Wednesday, April 20, 2011

HOME AT LAST!!!!

Emma has upgraded to wireless!!

We finally get to dress her in her very own clothes. :)

The rainy drive home, she slept the whole way.

In her nursery at last.

"Nurse Julie" getting all her evening medications ready. (Don't worry... those are just syringes to put into her feeding tube, not needles for shots!)

Shawn and I have had permanent smiles all day long. We have loved having Emma home with us ALL DAY (well, we got discharged from Primary Children's at about noon). Yes, now the hard part of taking the night shifts begins, but bring it on. Luckily my mom is staying with us for a few days to help. I've got lots of follow-up appointments scheduled with each of Emma's many doctors so that they can continue to monitor her progress, meanwhile we'll just keep doing what we have been doing pretty much -minus the hospital! Unfortunately we still can't have anyone under 18 years old hold her yet since it's still RSV season and we have to be VERY careful that she doesn't get sick, especially before her shunt surgery which may or may not be in a couple of weeks. Because of all that our sweet girl has been through these last four weeks and all of her internal problems (heart, lungs, brain fluid, spine, etc.) she is very susceptible to getting sick. The last thing we want is for her to head right back to the hospital.

Well, I will still probably post when we find out when her surgery will be or if there are any other major changes... and of course to share extra cute pictures. Otherwise, this will probably be the last of the frequent updates. Once again, we cannot thank everyone enough for your unending love, prayers, and support!!

Sunday, April 17, 2011

"Look Ma, no tube!"

RAWRRR!!!

Cute as a button!

Emma got to take a little break from her feeding tube being in her nose (and throat, and stomach). I got to learn how to put a new tube in... pretty crazy! Yes, she really hated it but I can't say blame her. I wish she would eat all her food so we could just leave it out, at least she's getting a little better at it.

So fun to see here cute little face with no tube. Hopefully she won't need it for too much longer.



Saturday, April 16, 2011

We Wish We Knew!

When is she coming home? Is she getting a shunt? When is she going to get a shunt? Will they send her home with a feeding tube? These are the questions that we seem to get asked everyday. We wish we knew! Heck...we wish the doctors knew! What we do know is that her head circumference is half a centimeter larger. The results from the head ultrasound showed that her ventricles are slightly enlarged, but not enlarged enough to put in a shunt yet. The neurosurgeons will hopefully have more news for us on Monday. If they wait to do the shunt and if she continues to gain weight they might send her home at the end of next week. Everyone cross your fingers!
"It's fun to be me!"

It is so hard to leave her at night, especially when she is wide awake and being such a good girl. We resorted to using her musical light-up toy to entertain her while we snuck away so she didn't feel like she was being ditched. It was still hard to leave!

video

Wednesday, April 13, 2011

And the Waiting Continues

Apparently the conference of doctors today was only for the cardiologists rather that all of Emma's doctors. They must not have decided on doing anything different with her heart right now than to wait until her hydrocephalus is under control, they never came and gave me more news. Friday she'll get another head ultrasound done.

Emma LOVED to hear Grandpa Vernon whistle like a little birdie.

Great big smiles for grandpa.

Rub a dub dub, cute girl in a tub!

All clean and warm.

A priceless snuggle moment. :)

Tuesday, April 12, 2011

Her heart steps out of the spotlight.

The doctors did another chest x-ray this morning and Emma's lungs look clearer, yay! They said that although her heart is still a little large from having so much blood pumping through it, it is functioning well and is not a major concern at this point. The pressure that may be building up in her head is what they will need to address first (her head circumference is the same as it was yesterday though, 36 cm). Tomorrow morning Emma's case will be presented in a conference where all the different doctors, surgeons, and specialists are there together and can discuss the best options. I am really looking forward to finding out what they say. Meanwhile, we're still working on the whole eating thing. The poor girl just can't seem to quite get the hang of it.

"Dad's finger's are my favorite!"

WIDE awake.

Now that's one proud daddy.

"YIKES! Those whiskers are scary dad!"

Monday, April 11, 2011

Emma's first "up-doo"

Not much happened today... enjoy the picture and video. :)

"Somehow the windy weather got into the NICU... just look at my hair!!"

video

Sunday, April 10, 2011

Eating Like A Big Girl

Sunday, April 10th, 2011

No new news today. I just can't believe how much I love to look at her and hold her close. Being a mother so far is better than I even imagined. It is extremely hard to be away from my sweet baby girl for so many hours at a time, not knowing when she's crying or needing her mommy to hold her and sing to her. I am just so glad that she is getting such good care and that for all the problems we're facing right now, there is a good solution for each one. I know she'll pull through it all.

I just can't get enough of how she sleeps with her mouth open!

Eating like such a big girl! She still gets exhausted usually before finishing a bottle (55 ml.), but she sure does work hard at it!


Not so good news

Saturday, April 9th, 2011

We learned that since the fluid is beginning to build up in Emma's brain, the doctors say that she'll probably need a to have a shunt put in at the end of this week or the beginning of next week. We were REALLY not wanting her to have to have a shunt... But are grateful that we have that option to keep the fluid from building up pressure in her brain.

She's not just kicking her feet in this picture, she's holding one foot up in the air waiting for daddy to rub it... just the way she did when she was in my tummy!! This was their favorite game to play at bedtime while I was pregnant, she'd push out her foot and daddy would 'get it' then after a minute she'd pull it back and push it out again. It was SO cute to see them play the same game again!! It's amazing to think that she was in my belly just days ago.

That adorable foot which is now so much more fun and kissable! :)

All snug as a bug.

Friday, April 8, 2011

Friday, April 8th, 2011

Emma now weighs a hefty 7 lbs. 1-1/2 oz... Her birth weight was 7 lbs. 6 oz., getting closer! She's gotten 66% of her food by mouth in the last 24 hours. The docs increased her calories to 27 (kilo calories per ounce) so that she can gain more weight and stamina. The head ultrasound showed that her ventricles are a little larger, neurology is just going to keep an eye on it for now. She got the 13 stitches removed from her back. A lot of them were ingrown and they bled when the doc pulled them out, she was NOT a happy camper. It's hard to watch such a tiny person go through so much, I often wish I could just take her place. Cardiology will do another heart ultrasound on Monday to see what the next step is for her heart.

Poor Shawn got sick yesterday with a sore throat. It's been really hard on him to not be able to be with Emma, and he is worried about getting me sick too. His girls sure love and miss him.


Look who LOVES to sleep... maybe even as much as mommy does!
(I get such a kick out of the peanut butter and jelly sandwich blanket on her bed)



Yet another bath. :)
Thursday, April 7th, 2011

Emma's phosphorus levels are coming down. They'll leave her catheter in for another day or two in order to better evaluate her kidney function. A low dose of an antibiotic has been added to her medicines to prevent a urinary tract infection.

Unfortunately, the doctor says that he expects that Emma will need to be here for at least another week since she still struggles to eat by mouth. :( But who knows... she drank two bottles this evening!

It's so fun to wear clothes!!


Wednesday, April 6th 2011

Emma got to lay on her back for the very first time... for my 27th birthday! :) Her back is healing really well and she should get her stitches out on Friday. Her weight is still slowly increasing. The doctor says we can try bottle feeding again even though her breathing is still a little fast. Her chest x-rays from this morning showed that her lungs are worse - they have more fluid in them because if the hole in her heart. The Lasix medicine isn't working well enough so they are going to add another fluid-decreasing medicine to see if it will help.

It's been one of our harder days, but I appreciate all the birthday wishes and your continuing prayers and support.



What more could I want on my birthday than a wonderful husband, awesome family and friends, and snuggles from my very own daughter!!!

Tuesday, April 5, 2011

The doctors did a kidney ultrasound today and they are back to normal! They'll leave a catheter in for 24 hours (rather than just catheterizing her once a day) to better assess how her bladder is doing. The little stinker Miss. Emma yanked her feeding tube out of her nose 5 times today before 11:00 am and once again later in the afternoon! It's certainly NO fun getting it put back in, I wish she'd stop it. The occupational therapist checked her range of motion again today and said that in the 15 years she's been doing this, she's never seen a baby with a defect where Emma's is be able to move so much - what a miracle!

Her cheek is all red because she rips off her feeding tube so much :(

Streeeetch

Eating is HARD WORK!

Stop! In the name of love...

Monday, April 4, 2011

Emma 4/4/11 Update

Emma's lungs look better today, but her blood pressure going to her lungs is still high from the hole in her heart. They will be doing another chest x-ray on Wednesday and then she will see the cardiologist again. The kidney specialists said they weren't too worried about the high phosphorus, but that they will keep checking on her and and doing ultrasounds of her kidneys to make sure they stay looking good.

Look, a big mouth just like mine!

Whatcha' looking at?

Daddy's turn for bath night.

Sunday, April 3, 2011

Let's Try Again

With Emma's breathing still high this morning, we were sure that it would be another day where we couldn't hold her and she would have to feed by tube. Fortunately the doctors and nurses decided to try and see if us holding her and letting her feed by mouth would help calm her breathing. Thankfully holding her was exactly what she needed. They also decided to increase the amount that she is fed and to fortify her milk with more calories and calcium to help her start gaining weight. Her phosphorus levels are still dropping and are almost back to normal. Emma was a lot of fun today and it was nice to feel like we were able to have such an impact in her progress.
Emma loves to sit upright. She stayed awake like this for almost half an hour. So fun!!!

Saturday, April 2, 2011

One Step Forward...Three Steps Back

Today was a tough day! Emma pulled her feeding tube all the way out this morning during one of her feedings and the nurse didn't notice for a long time. The nurse told us that she was crying really hard and by the time she got the feeding tube back in and got her caught up on her food Emma was exhausted. By the time we arrived to see her, she was sleeping and the nurse said we shouldn't bother her. Luckily we were just in time to talk to her group of doctors who were making their rounds. They increased her medicine to help her breathing and heart issues in hopes that we can start feeding her by mouth again. The one good thing they talked about was that her head size is not increasing. Her phosphorus levels are coming down a little, but are still too high. Later this evening I went in to see if I could hold her for a while, but when I got there the nurse explained that her fast breathing is starting to take its toll on her oxygen levels. Her medicine should help fix that, but the higher dose hasn't kicked in yet. They have put the oxygen tubes back on her nose with just puffs of room air to see if they can increase her oxygen levels. Hopefully tomorrow will be a good day!!! It is not natural for a mother to be told that she can't hold or touch her baby.

This is how separated from her I felt today

At least she is stinkin' cute!

Friday, April 1, 2011

Who's driving this crazy bus anyway...Emma is!

Having a baby in the NICU is like being on a wild bus ride with the baby as the driver. You never know where she is going to go next and you have no control. Today some of the good turns she made were:
  • She got her IV out. Hooray for no more swollen limbs and many many pokes!
  • Her head diameter has not increased.
  • The hole in the upper part of her heart has closed on its own.
  • She graduated to a crib which means she is able to maintain her body temperature and she has less doctors monitoring her progress (fewer tests.)
Some of the bad turns were:
  • She has high phosphorus levels and they don't know why. We are still unsure what that means.
  • The hole in the bottom portion of her heart is still the same size and continues to cause her to breathe too fast to feed by mouth. The doctors will decide in the morning what to do next.

The Fam

She loves to be held by daddy

She loves to look at mommy and hear her sing

Big girl bed!

This was taken close to 11:00 pm and we finally decided to say goodnight. It's hard to leave that precious little face!