Everyone says that I should keep a journal. That I'll be so glad that I did when this is all over. I can't even imagine what it will feel like when this is "all over," or that I will ever want to remember it all in such detail, but right now, I don't know what else to do. And I have to do something.
It's the most helpless feeling in the world. Sitting by your newborn's bedside. Knowing that you can't hold her. You can't feed her. You can't swaddle her to comfort her as she gags on the tube down her throat. We waited for over a week to see her open her eyes. When she finally did, I found myself trying to lull her back to sleep because I couldn't handle the look on her face as she gagged and silently cried. But now I haven't seen her eyes open again in two days, and find myself wondering if I made a mistake by wishing she'd just sleep.
There is absolutely nothing that I can do to help her right now. My husband Chris and I just sit by her side day and night. Waiting for the doctors to make their rounds to give us any glimpse into what her future near and far may hold.
Everyone says to expect setbacks. That's easier to say than to accept when it is your own child fighting for every breath. I try to stay positive, but right now, I'm just angry. I'm angry at the doctors who condescendingly told me, "this must be your first, right?" when I'd bring her to the pediatricians office or hospital, convinced that there was something wrong with her. They'd treat me like a hypochondriac before sending us home with the diagnosis of reflux, or gastritis. I'm angry that my perfect little Peanut Britta is spending her first weeks of life asleep. Unable to be at home with her brothers and sister. Unable to be rocked and swaddled and sung to sleep at night. It's just not fair. As childish as that sounds, that is exactly how I feel. It's. Just. Not. Fair.
It is all so surreal. So unbelievable that it was only a week and a half ago that she was at home with us. Just a week and a half since the doctors brushed it all off as reflux. Just a week and a half ago, we had a "normal" life. Now, this is our new reality...
Please know that you and your family are in our prayers. Little Britta is so brave, and she has so many people praying for her.
ReplyDeleteSo glad you are doing this. You have such a way with words. I think it WILL help you and keep all the people who love you informed along the way. Loves !!!!
ReplyDeleteSo so happy you have started a blog for Britta!! <3 I wish I did this when Justin was in the NICU- I don't even think I knew what a blog was back then! LOL
ReplyDeleteI totally feel the pain of not being able to hold/comfort your baby. You took me right back to one of my most heartbreaking experiences with Justin when he had a huge setback and was moved to the surgical part of the NICU and taken off all feeds until they could figure out what was going on. They just placed yet another IV so he was all upset from that ordeal, and when I tried to hold him to comfort him when it was all over- he cried more since he was starving and smelled my milk. The only thing he wanted from his mama I was unable to give him and it ate me up inside.
You have every right to feel the way you do- no it isn't fair. I went through that too, and then felt guilty for what I felt. But her homecoming will be amazing and she will be a whole new little girl you never knew before. <3 Continued prayers for Britta as well as you and your entire family. Hugs!!
Steph, my heart is breaking for you guys right now. The Bible says to "weep with those who weep," and that comes easily right now. I love you and Chris and little Britta Bug whom I've never met but am somehow in love with anyway. If there's anything I can do, no matter how crazy or impossible it may seem, please let me know. In the meantime, I will be doing the most important thing I can do.
ReplyDeleteOh, Steph. I am so sorry. I can't imagine what you guys are going through. It's not fair and I'm sorry. Still praying. Still fighting in Britta's army for her. Love to your family.
ReplyDeleteHi Steph, My name is Kristen. A friend of mine introduced me to your blog from Facebook (Bobbie). Our son Maddoc had open heart surgery in December to correct his SVAS and Pulmonary Stenosis. Though he still has some defects (and new issues) we are watching.
ReplyDeleteI will be praying for you and your beautiful baby girl. And if you ever need to chat or vent, I'd be happy to lend an ear :) One thing that has proved invaluable on our journey is the support from other heart moms I have met.
Steph, thank you so much for sharing your heartbreaking journey. My prayers are going to Britta and your family. She's such a beautiful baby.
ReplyDeleteMy son has had a lot of health problems in his life, including stomach/intestinal surgery day of birth and an open heart surgery a few months later, so my heart goes out to you. We're past most of the really scary stuff, but I look back at that time as a defining moment in my life. We all changed because of it.
Your writing is beautiful, by the way.
I'm totally bawling for you right now.
ReplyDeleteMy friends daughter was diagnosed with a WAY rare disease at the age of three - came out of nowhere, and she too, was sent home several times before she demanded to see a specialist.
I SO hope and pray that you're able to hold her soon and that she'll be awake and happy. I cannot imagine.
Praying for and thinking of you and Britta.
ReplyDeleteI can't imagine the pain and anguish you are going through right now. There's nothing I can say to make it better. But I do know that little girl has about the best mama in this world fighting for her when she's to weak to do it alone. Hang in there my friend...continue to be strong. Her beautiful eyes will look upon you once again. Sending you love and well wishes from afar : )
ReplyDeletexoxoxo
I'm praying! When you know that you're at the end of your strength, remember the Lord is at the front of the battle. Hugs.
ReplyDeleteI will be praying that you get to hold your little girl soon!
ReplyDeleteBeautiful baby girl... my, oh my... what a special little one you sure are. I am so amazed by your strength, your willpower to survive. Your tenacity for life has changed me, pierced me in my inner core; always- choose- joy. Thank you for not giving up, and for allowing me the honor and privilege of loving you along with your family through this journey. Forever grateful for you.
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