Posts tagged ‘Private Room’

Now I Lay Me Down to Sleep

On December 4, 2009 we learned of Hailey’s fatal diagnosis, and we were moved to a private room where we were able to spend every minute with Hailey and truly enjoy her. We received a lot of information that day and had a lot of support services offered to us. (Talk about information overload and feeling overwhelmed!)  The palliative care nurse assigned to us told us that she could pretty much make anything happen for Hailey that we wanted – and yes, the idea of sneaking Opie into the hospital was discussed as a very realistic possibility. 🙂 But thankfully we didn’t have to do that…but they did order a birthday cake for us on her 1 week birthday 🙂

One of the pamphlets and services that was offered to us was something called “Now I Lay Me Down to Sleep.” Now let me tell you, as a new mother who just learned that her baby had a fatal disorder, I was only able to read the title of organization before bursting into tears. The name was the saddest thing I ever I thought to myself… Thankfully the palliative care nurse explained the mission statement of the organization since I couldn’t read it on my own: Click here to keep reading!


March 14, 2010 at 3:07 PM 1 comment

Healing Touch

Have you ever heard the phrase ‘healing touch’? It suggests that physical touch or physical contact can heal. Hailey’s life taught me the truth behind this common phrase.

In the first days of Hailey’s life, she underwent surgery,  she had a contraption put on her stomach, she was poked and prodded everywhere with needles as doctors and nurses tried to find good veins for putting in tubes and IVs and drew blood and so on,  she had a blood transfusion, she bruised, she swelled, she would have experienced pain had she not been under the affects of morphine. Obviously, no one wants this kind of life for their child. (But I will say, this life, is better than no life at all… and as you will see in Hailey’s case, this can be turned around with a little healing touch, and faith). (more…)

March 9, 2010 at 5:56 PM Leave a comment

About Hailey Monday, December 7, 2009 at 11:54am

Today Hailey is 6 days old. She will have her 1 week birthday tomorrow – we’re working on planning a little party for her.

Here’s a little description of our Hailey. She has:
-a fine head of dark hair
-light blonde fine eye lashes and eyebrows
-big baby blue eyes
-a cute little round nose
-small pursed lips
-tiny little elf ears
-i tihnk she has big feet but no one else does 🙂
-most ppl say she looks like me with the small features (besides my nose :P) and elf ears

Here are some of her likes and accomplishments:
-She likes to hold your finger in her right hand
-She loves sucking on fingers
-Her favorite thing is one finger in her mouth and one in her hand
-She likes her purple paci
-She likes looking at you when you talk
-She tends to sleep with her eyes open
-When you hold her and she’s sleeping she’ll peek at you with one eye every now and then – it’s like she doesn’t want to miss anything
-Recently she started reaching her right hand up toward you – she ‘punched’ me in the nose yesterday and ‘punched’ her stuffed giraffe in her nose
-I think she likes feeling her soft giraffe when we run her hand over it
-She watched Favre play for the first time last night – bad first game to see
-I read her her first bedtime story last night – i think she liked it
-Her daddy bought her her first bouquet of flowers a couple of days ago that she got to see and smell
-She took her first bottle of breast milk a few days ago also – we’re still working on feeding her
-She hasn’t had any breathing attacks /apnea in several days
-When she’s fussy she likes being held and rocked or walked around and rocked, being swaddled tightly, and sucking on a finger or paci
-She has a great flowery baby smell to her that I could just breathe in all day long – love it!
-She had her first professional photos taken of her Saturday night

More info about her condition…
-She is only on an IV and oxygen (just in case)
-Her stomach bandage was changed today and it looks pretty good – we’re working today trying to figure out a long term solution for it so that she’s comfortable and we can take her home
-She’s only on morphine when we feel like she’s in a lot of pain – she wasn’t on any for a couple of days but starting last night she had some more
-So at this point she’s doing good – we’re trying to figure out her stomach situation, see if we can take her off her IV and work on bottle feeding her if we can otherwise we may have to use a feeding tube when we go home, if we get to take her home, the hospital will arrange for hospice to come and work with us at our house to take care of her… so we’ll have big decisions to make later today and see what happens next…

We’re thankful for everyone’s thoughts and prayers. I’m especially glad that we can keep everyone up to date with the Internet and Facebook since we live to so far away from family and friends. Even if Hailey can’t meet our friends and family we at least want to share her with you all so you can get to know her a little bit from these updates and photos.

January 11, 2010 at 7:40 PM Leave a comment

Hailey’s diagnosis Friday, December 4, 2009 at 5:22pm

Before surgery this morning we received some important test results back. I’m not going to go into details, but the tests show that Hailey has an incurable, untreatable genetic disorder that is lethal. This means that we have no idea how much time she has here with us – could be hours, days, weeks, maybe months. Therefore we canceled her surgery and are doing whatever we can to keep her comfortable and limit any pain to her as much as possible. She’s in a private room with us now and we have family visiting. We’re able to hold her now, give her kisses, she’s dressed in her clothes, and I can try to feed her at some point – so we’re trying to do what we can to make the most of our time with her.

I won’t go into much detail but we are obviously heart broken, but we have a strong faith in God that this is all His plan… It brings so much comfort to know how much God loves her and us and He’ll lead us through this difficult time.

Please pray for Hailey to not be in any pain and have the best time here that she can.

January 11, 2010 at 7:39 PM Leave a comment


"God gives, God takes. God's name be ever blessed." ~Job 1:21

In Loving Memory of Hailey Marie

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