Monday, October 30, 2006

treats and sweets

Yesterday we took Hailey to Meme and Papa's to get her goodies. Every year Meme puts together a bucket of candy and a couple extras for all her grandchildren. This was Hailey first year of being able to enjoy the fun. We took her over in her costume and she was spoiled rotten. You can see below Papa even let her eat part of a Peep, that is until daddy said it was to much sugar and ate it himself :-)

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She only tolerates her costume for a short period of time before it becomes to hot. Saturday night she enjoyed a harvest party at the church, tonight there is a parade through town where all the kids wear their costume and walk through town before trick-or-treating. That should be fun to watch! We are trying to enjoy all the festivities we can!
A couple cute stories, Hailey's newest word is baby, and she says it really well. So now whenever she sees her friends, she rubs their heads and says "baby". It is sooo cute! Also, my mom watches her while I am work and taught her to say please. I have the most polite baby in town! Whenever she wants something now she say please - its sounds more like "peas". How do you say no to that?! And she just keeps repeating it until she gets what she wants ... peas, peas, peas!
As far as kisses go, Hailey does give them, but only on her terms, so many times we ask for kisses and don't get them. Well, last night we went to read to her before bed and she kept going back and forth between us giving free kisses. How can we resist such sweetness!
And on the walking front, I have tried off and on to walk with Hailey holding only one hand, but she has been pretty unsteady, this weekend starting Friday when we were out shopping she kept wanting to get down so I tried holding one hand and she did great. I have been practicing with her all weekend and she is becoming a pro. As soon as I let go she plops down on her butt, but I really think this might help give her the confidence she needs to get up and go!

Sunday, October 29, 2006

baby its cold outside!

Its officially cold! The wind is howling and shaking the window, but inside Hailey is staying warm!

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Friday, October 27, 2006

OT eval

This morning I received an email from Hailey's PT (physical therapist) reguarding her OT (occupational therapy) evaluation a couple weeks ago.
She said Hailey, given her adjusted age is preforming where she needs to be from a fine motor perspective. She did find some issues with some of the sensory areas, but we cannot qualify for OT therapy unless it is impacting her progress. Jen thinks it is impeding her progress/participation in PT. So it sounds like OT will consult with Jen to add some of those sensory activities into her PT treatment. So the good news is we are pretty much on track. She just needs a little extra support with the sensitivity to movement we are seeing.
So all in all I think that is good news ...
Now see my post from below about Hailey's PT appt yesterday and you can see a picture of her walking on the lite gait!
Next week is Hailey's 15 month appt and shots, yuck. I think I forgot to mention that when she was sick and was seen at the peds office she weighed in at a "big" 18lbs, 9oz. I am not sure of her length, but she is growing because her clothes aren't so long anymore.
She has started a picky phase, I never thought we would go through this because she LOVES food, but she has now started throwing it over the side of her highchair if she doesn't like it and it is food she has eaten before and loves. She also arches her head back against the highchair and pretends to scream. We are in trouble! She is so much fun though and I wouldn't trade these moments for anything!

Thursday, October 26, 2006

walk, walk, walk

Today was physical therapy, Hailey started off o.k., excited to see Jen and play with all the toys, but this time Jen decided to jump right in and try the lite gait. Jen has learned after working with Hailey for 3 months that Hailey doesn't mind letting us know how she feels and so we work through it. It used to be that when Hailey threw a fit we would give her time, now we just go for it and let her work through it. So we put her in the harness and started the treadmill. As always she started crying. Well, for those who know Hailey, she loves dogs, so we brought Buddy down and he settled her down enough to walk for 5 minutes pretty much all by herself. We then took her out and did other exercises till the end and then tried again, this time for 11 minutes. Now take note that Jen said Hailey has the best walk she has ever seen and if she just gained the confidence to go she would have no problems. Well, after impressing us all with her great form, this time she learned she can rely on the harness and drag her feet so doesn't have to walk, so Jen now has to move her legs in the walking motion. Hailey does what she wants and when she wants, meaning she will walk when she wants, but if we want to work with her or stand her up and tell her to come to us she plops back down. With that personality I think we could be in trouble :-)
Anyway, for all of you wondering what is a lite gait I finally was able to take a picture today. As you can see Hailey is not quite happy, but the theory is that she will get the motion of walking better than using a walker, because with that they don't get as many steps. Each week I do see an improvement. She balances like a pro, she can bend down pick up a toy and stand back up without losing her balance, she can even hold something heavy and play without losing her balance. Just for some reason she doesn't have enough confidence to just walk. The PT thinks it is her personality, plus some sensory issues. She said to keep in mind her adjusted age of 13 months as well. We are still waiting to hear back about the OT eval. Either way the PT thinks she will outgrow these issues, but why not get help now and have her overcome them early. Oh and before I post the picture, this week on top of still trying to overcome her cold, she is getting 3 teeth at once! Two on top and one on bottom! Oh the joys of growing up!!
Here is Hailey "walking" -

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Wednesday, October 25, 2006

The Preemie Experience

The Preemie Experience
by Sandra D Moore

The preemie experience is the shattering of all your dreams
For a normal, healthy delivery,
Of the ability to carry home a beautiful squirming bundle
After a short stay in the hospital.

It is lying there in your hospital room listening to
The happy sounds of whole families joined
Together by the birth of a grandchild, cousin, niece,
Or nephew, and knowing that your
Child is miles away and may not survive long enough
For you to see or simply touch.

It is that first glimpse of a skinny, scrawny, not much bigger
Than a Barbie doll child
And feeling, fear, awe, and joy for such a fragile soul.

It is sitting by your baby’s “bedside” day after day,
Week after week, month after month,
Alternating between the emotional high of
“Look, her eyes are open,” or “She’s crying!”
And the lows of “I’m sorry, Mrs. Moore.
Something has shown up in Lauren’s ultrasound,
”Or even “There is nothing we can do…"

”It is hearing the alarms go off for the twentieth time in less
Than fifteen minutes because your
Child’s heart rate keeps hitting zero.

It is watching children dying around you, wondering
if your child will be next.
It is hearing your child’s cry of distress as the nurses
Insert yet another IV and do another round of daily blood tests.
It is meeting other parents of children who are doing far better
And wondering, “Why me?”
And meeting parents of children who have just died,
And praising God for His mercy
To your child and feeling guilty because your child is alive
And someone else is grieving for theirs.

It is days of nightmarish testing and coping with less
Than positive results to the tests.
It is days of joy at seeing the first eyelash appear,
The child gain a whole ounce in one day,
And two bright shiny eyes look at you and into your soul,
And knowing that your child now recognizes you as Mama or Dada;
Or perhaps looks at you and does not see you at all…
It is that final hurdle before coming home!

It is the sorrow of waiting for the monitor company
Representative to show you what to do
If the alarm sounds when your child is choking,
Gasping for breath, or simply dying.

It is the joy of just being away from all those nurses
And tubes and wires and beeps, and
Walking into the nursery you hastily prepared because, after all,
The child wasn’t due for another three months!
It is thinking the nightmare is over…only to realize it still
Continues in the form of such acronyms as
PVL, RSV, BPD, CP and numerous others.

It is the final realization that those developmental delays
Have to be dealt with, that reflux is a normal and unfortunate
Occurrence in most preemies, that the constant fight to gain weight
Is in direct proportion to a preemie’s ability to do so.

It is watching a child struggle to pick up his or her head, sit, crawl, or walk.
It is witnessing only silence when the child should be babbling,
Because the child cannot hear.It is the mental images of a child
running and playing and communicating with others in a
Perfectly normal manner that are marred when you face years of therapy
In order to simply get the child to eat by himself or herself,
To talk or walk and then run.

The preemie experience is a journey…
A journey through your soul in order to find the faith and strength to cope,
A journey of the mind when you face the emotional weariness,
A journey of the heart…to accept that, no matter what,this child is yours,
And you will love this child no matter what.

I found this poem on another preemie blog and had to share. This really hits home on alot of points and explains the experience all too well.

Here is Hailey at this time last year. Notice the HUGE jeans, they were 0-3 months and I couldn't wait for her to fit into them :-)

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Sunday, October 22, 2006

finally - a pumpkin!

Well, Hailey still has a runny nose and slight cough, but is defintely starting to feel better. Last weekend, after planning this for over a month, we were supposed to go apple picking and to get a pumpkin with Tim's family to get all the cousins together, but since Hailey was sick we missed out. So this weekend we set out to find Hailey a pumkin. I figure we could not let this season go by without getting at least a picture of her with one :-)
So on our way to Starbucks we saw a sign for pumpkins and followed it to a little school that was selling pumpkins. So we finally got our picture and we even brought a little pumpkin home for her. She wanted to hold it in her car seat the whole way home and if I took it away she cried.
Anyway, here is Hailey's pumpkin picture!

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I think she wanted to take that one home!

Friday, October 20, 2006

Dr. Hailey is in the house!

Well, Hailey is still sick, but at least now its draining, which must mean she is on the road to recovery. Also, mommy finally put her back in her crib last night. Ever since last Friday she has either slept with us or in her pack and play so I could keep her propped up and keep an eye on her. Really, last Friday scared me because she never cried and just kept dry heaving and bringing junk up all night before I heard her whimper around 4am. I just felt so bad that she suffered for that long so I think keeping her with me has been more for my benefit :-)
Anyway, when she was born my brother bought her Dr. scrubs at Hopkins, well, finally after 15 months they fit and just in time for halloween. Here is a picture of the front/back. And the last picture was taken yesterday, I just thought it was a great pix (minus her poor raw nose)!


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Wednesday, October 18, 2006

1 step back

For those of you with preemies you will appreciate the title of my last two posts. The famous NICU quote, “two steps forward, one step back”. Well, when I wrote my last post that is the first thing that came to mind so I thought someone would appreciate it. Little did I know at the time that my next post would be one step back.
A couple days after her first steps Hailey has caught a bad bug, I mean a really bad bug. She has been so sick she has hardly moved out of my arms let alone walk. I have been sick with a bad cold/bronchitis for 10 days now and I am just finally getting better. So Friday when I started hearing rattling in her chest I figured she caught my cold. Little did I know that this would be a double-header as I was woken up around 4am on Saturday to Hailey gagging and vomiting. I originally thought she was choking and bringing up the mucus from the cold, but come to find out it was the flu. We took her the ER because she was vomiting every 15 minutes and all that was coming up was yellow gunk. Sadly, all we could do was hold her and let it take its course. The flu lasted through Sunday and by Monday she was a limp - no smiles, no energy, just wanted to be held. Finally, yesterday the fever broke and she started eating again, but the cold is so bad she is choking on the mucus when she coughs and can't catch her breathe. Again the ped said there is nothing they can do.
On top of it all Tim and I haven’t felt the best so we made for a great threesome! I am hoping today is a better day. I had to go to work so daddy is home with her this morning and then we will switch off. She got up with me as I got ready for work and ate some toast so that is a good sign. Her congestion was still bad, but I think she is learning to cope. I hope she can fight this off better than I did. 10 days is a LONG time to be sick and I don't know how many more sleepless nights I can survive :-) Actually last night was a little better. I have her in the pack and play beside my bed so I can watch her. I didn't sleep well because I was trying to keep her upright for the congestion and this baby moves, but she only woke up once around 4am and was up for about 45 minutes. The problem is I had to get up at 5:45am for the day!
On a side note, last night I was feeding her dinner and she started singing. I got it on video on my phone and will try to get it so I can post it. She was saying words, but added a tune to it. I couldn’t get over it …it was so cute!!!!!
Please pray my little baby starts feeling better soon so we can get on with the steps forward!

Here is a picture of her a couple Sunday's ago with her Dooda - notice the ponytail I desperately tried to pull together enough hair!

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Wednesday, October 11, 2006

2 steps forward

Hailey took her first steps today!!!!! YEAH! I came to pick up Hailey after work at my parents house and sat down to talk to my dad for a few minutes. In the meantime Hailey was hanging onto the table in my dad's office and out of the corner of his eye he saw her take two steps, but we weren't sure if it was real. So my mom picks her up and she stands like a pro and I start calling for her and sure enough she took two steps toward me - then she didn't even fall just stood there looking at me!!!! I couldn't believe my eyes! I have to admit I started crying because she has been so close to walking forever, but I just didn't expect it at that moment.
That of course is the major PT goal, but also it is a goal for her to stand up in the middle of the floor not holding anything and sure enough she did that tonight as well. We were at my friend Val's house and Hailey was playing with Wyatt when all of the sudden she just stands herself up in the middle of the floor!!!!
I think she is gaining confidence more and more. Soon there will be no stopping her. Daddy has been working 3-11pm so he wasn't able to see it. I can't wait for her to show off her new skill to daddy!

Monday, October 09, 2006