walk up to me out of the blue for a kiss or snuggle, I know they too have learned from this experience.   
I can't even tell you all how excited I am to see these boys grow up together.  We are so blessed. Three beautiful, perfect boys to love! 
Have I mentioned how good life is!

PS- I have had a lot of people trying to touch base with me lately, whether by phone, facebook or text. Please forgive me for not getting back in a timely manner. I have been adjusting to life at home with two toddlers and a special needs baby. I have been relishing every moment with my family.  I promise I will get back to you all at some point and hope you can understand in the mean time. This has been a long time coming and right now it's all about my boys = )
ALL of my boys!

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Neha said...

I am soo happy...and reading this post brought tears to my eyes! No doubt, he is a strong little man and an incredibly adorable baby! And how excited his brother is! I am really very happy for all of you!

Melissa G. said...

Soooo glad you are home and able to shower in your own shower and be with your family. I'm sure they are beyond excited to have you back!
You are just a blessing to watch. The way you are handling this with strength and grace. I know you may not feel strong but you are showing amazing strength. God bless you all!

Kathryn @ Expectant Hearts said...

Congrats on being all home together and Paxton's recheck going well! I have to say, even with the risk of infection, I LOVED having Seth's g-tube (once i accepted the idea) as it sure eases up the eating stressors!

So nice to see "at home" pics!

Lorena M said...

I am so glad Paxton is doing great. He looks wonderful.

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