Eleanor has been at the Big Hospital for about three days, now. A handful of tests have been run, a couple more are probably coming up. I have bits and pieces of new information, initial test results, preliminary findings. But not much. Not enough for a diagnosis. Just enough information to be a danger to myself. I am staying away from Dr. Google, but it’s hard.
The two pieces I will share today are these:
1. She is not being discharged any time soon. On her feeding alone, she’s going to be there for a minimum of, I’d say, 2-3 weeks. Could be longer. I have no way of knowing right now, except that this will not be a brief stay.
2. Some test results, while still very vague, are starting to point towards there being a Thing. Not just preemie-style grow-out-of-it stuff, but a Thing, a Diagnosis, a Name to whatever it is she’s got going on. I don’t know what it will be, I don’t know its relative severity or prognosis or anything. But I believe there is a Thing in my future.
You will have to forgive me for being so vague. In part, it’s because what information I currently have is, itself, pretty vague. I truly don’t know much, except to say that it seems like there’s something brewing. Also, for once, I’m choosing to show a little restraint in how much I share here. I have every intention of talking about whatever the Thing is, once I know anything about it. But I’m going to hold off on sharing every little puzzle piece as it trickles in, since I’m not a doctor and so far have no idea what any of it means. And neither, so it seems, do the doctors. They’re still trying to put it all together.
We are, as you might imagine, stressed right the hell out. M and I handle it differently, but there’s no shortage of stress. The not-knowing, the partial-facts, the waiting, are all brutal.
But I feel a little better when I’m there. A little. I feel better when I get to hold her, see her chubby face, change her stinky newborn diapers. I’m glad she is so stable. I’m glad she isn’t fragile right now, she isn’t touch-and-go, she doesn’t seem particularly, in a sense, “sick.” She’s cute, she’s sweet. She’s generally pretty calm, except when she gets pissed off, at which point she reminds me of newborn Rebecca, screaming and bright red all over. But thankfully the rage passes pretty quickly. She sleeps a ton, of course, but has some lovely periods of quiet wakefulness. She makes funny little sounds and faces and smiles in her sleep. Every time I have to leave the hospital, I say goodbye and give her a kiss on her head at least six or seven times before I can peel myself away.
It’s possible the other shoe is about to drop. It’s possible a whole shit-ton of shoes are about to drop. It’s still, maybe, possible this will be much ado about very little, though I’m sorry to say that I rather doubt it.
But I don’t know.
(((Hugs))) Thinking of you and your sweet girl. I hope so much that the doctors are able to work out what this Thing is, and that it’s nothing major. Take care, and be gentle on yourself.
Oh Liz, I am so very sorry that you are all going through this! I have been following your FB and Blog posts, as well as keeping sweet Eleanor in my prayers. I am sure you’re overloaded with stuff going on, but please let me know if there is anything I can do to help. Have you had any meals delivered from the group… I know you are sort of “anti-help”, but this seems a perfect time as any to break down and say “HELP ME PLEASE!” Don’t forget I work right next door and can pop-on over to the Big Hospital anytime, with food, hugs, chocolate, magazines, ANYTHING!!
Thinking of you all. I know we are not super close, but if you need anything, please let me know. I am just a few towns over. Dinner, childcare, anything. I hope Miss E comes home very soon and that this all becomes a distant memory.
Oh my goodness – I am so sorry that you are going thru this. She is at the best possible place – we are lucky to be so close to these hospitals. I’m keeping my fingers crossed that the Thing turns out to be minor.
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Keeping you all in my prayers. I hope it turns out to be a small “thing”. Thank you for keeping us updated.
How are the big kids doing?
You poor dears; you write so eloquently that is difficult not to feel your stress and confusion – but I also feel your love for your child, and your strength, even if you may doubt it yourself. Where I come from in New Zealand, we have a saying – “kia kaha” – it means, be strong, but also much more than that. It is less an instruction than a “I know you have it within you”. So, kia kaha, keep going and know we are all here right behind you, supporting you in spirit. Much love.
I can’t even begin to imagine how stressfull all this waiting and not knowing must be. Glad you are still able to enjoy your moments with E. Just wanted to let you know there is one more person out there thinking of you. Hang in there.
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I so sorry you are going through all of this. I think of you and your family often.Please let me know if you need anything!
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I am so sorry you all are going through this. I will keep you guys in my prayers. I hope that they figure out what is going on soon and that it does turn out to be much ado about nothing. Take care of yourself too.
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My thoughts and prayers are with your beautiful baby girl and your family. May your family find the strength to get through anything good or unexpected.
I’m so sorry and I will say a prayer for your family. I hope whatever “it” is will be simple and easy for little Eleanor to recover from quickly. My heart breaks for you – no mommy should have to write a post like this. Hang in there and know that lots of people are sending positive thoughts and prayers for your little cutie.
Your family is in my thoughts and I hope you get some definitive answers soon.
Just wanted to say that you and your family is in my thoughts and that I am so sorry you are dealing with this. I can only imagine how hard it must be. Hang in there and know you have a whole blogosphere pulling for you guys!
I’m praying for you guys from this side of the world. I don’t know what else to say, other than just keep swimming, just keep swimming …
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Thinking of you always.
Praying for you and your family during this difficult time.
Not much else to say except hugs hugs hugs.
And we all totally respect and understand your right to privacy.
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My thoughts and prayers are with Eleanor, you, and your family.
I’m reminded of Elizabeth Edwards words in Resilience. “Sometimes all you can do is fall back on those who love you.” I hope wherever these days, weeks lead, know how much you are loved.
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I have followed your blog for several years. I have not left a comment before, but I want you to know you and your family have been in my prayers.
Lots of hugs from all of us. Thinking of you and little E and hoping for good news.
I am so sorry for all of you. First of all for Eleanor, who is having such a rough start, then for you and your family. And also for your long-dreamed experience of “normal” birth and early motherhood taking such a hard blow. I can only imagine how difficult it must be to take all that in at once.
Praying for you.
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thinking of you, sending prayers for you and your family your way.
Thinking of you and your family.
Thinking of you all.
Thinking of you and eleanor. See if you can find time for a treat for yourself, a movie, a massage. And breathe. And lots of hugs for all the small people in your life. They won’t know its for your benefit not theirs.
Our family is thinking of yours. And yes, stay away from Dr Google, he has giving me nothing but stress.
Been thinking of you a whole lot the past few weeks. Let us know if you need ANYTHING. Put your name on the list for a meal…or two. We’re all here for you!
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Hi, Liz — I’ve been following your blog posts and FB status updates. I’m so sorry that you’re stuck in this limbo! I’m thinking of you all. Wish I were closer so I could help in some way. ((HUGS))
Thinking of you always. Please let us know if there’s ANYTHING we can do – we’re not that far and here for you.
What a frustrating and terrifying situation complicated by the two you already need to be strong for. Hold all three of those munchkins close to you…no matter what the Thing is, the biggest Thing they have is your love. Stay strong, mama.
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Thinking of you and your family. Good luck and hang in there. I can only imagine how hard this must be for you.
Thinking of you and your sweet baby girl. Hoping and praying you get the answers you long to hear.
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Oh, Liz. I have no words to offer, just lots of love.
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May it be a small Thing. All four of us are thinking of all five of you. I’m so impressed at your ability to Keep Calm and Carry On.
My thoughts are with you, your family and Eleanor. I hope you get some answers soon. Lots of love.
Liz – I am so, so sorry. As the mom of a kid with a “Thing”, I get it all. I am so, so sorry that you have to go through this. I remember saying at the time, it was the not knowing that was the hardest. Once I knew what “it” was, I could move forward. I could research, reach out to others, plan, and figure out my new “normal”. The not knowing part DRIVES * ME * CRAZY.
Prayers for you guys.
Whichever Big Hospital you are at~you are most certainly in experienced hands. I had all my kids at B&W and my oldest was in the NICU there and taken care of by CH drs. They look at EVERYTHING before they diagnose anything. They’ve seen it all.
Having said that, my heart aches for you as a mom. As I can see from the comments, you have prayers coming from near and far. Mine included.
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I was thinking of you and your family earlier this weekend. I hope things resolve soon so you can take your girl home, and of course I will be praying for your family in the weeks to come.
Definitely thinking of you and keeping your family in my prayers. Hopefully you will have answers soon!
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Ugh. I am so sorry you guys are going through this. I know how much it sucks when they can’t figure out what The Thing is and how to fix it. I have always been so thankful we live in Boston to have access to such great care, even when it gets frustrating.
Hang in there and I hope whatever E’s Thing is, it is manageable and gets her home soon.
Hugs
Just another note of support and good wishes! I do hope for a diagnosis and a plan – I’m sure the lack of information is, in some ways, the worst part. But, I know that a lot of “things” are themselves not definitive answers…
I am paying for health and happiness for your sweet little babe. Love and hugs to you and the fam.
My guess is not knowing is what is the most stressful to you. Like Stacy said, once you know then you can move forward–and I know you will. Katie and I say a few prayers every night and the five of you are at the top of our list. She’ll whisper, “God bless M, Liz, Rebecca, Daniel and Baby Eleanor”. It’s going to be OK–honestly.
I am so sorry you, Eleanor and your entire family is going with this. I will be thinking good thoughts for you that the THING ends up not being very serious. You are a strong woman and mother!
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Liz, so sorry to hear what you are going through. Keeping you all in my prayers, may the Thing be disclosed and managed soon. You can get through this.