Tuesday, August 9, 2011

Just Keep Swimming, Just Keep Swimming

They are releasing me from the hospital today.
While I'm grateful to finally be approved for 'graduation' I'm apprehensive too.
For the last 5 days I've been a 10 minute walk from Emily's room.
And when we are finally brave enough to leave the hospital later today, we will be an hour's drive away.
How is that a good thing?

The hospital offers housing for parents in our situation but we don't qualify because we don't live far enough away.
There are hotels that offer discounted rates to parents in our situation but we're not sure we want to spend the money for hotels.
We've had a couple of people generously offer us their couch, or their basement bedroom if we need a temporary place to stay, but for now, while I'm recovering especially, I think we need the comfort of our own place.

We'll figure it out.  We'll find a balance that works for us.  And hopefully that balance includes as much time with Emily as possible.

Emily was supposed to have an MRI yesterday for a closer look at her heart.
When we got to her room yesterday morning we found out the MRI had been postponed until Thursday.
When we asked why we were told "The cardiologist didn't want to deal with her today.  They've got other patients who are much more critical than Emily."
I didn't react well to the 'didn't want to deal with her' part of that statement, although I was grateful she wasn't considered critical, but once tears start they don't stop easily.

When the group of doctors did their rounds and ended at Emily's bed I asked them how long she had to have the one arterial line that was preventing us from holding her.  I might have had a rather large lump in my throat, and my red eyes might have clued them in to the fact that I could be considered unstable.

They discussed it amongst themselves and determined that the arterial line at that point wasn't serving any real purpose and they would take it out later in the day.
And further, the nurse decided that if she wrapped Emily in a blanket to protect the line until it was removed, we could safely hold her.
Again, it might have had something to do with their fear of my emotional state.

Emily is on a drug for her heart that makes her agitated and a little bit grumpy.
She doesn't like to be stroked.
She does like to feel pressure on her feet or on her head and so we spend a lot of time holding her feet in one hand, and holding the top of her head with the other hand, and through it all her little body jumps and twitches, and she whimpers.
The minute they put her in my arms yesterday she calmed down.  Everything about her was relaxed and she slept peacefully in my arms, and then later in her daddy's arms.
I said to Jason, "Can't they see that this is what she needs?"

My mom called me yesterday and after the conversation ended she called my sister Heather.
"Noelle's not handling it today.  Not even a little bit.  I'll take care of your kids, you take care of her."
And so my sister came to my rescue.  She took me to lunch...as far away as the hospital cafeteria, but it was away enough...and she listened to me vent.  And then she cried with me.  The few hours I spent with her were enough to get me through the day.
And when she left, and I was safely tucked into bed for a long nap, Jason left too.  
He went home and went on a 40 mile bike ride.  My sister cleared my head and Jason's bike cleared his.

And now today we start all over again.
We'll hold our baby, we'll smile and agree when every doctor who see her tells us how cute she is, and we'll keep praying.  That's really all we can do.

Thanks for reading...for being there for us...and for your kind and loving comments.
Knowing that my little Emily is loved by all of you, that is food for this mommy's soul.


Brynn said...

So sorry Noelle. I don't know all of the pain that you feel, but I do know how it is to leave a baby at the hospital and be an hour away. It stinks! And I do know how it is for the doctors to limit holding time and that stinks too. And to be recovering from a c-section makes it even harder. Hang in there. You can do it! You are strong. When can I come visit you? Emily is so cute and I love those long toes.

Sandra said...

I wish, I wish, I wish. So much I wish for your little family. But know this, my biggest wish is that I could make it "all better" for you.

I love you all and will continue praying for you.

Dazee Dreamer said...

Just remember, you are her parents and you can question the doctors. You have that right. I remember being a first time parent and always thinking "they were the boss". No, you are, you have the right. And Yes, little Emily needs to be held as much as humanly possible.

I'm so glad you have a loving family. That is a huge help.

I think that you will see that driving up every morning and spending the day with your daughter, but sleeping in your own bed at night will be a huge comfort.

It will be hard leaving the hospital without her. I've been there. I cried all the way home, and then the rest of the day. You will be in my thoughts and prayers today.

I would take it as a good sign that they are putting off the MRI till Thursday. Their wording was just awful. The rats.

Anonymous said...

Hang in there you two.

Amanda said...

She is such a beautiful baby. Doctor's bedside manners can be dreadful at times.

cfoxes33 said...

Bless you all. I am praying for you. Get some rest at home and the more rest you get, the better Emily will sense that about you.

Sarah said...

Hang in there!! She's beautiful!

Joann Mannix said...

Know that when you are away from her, you're getting the rest and healing you need to stay by her side. And the same goes for Sweet Emily. She is in the best place and they're working on fixing her so she can come home. Come home. It will happen.

And yes, doctors sometimes get so caught up in healing, in this case, hearts, that they forget about the biggest part of the heart. The part that needs to be handled with the utmost TLC. I'm a big believer in representing myself and my needs to doctors. You did a good job speaking up, Mama. See, this is why Emily needs you to take care of yourself and get some rest.

And I wholeheartedly agree with the doctors, that is one beautiful little girl.

Keep marching on, darling girl. My prayers are with you.

Erka said...

I dealt with being released from the hospital, but baby still in the NICU, I know that stinks big time! I remember being a wreck (both emotionally and physically) and feeling like I was going to loose it, I feel for you! I also remember how hard it was to deal with the different doctors and nurses who have a say on your baby, and it was FRUSTRATING! If I could do it over, I'd tell you that I would do it a bit differently. I would be more assertive and demand more answers and explanations. I would throw a fit if I had to to get my baby's tests and stuff done fast.
It broke my heart to see my baby wiggle and fuss (like you said about Emily) and feel like I could do nothing but hold her finger! (See it's been four years, but some of the emotional scarrs are still there.) All I know is that when I bugged and bugged, they finally started letting me hold my baby, she started doing better, breathing and everything. It made me mad because I could have been helping her sooner and bond with her better. I am glad you are able to hold Emily and bond with her! Hang in there, Noelle, you will get through this and you will be a much much stronger person in the end. Take care of yourself too, that is important! I didn't and ended up being admited to the hospital myself a few days after coming home for not healing well. Not trying to scare you, just not wanting anyone to make the same mistakes I made. Emily is sooooo beautiful, can't wait to see more pictures of her!

TortugaRachel said...

Dazee hit it right on the head, YOU are her Mommy, and you CAN disagree with the doctors. If you feel she needs to be held, demand to be allowed to hold her. Granted, the medical stuff might make it tough, but they let you hold her once, they can't take that away from you now.

Recovering at home is an excellent idea, by the way, you'll be glad you chose that route.

And yes, she really is absolutely adorable!!

Eh said...

Noelle! You are a mommy! I am so happy for you Platt! I had a c-section, and had to go on magnesium- I wanted to die. I didn't get to see my baby for 8 hours after he was born. Then I too, had to leave him in the NICU and go home an hour away, after 6 days being so close. It is HARD! I had forgotten how vulnerable, and so tired, emotionally drained, and tired I was until I read your post. I remember thinking "my baby's spirit doesn't seem to like this body business" : ) Hold on Noelle. Emily is going to LOVE life. Someday Emily will be the one going to lunch with you and riding her bike with her daddy. Putting your names in the temple. hugs
Jen (syndergaard)

Bossy Betty said...

Noelle--So sorry I have been away and not added to the choir of love and support for you. I have read all the posts of the last fews days and sit here with tears in my eyes, but also so much hope in my heart. That little girl is coming into the world with some problems, that is true, but she is also coming into a family and community so full of love. What a foundation. I know as a mother your strongest urge is to pick her up, take her home and care for her. For now, others have to care for her physical needs, but I know she feels your love surround her warmly and securely. I continue to think about you and pray for you all.

Eliza said...

Our MRI was rescheduled to. Were you working with Dr. Su? Apparently they don't do cardiac MRI's on Mondays. I'm still a little confused why a cardiologist would have ordered one then. You'll find your rhythm Noelle. Don't let anyone make you feel guilty for being there too much or too little. You'll know what feels right.

Eh said...

Platt! You are a mommy!!! Someone once told me it is the most eternal thing you will ever do. True. And wonderful. I had a c-section, and had to have magnesium and wanted to die and had to leave my sweet baby in the NICU and drive an hour away too. It's been 5 years and I had forgotten how vulnerable and tired and emotionally drained I was, until I read your post. It is exhausting, sweet Noelle. This sounds weird but the feeling behind is the most comforting thing in my life, I know that Jesus and Father love my baby even more than I do...not sure how, but they do. Emily has a perfect support team of angels on both sides of the veil. Sounds like

Beth Zimmerman said...

I'm so sorry this is so hard! I have learned though, that God uses these experiences to make us stronger, to encourage us to lean on Him, to teach us how to comfort others, etc. Not much comfort to you right now perhaps but He is working! Not just on your baby girl's heart ... but on yours! I love you! Prayers continue!

Mr. Thompson and Me said...

You're right - just keep swimming...just keep swimming.

And while you are would you look at those adorable toes?! That's the first thing I saw when I looked a this beatiful picture - the angel has got great toes!

Love you friend. Mi casa es su casa. (too bad I don't live in Sugarhouse anymore!)

Anonymous said...

I remember standing beside the NICU box my tiny 4 lb baby girl was lying in, watching her restlessly sleeping...the jerking...the tiny whimpers...
And me: crying my eyes out...
The nurse: trying to explaining that she was okay...
Today she is 32 years old, has two adorable babies of her own...and she is waaay more than okay!! Jusy sayin'... I love you, sweet family of three!!! Please know how much we care!

Amy said...

Add my house to the ones that are available. Even if you just want somewhere to be for a few hours between things in the day you're ALWAYS welcome here. I'm maybe 20 minutes away from PCMC (that's where you are, right?) and my door is ALWAYS open. You keep swimming, she'll keep fighting, and we'll keep praying for you.

Rawknrobyn.blogspot.com said...

I just think "What a beautiful miracle!" when I see her.
It makes me angry that they "didn't want to deal with her." Of course comments like that will set you off, Noelle. Go easy on yourself. No caring mommy could stay mellow through all of this.
Keeping faith, prayers and love for all of you.

Mindy said...

She is absolutely beautiful. I'm so glad Heather could come to your rescue. <3 And I'm glad your sweetheart has his bike! :) It's good to have people (or things) that can listen.... or just let us do what we need to do to clear our minds. I love you guys. Hang in there. All will be well. ((( )))

TheBlogWriter8 said...

You're handling it all very well- all of you. I'm just praying for an easy life for everyone involved. I'm praying.

Tiffany said...

Apparently I've been on another planet for a few weeks and am therefore incredibly late to the party. Wow!!! Congratulations Noelle and Jason on your beautiful Emily. She is fresh from heaven and so precious!

I'm so sorry for the struggles Emily is having right now and for the worry and fear you are dealing with. I can't imagine it. All three of you are in my prayers.

From what I've read, you are doing all the right things. You are wonderful parents and will know what's best for Emily. (Noelle, thank heavens for all the tetchy customers and cantankerous truck drivers you've had to deal with over the years at the nursery. Pretty good assertiveness training for when it matters most)

Take good care of yourself so you can keep advocating for Emily.

Keep swimming for sure Dori!

Love you, Tiffany

le Chef said...

You already know I'm full of it, so here goes; when my daughter was in the hospital I had to fight for EVERYTHING. Dazee is right; If you want something - you tell them, and let them know EXACTLY how you feel about "not dealing with her today".
That is never acceptable. I get that they see a lot, but that doesn't diminish your humanity.
I'm glad she's not as critical - but that was just unacceptable.
This is where the term Mama Bear comes in. YOU are her mother and YOU call the shots. If you want to hold her - then dang if they better not jump and deliver.
Of course she does better in your arms - sometimes they need reminding.
If you want something Noelle, don't be shy on saying so, and bug them until they do. At some point they will realize you mean business.
I'm glad all of you were able to take a mini break. You'll need those again. And, nothing beats recovering at home. Do what your body needs. Life will sort itself out.
Hang in there you guys; everyone is still praying for you. LOTS.
Keep fighting little E!

Karen said...

Noelle, what a beautiful baby! Oh I am praying and hoping for all wonderful miracles and blessings for sweet Emily. She needs to bond with her parents often. You might suggest kangaroo care with your baby. There are studies that show the wonderful benefits of it. Do some research yourself and present it to the doctors, who think they know best!!! Love you guys!!!

wjmom said...

She is beautiful. That is all. :)

Love and prayers!

acte gratuit said...

Just catching up on my blog reading! Congrats on a beautiful baby girl with a beautiful name! I wish the best for both of you! I hope they'll let you hold her as much and often as possible and, even better, skin to skin.
Good luck and God bless! Sending good wishes from San Diego!


Fullmer Family said...

She is so beautiful Noelle! Seeing that sweet angel brightened my day! My prayers are still constantly with you and I'm sending my love.

Shan said...

My heart breaks for you having to leave without her. Thank goodness for doctors who see the unstability before them and find a way to calm you and Emily at the same time. Lucky for Emily that you are the mama who will ask and advocate. Much needed skills, and you already have them. Crying, venting, asking why... none of these things mean that you aren't doing your absolute best. I am amazed at your strength. You can do this.

You are doing this.

Heather said...

It's hard for me to believe that as pretty as that baby is on the outside she isn't just perfect on the inside too!!
You should feel so proud that she feels better when you are holding her!
I hope you do get a break soon from all this medical stress. I also hope that you get some very good news soon!

Mom on a Line said...

I am so very glad they let you hold Emily. It is so important for all of you, no matter whether you had been crying all morning or not. You all need it.

And you are right, you will find a balance once you are released from the hospital. We also didn't qualify for staying in the housing by the hospital because we lived too close. When our daughter was a newborn, we would drive home every night, sleep in our own bed, knowing if needed, the docs would call us in the middle of the night. I also called the nurses whenever I woke up at night as well.

I will be thinking of you during the MRI and hope it gives all of the information necessary.

Sending lots of heart hugs.

adrienzgirl said...

Funny how moms just know. Soon enough my dear, you will be just like your mom. You'll know just by the sound of Emily's voice that she needs you, or her sister, or her brother.

I believe in miracles, yes I do! I know you do as well. Remember in your moments of weakness that you have so many things to lean on. Your family, your faith, your friends and your eternal partner!

Love to you! Also, the doctors are right for sure. SHE IS BEAUTIFUL!

The Chicken's Consigliere said...

Congratulations Noelle and Jason-she is beautiful. The doctors have that part right. I know this part must be so hard. I would have taken offense to the "didn't want to deal with her today" comment as well. I have to back right now and read your other posts-I'm behind! Hang in there you, you two.