tbt- 6.3.12- Thirty Days~

05 June 2014

Hayden and I spent 30 days in the cardiac center at CHOP. What started out at a simple admission for a cold, turned into an unexpected lengthy journey of which at times I was unsure would ever end. After about two weeks, it seemed one wrong thing lead to another and I started to wonder if we would be able to leave before his next surgery. I had become very negative, and not because I am typically a negative person, but because if I allowed myself to think positive and get my hopes crushed one more time, I think I might possibly loose my mind. Literally. 
I learned a lot about myself in those 30 days... 
The night we were readmitted to CHOP started off as what we thought was a quick trip to the ER. We were there for 7 hours before the team from CHOP got there to get Hayden and I. Funny how after spending three weeks in the hospital made those seven hours feel like nothing- where as before, I would have been pacing the halls and clawing at the wall to get out of there. I learned that I can be patient. 
Any parent who has yet to ride in an ambulance with their child- its not like the movies- well atleast if you are going to CHOP- you don't get to ride in the back and hold your baby's hand like I thought- you ride upfront with the driver and let the trained nurses sit with your baby. At first I was pretty upset by this, but at the first red light the ambulance came to a stop and I could hear him crying in the back. It was then that I was so thankful I wasn't back there witnessing that- not being able to comfort him and hold him while he was so upset for three hours would have been excruciating. I learned that I can be thankful for things when I least expect. 
Walking back through the halls of the CICU that early morning felt oddly like being home. Like we had never left. We were placed in Pod 4, Bed 1. Just one pod over from Hayden's first bed. The faces that greeted us were familiar, half smiling- wanting to show they were happy to see us, but..not happy to see us...The nurses and doctors that were waiting for us knew Hayden-knew every single detail about Hayden- and there are a lot of was at that moment that I was thankful we were transported back to CHOP. A few hours ago I was wishing they would just send us to St Peters where Hayden's cardiologist is located and affiliated through CHOP but it was then that I realized we were right where we needed to be. Especially when a nurse- turn friend immediately came over to me and embraced me telling me he's here now, everything will be fine. I learned that feeling at home doesn't always mean being inside your actual house. 
The next few days somehow turned into weeks and about two weeks into our stay I started becoming depressed. I starting crying myself to sleep every night because every time I turned around something else was wrong with Hayden. I started thinking we were going to be one of those families that never gets to leave the hospital. I know, pretty dramatic to think after only a couple of weeks. But I think I had to get in that mind set- because otherwise I felt like i was crawling out of my skin. Two weeks in there felt like two years- especially when Jackson finally came back that first weekend to see me- he had grown and changed so much in one measly week. When he came running around that corner to our new bed, Pod 5 Bed 2, I picked him up and just cried and held him against me until he made me put him down. He had matured in that one week- and I'll never know if he changed because it was his time to or because he was once again without his mommy and was forced to. One of the hardest parts of this entire journey has been cutting the cord with Jackson. Mainly because it was a forced cut- not one either of us welcomed, but was given no other choice. I still get upset thinking how the first week of Hayden's life I think I saw Jackson three times. The only way I was able to overcome this depression was through a lot of visits from my best friends and getting it in my head that we were never leaving- even though I think I had to know that wasn't true. I learned that sometimes you have to lie to yourself to get by.

The scariest moment of my life came on May 7- cath day. If you've read my blog, you know how his recovery went. If you haven't read it, go read the entry 'cath aftermath'. It will send any parent rushing to their child and squeezing them harder and tighter than ever before. It was the closest we ever came to loosing Hayden and it was then that I truly learned that outcome is always possible. My mind always knew it, but my heart refused to acknowledge it. I have learned that each day Hayden is with us is truly a blessing. I've learned the real meaning of taking it one day at a time, sometimes one minute at a time. I have learned that on a daily basis Hayden's condition can go from good to bad very quickly. I have learned that we have hundreds, almost thousands of people who love Hayden and are praying for him- and because of that we are lucky. I've learned to never take for granted the little things that make life worth living- like having someone to eat dinner with, or even eating dinner at all, sleeping in your own bed, tucking your children into their beds. I have learned that my 12 week old miracle, my three year old super star, my rock solid husband and I can pretty much get through anything this crazy world hands us...

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