The last 4 months Owen has been in the hospital a total of 64 days out of 135 days.
It's funny, I don't know about other NICU moms out there, but I remember thinking that all I had to do was get to that day - discharge day. That was the goal. The day you were working towards and it seemed all thought revolved around that day. That day was the most exciting day. A day full of happiness, stress, and craziness. It was a day I will never forget. The care of this little baby was finally in my hands. I always thought everything would be ok after that day came. I never really thought about the day after discharge day, the year after discharge day . . . Don't get me wrong, I thought about Owen's future. However, I guess I didn't realize or comprehend the amount of time he would spend in the hospital.
In the last year and a half we have truly learned the long road Owen has to travel. It is a very stressful thing, to have your son in and out of the hospital with no end in sight. The last couple weeks I have felt completely overwhelmed. Overwhelmed with thoughts, feelings, and the everyday happenings in our life right now. I have been trying to make our family life as normal as possible but we never know what is going to come up the next day, the next hour. Owen had his broviac surgery on tuesday - we learned that he was on the surgery schedule on monday. Seriously? They can't even let us know he is going to have surgery?!? Surgery is stressful enough without learning about it the day before.
Surgery for Owen is always a scary thing to me. I know a broviac placement surgery itself is no big deal. However, anesthesia for a short gut baby is a big deal. Anesthesia for a short gut baby with lung issues is a big deal. Being intubated for surgery is a big deal. There is always a risk of Owen having a hard time coming out of anesthesia and having to stay on the vent. Also, as we have experienced, anesthesia slows gut motility. It takes a long time to get Owen back to his normal feeding rate and calorie intake. We just spent the last month getting him up to the rate he was at before surgery. Now we will spend the next month doing the same thing.
Talking to people during this time has been difficult. I sometimes feel like I can't share my honest feelings because, the truth is, I was scared to death. I was scared that something terrible was going to happen during this routine surgery. I had a horrible feeling about the surgery and every time I talked to someone about it they would say, "Oh, he will be fine." or "He's been through so much worse, he can handle this." Was he fine? Yes he was. Has he been through worse? of course! I guess that's not the point. I felt like people were telling me that my feelings weren't justified; like I was making something out of nothing. I thank those who have stayed by me, let me cry on your shoulder, let me freak out on the phone, or just listened when I was nervous.
Today I am thankful.
thankful that we are home
thankful that there were no major complications with the surgery or Owen's health after surgery
thankful that all those scary thoughts that wouldn't leave my head on tuesday are no longer a possibility
thankful for another day of life with my family
thankful for those in my life who do understand the stress that comes with having a baby with many health problems
Today I am thankful
In the last year and a half we have truly learned the long road Owen has to travel. It is a very stressful thing, to have your son in and out of the hospital with no end in sight. The last couple weeks I have felt completely overwhelmed. Overwhelmed with thoughts, feelings, and the everyday happenings in our life right now. I have been trying to make our family life as normal as possible but we never know what is going to come up the next day, the next hour. Owen had his broviac surgery on tuesday - we learned that he was on the surgery schedule on monday. Seriously? They can't even let us know he is going to have surgery?!? Surgery is stressful enough without learning about it the day before.
Surgery for Owen is always a scary thing to me. I know a broviac placement surgery itself is no big deal. However, anesthesia for a short gut baby is a big deal. Anesthesia for a short gut baby with lung issues is a big deal. Being intubated for surgery is a big deal. There is always a risk of Owen having a hard time coming out of anesthesia and having to stay on the vent. Also, as we have experienced, anesthesia slows gut motility. It takes a long time to get Owen back to his normal feeding rate and calorie intake. We just spent the last month getting him up to the rate he was at before surgery. Now we will spend the next month doing the same thing.
Talking to people during this time has been difficult. I sometimes feel like I can't share my honest feelings because, the truth is, I was scared to death. I was scared that something terrible was going to happen during this routine surgery. I had a horrible feeling about the surgery and every time I talked to someone about it they would say, "Oh, he will be fine." or "He's been through so much worse, he can handle this." Was he fine? Yes he was. Has he been through worse? of course! I guess that's not the point. I felt like people were telling me that my feelings weren't justified; like I was making something out of nothing. I thank those who have stayed by me, let me cry on your shoulder, let me freak out on the phone, or just listened when I was nervous.
Today I am thankful.
thankful that we are home
thankful that there were no major complications with the surgery or Owen's health after surgery
thankful that all those scary thoughts that wouldn't leave my head on tuesday are no longer a possibility
thankful for another day of life with my family
thankful for those in my life who do understand the stress that comes with having a baby with many health problems
Today I am thankful
Wow. You have certainly been through so much. I am going to pray specifically that you guys get some days full of rest. Rest in the physical sense and rest in the emotional sense. That Owen will work up to feeds at an amazing rate and that he stays healthy. You have been on such, such a rough road. Definitely more than we have ever experienced. You have kept such an amazing attitude through it all. I'm sure every worry and fear you had is because you have been through such an ordeal. It's so amazing that you can still take thankfulness from everything you've been through. So inspiring!!
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