Day 41

She weighed in at 3 pounds and 3 ounces this morning. 30 more grams to go and she'll start wearing clothes and proving whether or not she can maintain her own temperature. Still having acid reflux issues, but the Zantac is helping. The doctor is waiting to lower her oxygen support until she grows out of the reflux, since she tends to hold her breath because of it.

Here she is, admiring her cat picture once again, but in her puppy dog swaddle blanket.

Day 40

A good day for Emily, but no changes to share. She's just working on growing.

Day 39

The nurse gave Emily a picture of a cat to look at when she's awake. The prayer quilt was a gift from good friends, Dave and Dani, in Southern California.

No changes for Emily today. She's still battling acid reflux, but continues to eat well despite the discomfort. She lost 10 grams, but is still over three pounds.

Day 38

Big changes today for Emily. She hit three pounds and a half ounce (hey, even at this weight, every part of an ounce counts!) She also got moved out of the giraffe isolette into a different style bed. Her acid reflux has been so bad with the larger feedings she is eating and this new bed allows her head to be higher than the giraffe allowed. She also has grown enough that she is in the next size up of diapers. I looked at her this morning, realizing how much she has grown, and for a moment I was actually sad that she is getting so big.

Emily had more visitors today. Walt and Hope from California surprised us today. They get the award for traveling the longest distance!

Day 36

Again, no big changes to share. She's eating, she's growing, she still sometimes holds her breath. She's doing everything a preemie her size and age should be doing. And if I do say so myself, the cutest peanut I have ever seen. She weighed 2 pounds 14 ounces, so still hasn't hit that three pound mark yet.

Days 34 &35

Things are going well, but there aren't many changes to report. She lost a little weight yesterday, then gained a little of it back today, so she didn't quite hit the three pound mark. The nurses mentioned that they will soon start putting clothes on Emily, of course hospital clothes preventing the need for me to run out and purchase anymore preemie clothing. Emily is eating her full feeds with increased calories and protein. However, she still hasn't been able to stay on reduced oxygen support from the nasal cannula. She can tolerate different lengths of time with reduced support, but eventually gets worn out and it needs to be turned back up.

So close

to three pounds. She weighed 2 pounds and 15 ounces. The nurse was so shocked by her overnight weight gain that she weighed Emily twice. And she's just a few ml short of full feedings, but as her weight goes up, so does her full feedings, so we'll be chasing that goal for awhile.

32 days

Emily's awake a lot more these days. She's weighing 2 pounds and 11 ounces and is 14 and 1/2 inches long. Hopefully by this weekend we'll reach the 3 pound mark. She is almost up to full feedings so they began adding extra calories and protein to her diet. Hopefully that will speed up the weight gain.

Day 31

Emily's head ultrasound yesterday went well. They'll do one more before she gets discharged. She also had her first eye exam today. At this point, the doctor who looked at her eyes did not see anything that suggested an eye problem, but the blood vessels are still immature so they'll check again in two weeks.

After Nadia passed, the NICU arranged to have a hand and foot casting done and I was able to pick them up today. One has her hand and foot, the other just her hand but has a picture frame as well. Another beautiful treasure to help us remember that precious baby girl.

Day 30

Other than increasing her feedings and continuing to turn down the amount of support from the nasal cannula, there isn't much new news. She's weighing in at just a little over 2 1/2 pounds. She still requires a liter of support from the cannula. 1/2 L wasn't working, so they settled for 3/4 L. It works for awhile, and then Emily just gets tired and they have to turn it back up.

Emily did have her first visitor today outside family. Thanks Miss Andrea for coming to meet her!

Day 29

I came home this weekend, so no new pictures today.

Not that much to report today. Emily is still making progress with her feedings, up to 8 ml every three hours. Her goal is to build up to about 25 ml. She's still on the nasal cannula with 1 liter of support and they are trying to wean her down to 1/2 liter. On Monday she'll have a brain ultrasound just to check on the bleeding and her vision test is coming up. Fingers crossed.

28 days

It's hard to believe that the girls were born four weeks ago today.

Emily had a fairly good night last night. Her biggest change was that Nurse Merri added a bow to make her look more girly girl. But Merri also took the feeding tube out of her mouth and put it in through her nose. That way Emily has more room in her mouth to move her tongue around and work on sucking her pacifier. Emily was also having some acid reflux issues, which are better now. It just may be that the feeding tube was irritating her throat a little. The doctor tried reducing the support Emily was getting from the cannula, but that didn't go so well, so it was put back to where it was. They'll try again tomorrow.

Day 27

Emily's great day was followed by a great night. The respiratory therapist took her off the sipap during her bath, and Emily did really well. So the decision was made to put her back on the nasal cannula, which are the nose prongs.

Emily had a second bald spot appear on the back of the head. This one has a different look than the first one that appeared, so we're thinking that the new one is just from rubbing her head against the pillow. Just in case they are putting a fungal cream on both spots and she now has a special gel pillow for extra comfort.

Hiccups

Taking matters into her own hands

Early this morning, Emily decided that she had had enough with being on the ventilator and pulled it out herself. Now she's back on the sipap and doing really well with it. Her heart rate is down and she's tolerating her feeds better. Best day we've had in a week.

25 days

Today seems to be a better day for Emily. She just started back on feeds, right now 1/4 of a tablespoon every three hours. Her morning Xray showed that her lungs were a little hazy, so she is getting a diuretic that will help her get out some of that fluid. They'll Xray again tomorrow morning, if her lungs look clearer, then they will make another attempt at taking her off the vent and putting her back on sipap. Her nurses have started swaddling her, which seems to make her really content. And the dermatologist determined that the spot on her head was nothing to worry about, but it may not grow hair. It's okay, it is the perfect spot for a ponytail.

Some setbacks...

Emily had a rough night last night. She had some vomiting, and with a feeding tube and a ventilator down her throat, she was very uncomfortable. She was pretty agitated this morning, so they gave her a drug to calm her down. She's also having some trouble with bowel movements. The doctors THINK that it's because of the morphine. Therefore, they stopped her feedings (again) and she's had a couple Xrays today to see if things are moving along the way they should. The doctors won't even consider attempting to take her off the vent until these issues are taken care of. There's also something on the back of her scalp that a dermatologist will be looking at this evening. It may just be a birth mark, but it doesn't look typical so they just want to be sure.

23 days

As of morning rounds, not a lot has changed for Emily today. It is possible that they may make a second attempt at taking her off the vent. Her settings are still a little high (meaning it is still doing a lot of the breathing for her), so it is dependent on how her afternoon goes. But two different staff members have commented on how much bigger she looks.

You might notice in a lot of the pictures she has a cloth over, or near her head. It helps protect her immature eyes from the bright light. but this cuddle cloth has a more important purpose. Every day I wear one of these cuddle cloths and then leave it with her at night. The idea is that my "scent" transfers to the cloth and it comforts her while I'm away. I don't get to do a lot to take care of her, so it's these little things that become important.

Day 22

Not too much to report this evening. Emily is still on the ventilator, but her feeds have increased to every three hours. The nurses do cares on her every three hours as well. This is when they change her diaper, take her temp, do oral care, and change her position. I really like this time because I do get to help out and she's usually awake during it. She's still requiring small doses of morphine just before it. I think moving her around is still a little painful for her. But when she's resting she looks pretty comfortable, especially when she gets to have her pacifier.

21 Days

Hard to believe the girls were born three weeks ago.

Emily came off the ventilator today, but after thirty minutes they put her back on it. She just isn't able to keep up with the breathing as of yet. And honestly, if my ribs were spread open three days ago, I wouldn't feel like taking a deep breath either. To encourage her to breathe, they have put her on a drug that opens the airways and restarted her on caffeine. If all goes well through the night, they'll try taking her off the vent again tomorrow. They did restart her on feedings again, but small doses for now given every twelve hours.

The diaper photo is a little corny, but the small one is the one Emily wears (and it's really too big and has to be folded down) next to a regular newborn diaper. Just another way to show how small the little peanut truly is. The other photos are from Now I Lay Me Down to Sleep, but of Emily.

A better day

As you can see by the photo, Emily is still a little puffy following her surgery, especially around the eyes. However, it was a better day for her. With a little extra fluid and a blood transfusion, her heart rate and blood pressure had improved by Thursday evening. So, today they have been slowly weaning her off the ventilator and the blood pressure medications. She did get a dose of morphine this morning, but she's able to go longer between doses. Once she's off the ventilator, she will more than likely go back on the sipap machine, and then hopefully do well enough on that that they will try a nasal cannula soon. Doctors expect her to make quick progress now that the PDA valve is closed. Let's hope so. She weighed in at 2 pounds and 7 ounces this morning, but I don't know how much of that is the extra fluid she has in her body right now.

Now I Lay Me Down To Sleep

This foundation is one that I hope no one else ever has to use, but I am very thankful for the photographer they sent to capture Nadia as part of our family. The pictures arrived today, and as difficult as it was, I am very glad that I have her in photographs.

Two steps forward, one step back

But in this case, it feels like one step forward and two steps back.
Change of shifts, & new doctor decides that he wanted to do the echo on Emily's heart. The Xray showed that not only did the valve not close, but that it was bigger. I was told this at 8:00 P.M. and by 11:00 the procedure was done and she was resting comfortably. 12 hours later, and her blood pressure is too low, her heart rate is high, she's running a bit of a fever, she had to go back on the vent for the procedure, and they stopped the feedings as well. She's getting extra fluid, on a blood pressure med called dopamine, and is on morphine to help the pain. Not ideal, but I've been reassured by the doctor that this is all considered normal after open chest surgery. Her scar is on her back by the left shoulder. It looks gigantic on her tiny body, but as she grows into an adult I'm sure it will look extremely small.

Day 17

The parent mentor group left toys for both girls. So many people have commented they can't believe how small Emily is, so here is another photo for a reference.

The exception, not the rule...

This is how her doctor described Emily today at our two week care conference. Her brain ultrasound has showed that the bleeding on her left side had stopped, never going beyond a grade 1. The echo of her heart was cancelled because she wasn't showing any symptoms of the valve still being open. She's eating well for her tiny size, and even though she's on the sipap machine to help her keep her lungs open, we were reminded how it wasn't that long ago that doctors would have kept any baby her size on the ventilator. The frightening part of our conversation with her care team is how that problems we face today are not the big issue. Everything she faces today will be cured. She will breathe on her own, she will eat full amounts, she will one day be bigger. It doesn't mean that there won't be life long problems that will show up as she grows. She can look different because she was born too early. She's at high risk for CP, vision problems, asthma, RSV. She'll be our bubble kid because we'll have to be careful about what we expose her to as an infant/toddler. The doctors are optimistic in Emily's case, just because she has been doing so well for her size and age, but being born at 27 weeks and 1 pound, 10 ounces, she'll be at high risk for all of this. She'll soon start seeing an occupational therapist that will help her learn how to suck and eat. She'll soon start having eye exams. She'll soon have a team watching her to see how she's meeting developmental milestones. There is a lot of good news, but it was a reminder that this journey is going to go on long after we leave the NICU.

15 days old

Emily passed the two pound mark, but only for the day. By the next morning, she was down to 1 pound, 15 ounces.

Kangaroo Care

Holding a preemie skin to skin, or kangaroo care, helps regulate not only their breathing, but their body temperature as well. Depending on the type of day Emily is having, we can hold her once or twice a day for an hour at a time. Here is Aaron's first snuggle with Emily on June 26th.

Emily...

After the most difficult week of our lives, Emily is the reason that we move forward. Although she's had to go back on the SiPap, a machine that helps keep her lungs open and breathing easier, her team of doctors and nurses are amazed at how strong and feisty she can be! She's now up to 1 pound and 14 ounces and getting very small doses of breast milk every three hours. Emily loves to sleep on her stomach and comforts herself by holding her hands up to her face.

WIth Nadia as her guardian angel, Emily's goal is to grow, grow, grow.

Here she is at two weeks old.

Goodbye...

Nadia Erin Hughston
June 20, 2009 - June 28, 2009

What Makes A Mother

I thought of you and closed my eyes
And prayed to God today
I asked "What makes a Mother?"
And I know I heard him say
A Mother has a baby
This we know is true
But, God, can you be a mother
When your baby's not with you?

Yes, you can he replied
With confidence in his voice
I give many women babies
When they leave it is not their choice
Some I send for a lifetime
And others for the day
And some I send to feel your womb
But there's no need to stay.

I just don't understand this God
I want my baby here

He took a breath
and cleared his throat
And then I saw a tear
I wish I could show you
What your child is doing today
If you could see your child smile
With other children and say
"We go to earth to learn our lessons
of love and life and fear
My mommy loved me so much
I got to come straight here
I feel so lucky to have a Mom who had so much love for me
I learned my lessons very quickly
My Mommy set me free.

I miss my Mommy oh so much
But I visit her each day
When she goes to sleep
On her pillow is where I lay
I stroke her hair and kiss her cheek
And whisper in her ear
Mommy don't be sad today
I'm your baby and I am here"

So you see my dear sweet one
Your children are okay
Your babies are here in My home
And this is where they'll stay
They'll wait for you with Me
Until your lessons are through
And on the day you come home
they'll be at the gates for you

So now you see
What makes a Mother
It's the feeling in your heart
It's the love you had so much of
Right from the very start
Though some on earth
May not realize
Until their time is done
Remember all the love you have
And know that you are
A Special Mom

Author Unknown