Thursday, July 1, 2010

Lets Talk Craziness.......

So we all know how my updates have been lately...sporadic..hehe. Well Let's talk first about Mia who is still doing well but threw a curveball at us 2 weeks ago. Around June 13 Mia began decreasing on her feeds for quite a few days. After observing her for about a week I decided it was time to see the cardiologist. The cardiologist said her heart looked good from his perspetive but he thought we should spend a few nights in the hospital to be observed. Hypoplast kids have a tendency to turn for the worst very quickly. So we did. We stayed at Ochsner for 3 days and let them observe her and they found out that she had terrible reflux. Her eating had stopped due to esophagitis and they said it would be a progress and not a cure overnight. They put her on Bethanechol for espohageal sphincter spasms and prevacid solutabs 7.5 daily. It has been over two weeks and we are not seeing any improvement at all. Hopefully, we can get her the correct regimen of meds so she will eat better and have more precise weight gain. We ended up going on our family vacation this year to destin...very hesitant but we went and it was a great time. Ray and I barely saw each other because we had to take shifts in the room. It would have been better if we had more family that was willing to help. We kinda were under the impression that we were going to get more help..but boy were we wrong. I think sometimes people forget how good thier lives are and they tend to forget that sometimes some of us are going through something that could use a bit of downtime. This journey began 8 months ago for us and we have been running and banging our heads on the wall ever since. Does any of this scream vacation? People need to understand that our lives have enveloped a new sense of NORMAL...we and our family will never be normal any more we will have to become a new sense of normal that works for us. So the vacation...not so much. There were a few goods that helped us out so that Ray and I could go out and have dinner and re-group for round 2. So we are now back home living in our new normal reality and all is well. Mia has a cardiology appt on Friday and they both have thier first set of immunizations next week...whahhhh. So sad she has been through enough already. Everytime I turn around she is getting poked on. We are settling into our new house more and more. Just when we are completly comfy we will be back in Philly for Mia's next surgery. Which I hate!! I am getting those butterflies all over again in anticipation. Since I opened this blog as my "open journal" for friends and family I have a few things I want to discuss. Lately, I have really been realizing how different my life is and is going to have to be for the next few years. I am wondering if all of my friends and family realize how much we miss them and doing things with them. We were the family that never stopped always going and hanging out with everyone. I would never change this for anything...and I want to stress that this is not for pity it is simply how I am feeling. This has been a whole differnt ballgame...with 2...wait 3 kids and with mia's heart all together. I almost feel bad wanting to get away for a few hours I feel like i should be with her. Anyway enough sadness...i am super excited for the show Boston med coming on. They are having a show with a baby boy, sam who was born with HLHS and they followed his mom through her pregnancy. The awareness is bittersweet!!! If you have a friend or family menber on this journey...be supportive...talk to them. They are crying inside hoping that for one second they will wake up in reality and the word death will not consume them. I miss my life, my friends, my family...but I love Mia A lot and I am keeping this to show her when she is older how much I fought for her. I hope all my other heart moms are well and each one of your children holds a dear place in my heart. Enough for today...I need to buy my tissues for tonights BostonMed!

3 comments:

  1. Elijah had reflux bad too. He eventually had a feeding tube placed, which I wish we would've gotten way earlier. It would've helped out a lot. He was only drinking about 3-4 oz every 3 hrs even up to when we went into the hospital the last time before he turned 6 mths. They had him on a high calorie diet too. I'll be watching tonight, I'm sure I'll cry my eyes out. They actually filmed it when we were int he CICU with them across the hall and their surgeon was ours too. I agree with you, having a heart baby changes your life forever. Its hard to explain. You see things differently and appreciate things more, etc. Let me know too when I can bring you the pulse ox alarm and the CPR doll.

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  2. Oh Jenni... I am SO sorry girl :( I wish I would've known about you needing help on your vacation - I would have been there in a heart beat so that you and Ray could have actually had a vacation. I know that you guys so desperately need one. I've tried calling you a few times - I know you're super busy though!!

    Believe me, I know the whole reflux journey all too well. We were steps away from a G-tube with Pierce. If you have the money to invest in a Nap Nanny I would HIGHLY advise it - they're around $150. If you don't, let me know and I will get it for you. We would be lost without it. I think it saved us from needing the G-tube until his anatomy started changing. We're still dealing with GERD - I hate it.

    I have a ton of questions for you - I won't fill this comment with it. Call me if you get a chance.

    Love you and praying every single day for you.

    love, Laura

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  3. Jen,

    Although Seth has not had any of the medical complications that Mia has I can understand all to well about the life changing experience it has been having a child with a disability. I can't imagine the fear of losing her and all the emotions that go along with that on a day to day basis. Please know that you are all in my prayers. Never feel guilty about wanting time to yourself. If you don't take care of you, you won't be able to take care of her. A very dear friend told me this about my guilt of wanting time for me, I hope it helps u as it did me. He said, "If u were on a plane and it was about to crash and your kids were with u who would u put the oxygen on 1st? I said them! He said if you didn't put the oxygen on u 1st you would never be able to put the oxygen on them, you would pass out." This advice did help me put things in a better perspective. Please take care of yourself. I would never mind coming to help if u need time. I watched all my friends and their kids being babysat by their friends, grandparents, and family; I never had the luxury of anybody wanting to come help out with my son with autism. If they did I got about 10 phone calls while I was gone. I think it was probably just fear of what if something happens, not because they did not care or love us. I know u have many friends that u are a lot closer to then me but if u ever want to talk, I am here! Love and prayers, Bebe Bode

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