I can not tell you how excited Caleb and Hannah are to see their newest little brother. Both of them are collecting random toys from around the house for Joshua. They are excited to look through his tiny little clothes and oohhh and ahhh at how tiny he is going to be. They also have full faith that "God will bix Joshua's heart" - translated "God will fix Joshua's heart." I'm amazed at how excited and full of love for him they are.
I am surprisingly at peace. I have my few moments of worry and doubt, but within seconds of letting those thoughts creep in, I am instantly at peace. It is a peace that can only come from God. It consumes me from the inside out and calms my every fear and worry.
My mind has been trying to imagine what the next week or so will look like. I try to think about how I will feel the first time I meet Joshua. I try to visualize Caleb and Hannah meeting him and talking to him. I try to picture Shane and myself handing Joshua over to the doctors and surgeons. I picture us in the waiting room anxiously waiting for news about the surgery. I try to picture Joshua in his hospital bed hooked up to ECMO, swollen, with his chest open. I just can't picture any of it. I have no idea what to expect. I have no idea how I am going to feel. I have no idea what my reactions will be.
Part of me feels like God is blocking those pictures from me. Not allowing me to even think about it or comprehend what the future will look like. I feel like those pictures and thoughts are so far ahead in the future that it's impossible to think about. I feel like it's all so surreal. I keep thinking that God is telling me to take one step at a time. To breathe, live moment to moment, and to love and live as best I can in the now.
This goes against every trait in my personality, but again, I'm at peace about it. God will lead us, step by step, moment by moment. He is and will continue to prepare us for what the future holds, giving us strength every hour to get through the next. I have faith that he will continue to give us the peace that He has given us so far.
(I'm sorry I don't have a better ending to this post...I feel like my thoughts are all over the place tonight..I'm just trying to get them down so I can better understand them...I don't expect you guys to understand what in the world I just wrote!) :o)
8 comments:
I never understood completely what "peace that passes understanding" meant until Myra was born. That verse has taken on a new meaning to my life since then. It is amazing, calming peace. I'm glad God is continuing to grand that to you. =)
You mentioned not letting the kids see Joshua if he is vented. I really thought my kids wouldn't do well. But, we were in the position that we didn't know if Myra would live through the night, so we decided that not seeing her would be worse (or seeing her dead, for that matter). So, we showed them pictures, let them ask a million questions (which they did), and let them see her that 1st day. My 7yr old cried because he wanted to hold her and was sad she was sick. My 5yr old just talked about her curly hair and small fingers. My 3yr old (my very detailed child) asked again about all the tubing but just wanted to touch her hand and head and kiss her. My 2yr old just smiled and kissed her and said her name over and over. They saw her only 2x before the hospital didn't allow them due to H1N1, but we posted pictures all over the house. It helped them think of her, pray for her, talk about her, and include her in the family even before she was home. And between the 1st and 2nd visit, my 3yr old noticed the change in equipment, IVs and such. She was so excited her hands were free from IV lines (she had a central line in her leg by then). And my 2yr old, for weeks, if asked to point to Myra once she was home, he would point to the picture on the wall, not understanding the baby home WAS Myra because she looked so different. So, I wouldn't be too afraid to let them see him if it's important to them. My kids wouldn't have made it another month without seeing her. They have books at the library, too, that will show pictures of babies with monitors and such. Just wanted to share.
Praying for you guys often and hoping all goes well. Please let Shane know I am here if you need me!!
How exciting! 3 more days and you will finally see your little mans face! :) We will keep you all in our thoughts and prayers as you begin the next step of your journey. C'mon baby Joshua! :)
heart hugs,
Jenny
Praying for you every day!!!
There are a lot of 'heart mommies' that understand exactly how you are feeling right now. Enjoy your weekend and try and get some sleep. Your next week will be busier than you could imagine and no matter how you try...sleep will elude you.
Praying for a peaceful weekend for you and your family.
Jill...forget the "3 days and my life is going to change completely" THAT happened the day you found out your child had a CHD. Honestly, I look at the day we found out as the day that MY heart was forever changed.
Forgive me for asking this is such a public manner, but it was always my understanding that ECMO was a "last resort" type of machine to be used. I know that every doctor does things differently (how well we found out when we had to deal with 58 of them) even the doctors that practice together often do things differently. I just bring it up because you wrote that Joshua would be hooked up to ECMO. At All Children's Hospital in St. Pete, FL, (where our daughter had her OHS) the mysterious "they" used that only for the rarest of occasions. On a happier note - thought I would give you some encouragement - there was a newborn baby boy there when we were. Connor has the same CHD that Joshua does. He had OHS and within 6 days was discharged from the hospital. Remember that miracles happen every day. Every.Single.Day. Your son will be one of those miracles. May you continue to be blessed and feel the strength of your Higher Power carry you through this difficult and often times confusing journey of Heart Parent 'hood.
Shannon Egan
cp: McKenzieLayneEgan
I'll be keeping you, Joshua, and your family in my thoughts and prayers. Hoping and praying everything goes well!
Shannon- You are right in the fact that they use ECMO as a last resort, but when we toured the facilities and met with the fetal care coordinator as well as the surgeons, they told us not to be surprised if Joshua does end up on ECMO even if it's just for a short period of time. I'm praying that we won't need it, but at this point, I'm just trying to prepare myself for it just incase!
Thank you so much for your encouragement! I really appreciate you taking the time to offer kind words of love and support! :o)
Ok - that makes sense. A just "in case". I know that each child is a individual and will handle surgery as such so I can only give opinions on what we experienced during our OHS. One thing I will say is do not be suprised at how "puffy" and swollen Joshua may look a day or so afterwards. That was my biggest "suprise" moment. We will continue to life up Joshua and your family in prayer. If it is ok with you I will add your name to our prayer list at our Church (afterall, I reason one can never have to many prayers!) Enjoy these last few days of your pregnancy. Mine was a emergency c-section and I regret not having that feeling/knowing that "this was my last day pregnant"
The most important thing I can tell you in this whole journey is to trust your instincts. There is NO such thing as being "that mother" or "the mother who asks a million and one questions" when it comes to this road you will now travel. Have faith that your Higher Power will be guiding the surgeons hands and wrapping His loving arms around Joshua while he is in surgery. You are truly blessed.
Shannon Egan
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