Little Elizabeth Grace

Why We Walk

2011-03-28T20:56:00.003-04:00

Once again it is March for Babies time. Each year we walk to raise money to help save babies; we walk with hope that one day all babies will be born healthy.

Please consider helping us this year with a donation or even better yet, walk with us!!! You can do that by clicking HERE or on the link to the right of the page. Your donation will help the March of Dimes continue to develop more life saving research. Without treatments and medication developed my the March of Dimes Elizabeth would not have survived; there are still many babies who don't. Prematurity is the leading cause of infant death in the US.

Make an on-line slideshow at www.OneTrueMedia.com

Happy 6th Birthday Ava!

2011-01-26T20:25:00.003-05:00

Where does the time go? I think that may be the question asked of every mother on every birthday. Ava has grown from a squishy baby to a beautiful young lady. She is an amazing little girl. We are so lucky to have her as our daughter.

Christmas Fun

2011-01-03T20:54:00.004-05:00

We had a wonderful Christmas this year, and hope you did too. We traveled for the first time since Elizabeth was born and it was both great and the other end of it was all the packing and driving. We were able to see almost all of our family on both sides over the course of the holiday season.

Elizabeth was in her very first Christmas program where she "starred" as a little lamb. She later was a little piggy in the church program. Ava was an angle for the church program and also had a school program.

Here to a healthy and happy 2011!!

New Post Soon?

2010-12-09T15:18:00.005-05:00

Life here has been CRAZY! In a good way. We have been able to stay clear of any major illnesses. Elizabeth had her first non asthma trip to the ER- 6 stitches in her forehead. She was a champ. We then returned a month later to have that same spot glued back together after she took a screen door directly to the forehead.

Elizabeth has statred and loves preschool, Ava is in kindergarten loves it, and is doing almost all 1st grade work right now- we are starting to feel nervous at what will be a head for this little smartie. We also made it to San Juan, Puerto Rico in November, we loved the break from the icky November weather here.

While I find time to actually blog, here are a few pictures

6 stiches

Cinderella and Jasmin on Halloween

Old San Juan

Watch tower at one of the forts in San Juan

New Look

2010-08-03T14:59:00.006-04:00

As you can tell I have changed the blog background. Elizabeth LOVES red. In her opinion, if it is red, it is better. The previous background was giving me problems, so I thought I would change things around to better reflect Elizabeth's style- RED and GLITTERY (please disregard the fruit).

You might also note I am in the slow (very very slow) process of copying my CarePage postings over to the blog- so April-July 2007 are in along with some pictures.

Here are a few pictures of a recent zoo trip, notice Elizabeth in red.

Chocolate ice cream cone + do it your self face painting = We are pretty sure she was the filthiest kid in the whole zoo (the dress came clean after 7 washes)

Ava's Dance Recital

2010-06-24T14:21:00.001-04:00

Oops! When checking my blog the other day I noticed that first this original post was published instead of saved and second wasn't saved so I am starting over!

A few weeks ago Ava had her first dance recital. She loved it! Ava was such a little star. She spent hours practicing, on her own without encouragement (ok a little, but not much). Wow did it show! Ava was the leader on stage and all the little girls looked to her to know the next move. I am pretty sure she was bitten by the stage bug; she is already talking about next year.

Defending Preemie Moms Everywhere

2010-05-11T10:16:00.006-04:00

The ignorance of people is always amazing to me. I once had a lady at a green house ask me how I carried Elizabeth around when she was only one pound (why I brought up her birth weight (Elizabeth's not the nosy lady) is beyond me now). I firmly told this women that Elizabeth was VERY sick and required lots of medical attention and I couldn't hold for for weeks; she was shocked.

A few weeks ago Elizabeth and I were shopping at a craft store. We were getting things for her birthday party, some beads to make jewelry (my new hobby), and t-shirts for the March of Dimes walk. They store didn't carry the correct color and my conversation with the check out women went like this:
I told her why we were walking; she was very excited to tell me "oh! I have a friend who had a baby at 23 weeks or something like that!"

I looked at her for minute then quietly asked if the baby survived.

women- "oh sure (obviously she has no idea that many don't),he was in the hospital for a while (no kidding!!)"

me- "that's great! How is he doing?"

women- "oh fine he is still on oxygen, but I don't think he needs it any more. I think his mom is just over protective and worries to much, I think he has CP too"

me- (eye brows raised to my hair line, inside I am screaming WHAT!!!) "Well, doctors are really the ones who make those calls. They are pretty careful about not keeping kids on oxygen any longer than they need to be. Too much can cause problems. If he is still on oxygen that it is the doctors call and he really does need it" (I was not going to let slide, we preemie moms need to stick together!)

women - "oh"

me - "what is his name?" (you know because I know ALL of the local mirco preemies!)

women- "his name is Hunter"

me- "Hunter! I know Hunter! His mom and I are friends and involved in the same NICU group for our hospital."
After our little exchange I felt so much better. I not only did I defended a wrongly judge mom, but a friend too.

If you haven't seen your baby hooked to machines and tubes, been told your child might not survive the week, if you don't live in fear that the next cold could put them in the hospital, then please don't judge. Yes we buy purell in bulk, avoid crowds, miss family functions to keep our kids away from germs, and drive ourselves CRAZY trying to feed our kids. Sure some people might think that we overreact, are over protective, or just plain crazy; but we have earned that right. Bring on the purell!!

WOW!

2010-05-01T16:29:00.006-04:00

Well the big walk was last weekend. We had another amazing year. Team Elizabeth Grace rose about $6500 this year and proudly walked in the cold to save babies. Thank you, thank you, thank you to everyone who walked with us or supported us in any way.

19 days

2010-04-06T14:22:00.002-04:00

We walk in the March for Babies in just 19 days.
Why?

Because our daughter is a miracle. With out the life saving advancements made by the March of Dimes Elizabeth would not be here today.

We walk so that other parents won't have to meet their child for the first time separated by the plastic walls of an isolete.

We walk so that all babies will get their full nine months.

We walk to show that miracles are possible.

We walk to remember those babies who didn't make it home.

Make an on-line slideshow at www.OneTrueMedia.com

Can you help us?
Please click HERE to join us in the walk or to donate to our team.

April Fools!!

2010-04-01T09:33:00.008-04:00

I was just working on a new post the other day. In it I was writing about how healthy we have been. Elizabeth had a great winter, no ER visit, blah, blah, blah.

April Fool!!!

With the warm weather and healthy winter I have let me guard down. It started out with a runny nose Tuesday. She has not been sleeping well the past week (a molar coming in as well as a cold will do that I suppose) as a result I have not been sleeping well. Last night she was coughing all night- we are now doing breathing treatments every four hours; I can hear her hacking as I type and she isn't due for another for another two hours. Right now we aren't at the point of going to the doctor. By now I know what they are going to say, I will wait until she gets worse. Maybe she will fly through this cold too. I just keep waiting for the "big one" to come.

On top of her cold Elizabeth has had thrush for over a month caused by her asthma medicine. We are rinsing and washing out her mouth, replacing toothbrushes all the time, trying different kinds of medication to battle this. The good news is that it doesn't seem to bother her.

We have had some fun lately. Elizabeth had her first visit with the Easter Bunny (she wasn't a fan up close) perhaps we know where this cold came from or maybe we picked it up from the butterfly tent we visited. The girls loved it and the butterflys weren't shy about landing on us!

What else are we doing this spring? The March for Babies - of course!

This will be our third year and we have raised over $10,000 to date!!! We would love to have another huge group of family and friends walking with us again this year; the past two years we have had been about 100 walkers strong. Clink on the March for Babies tab on in the upper right or HERE to sign up and join us. You can walk with us in Ann Arbor or join our team and walk where you are. If you can't walk we would really appreciate a donation to sponsor our walk - in any amount. Can you donate just $1 for every pound you or your baby weighed at birth? Together we can save babies and help find solutions for babies who are born too soon like Elizabeth.

Darn Faries

2010-02-11T14:39:00.004-05:00

Well they are at it again.

Our fairy friends have been causing some trouble around here- well at least according to Elizabeth. As you might remember we discovered that we have fairy visitors last summer. It has been very exciting to see if they have left things around the house and sometimes a little sad to discover that toys that weren't put away are sometimes taken back to pixi-land. Well the unthinkable has happen. Those naughty fairies have STOLEN Elizabeth's bottles! She is horrified that they could have done such a thing and she really doesn't care that there are baby fairies who might need them.

DONT THEY KNOW THAT SHE NEEDS THEM!!??!!!

How could they do that to such a sweet little girl?

Here's hoping that she continues to gain weight and makes up for the calories that she took in with the bottle in other ways. We are trying to make due with a sippy cup before bed, but it just isn't the same.

On the Potty Train!

2010-01-31T21:53:00.007-05:00

That's right we are going full speed ahead! And we are indeed celebrating the exciting news that Elizabeth is potty trained! We have gone almost two weeks with NO accidents (still wetting diapers at night)!! Elizabeth decided to do it over night, on a Wednesday she wanted to wear her new Dora panties but would just stand and pee in them; the next day I told her if she got Dora wet she couldn't wear them anymore- that seems to strike a chord and she has been doing great since. We even have broken the public toilet barrier. Hurray for Elizabeth and hurray for no more diapers!!!

(Editor's note*we do not encourage eating on the potty, she had her sister to thank for that- GROSS!*)

Happy Birthday Ava!

2010-01-19T19:39:00.004-05:00

Happy Fifth Birthday To Our Little Girl.

Family Pictures/ Thanks Kiera!

2010-01-05T14:21:00.005-05:00

This post has been a while coming; if you haven't noticed I just haven't had time to sit a blog lately. Over Labor Day weekend (told you it has been a while) we traveled to Indianapolis and were able to visit with friends, who we hadn't seen in FOREVER and family. It was a wonderful weekend and so good to see so many people after spending two years on virtual house arrest.

While there Matt's cousin, Kiera graciously offered to take some family photos. We are so lucky to have this incredibly talented photographer in our family! If you live in the Indy area and want some amazing pictures taken she's your gal, not to mention that she is super fun and our kids are the same age so they have a great time playing together too!

Here are a few of the fab pictures that she took and here is the link to Kiera Photo!

These last two are very special. We took this picture of Elizabeth when she was about three weeks old and literally fighting for her life. This was the worst and sickest week that she had. I had very little hope that she would survive. On her arm she is wearing Matt's wedding ring. I asked Kiera to take a few pictures of Elizabeth holding the ring as a two year old and they are just perfect!

Happy New Year!

2010-01-05T13:40:00.004-05:00

We hope everyone one had a great New Year! Here are a few pictures from our Christmas this year.

Ava was Mary in her preschool Christmas program. She was so sweet and very excited to be Mary.

Aunt Christina applying new lip gloss

Christmas morning happiness

One of Ava's favorite gifts the "Disney's Enchanted Musical Vanity"

Ditto!

2009-12-14T10:33:00.002-05:00

To those of you who always ask why, here is a nice little summary of lung disease. It can be found on Eliza Grace's blog titles "The Tree(s) of Life". Here are a few pictures of Elizabeth using the various devises mentioned in the posting.

Ventilator

CPAP

Nasal Cannula

A follow up to my last posting: 5 sick doctor visits. 3 prescribe medications. 2 current medications increased. 2 sick girls

Symptoms and diagnoses included: fever (both), pink eye (Ava), NASTY cough (Elizabeth), asthma (both), sinus infection (Ava), & a sore throat (Ava)- I think that covers it.

Tis the Season

2009-12-03T09:12:00.003-05:00

It's that time of year . . .

So far we have been lucky and it has "just" been colds and a sinus infection.

Good Growing!

2009-11-17T19:21:00.004-05:00

Elizabeth had her best doctor's appointment yet yesterday. In fact we both got high fives on the way out!

Elizabeth is now 21 pounds and 6 ounces! Yes, I know to you that might not be so much, but that is 21X her birth weight in 2 years. And over a pound in 3 months. She is now the closest to the curve that she has ever been; 2 1/2 boxes to be exact- 1% here we come!!!

Her height was even better- almost 34 inches putting her ON the curve in the 2% range and her head by far was the best measuring in the 50%, we have had some good brain growing here!

The down side was that he thought it best to keep her as secluded as we can again this year.

Elizabeth still has "doctor's orders" to eat ANYTHING she wants, but at least this time we weren't given orders to have a Happy Meal lunch!

Happy Halloween

2009-11-17T19:09:00.003-05:00

I know a little late, but here are some pictures of Snow White and Alice in Wonderland.

Have Fun - Help Babies!

2009-10-07T15:37:00.004-04:00

Sounds like a win win to me!

As most of you know, I am a member of the Family Advisory Board. This boards focus is helping parents with children in the St. Joe's Neonatal Intensive Care Unit (NICU where Elizabeth spent the first months of her life and received the most amazing care)

There are two wonderful fund raising opportunities coming up soon and I wanted to ask for any assistance you can give.

The first event coming up is Shop For a Cause. This is a fundraiser hosted by Macy's. I am selling a 20% off coupon for all purchases and 25% a single item (some exclusions) for the day of October 17th. The ticket is $5.00 and the proceeds go directly to the Family Advisory Board.

The second event is the 5th Annual Silent Auction and Fashion Show. This is an amazing evening that features NICU graduates as models. The show is on Thursday, November 12th. The silent auction and reception begin at 5:30. The fashion show begins at 7. The event will be held at Washtenaw Community College in Ann Arbor. The price of admission is $25.00 and the proceeds go directly to the Family Advisory Board. The girls and I will again be models!

If you are interested in supporting our cause please contact me for tickets. If you are unable to attend the Fashion Show or do not shop at Macy's, but still want to donate, please let me know.
You can email me with any questions or to donate or leave a comment.

It is important for our group to continue to be able to support the many families that go through the NICU each year. Your support is greatly appreciated!

My Fashionable Girls!

Fall Fun!

2009-10-06T11:21:00.004-04:00

Lots has been going on here but here are a few highlights-

Ava's first day of school

Fall Soccer

And of course our annual apple orchard trip- we got a little wet but still picked our apples and bought the very important doughnuts!

Developmental Clinic

2009-09-19T13:15:00.003-04:00

Elizabeth had her last developmental clinic visit in August. This is a clinic at our hospital the evaluates low-birth weigh babies and others who may face developmental challenges.

It really came as no surprise that Elizabeth did great. To be honest I knew that she would do well, but there is always that little seed of doubt.
After two hours of "testing"; Elizabeth scored in the normal range for cognitive and superior for language skills! Based on what they saw they don't foresee and learning problems in school- We shall see- I was several weeks late and can't spell or do math with "letters" or at least with more than one letter!

Before she was born I was given the "what to expect" speech with statistics and typical outcomes for babies born so early. I was told- she probably would not survive- about a 20% chance. IF she did she would have (not she might, but would) significant delays in something. She may not be able to see, hear, walk, or maybe just have serious learning problems. I am not saying there aren't lasting problems with her traumatic entrance into the world, they just are not those ( I do need to add that without the laser surgery done on her eyes she would have been blind). I also know what a miracle that she is and that MOST micro-preemies have very serious issues in many areas. Depending on what study you look at Elizabeth's outcome is between 1-9%. It is hard for me to think of it in these terms and I really don't like to. Survivors guilt? Maybe? Perhaps it is just another reminder of how close she was to NOT being here and how easily her life could have gone another way. For now I am happy just to remind myself when she is especially "out of sorts" that she is a miracle and I should just be thankful that she just painted the wood floor green!

and of course we followed up of clinic visit to where else but the NICU to visit some fantastic people!

Showing everyone her Disney picture

We love the St Joe NICU staff!!!

From the Backseat

2009-09-09T09:02:00.002-04:00

We have been on the road a lot the past few weeks. Here are a few things that we heard in the back . . .

Ava- singing "The Lion Sleeps Tonight"
Elizabeth- no singing please
Ava- still singing
Elizabeth - quiet!
Ava- looks at her and continues
Elizabeth- I no like singing!

Elizabeth takes off her shoe and holds it to her ear
"Hello? Mickey Mouse? This is Lizabif!"

Me- what are you doing back there?
Elizabeth - just picking my nose
Me-thats yucky please stop
Elizabeth - OK Mommy

on our way hone from church
Elizabeth asks Ava to hold her hand in the car, shakes it and say "peace be with you"

Matt- look cows!
Ava- oh yeah!
Matt- did you see them Elizabeth?
Elizabeth - I saw sheep (there were no sheep)

Ava- I'm tired of driving how much longer

Ava- as we just pass the last place to stop "POTTY! I need to go now!!!" or "I need to go potty, but I want to wait to we get home" (home was usually 5 hours away)

Ahh the joys of road trips, the cars are a mess, car seats look worse, but we had a great time visiting with lots of people after two years are near isolation.

Happy Come Home Day

2009-08-08T18:59:00.006-04:00

Saturday August 1st we celebrated Elizabeth's second come home day. This day is much more of a day for me to celebrate than her actual birthday. I made a brownie cake at Grandma's and Elizabeth was able to party with some of the family.

Elizabeth the day we brought her home.

Celebrating

Elizabeth two years latter.

We still haven't hit the elusive 2o pound mark and have even increased her appetite stimulant. I am not sure why this bothers me so much, but it does. Maybe it is the fact that an average 9 month old weighs 20 lbs. Whatever it is I just can't get past it. It is just one stinking little pound!

Just because I was feeling good about her health and how far she has come; Elizabeth got sick and had to leave a big family get together on the 1st just a few hours after our little party. Aside from the disappointment of missing out on something- again- it was just another reminder of how fragile her health still is. I am absolutely dreading this winter. It will be her first year without synagis so RSV is a big scare; the swine flu also has me in a cold sweat as well as the thought of another 6 months of the year spent in isolation.

Pixies

2009-07-18T14:27:00.010-04:00

We love Tinker Bell and all the other fairies - and even got to meet them at Disney World. We had no idea that we would soon find them at our house!
A few days ago we learned that a tricky little pixie named Cleanadessa had been visiting our home. Apparently she can hear when parents tell kids to clean up toys; she then comes at night to see if everything is picked up nicely. If it is, she will sprinkle some pixie dust around the area or may even leave a special prize that some of the tinker fairies made. If the toys aren't picked up she might shrink them to a teeny tiny fairy size or even take them away for a while! So far we have been lucky and have found some fairy dust and even a magical fairy jewel! Wow!!

We had a big surprise this morning. When Ava woke up today she noticed a small door on her wall. After careful inspection we determined that it was a fairy door. They must have constructed it while we were all sleeping; Ava said she didn't hear anything- they were very quiet. They use the door as a magic way to go between the fairy world and the human world! We are very excited but have to be extra careful about leaving toys and other stuff out. We don't want our new pixie friends to trip on anything or for them to take anything. Fairies can be tricky! Right now Ava is having fun playing with it using her Tinker Bell toys, we don't think the fairies will mind since they can only use it at night and we don't have any magic to get through the wall.

Disney Dreams

2009-07-06T16:37:00.005-04:00

We just got home from a fun filled week at Disney. Here are a few pictures with more to come (over 700 were taken between all of us! Good thing we don't use film anymore!). A great time was had by all!

A special kiss from Snow White (we didn't see any other kids with kisses all 4 days we were there!)

Not so great of Matt, but look at the smile on Elizabeth! We couldn't believe how much she loved the tea cups!

Where Have I Been?

2009-06-25T08:47:00.004-04:00

It has been so long since I really have updated this blog. Late spring and early summer really kept me busy! Here is a quick re-cap of what we have been up to.

Elizabeth started a play group with Early On at the local school. It was fun for me a little over whelming for her. She was soaking everything up as she sat on my lap each time. When we got home she would sing the songs and play the finger plays. We are now going a few times each month over the summer. Elizabeth language has really taken off. She is using sentences and 4 words at time. She seems to understand everything we say. Her favorite thing to say when asked a question is to blame Ava. "Are you tired" "No! Ava's tired". We had another case of pneumonia. This was the easiest one. She was coughing for a few days and then developed a fever; we caught it so early she only needed that one visit! No ER visit! Weight gain and eating continue to be a constant thorn in my side. I hate that when I hold her I can feel ever bump in her spine, I can put my thumb and first finger around the thickest part of her arm. She is just so skinny! Her clothes hang off of her. The other eating challenge we are having beside quantity is her refusal to eat any fruit or veggies. Well she will eat spaghetti sauce and strawberries pureed and mixed with ice cream, other than that she simply refuses no matter how I try to hide them.

Ava has finished her first year of preschool and will return again next year. She misses the cut-off day by a month and a half for kindergarten. Which is fine with me, I am in no hurry for her to get so big. I missed the spring soccer sign up (I really have been busy!). There is no soccer this year. She is keeping busy and is now our head gardener taking care of the watering and monitoring the buds on all the flowers and plants. She does need so be supervised as she tends to over water the potted planets.

Matt is working and keeping busy building in the garage. He just finished an entry way bench. It looks great even though he didn't make it the way I wanted it done- I guess that his inner artist took over!

After the March for Babies I continued to go full steam ahead and was working on planning the NICU reunion at our hospital. It wasn't really too bad, but I often stopped and wondered what possessed me to volunteer to plan an event for 500! Thanks to all of you who helped with the planning! I thought the day turned out great and everybody seemed to have a good time. Matt is really happy that it is over!

Elizabeth getting ready for the horse race at the reunion.

My other time filler (or waster depending on how you look at it) is Twilight. If you haven't read these books maybe you shouldn't. A lot of my friends were talking about it so I thought I would give it a try and find my inner 15 year old. Totally addicted! They really are good.

Well that's it for now. I do have lots more to say; but the children do need some attention!

Our Little Gymnist!

2009-06-10T15:31:00.003-04:00

On Sunday we attended Ava's gymnastic show. It was a chance for them to show off all of their skills that they have been learning. Ava had fun and all of the children were awarded with their very own medal.

Poop on the Potty!

2009-06-07T19:29:00.002-04:00

Elizabeth is showing the early sign of potty readiness. She has gone on the potty twice, once by chance and the second time she asked to go and went! She will sit every day or so and knows that she get candy if there is any success. Hurray Elizabeth!

Thank You!!!

2009-04-28T19:08:00.005-04:00

Thank You! Thank You! Thank You!
Once again our March of Dimes Team Elizabeth Grace was a great success. We had about 100 walkers decked out in purple shirts and raised $3400 and counting (last year $1500 was turned in day of, so I am sure our total will go up). Thank you to all of you who donated to our important cause, I surpassed my goal and raised $1156! Rain was a threat in the forecast for a good portion of the week; but the day could not have been more beautiful. There were thousands of people all walking for a common goal-to save babies. The girls both had a great time and I enjoyed seeing so many people we knew- friends, NICU staff, FAB friends, other NICU grads, and of course lots of church friends who were walking on Team Elizabeth Grace. The walk itself took forever mostly due to the long stays at the check-points. We started the walk near the front and ended up at the end!

Ava and Daddy

Marching for Babies- Elizabeth with Grandpa Eldon & Aunt Sarah

A Small Part of the team crossing the "Rainbow Bridge"

Elizabeth's sign along the walk.

Finish Line

Happy 2nd Birthday Elizabeth!

2009-04-15T11:37:00.004-04:00

Our tiny little girl is starting to become a "big girl"! Two years ago today Elizabeth entered the world without a sound or a breath. We were told there was only a 20% chance that she would live; she would probably not survive the week. So far today; she has climbed onto the window sill, watched the dogs and ducks out the window, danced, read 3 books over and over and over, watched Sesame Street, eaten 4 pieces of cheese and 3 apple slices, and spoke in sentences. (she has been up since 5:30, gives her lots of time to get stuff done!) I wonder what she will surprise us with tomorrow?!

April 2007

April 2008

April 2009

March for Babies

2009-03-28T13:08:00.003-04:00

On April 26 we will walk again in the March of Dimes March for Babies. The March of Dimes' mission is to give every baby a healthy start- in raising prematurity awareness, and in funding research aimed at prevention and treatment for babies born too soon or those with birth defects. Without advances made by the March of Dimes, Elizabeth would not have survived. Her lungs were simply too premature to work without the surfactant therapy the MofD helped to develop.

I walk so that someday no more babies will endure what she has. Elizabeth has scars all over her body- a PDA ligation scar on her back, little scars up and down her arms and legs from all the IVs she had, her heels are covered in tiny scars from the hundreds of heel sticks that were required, she has a large scar on the back of her leg, we think it is from a collapsed vein from a PICC line or when her umbilical IV was removed. What internal scars are there that we can't see? This should not happen to anybody's baby.

Elizabeth is a miracle. I now have the honor and call to help more babies. Please help sponsor me as I walk. I would really appreciate any donation, no matter how small and I would love it if you signed up to walk the us; wherever you may be you can walk there! You can donate or sign up to walk by clicking on the March of Dimes link on the right.

Just in case you need to see why we walk. . .

Make an on-line slide show at www.OneTrueMedia.com

Back to the ER

2009-03-21T21:24:00.003-04:00

Well it was a good run. Elizabeth has been healthy enough to stay out of the ER since November. On Wednesday we got sent back. Elizabeth has had a cold and cough for a while, I had her checked out once and she was fine. The cough was getting worse so I brought her in to the doctors' office and she was sating 92, that is an automatic trip to the ER, especially for someone with Elizabeth's history. Elizabeth and I spent most of the afternoon there and were sent home with sats bouncing between 94-97. I really can't believe that we were not admitted. Her chest x-ray was clear and she was such a busy little girl she didn't seem sick; so the ER doctor called Elizabeth's pulmonary specialist and they said send her home. She is now on a round of steroids, which make her carzy, and breathing treatments every 4 hours. They say she is having ashtma problems, whatever it is lets hope this clears up soon!

Disney on Ice

2009-03-21T21:11:00.002-04:00

Ava's aunts, Anna and Christina, gave Ava Disney on Ice tickets for her birthday. Ava and I went a few weeks ago and she loved it!!! The show featured 4 different Disney stories and Ava yelled with excitement when each one began, she sat and watched in awe the whole time. Ava wore one of her princess dresses and was able to see Cinderella and Belle in the "princess pre-show". It was a long day and you can see by the last picture she was exhausted by the time we made it home!

Thanks Anna and Christina!!! It was a super special day!

20 Minutes With Elizabeth

2009-02-23T12:26:00.005-05:00

"Helping" Mommy with the coupons

Mad that Mommy moved me away from the coupons

Even Madder!

Maybe a snack will make me feel better?

Great idea Mommy!

On second thought this bowl makes a better hat!

Update

2009-02-17T15:16:00.001-05:00

Elizabeth turned 22 months on Sunday. Hard to believe!

She is still very tiny; weighing 17 lbs 9 oz last week. Just after Thanksgiving she was sick with a stomach bug and lost one pound, she is still catching up from that big weight loss. She is still in size 6-9 months, but can wear one piece 12 months for the length, even some of her 6-9 month size pants fall off when she walks. We should all have such problems!

Elizabeth’s speech is really coming along well. She has over 35 words now, the most recent additions – Elmo (mel-mo), milk, hot, out, thank-you (dank-u) & no-no. Her speech therapist worked for several weeks on no. Now she uses it to answer any question. She also uses it to correct herself- throws all her dinner on the floor and looks at me and says “no-no” It is really hard not to laugh.

I haven’t seen any red flags as far as cognitive delays; I try not to check the list of milestones. There is a chance we may not notice anything until she is in school where she may have some kinds of learning disabilities. Right now our only real struggle is her eating and weight gain. Elizabeth just isn’t that into food, especially her own. A cookie she will take and demand in fact if she sees one. “Real food” on the other hand is just better to throw. It is very frustrating, I try not to make a big deal about it, but I do wish she would be a better eater.

Elizabeth’s reflux has had a HUGE improvement now that we have switched medications. I think she may have vomited once since November. This is a great improvement as she was vomiting several times a week before. Right now Elizabeth is taking 4 daily medications and we have 2 more on an as needed basis.

Sick...again

2009-02-04T12:49:00.002-05:00

Well, Elizabeth is sick again. Runny nose and cough today. She had a low fever last night, which hasn't come back yet today. We are doing breathing treatments as needed, have not had to go to every 4 hours yet. We have a plan this time to call her pulmonologist and he will walk us through oral steroids and try to avoid the ER if the cough gets bad enough that she needs breathing treatments more frequently. Our pedetrician office will send us in to the ER if she needs breathing treatments more than every 4 hours.
The one shinning cloud over this bout is that Elizabeth has learned a new "trick". She is just so darn cute! She will take a tissue and blow her nose all by herself, and she actually blows and cleans out her nose.

Ahh Sleep!

2009-01-29T11:28:00.003-05:00

Not too long ago we had a little girl who who didn't sleep. I am so happy and rested to report that BOTH girls have slept all night long, 3 nights this week. (Ava actually slept all night every day, but once in a while she gets "lonely" at 3am or our favorite is when she ran into our room in the middle of the night, flipped the lights on and told us to get up it was time for breakfast!) Three nights may not seem like a lot to some people, but it is huge for us! Three nights off full sleep, I was even up 1/2 hour before the girls, eating breakfast in peace! Ahhh, lets just hope it lasts.

Side note- Elizabeth sees the doctor Friday, so I will have a new weight to post and I am also working on a post about her language development.

Here are some pictures of Elizabeth playing in flour. What a mess!!! Not sure what I was thinking, but it kept both girls busy so I could make dinner - but then I spent all night get flour out or off of everything!

Happy Birthday Ava!

2009-01-20T00:04:00.002-05:00

Ava is turning 4, hard to believe that so much time has passed us by.

Ava has grown into such a sweet and loving little girl, we are so proud of her. Her preschool teachers tell me that she is kind to all of the children, although Ava tells us she doesn't play with boys! Ava is so loving and protective of Elizabeth. Ava makes sure that Elizabeth is safe and will alert us if she sees any danger, this of course does not hold when Ava herself is the one causing the trouble! Ava also makes sure to give us lots of hugs and kisses and has recently become more generous in giving them than she used to be.

What else is she doing?

She is beginning to read- Ava can read many books word for word from memory and is starting to read simple 3 letter words as well as familiar environmental print words (stop, McDonald's, cheerios, etc).

Ava can write her name and a few other letters and is able to spell mommy, daddy, pie, and Elizabeth. She is starting to do simple addition and subtraction as well.

Ava is as she always has been- BUSY! She is in constant motion, doing flips and flops around the house, jumping, and generally not keeping still. She loves soccer and gymnastics both of which we hope to start up again in the Spring.

Ava is into- being "Little Mouse", she pretends to be a mouse and this extends to the whole family, anything princess, Sleeping Beauty being the favorite. Angelina Ballerina is also a big hit lately and was her Halloween costume this year. Dress up, playing with dolls and "activity characters" (which are little plastic Disney people) take up most of her day at home.

We are so blessed to have this special little girl in our lives.

Here is a little video I put together of Ava's 3rd year. Hope you enjoy it.
Happy Fourth Birthday Ava!

Make an on-line slide show at www.OneTrueMedia.com

We're tired

2009-01-05T20:53:00.003-05:00

Elizabeth has been a little wild lately and her sleeping has been terrible. No clear reason as to why, but regardless of the reason Matt and I are exhausted!

Make an on-line slideshow at www.OneTrueMedia.com

YIKES!!!

2009-01-01T21:32:00.002-05:00

Yes that is a trampoline on Matt's truck! The wind was so strong the other day that it blew it over the neighbor's 6 ft fence and onto the truck taking the gutter out along the way. The truck only had ad few minor scratches - the trampoline is ruined (it later blew into a lamp post after it was taken off the truck).

Merry Christmas

2008-12-30T19:07:00.003-05:00

We hope that everyone had a wonderful Christmas. We sure did and are still trying to put the house pack together!

Isn't the tissue always the most fun?

This is the Christmas present Ava made for us at preschool. It is an angel made from a pine cone. She was so excited and proud to give it to us. She had us open it before she even opened up any of her own from Santa (although she did inspect the doll house that he left unwrapped first)

Cousin Delcia

2008-12-30T13:56:00.004-05:00

We are soo excited to welcome little Delcia Marie to the family. She was born December 27 in the very early hours of the morning. We are just sad the she is so far away in Utah and we have to wait to see her. Delcia is the very first cousin for Ava and Elizabeth - and also our very first niece. I am so excited to be an aunt! Congratulations John and Janessa, we love you!

Again???

2008-12-14T12:29:00.002-05:00

Again, so soon? Really can't we just get a break?

Elizabeth is sick again!!! It just started, runny nose yesterday, cough starting today. I can hope that this will just be an easy cough that will go away. I am so tired of taking her in to the doctor or worse to the ER (three trips so far this cold season). I am starting the breathing treatments and I guess will see what happens.

Elizabeth has a pattern that she follows: crabby at night for a few nights, we think it could be teeth or her ears- it never is. Then a runny nose followed up with a nasty cough that lasts for about two weeks. Here's hoping that we don't spend Christmas Eve in the ER!

Light a candle Sunday

2008-12-13T21:48:00.003-05:00

Worldwide Candle Lighting

The Compassionate Friends Worldwide Candle Lighting®, held annually the second Sunday in December, this year December 14, unites family and friends around the globe as they light candles for one hour to honor and remember children who have died at any age from any cause. As candles are lit at 7 p.m. local time, creating a virtual wave of light, hundreds of thousands of persons commemorate and honor the memories of children in a way that transcends all ethnic, cultural, religious, and political boundaries.
Now believed to be the largest mass candle lighting on the globe, the Worldwide Candle Lighting, a gift from TCF to the bereavement community, creates a virtual 24-hour wave of light as it moves from time zone to time zone. Hundreds of formal candle lighting events are held and thousands of informal candle lightings are conducted in homes as families gather in quiet remembrance of children who have died, but will never be forgotten.

We will be lighting a ours in memory of our friend's son Jack, almost 3, who died in October.

Really?

2008-12-02T15:41:00.002-05:00

We had a nice Thanksgiving. Then it comes. First we thought, its just Elizabeth's reflux. Nothing new, we are used to vomit here! Then. . . it keeps coming. A stomach bug as hit us. Elizabeth was up vomiting all night long on Saturday. Matt, wonderful husband and father that he is, stayed up with her. I was felt sick (probably from the smell of being thrown-up on three times)and stayed in bed trying to sleep. Sunday is mostly normal (huge thanks to my mother-in-law who helped spray the whole house with lysol and bleach spray to ward off further spread), we had a great visit with our family here for a belated Thanksgiving. Later that night Matt is the second victim and Elizabeth's diarrhea starts. Matt is sick all night and I start to feel really sick around 5am. I spend Monday sick and in bed, just really really nauseous. Late Monday we notice that Ava has pink eye and her eye is all crusty! As of now, Matt is recovered, I feel mostly better, Elizabeth still has diarrhea, and Ava's eye has cleared up with some drops the doctor called in (no office visit requied!) she reamins untouched by the nasty bug. The worst must be over???

Prematurity Awareness Month

2008-11-18T19:24:00.006-05:00

November is prematurity awareness month. Every day 1,400 babies are born prematurely. These babies face days to months in the NICU, some will have life long complications as a result, and for a few; they will not be able to be saved. Despite research the rate of premature births is increasing. As a nation we score a D in premature birth rates. So how can you help? The March of Dimes is sending out a Petition for Preemies. Please take a moment to sign the petition and see what grade your state makes. Want to help some more? Right now MasterCard is DOUBLING your donation to the March of Dimes when you use you MasterCard (of course) click HERE to donate.

Babies should not have to start their lives out like this -hooked to machines and tubes. Parents should not have to see their babies from behind plastic isolet walls and wondering if their child would be the one to beat all the odds and survive. Toddlers should not have feet full of scars from the hundreds of heel sticks that were required during their NICU stay.

Elizabeth - Her first day. Eyes fused closed, dependent on machines for survival.

Elizabeth about three weeks old wearing Matt's wedding ring. She was VERY sick when this picture was taken, we were afraid she wouldn't be able to fight the infection.

Elizabeth last week

Calandar Girl

2008-11-11T08:48:00.007-05:00

Time to get ready for 2009 and what better way than a fabulous calendar?

The very first St. Joseph Mercy NICU calendar Heroes of Hope is now available. This calendar is a fundraiser for the NICU where Elizabeth and the rest of the family was given amazing and loving care for four months. It is 12 months of beautifully photographed children who are NICU graduates. 100% of the proceeds will go to support NICU families as they navigate the rough and scary path of being a NICU parent. Elizabeth is one of the models and where else would our little sweetheart be but February? The calendars are $20 each plus shipping. Click HERE to order your copy today! If you want to save on shipping and will see me soon let me know and I can get one (or two) for you.

Happy Halloween!

2008-11-01T18:44:00.004-04:00

Happy Haloween!

Angelina Ballerina

One little mouse ready

Off we go

Trick-or-Treat!

Hmmm . . .

Don't know what this is but it looks good!

The Great Pumpkin

2008-10-24T11:15:00.003-04:00

Last weekend Matt's parents came for a visit and we went to the pumpkin patch. Both girls had a good time. Ava was convinced that the very first round one was the keeper, but we looked just to be sure - in the very far corners of the patch! I am pretty sure that Grandpa had the most fun pumpkin hunting- see last picture. In the end we came home with 2 pumpkins over 30lbs and 2 little ones that were about 3lbs each. Now we just have to carve them up!

Elizabeth and Grandma

Off to find some good ones

Found a good one!

Look at this one!

Question of the week

2008-10-23T20:20:00.004-04:00

I though that it would be fun and interesting to do a "question of the week" poll. My plan is to update it weekly (or so). If anybody has any has any fun topic ideas drop me a line. I am sure that I will run out of ideas soon! So everybody take a second and cast your vote; you may need to scroll down a bit on your screen!
I will get a real update posted soon!

A Few Cuties

2008-10-16T18:16:00.004-04:00

Home

2008-10-11T16:54:00.002-04:00

Elizabeth was discharged Friday afternoon after she was able to keep her sats up during her nap. Still not sure exactly what was wrong-other than she has bad lungs. Elizabeth and I were both happy to sleep at home and not have people waking us up all night to take temps and blood pressures. Seriously- does she really need to be weighed at 3am? Well it is over now and we are enjoying a beautiful fall day.

Admitted

2008-10-09T12:39:00.000-04:00

Here's the scoop-
Elizabeth has had a cold/cough for several weeks but it got much worse that past few days. Tuesday night Matt and I were up all night with her coughing so bad she vomited 3 times. I took her to the doctor Wednesday afternoon, and was happy to see that the doctor we were seeing is also a friend from church. She spent a lot of time checking over Elizabeth and was going to send us home with about 4 new meds, then Elizabeth coughed. The doctor said-"she is turning bright red and purple take her to the ER now" Her oxygen sats were too low also (91)

We packed up and headed to the ER-After a chest x-ray, more vomiting and low sats they determined that the best thing to do would be to admit. That way she could get oxygen and IV meds. I was actually really surprised. She doesn't act sick except when she coughs. We were moved to a bed in peds as midnight!! And got settled after 2am some time. I had to hold the oxygen up to her face all night long and she woke up every time I tried to put her down (I am sooo tired and am home right now to get some rest while Matt is with Elizabeth) Elizabeth isn't able to keep her sats up while she is sleeping drifting down to the 80s at times (how long has this been going on?!) We are waiting on a few lab tests to find out for sure what is wrong. Chest x-ray did show she does have a lot of damaged tissue (which we really already knew)

Elizabeth and I will stay again tonight and will go from there. If she can keep her sats up without the oxygen on she will probably go home sometime tomorrow, if not she will stay until she can keep her sats up without oxygen. The nice thing is that I am so comfortable in the hospital, know almost all the doctors on the peds floor and am comfortable with all the equipment that she has on. It really helps, I probably would be a lot more stressed if I was someplace else or didn't already have a long hospital stay under my belt.

The most important thing to know is that while she is in the hospital- I am not really worried about her. She will be fine and this is just a little bump in the road of prematurity. Although any prayers that you could send her way would be great!

As promised

2008-09-28T13:01:00.003-04:00

Make an on-line slideshow at www.OneTrueMedia.com

Apple Orchard

2008-09-27T14:24:00.004-04:00

One of our favorite fall family traditions is going to our local apple orchard. We pick an obscene amount of apples, buy some cider, and the best part is the doughnuts! I could go on about the doughnuts but I will just say that they are the best in the world. We had fun this year and Elizabeth loved her first wagon ride. Now all we have to do is figure out what we can do with a 1/2 bushel of apples!

Yep, She's One!

2008-09-22T20:34:00.003-04:00

Getting in the cabinets

Using the handle to open the screen door when she thinks no one is looking

Out the door she goes. Loves that she is doing something "forbidden"! On her way to the sandbox!

Vomit Fest 2008

2008-09-15T21:32:00.002-04:00

Sounds fun doesn't it?? Wanna come?

Elizabeth has been at it again. She has been vomiting for over a week nearly everyday and almost always right before bed. It could be that she has out grown her zantac dose or the little cold she has is irritating her already very sensitive throat. We go back to see her doctor on Wednesday so maybe he will have something to say.

Just when you think you have turned the corner on an issue it comes back to bite you!

First Day of School

2008-09-08T20:38:00.004-04:00

Today was Ava's first day of pre-school. She loved it! She went right in and sat down at the play-doh table. No problems saying good-bye at all, she did give me an extra big hug and kiss when I left. When I picked her up she proudly showed me around her room and the paintings that she did. Ava also told us that her new friend had a cookie in her lunch box for dessert (Ava had rasins) we thought maybe she could have a cookie sometime too:) She added that she did all of the fun things and liked the play ground the best and then snack. (It sure sounds like recess and lunch are her favorite subjects!) After we got home Ava told me she missed me but was ready to go back again on Wednesday. Elizabeth and I were able to fill in the day without a problem, even making it to baby story time at the library for the first time- I thought we could get a few of those in before we go into partial hiding for the cold/flu season.

Good Morning!

Dressed and Ready to Go (eyes look a little red due to the sniffles)

Walking in, She was so excited to go in she didn't want to wait for me!

Ready to go in

At her cubbie

Getting started- school is going to be fun!

Showing me her paintings - it was a great day!

Go Girl!

2008-09-04T18:30:00.003-04:00

It is official! Elizabeth took her first steps!!! On Sunday August 30th, Elizabeth took her first steps- for Daddy! Stinker!! She takes about 3 steps at a time usually once or twice a day. She is very cautious and is no hurry to go anywhere on her two feet preferring all fours. As she is so cautious and doesn't walk very often I don't have any pictures yet, but hope to have a video soon!

"Up North"

2008-09-02T15:28:00.005-04:00

Ava after a chilly swim!

She just looks like she is ready for a day at the shore

The girls with Grandma Eve

Daddy and Ava on the boat ride

Elizabeth and Mommy on the boat.

We went up north for a few days last week. Not being from Michigan I hear this a lot, but am not sure what it means to go up north. How far North do you have to go to be up north? Well we went with my whole family. Both my sisters Anna and Christina came who live in New York City and Alaska. It was fun to see them and Ava LOVES to spend time with them. We had a great time and were sad that everybody had to go home. As Ava says "I miss Aunt Annie" (Aunt Annie spent all of last summer living with us to help with Ava and all kinds of other things while Elizabeth was in the hospital. Ava and Anna have a special bond.)

Super Weekend

2008-08-20T20:56:00.004-04:00

We had a great weekend. We celebrated Elizabeth's baptism re-newel on Sunday. Since Elizabeth was baptized moments after her birth we wanted to have a special service at church on Sunday to celebrate her baptism. It was a beautiful day, the service was held outside and the weather was perfect! All of Matt's family was there as well as my parents. Matt's brother John and his wife Janessa were there to be God parents. It was so fun to see them, they live far away in Salt Lake City so their visit was extra special.
We had lunch at home and Elizabeth had her first official piece of cake. I was reminded that for Ava's first birthday I made a super healthy carrot cake, not so for Elizabeth! Chocolate cake has more calories, lucky girl! Elizabeth loved it!!! Ava insisted that we all sing Happy Birthday to Elizabeth because she was eating "birthday cake".

I wanna do that!

2008-08-15T10:18:00.003-04:00

Ava watched some of the Olympic gymnastics. Her eyes were big as she watched them flip. She looked at me and said "I want to do that!" I asked her "When you are bigger you want to go to the Olympics?" "No, I want to do it now!"

Ava then tried to copy what the gymnasts were doing; she rolled , jumped, and spun around.

Here she is working on her Olympic dreams!

Average!

2008-08-12T21:21:00.003-04:00

On Monday Elizabeth had her 12 month (adjusted) evaluation at the NICU's development clinic. Elizabeth had to take a "test" to check her development in cognitive, motor, and verbal. Elizabeth did pretty well although there was a major breakdown about not being able to get a rubber ducky out of a clear box. The results-Elizabeth is average! She scored smack-dab in the middle of average in cognitive and on the low side of average in the other two areas. The test is not a predictor of the future and any learning problems she may have (as a 23 weeker she is at a huge risk, but when your are born that early about the only thing you aren't at risk for is childhood obesity!) but only how she is doing right now. The doctors were very impressed by her scores and told me that many babies don't do as well as she did (and she had a bad day too, that darn duck!). We are very proud of her and happy to have a happy little girl who is "average"!

Just an average kind of girl!

Hey Watch Me Go!

2008-08-05T15:26:00.003-04:00

Here is the promised video of Elizabeth using he push toy.

Arrr

2008-08-02T15:49:00.005-04:00

Yo Ho Yo Ho A Pirate's Life For Me!

Pillaging

Harassing the local maidens

Elizabeth went to her eye doctor this week. To help strengthen her left eye she has to wear a patch over her right eye 2 hours a day. No much of a big deal, but Elizabeth doesn't really like it much.

Thanks Daddy!

2008-07-27T21:38:00.006-04:00

Matt just finished building the fridge for the girls' kitchen set. He made the stove in the fall for a Christmas gift. They look great and are so cute. I am super lucky to have such a handy guy around!

Ava likes to hide in the stove!

All Good News!

2008-07-25T21:46:00.005-04:00

So after my last few post I thought it was about time to tell everyone about all the great things that Elizabeth has been doing lately.

Her verbal skills have taken off! I was worried not too long ago that she was starting to be delayed. Now she has some words and is babbling and chattering all the time.
So far she says: mama; dada; ball; book; bird; bye-bye
Ball, book, and bird all sound the same but she uses them correctly so I am counting them as words. I may have heard a night-night and baba (bottle)-to soon for me to say for sure.
She played peek-a-boo today using her hands to cover her face. It was so cute. I wanted a picture but of course as soon as the camera was out she stopped. Elizabeth also crawled down the stairs today. It was the first time she ever tried it and she went down the whole way without any problem. What a big girl!
She is also walking behind a push toy (which is about as tall as she is). She won't do it very long, so I have no good pictures of this yet. I do have a video but Ava is streaking across it several times in just her princess panties so no posting of that either!

More teeth- She has three on top and bottom now. Looks like more are on the way-they do take forever to come in.

Big news on the weight gain. At Monday's weight in she was 15 pounds 3 ounces and 26 inches. I was very pleased! Her doctor has decided to keep her on the preiacitn, when I gave it another try she increased her intake by 2-3 ounces and he thought that since she wasn't have any negative side effects that it was worth it to keep on the meds. The prevacid is not going so great. (ok, so not all good news) The first try Elizabeth was obviously uncomfortable with her reflux so after two days we went back to the zantac, I later learn it takes over a week for prevacid to start to work. Soo we are trying it again, but using zantac also while we wait for the prevacid to get into her system. Tonight I think I gave up the battle. Prevacid is little tablets that we have to dissolve and then dispense using a medicine syringe. Easy enough right? What a hassel! The medicine doesn't fully disovle it is just tiny granules floating about in the water, which get stuck in the syringe and are causing all sorts of problems. If anybody uses this medicine and has any tips please let me know. I am about to forget the whole thing and just say that the zantac is good enough!

We also have some graduations of sort to report. Elizabeth has outgrown her baby bucket car seat and now will be in a big girl car seat (still rear facing; have to be over 20lbs to turn around. Hard to say how long that will take!). I have also moved her up to size 3 diapers! The best new of all- we are now mixing her formula (still about 30cal per oz) with whole cows milk (doctor's approval and suggestion). This is going to cut down the the formula we use by half, which is awesome since we are going through about 3 cans a week! I just started the switch today, so I am hopeful that she tolerates it well and we can continue.

Yummy!
Don't forget to take me too!
As I was packing for a recent trip to Grandma's Elizabeth thought she would climb in and help!

Exersaucer Painting!

2008-07-16T09:40:00.005-04:00

Singed!

2008-07-13T21:21:00.002-04:00

Today was a rotten day.
It all stated at 6:30AM when both girls were up and ready. We decided to get a jump on the day and go to the early service at church. Our church does a cool drive-in church in the summer time for the early service. You pull up in your car and listen to the service on the radio. Unfortunately when it was time to leave the car battery was totally dead. It couldn't be jumped so Matt had to go get a new battery. Luckily there was a car parts place just around the corner and is there a better place to break down than your church parking lot? The girls were able to play on the playground and there were people helping with the jump and to take him to the car place. So we made it home with a brand new battery about 2 hours latter than planned-so much for getting an early start!
The day progressed as any typical day does. . . until dinner. I lite the gas grill for dinner and when I went to check to see if it was hot enough I discover that it blew out. Not thinking I just turned the knob to re-start it. Next thing I know there was a very loud bang and I was screaming! The grill blew up! I am fine. I have a few very minor burns on my face but my eyebrows and eyelashes were singed as well as my hair. I did go to see the doctor just to be safe and I checked out fine. Matt said it was a very loud explosion and a huge fire ball - I am very lucky that nothing serious happened. Since I am fine and only singed Matt admits that the explosion was pretty cool and he had never seen anything like except on TV. I looked just like the dorky kid on all the movies who gets something blown up in his face. My face was smoky and my hair was blown back 80's style. Ava was of course upset and was next to me the whole time I was in the bathroom splashing watter on my face. I am very lucky to have escaped this explosion with such minor injuries - I think I will need to get my hair cut soon though! Not sure what to do about my eye brows and lashes.

This sure isn't for wimps!

2008-07-11T08:35:00.000-04:00

I try everyday to be positive and do the best I can to make it through the day to keep all in the house happy, healthy, and feed. Hopefully along the way I can get some cleaning or laundry done, there was a time in my life when my house was clean most of the time. Oh Well... Since a few days after Elizabeth's birth I adopted the attitude that there is nothing I can do to change the past and I must live in today. Nothing is to be gained by saying "if only this. . ." But oh my, it would be easier if. . . .
I know how truly blessed we are. Elizabeth was given a 20% chance of survival-thats an 80% chance of not. The doctors told me she may not hear, see, or walk. She can do all these things. (ok, not walk yet but she is getting there and will-soon!) I was prepared for that when we brought her home. I watched like a hawk for any little sign that something wasn't right- isn't early intervention critical after all? I even glanced in the homes for sale; we might need a single store house to accommodate Elizabeth and any needs she may have. Nobody told me that feeding would be a problem. Oh what a problem, it is the biggest stress I have. There hasn't been a single week in the 11 months that Elizabeth has been home when I have felt she was eating well. If it weren't for reading other preemie blogs I would have thought that Elizabeth's was a single unique experience. What is the deal? There have been some days when I had to leave the house when Matt got home I was so stressed about getting this girl to eat. Elizabeth is 11 months old adjusted and weighs 14 pounds. She averages around 20oz a day of 30cal formula (Neosure). On really great days she may take as much as 27oz, but that hasn't happened in a few months. Table foods she likes, but not off a spoon-she must feed herself. I try add calories to everything I can, but I admit that this is something I can do better with. I have no idea how much actually makes it in when she feeds herself, I thought about getting a breastfeeding scale like they used in the NICU to measure intake then thought I would really make myself crazy doing that. We do know that something goes in-we see it come out. Ohh the vomit! Everything that we worked so hard to just get in there just came out! It isn't everyday but lately has been a few times a week. I am not talking about a little bit of baby spit-up. This is projectile everything she has had in her for a while, multiple heaves vomiting. Almost always seems to happen after her bedtime bottle and usually ALL over me. You would think that it was being laid down after eating that triggers the reaction, but it doesn't bother her middle of night or nap feedings-again another mystery. Her reflux is getting worse and we will be switching her to prevacid instead of the zantac she is currently taking. Maybe this will help. Is reflux the cause of her poor eating? Is just being a micro-preemie? Why won't she eat? We have tried with no luck, a wonder drug for many, preiacitn. Elizabeth just didn't respond to it. We were so hopeful that it would be the magic bullet that would propel her onto the growth chart curve. What to do?
What can I do, but go on with my day and do the best I can to get everyone feed. I will continue to fight the battle of wills that results only in me eating more chocolate. I will be thankful that this feeding problem is the biggest one we have, there could be so many more serious ones. I will look at my girls an remember that they are both blessings from God and smile. I will try not to wonder what if she had 16 more weeks to grow. . .

Happy Fourth of July!

2008-07-06T22:36:00.004-04:00

This time last year Elizabeth was in the NICU not even 3 pounds. What a difference a year makes!

Last Year
July 4, 2007

Our Little Firecracker This Year
July 4, 2008

March for Babies- Team Elizabeth Grace

2008-07-02T14:32:00.002-04:00

I know that the March for Babies was in April, but I wanted to post the final totals!
Team Elizabeth Grace raised $6901!!! My goal when I started the team was about $500, I am blown away how one little girl can inspire so many. We had over 100 walkers on our team most wearing bright orange t-shirts. Lots from church and friends and family. Thank you everyone who walked with us and made donations.

Team Elizabeth Grace 2008

Surprise Vacation!

2008-06-29T12:48:00.006-04:00

So Matt had all week off and we were planning on having fun doing things around town. We went to the zoo and relaxed at home and Matt worked in the garage building a little play fridge for the girls (he made a stove for them at Christmas). On Wednesday morning, I thought way don't we go someplace maybe Mackinaw? I proposed the idea to Matt who said no way, but you can look into it. I found some hotels and Matt said maybe, by 5pm he agreed. We booked a room and packed to be ready to leave in the morning! Yes, we left the very next day! Had to borrow a friend's pack-n-play, mine was at my mom's, pack, load, and we were off! Who says you can't be spontaneous with two kids? Well, it might have been a little easier and we could have planned better, with more advanced planning, but we had fun. The five hour drive was killer. Elizabeth didn't nap until the last 45minutes of the trip. So I was back and forth to the back seat. We drove Matt's CR-V with better mileage, so the back seat was a very tight fit with me in the middle of two car seats!
Our hotel room was right on the beach and Ava had fun in the sand building her first sand castle and throwing rocks into Lake Huron. We stayed in Mackinaw City and took the ferry over to the island Friday morning, we rode on top of the boat. It got a little chilly and very windy; we decided to ride inside on the return trip! It was a prefect day! The crowds were light, the weather beautiful! Some highlights were taking a carriage tour of the island, Matt didn't like it but I did. For those who don't know Mackinac Island doesn't allow any motorized vehicles, only hoses, bikes, and feet will get you around. Ava and Elizabeth both liked a butterfly house we went to. Ava was thrilled when a butterfly landed on her green bow.

We also rented a tandem bike with a kiddie trailer on it and biked the 8 miles around the island. Ava loved it, Elizabeth wasn't very comfortable until the last few miles we we realized that we could but our back pack behind the seat and it propped her up a bit. My seat was up too high, so I had a few uncomfortable miles until we stopped and Matt adjusted the seat. Other than that we loved the great views of the lake and scenery all around the island. Saturday morning we went to the Mackinaw Fort. It is a recreation of the British fort from the 1700's. Ava and Elizabeth didn't think too much of it, didn't you just hated it when your parents made you go to boring history stuff on vacation!?! After that we headed home. The only blip of our quick little get away was the food. We had bad luck with food that was just OK. Over all we loved our quick get away, it had been a long time since we have been anywhere. With everything we have been thru this last year I felt like we owed it to ourselves. Although I don't think we will be in any hurry to take another road trip anytime soon! Never mind that we have some more trips planned already to visit friends in family.

Matt & Ava getting ready for the carriage ride.
A bicycle built for four?

Yumm!

2008-06-24T16:55:00.005-04:00

We spent the day at the zoo and Matt thought that it would be fun to stop for an ice cream cone on the way home. It was a great idea, but messy! Elizabeth had her first taste. She loved it and kept going in for more!

Whats going on with Elizabeth?

2008-06-17T21:05:00.004-04:00

Elizabeth has been busy too. She got a great evulation by both her PT and Speech therapist. I heard that the general rule for preemies is to add one year for every month they spend in the hospital to reach the age where they should be caught up to their peers. Elizabeth is blowing that out of the water! She is on target for her adjusted age (if not ahead) in her gross and fine motor areas. Climbing the stairs, cruising around furniture and using the pincer grasp to pick things up off the floor with.

Elizabeth helps Mommy fix green beans

Elizabeth is a little behind in her verbal skills, but not much and she will be reviewed again in the fall. It could be that she is so focused on moving that language is taking a backseat right now. I do hear a momma and dadda, but haven't decided if she is indeed talking yet.

Eating continues to be a struggle and a stress. The vomiting has stopped but low volume of her formula remains. She has started to enjoy table food more and likes yogurt as long as she can feed herself. Obviously this means it is served for dinner on bath nights. Don't let the picture of her holding on to the spoon fool you, it is for show only, thou she did get it into her mouth a few times!

Gymnastics Meet

2008-06-17T20:46:00.005-04:00

Ava had her first Gymnastics meet on Saturday. It was really the end of the year show, but it was a great time and was in a University of Michigan gym which was fun. Notice the Purdue banner next to Ava?
Ava and about 50 other three and four year olds showed their stuff on different gymnastic equipment.

The highlight was the end when all the gymnasts got their very own gold medal! Ava was so proud, she ran and showed her medal off to all the teachers who were still out on the mats! It was so cute! Way to go Ava!

Summer Time

2008-06-11T20:27:00.004-04:00

Fun in the pool!

Goal!

Having fun together.

We are in the grove of summer and enjoying the hot weather. Ava loves the water and Elizabeth is starting the think that it is fun. Vacation Bible School is next week and Ava is really excited to go and have Grandma come for the week to see her. Ava told me that I do something that makes her feel good. When I asked what it was, she squeezed herself and said "give me good hugs" she can be the sweetest thing. No so this morning when I had to carry her home from a friends house screaming. Such is the life of a 3 year old. Elizabeth is doing well, no improvemnt of the eating but the vomiting seems to have stopped.

Kiwi Alet!

2008-06-03T13:04:00.002-04:00

We found out yesterday that Ava has a serious anaphylaxis food allergy to kiwi. After doing a scratch test and seeing that she did have a reaction to the juice on her skin her doctor didn't want her to eat any in the office as we had planned. Ava was very mad about it, I had been talking it up for a few days to make sure she would actually eat it when she had to. We have to carry her epipen with us just in case she comes in contact with kiwi. The good news is that kiwi is really easy to avoid. We need to read labels of fruit punches and juice boxes and watch any fruit salads. We are very lucky it isn't nuts or dairy; something that is much more common. After the doctor appointment we of course stopped for a visit at the NICU, we just can't stop ourselves if we are in the building! Elizabeth showed all her tricks and impressed everyone. They couldn't believe how well she is doing and were very happy to see her so busy. She drew a big crowd of admirers!

Ducks, Hippos, and the ER

2008-05-30T18:29:00.008-04:00

We have been super busy around here. In fact a friend told me today that she thought I was avoiding her calls!
It was a great Memorial Day weekend. We stayed in town and had a picnic at a fun park and went to a local petting zoo. Elizabeth wasn't crazy about the animals, but Ava loved them all. I did not care for the ducks who were biting my toes- too many people feed these things and they think they are to be feed by everyone who goes near them!

Elizabeth is still giving us trouble with eating. Her volume is way down and now she is vomiting for no reason. I can't begin to describe how frustrating it is to me to try to get her to eat and all she does is cry and push the bottle away. Now it seems that she is vomiting every thing up! Last night Elizabeth and I had some special time together-in the ER. She cried for two hours and was vomiting and continued to do so one the drive to the hospital. I had to ask for a wet washcloth to clean her up while I was waiting (which wasn't long). As soon as we walk in the door Elizabeth was all smiles. This girl loves the hospital! It must be the antiseptic soap smell or something that reminds her of all her days there. After 3 hours there we were discharged with a "crabby baby" diagnosis. Since she had a clean bill of health and was wake, at 11pm, we went up to the NICU to visit some of the night shift. We obviously never visit them, so it was really great to see them. In fact there were 3 people there who were there the night she was born.

In regards to her eating and vomiting, I spoke with her dermatologist today about taking her off the steroid we are treating her hemangioma with. He agreed and we are starting to taper off this drug, just stopping is dangerous so we have to give her body a chance to wean off it. Lets hope it works and she will be back to her old self, because I don't know how much longer I can take it! Just tonight she has thrown up twice and has taken more than 3 hours to get to bed.

Today my mom and I took the girls to the zoo and were there all day and had a great time. Elizabeth liked watching the water fountains in a pool and Ava liked the frogs, monkey, and grandma! I liked the baby orangutan (so cute!) and watching a hippo wake up and go get in the water. You wouldn't believe how slow that thing moves!!! I think grandma like Ava and Elizabeth best!

Elizabeth also got two new teeth on top last week! That makes four total.

Here are a few pictures to enjoy!

Elizabeth's First Picnic

Not to be out done

How Preemie Moms are Choosen

2008-05-27T09:26:00.003-04:00

How Preemie Moms Are Chosen

--by Erma Bombeck

Did you ever wonder how the mothers of premature babies are chosen?

Somehow, I visualize God hovering Earth, selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger.

"Armstrong, Beth, son. Patron Saint...give her Gerard. He's used to profanity."

Finally, he passes a name to an angel and smiles. "Give her a preemie."

The angel is curious. "Why this one God? She's so happy."
"Exactly," smiles God. "Could I give a premature baby a mother who knows no laughter? That would be cruel."

"But does she have the patience?" asks the angel.

"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair.
Once the shock and resentment wear off, she'll handle it.

I watched her today. She has that sense of self and independence so rare and so necessary in a mother.
You see, the child I am going to give her has a world of it's own. She has to make it live in her world, and that's not going to be easy."

God smiles. "This one is perfect. She has just the right amount of selfishness. "
The angel gasps, "Selfishness! Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't know it yet, but she is to be envied.

She will never take for granted a spoken word. She will never consider a step ordinary. When her child says "momma" for the first time, she will be witness to a miracle and know it.

I will permit her to see cleary the things that I see - ignorance, cruelty, prejudice - and allow her to rise above them.

She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."

"But what about her Patron Saint?" asks the angel, his pen poised in the air. God smiles.
"A mirror will suffice."

_____________________________________________________________________

My favorite line is that "she will be witness to a miracle and know it". I really like this, although I do think it is a little over the top!

Elizabeth climbing the steps this weekend. Another moment of a knowing that we are witnesses to miracles

Indy Photo Shoot!

2008-05-22T15:33:00.009-04:00

Here are a few of the pictures that Matt's cousin Kiera took this weekend. We are so lucky to have her talent in the family! Thanks Kiera!

First Post

2008-05-21T20:28:00.000-04:00

Elizabeth had a weight check today. We have finally hit the 13 pound mark 13 pounds 2 ounces to be exact!!! I held my breath as the nurse was sliding the slides on the scale, I was almost afarid to look. I wasn't sure what her weight would be, she didn't eat well over the weekend and has had bouts of vomiting after she coughs. The steroids seems to be working and reducing the size of the hemangioma. Her blood pressure was normal today, so so far so good. We see her dermatologist on Friday, so we will find out how much longer she will need to stay on the prelone.

Eating continues to be a struggle. Elizabeth has good days and bad days. Last night she had over 26 ounces of her 30 cal formula! She refuses to eat baby food now. She is a big girl and will only eat table food, who knows how much any food actually makes it down. It looks like most of the food is spit out as soon as she puts it in her mouth. She loves cheese and veggies. Really anything on the floor will do too. My shopping has taken a different turn. I still look at labels, but when it comes to anything Elizabeth will eat; the higher the fat the better!

We had a huge and busy weekend. We started with Ava's soccer game, she scored a goal! She was so cute jumping up and down, very proud of herself while everyone cheered for her. We traveled to visit both sets of grandparents and had a stop in Indy to visit some more family. We spent the day at the Indy zoo, the girls had fun with their cousins (second really) and we were able to see some great animals. Ava had her first pony ride and was all smiles, it was worth every penny! Elizabeth loved her cousin Eli, who is the same gestational age, but literately twice her size! Elizabeth did about everything she could to get a hold of Eli. Eli isn't much of a mover, so he was an easy target for Elizabeth!

Big Girl Bed

2007-06-28T10:37:00.000-04:00

Posted Jun 28, 2007 2:23pm

Elizabeth continues to amaze all of the NICU staff. She is doing great and they all love her. The big news is that she has been moved to a big girl crib! As long as she continues to maintain her temperature and weight gain she will be out of the isolette. Her weight is up to 2lbs 10.5 oz, she will be weighed again tonight.

The eye exam showed that she still has some more growing to do and the doctor will be back to check her next week. There is about a 50/50 chance that Elizabeth will need laser surgery. The good news is that the vessels have grown in correctly that are used for her main vision, now they are watching for her peripheral vision and to make sure that her retina does not detach.

What a beautiful baby!

Elizabeth and her bear 10 weeks

Big Girl Bed

Still Growing

2007-06-26T10:19:00.002-04:00

Posted Jun 26, 2007 9:07am

Elizabeth continues to do well. Her weight is up to 2lbs 9.5oz and she is 14 1/2inches long now! Feedings have been increased to 24cc every three hours and Elizabeth seems to be handling the amount fine. Her cannula air flow has been weaned down to 1 1/2 liters from 2 and so far she does not seem to notice the difference.

Elizabeth will have an eye exam this week, so we are praying that they are growing as they should. Right now my big goal for her is to nurse, she will latch and try, but soon stops. This is normal for tiny babies because they get tired very easily. Hopefully she will get the hang of it soon.

Double the Baby

2007-06-22T10:18:00.000-04:00

Posted Jun 22, 2007 4:52pm

Elizabeth is still doing really well. She is doing great on her cannula and requiring low amounts of oxygen, today she was at room air for a few hours. The next step is to wean down the amount of air flow thru the cannula.

Elizabeth has doubled her birth weight, she is 2lbs 6oz. Her feeds are up to 22cc every three hours. We are trying to breastfeed twice a day now, try is the word. Elizabeth usually lactches and takes a few sucks and is done; right now all her food is given via a feeding tube that she likes to take out.

The eye exam this week wasn't great news, but was expected. The eye doctor who did the exam said that Elizabeth needs close watching and will start weekly exams. Elizabeth is at a huge risk for some problems. Right now the doctor is watching how the vessels are growing, if there is a need for surgery it will be done latter on. It also looks like the hernia Elizabeth has will probably need to be repaired close to discharge.

Please keep praying and enjoy your weekend!

Off CPAP

2007-06-19T10:16:00.000-04:00

Posted Jun 19, 2007 2:36pm

Elizabeth is now almost 2lbs and 5oz! She is growing, but not as fast as they would like, so her milk has been fortified to 27 calories and she is now getting 21cc at each feed. We are also starting to breastfeed once a day. The first try was more of an introduction; Elizabeth didn’t do much and went to sleep. Last night, try two, she actually latched and nursed for a little bit. The nurses and I were amazed not expecting her to do much. Her nurse checked her tummy and Elizabeth took 1cc! This is a very small amount, but we are so happy that she was able to get any at all.

This leads me to the next topic. Many people ask how big Elizabeth has to be to go home. There is no minimum weight, she has to be able to take all her food by mouth, so either by breast or bottle and be free of events. One of her doctors told me that Elizabeth should be home in about six weeks. This was the first time any doctor had said she was going home, it was huge for me. There are still lots of hurdles to cross. There are a number of eye exams and a possible laser eye surgery, hearing tests, feedings, oxygen weaning, and all the development issues later. There is about a 1 in 4 chance she will come home on oxygen support.

Today Elizabeth is officially is off her CPAP and on nasal cannula all the time. Unless she gets tired will stay off CPAP, I have been told that babies get tired and go back to CPAP for a little while. Since Elizabeth has proven everyone wrong (never going back on the vent and having no real issues with her feedings) I think that we have seen the last of the CPAP machine. Elizabeth has a possible hernia that is being watched, this is something that isn’t unusual for preemies who have been on a course like Elizabeth. Hernias usually result in surgery, either right before discharge or a few months latter.

Please continue praying for our tiny little girl. She is an amazing little baby and her continued improvement and beating all the odds can only be the work of God. All of these prayers are being heard. Thank you for all the love, prayers, and support.

2007-06-14T15:31:00.001-04:00

Posted Jun 14, 2007 11:11pm

What a big day! All Good!

I can’t believe that Elizabeth will be two months old tomorrow. She has come so far, what a little miracle! Like all babies, Elizabeth has to get her two month immunizations tomorrow. Her nasal cannula time has been extended to six hours twice a day. Elizabeth is doing great with it; her oxygen requirement is almost the same as when she is on CPAP. Elizabeth is becoming such a big girl, that they put her in clothes for the first time today. She had on a little t-shirt and was swaddled in a blanket and was very happy tonight. There was an “educate and create” class for the NICU parents yesterday, which was a lot of fun. One of the doctors talked about developmental care for preemies, we had lunch, and made a picture frame craft. It was great to meet other parents and do something social; sitting in the NICU can sometimes be less than socially stimulating. Of course I talk to the nurses and therapists a lot, but it is nice to talk to parents who are sharing a similar experience.

Elizabeth is “The NICU’s Next Top Model”! One of the lactation consultants asked me if I would be willing to have a picture taken while kangarooing. I said sure, thinking it would be a quick snap shot with the NICU digital. It turns out the picture is for a breastfeeding brochure for the hospital and they wanted to show skin to skin care. One of the hospital’s photographers (who does beautiful work) came and took some wonderful pictures of the two of us. I will have the pictures in a week or so and will post them. I don’t know when the brochure will be published.

When I came in tonight Elizabeth’s nurse told me it was a bath night. This usually means a wipe down. Tonight was her very first “tub” bath. Because Elizabeth is such a special baby she got the royal treatment. Her nurse but some soap in the water and turned on some oxygen and put the hose in the water. She had her very first whirlpool bath, almost like a trip to the spa! I gave her the bath and she loved it (mostly)! Elizabeth was weighed tonight and is now up to 2lbs 3oz! I forgot to bring our camera, so we have to scan in the pictures that were taken tonight and I will post those soon too.

Thank you so much for all the prayers and support. Please keep them up, I hear everyday from the medical staff what a little miracle she is. The power of prayer is truly working!

Check out that huge belly!

Another picture that shows how small Elizabeth still is- her head fits in the palm of my hand

Big Belly

2007-06-11T15:27:00.002-04:00

Posted Jun 11, 2007 3:56pm

Big Belly Baby!
Elizabeth is doing well, the only concern her doctors have right now is the size of her belly. The CPAP machine blows air into her lungs and some of the air is swallowed causing her belly to get very big. Right now it is soft with good bowel sounds, which is what we want. A major concern for all preemies is NEC, an infection of the intestines which can be very serious. The nurses and doctors are very vigilant checking for any signs of NEC in order to treat it as soon as possible. Right now her belly is just full of air, but they are keeping an extra close eye on her. Last night her belly got really big, they cut her feeds down by half and “helped” her to stool. After a few hours it looked a little smaller, but her doctor ordered an x-ray just to be careful. As she suspected, Elizabeth’s belly was full of air with no sign of anything bad. Elizabeth just has to work the air out of her system. She was also put back to full feeds. To help her belly and give Elizabeth a challenge, she is going to go back on her nasal canula for 3 hours twice a day! We will be praying that she tolerates her time on the canula better and can keep advancing her time off CPAP. She did awesome today with an oxygen requirement down to 25% for part of the time (21% is room air)!

Elizabeth’s weight is up to almost 2 lbs 2 oz. She had lost some weight due to some diuretics that she was put on, but seems to have gain most of the weight back quickly.

Two Pounds!!

2007-06-06T15:20:00.000-04:00

Posted Jun 6, 2007 4:53pm

Two Pounds!!!
Elizabeth has finally made it to two pounds; in fact she is 2lbs and 1/2oz! The nurses made a sign for her bed “Welcome the newest member of the 2 pound club”.

Elizabeth is still doing well. She had a lot of events yesterday, her caffeine was checked and she had a low level. The doctor upped her dose and Elizabeth has had a much better day today. She had her first eye exam today. This was more of a base line check and she will be checked every-other week from now on. The doctor said Elizabeth had a lot of growing to do (surprise!) but so far so good. Most of the problems that Elizabeth could develop in her eyes can be treated with laser surgery, which I found very reassuring.

Ava made some black and white drawings to tape in Elizabeth’s bed to give her something to look at. Ava also enjoyed drawing all over herself with the black marker!

A Hard Day

2007-06-04T15:20:00.000-04:00

Posted Jun 4, 2007 3:33pm

Elizabeth is doing great!
She has gained weight 1lb 14oz. Elizabeth will be weighed tonight, I think she will break the 2lb mark! Because of her weight gain her feeds have been bumped up to 18cc (more than 1/2 an oz) every three hours! They add extra nutrition to the breast milk to get more calories, each feeding is about 24 calories. This doesn't sound like much, but is about the same as an adult having 10,000 calories a day! All of Elizabeth's IV's are out which is great news and one less source of infection, which right now is the biggest threat.

Today was a hard day in the NICU, while Elizabeth is doing great there are two babies today who are very sick. I don't know their situation, but a little boy is dying today which was very hard for everybody there today. I had introduced myself to that mother a few days ago. He was born at 24weeks and 1 lb 9oz, it is hard to know why some babies do well and others don't.

On brighter news, I was able to visit a good friend right before her little boy was due to be born and am looking forward to seeing him during his very short hospital stay while he and mom recover from birth.

Thanks again for all the prayers,we truly belive that they are working and the reason our little girl is doing so well. Please keep them up!

Gaining Weight

2007-05-31T15:16:00.002-04:00

Posted May 31, 2007 9:07pm

Elizabeth is still getting good reports from the doctors and nurses.
Her feeds are going up every 12 hours now until she reaches 15cc (1/2 an oz)right now she is up to 11cc! She will be off all IV fats and nutrition tonight and her big IV should be out by the weekend!

Elizabeth is growing now up to 1lb and 11 1/2oz! My doctor stopped by to visit me and was surprised to see how much she has grown in little over a week.

No News is Good News

2007-05-29T15:15:00.000-04:00

Posted May 29, 2007 2:45pm

Everything is still about the same. The doctors tell us no news is good news and they don't have much to say. One of her doctors told me that she is amazed that Elizabeth is doing so well given her small start. She said that it is mircalous that she is even able to go on her nasal canulla. Today Elizabeth is up to 8cc feedings!

Elizabeth gave us a small scare this morning. She was having what they call "events". This means that Elizabeth had a drop in heart rate called a "brady" or a drop in her oxygen level a "desat". Elizabeth usually doesn't have bradys and had some Monday and today. She also had a higher temp than they would like. Luckly Elizabeth's cafeine level was low causing her events and her isolette was over heating making her warm.
All is well God is great!

Forward Progress

2007-05-25T15:13:00.000-04:00

Posted May 25, 2007 2:46pm

Elizabeth is doing well. She has had a great week.
On Wednesday afternoon her feeds were increased to 2cc, she was doing well with that and was bumped up to 3cc on Thursday morning, and today she is getting 4cc. Her goal is 13cc, as long as Elizabeth is tolerating each feed well she will be increased by 1cc each day. So far so good.

Her CPAP pressure was taken down from 6 to 5 and that is as low as they will go. Her next step is to be weaned off the CPAP very slowly onto a nasal cannula. They will do this by taking her off the CPAP for a short time each day and increasing the time off as Elizabeth tolerates it . On Wednesday Elizabeth was taken off CPAP for one hour a day while I held her. It was nice to see her whole face! She sure is a pretty baby! Starting today Elizabeth will be on nasal canulla for 1 1/2 hours twice a day while being held.

Apparently Elizabeth feels that she has been in the NICU for a while and now knows how to operate some of her equipment. The past few day Elizabeth has removed her feeding tube several times each day and removed her CPAP too.

Have a great weekend everybody!

Mighty Mite

2007-05-23T15:11:00.001-04:00

Posted May 23, 2007 11:23pm

Just a quick update

Elizabeth is still doing well on her CPAP, one of her doctors
called her a "mighty mite"

Elizabeth has grown, she now is now about 1lb 8oz and 13 inches
long. What a big girl! She is also doing well digestive wise, they
have uped her feeds to 2cc every 3 hours to see how she does with
that. They are also taking blood tests less often, which is good
news; both because she doesn't get a stick and is more
stable.

I will post more latter

She poops!

2007-05-19T14:50:00.002-04:00

Posted May 19, 2007 8:49pm

Elizabeth is still doing well on her CPAP. She has surprised everyone, who thought for sure she would be back on her vent after a day of CPAP (of course she can go back at any time, her lungs are still very premature). Now that Elizabeth is off the vent we are able to hold her, today I kangarooed with her for the third time. Matt is planning on holding Elizabeth for the first time tomorrow.

The big news of the day is that Elizabeth has finally pooped! Never has this event been more celebrated! She had three dirty diapers, two while I was there so I helped to change her. Elizabeth is still tolerating her feedings for the most part, now that her digestive tract is moving better, hopefully she will improve more.

A few people have asked if Elizabeth has opened her other eye. She has, she did it on the same day just later that night. The following day was her heart surgery so it had slipped my mind and I never posted that event.

As I watched Elizabeth sleep on my chest today, I was struck by the thought that I was holding a true miracle. Thank you all so much for your continued prayers and support, it means the world to all of us. Elizabeth is a testament to power of prayer, as one of our pastors, Pastor Mike, said “God is still in the miracle business.” How true that is!

By the Numbers

2007-05-16T14:47:00.002-04:00

Posted May 16, 2007 8:55pm

So far so good. Elizabeth really seems to be doing well on the CPAP, her oxygen requirement is really low around 25%. She does look a little funny in the contraption. The down side of CPAP is that it blows a lot of air into her tummy, so she is having a few problems digesting her food with all of the extra air in there. With her tube out now, Elizabeth is able to cry. I heard her make a noise for the first time last night, it was a very quite little squeak. Her vocal chords are swollen from the tube, she will get louder as she recovers and gets stronger.

Yesterday Elizabeth Grace turned a month old. This itty bitty baby girl has been thru more in her first month of life than most people in their entire life. Here is a short and I am sure not complete list (I am sure that the insurance company has a much more complete list!)
Born 17 weeks early, weighing 1lb3oz and 10inches long
Countless heel sticks and blood draws for blood test
At least 6 (more I think) blood and platelet transfusions
Countless X-rays (she had 3 today)
2 chest tubes
1 heart surgery
1 septic infection
She has been on 2 ventilator machines, 2 CPAP machines
2 arterial lines (which are great, they can draw blood with out a stick)
0 poops (we are still waiting for that!)
Lots of loving and skilled nurses, doctors, respiratory therapists, and other support staff
2281 hits on her website as of this posting
More prayers from around the world than we will ever know
One beautiful miracle of God

On CPAP

Good Day!

2007-05-14T14:46:00.000-04:00

What a difference a week makes! Last Monday I was in tears sitting next to a very sick baby. Today I was greeted with good news. Elizabeth is having a great day. She has been tolerating her feeds, digesting almost everything. She has gained a whopping 2 ounces, so she now tips the scales at 1lb and about 6oz! Her chest tube was removed this morning and she had the best chest x-ray yet! Her lungs are clear and open. Elizabeth’s blood tests show no more sign of infection. The best news is that they are going to try to take her off the ventilator tomorrow, if she continues to do well through the night. Elizabeth will have another machine that will help her, called a Continuous Positive Airway Pressure or CPAP. This blows air into her lungs to help keep them open, but Elizabeth must do all the breathing work herself. I was told not to be surprised if she has to go back to the ventilator, most babies have to be put back on after 12-24 hours because they often just get tired.
It is great to share goods news, but it is hard not to wonder when the other shoe will drop next and what it will be. Unfortunately life in the NICU is not a smoothly paved road. We are praying that we have seen the worst, but have to be prepared for more bumps. Thanks you all for your continued prayers and messages of support, they are very comforting to us.

Mother's Day

2007-05-13T14:43:00.002-04:00

Posted May 13, 2007 10:21pm

Happy Mothers Day
Elizabeth is 4 weeks old today. It is hard to believe that it has been 5 weeks since our lives have been flipped upside down. It seems like it was both just yesterday and has been going on forever.

We have had a busy week in the NICU. Elizabeth has been started on steroids to help her lungs. Once again she had a collapsed lung and had an air leak. The leak was caused by part of her lungs over inflating and some of the alveoli burst, leaking air into her chest cavity. On Friday morning, after trying non-invasive measures to treat this, the doctor had to put a chest tube in to let the air out; this is her second chest tube (the first was after her surgery). With the chest tube in, steroids, and heavy duty antibiotics on board Elizabeth is doing much better. The doctor hopes that she is turning the corner.

Today was a great day for Elizabeth, her nurse says that she is a different baby then she was a few days ago. She is requiring less oxygen than she has since before her surgery and her vent settings have been coming down. Elizabeth’s condition has improved enough to be given some food again. The order for now is 1cc every 3 hours. So far she has had “two servings” and tolerated them very well. She is given the milk through a tube that goes to her stomach, after each feed the nurses check to see how the milk was digested. So far so good, Elizabeth has tolerated and digested the food so far. Hopefully she will continue this trend.

Elizabeth looks bigger to me, she has gained some ounces but it is hard to tell what is realy weight is with the changing and adding of various tubes. One of her nurses who had been on vacation for two weeks also thinks that she looks bigger and more mature. Elizabeth’s hair is growing, dark black, at the rate it seems to be growing she might need a hair cut before she comes home.

Hope everyone had a nice weekend

I also must mention how fabulous and amazing Matt's brother John is and our sister-in-law Janessa. They thought to send me some beautiful flowers for Mother's Day just in case Matt wasn't able to get out and get something. Thanks to you both we love you!

With this ring

2007-05-09T14:32:00.000-04:00

Posted May 9, 2007 10:06pm

Elizabeth is stable tonight. Her doctor said that the infection has peaked and right now we are just taking baby steps to get her better.

I posted lots of pictures tonight. Ava and I went shopping today and after much deliberation Ava choose a little teddy bear to give to Elizabeth. She was very happy to take it to Elizabeth tonight. A few pictures show Elizabeth’s size. Matt put his wedding ring on her arm. The diaper and blood pressure cuff are both a little big on her; it is hard to believe that they are even made that small!

Elizabeth blood pressure cuff

Elizabeth's diaper (too big for her)

Ava bringing Elizabeth a new bear

Here you go baby

Elizabeth with her new bear

Elizabeth wearing Daddy's ring