Eleanor and I got to go for a ride this morning. Unfortunately, it was not in my minivan and we weren’t heading home.
Over the last several days, her progress had really stalled. She did manage to kick her oxygen habit, for which we are grateful. But her feeding has not gotten better, and in fact was getting worse, especially as the volume and caloric density of her feeds went up. Given that she is nearly two weeks old, nearly at her due date, the doctors think the time of wait-and-see is about done and it’s time to really get to the bottom of why she isn’t taking her bottles at all well. Additionally, there are a handful of other curious symptoms and characteristics that warrant investigation.
A number of tests have already been done at our very capable community hospital, and every test has come back beautifully within normal limits. Which is great, but doesn’t seem to get us much closer to an answer, nor closer to bringing her home.
So, today, we rode in an ambulance (no sirens or lights, she is totally stable and was in no rush) to one of the big teaching hospitals downtown where she can get more detailed evaluations by more specialized doctors. A feeding team. Genetics. Neurology. Who knows what else.
I am simultaneously glad and terrified.
I agree with the doctor that “wait-and-see” time is done, and I’m glad that we’re taking some action. I’m glad to live in Massachusetts, only a short drive away from some of the best doctors and hospitals in the country.
But I’m hugely stressed out to have her farther than five minutes from my house, both on an emotional and logistical level. I’m nervous about the tests. While I want answers, no parent wants to think there’s anything wrong with their child that is any more serious than a cold. I hate that I have no idea how long she’ll be there. Could just be an overnight while they do tests, come up with a plan, and send her back to our hospital. Or they could order more tests, want to watch her, keep her for longer. I have no idea.
I alternate several times a day between calm acceptance and complete freak-out. My gut reaction is that, whatever “this” is, it will be something we can come up with a plan and manage at home. That, whatever it is, she’ll be alright. But sometimes the dark side of my imagination spirals out of control and I end up sobbing in the shower. The fact that I’m married to Mr. Worst-Case Scenario isn’t too helpful, either. Thankfully, he keeps most of his scenarios to himself, but it’s not as though he’s a shining light of optimism.
Today, I have been in straight logistics mode. Hugs for the nurses as we left our “home” hospital, but otherwise just stayed with Eleanor while she got packed up, rode in the ambulance, and settled in her new digs. No room for being emotional or scared. It helps that, despite her feeding issues, my girl is quite stable. No one runs around like chickens with their heads cut off, the nurses work quickly and efficiently but without a major sense of urgency, so it’s easier to stay calm.
It was a major adjustment for me and M, too, to get used to this new place. New people, new procedures. Enormous building with wing after wing, floor after floor, huge amounts of foot traffic, and a main lobby that reminded me forcibly of checking in at a Disney World hotel. While I’m not unfamiliar with the medical area in Boston (a neighborhood with at least four or five world-class hospitals), the contrast with our local hospital made me feel like a country mouse.
So, there we are. Eleanor is settled and fine, consults will likely happen tonight or tomorrow morning. Being that her condition is so stable, she is more likely to be bumped for someone else who is a greater emergency, but hopefully there won’t be major delays. Hopefully by tomorrow night we’ll start to have some feedback and the beginnings of a plan.
We’ll see.
like I told you earlier, I wish I was there to hug you and probably muscle my way into her case so I could be her nurse so I could finally cuddle and snuggle her because you how we NICU nurses are.
This is so hard but you are handling it all with so much grace.
I’m praying.
LOVE!
laura recently posted..burning down the house
This may sound horrible, but I’m glad they realized there was a problem before sending her home.
My good friends just had their second baby on 1/21 and two days after she was sent home she had to be rushed to the ER (during a major snowstorm) because she was vomiting blood.
She was admitted overnight for IV fluids/ nutrients and released the following day.
She began loosing weight rapidly after that, and only within the past two weeks has she reached her birth weight (6lbs,1oz) and is now almost 7.
Wow, just realized that this comment is more like a blog post in length (sorry for that).
As someone who has had my own fair share of medical mysteries, I truly hope you fine the answers with this new hospital.
Good luck, keeping you and E in my prayers
Megan recently posted..Stumbled upon your blog on twitter Keep up the great work Im an Art Director in NJ- like your site! All the nest- Mari
Hi Liz,
Hang in there! Thinking of you and your family-
Amy Dennis
Dang, Laura took the words right out of LauraC’s mouth! Wish I could be there to hug you and wish I could just hurry up and get her home.
You are the definition of grace under pressure. I don’t even need to have crazy celebrity idols because moms like you are my real life role models.
LauraC recently posted..Why I will never be a gazillionaire with twins
That orange tube, the feeding pump in the background, definitely feel empathy for you. Here’s hoping for answer, and a switch going off type outcome to quickly get back to Kansas again. How much does she weigh now?
WIley recently posted..“Psst… got some breast milk- step into my alley”
You are grace under pressure, defined and redefined. I am holding your family and baby Eleanor and the wisdom of rockstar physicians in my prayers.
Rachel recently posted..Birds On A Branch
Hi There,
My heart goes out to you. We had a month long NICU stay just this past summer and it’s extremely difficult, as you know. It’s mentally and physically exhausting and I didn’t even have 2 other kids at home. I cried many times every day and cried myself to sleep every single night. The 50-minute drive home every night was beyond difficult. You know how difficult it is to say goodnight and goodbye to your child as you walk out the NICU door. Stay strong. Best wishes for quick answers and a short and uneventful NICU stay.
Ugh, I’m so sorry and hope you get some answers soon!
I’m way overdue on reading blogs and I saw this first. You and your family are in my prayers. Hopefully you will get some answers soon and she’ll be able to come home.
Heather recently posted..Meal Plan Week of 1-30-2011
Good luck. The doctors will figure this one out. She will be home in no time.
Sarah, Goon Squad Sarah recently posted..My Lifehack
I’m so sorry you are dealing with this. I hope you get answers soon and that the answers aren’t anything to worry about. YOu guys are in my thoughts!
Amy recently posted..Way Back When-esday- 3 years ago
I am praying for you. Wish you find out what she has and that it is close to nothing.
Julia recently posted..Mamuba!
Sending lots of positive vibes your way. I am so hoping you get to bring your little one home soon. As someone who is fresh off the emotions of giving birth, I am amazed by you. I know I would not be nearly as calm. Hugs to little Ellie and praying for you all!
Erin S recently posted..Cheer- cheer
Simultaneously so sorry and glad that you’re getting closer to answers. I’m hoping for a speedy, benign ending to this little drama that she is staging. Hang in there, I know this has got to be excruciating.
Gwen recently posted..Just some random pictures I like
I so feel your pain…having just spent the last week there with Oliver. Know you are in capable hands…and in our thoughts! Let me know if I can pass on any tips if you have an extended stay.
Kristen recently posted..Meet Oliver
Hi Liz
Just a note to wish you all well. I’ll be thinking of you and little Eleanor. Hope she is home soon.
Glad she’s there and tucked in. So appreciate the photos.
jane recently posted..Twenty-Nine Months
Liz, I’ve been reading your posts–heart-wrenching–that you, your little girl, and your family are going through this. My prayers are with you so that Little Eleanor will be home soon, safe, happy and thriving.
I am so, so sorry. I’ve done one of those “rides” – except I didn’t get to ride along, I had to drive behind. You’ll be in great hands, and I hope you get answers quickly. I have but one piece of advice, get a notebook and make sure you write down what is happening, who she is seeing, what tests are being run, etc – it will help you in the long run.
Oh, and final note, our insurance company would not approve a return trip to our local hospital after our son was transferred. Just wanted to warn you that logistically, it may be tough for awhile. Keep the in-laws around (I cringe as I say that…)
Stacy recently posted..Dealing With It
Hi Liz – I’ve been following your posts – sorry I haven’t been commenting. Oh my goodness – how stressful for you! I’m 90% sure that the hospital you are referring to is the hospital where my girls were born and where most of Anna’s doctors are. She is in good hands. I hope they can quickly figure out what is going on with baby Eleanor and that she is able to come home soon.
Sarah recently posted..Snapshots of my life
Its not easy to be without your child, but makes it ” a little easier” knowing she is in such a top rated hospital where you can get some answers!
She looks so cozy in her isolette and hopefully soon enough she will be cozy in her own crib.
Glad you have R&D to make you laugh and give you the many hugs and kisses you need right now!
Liz- you and your family are in my thoughts. I can’t wait for the day that you get to bring Eleanor home.
I’m sure E will be well taken care of at that big hospital (I know exactly where you are, and I have been there too, and man, is it overwhelming), but mostly I hope she gets to come home soon!!
Carla recently posted..Desperate Times…
Liz — catching up here, and my thoughts are with you. Hoping Eleanor is home and the 5 of you are together soon. You are in good hands as you know and I hope you have answers soon.
Sending a virtual hug your way (is this strange? we’ve never met) – I hope that very soon, this is all a distant memory, and Eleanor is home where she belongs.
Allison recently posted..Rise and Shine!
Thinking of you guys…I know the baby is in the best place to get the great care that will get her home as soon as possible.
amanda recently posted..The Great Lock Out
another stranger pulling for you all to be home together very soon.
I’m so sorry, Liz! That’s got to be scary situation.
I hope the docs can figure out what is going on with Eleanor quickly so she can start catching up on her feeding skills and come home with her family ASAP. Praying for all of you!
As much as it sucks right now, answers are so much better than unknowns. I am thinking about you and your family and praying things get figured out quickly and you can snuggled in at home soon soon soon!
Lots of healthy baby thought headed your way. I am glad that your hospital chose to escalate it to the specialists, hopefully they will have a quick answer for you and little Ellie can start gaining!
Man Liz, the good times just keep coming. Serious good thoughts and prayers con’t to be directed your way. As much as it takes time to post what is going on, I’m glad you are. I hope it helps to write and send it out. Thank you for sharing what is happening.
heather v recently posted..Show Me the Mommy- Diagnosis- Lots and Lots of Pac Man
I used to follow you regularly, but lost track due to life’s insane busy-ness.
First, congratulations on a new little one, how exciting!
Secondly, I am so sorry to see that it has been a struggle. I can only imagine how hard it must be to have to leave your little one and see her being subjected to tests.
Hopefully an answer comes soon.
Betsey recently posted..Messtastic
Liz, as you know, Eleanor is getting the very best care she could get. That’s the good thing. You are an incredibly strong and capable mom. That’s the other good thing. This is an emotional time and sobbing in the shower, or breaking down at other times is more than appropriate. Any of us in your situation would also let our minds go to the “what ifs” and that’s OK. Just remember to reach out for help, and go watch Bill Cosby Himself to give yourself a pick-up if you need it. You guys will be OK.
Sending good thought and some good energy your way. Hopefully thinkg will clear up soon.
While I was reading your post, Mumu was peering over my shoulder. She pointed at Eleanor on screen and said, “That’s a beautiful baby.” And she is beautiful- and the docs will figure this out.
jungletwins recently posted..The End of Jungle Twins
So sorry to hear she isn’t quite ready to come home yet. You will all get through this difficult time and be home soon enough. My guys spent nearly 3 months in the NICU and are doing beautifully now. Hugs!
I hope you can bring your sweet girl home very soon!
Brenda recently posted..Sleeping- eating- running
I hope you have non-scary answers and the needed solutions soon, and that Eleanor will be able to safely come home to her family! Maybe she just wants to help you feel completely done having babies?
Liz, I am praying for your sweet little girl. I too wish there was a way I could give you a hug, and I wish I was somehow able to shoulder some of your pain.
Waiting expectantly to hear good news in your next post!
Krissy recently posted..You Shouldnt Leave Blogger Open on Your Birthday Eve
Hugs to you and your family! Eleanor is such a darling baby (especially love the last pic in this post of her all snuggled up) and I hope the docs can get to the bottom of this and get her home with you soon. I am thinking of you.
Just wanted to send some hugs – thinking of you.