The Good and the Bad

The bad news first . . .

Kathryn had a temperature today as high as 102.9.

The good news . . .

Because of the temperature, the doctor wanted to see her and he said it looks like a viral infection - no big deal. But, as a result of being in his office, he weighed her . . . say hello to our 12 pound, 11 ounce Kathryn!!


Oh and the United Way Video Shoot went well today. Thanks for your prayers!!

Kelly

United Way Video Shoot for Regions

Ok, so my United Way Video Shoot for Regions is this coming Tuesday at 1:00. Please pray that the right message comes through so that the right purse strings will be tugged!!

We made it through with Greg gone this time and no major incidents!! All is well and Greg will be home today!!

Kelly

Comparison!!

I noticed both of these pictures recently and the girls were wearing the same outfit - 4 years apart!! How much they look alike!!

Kathryn's first 4th of July!

Maddie's first 4th of July! (same outfit)

What's been happening at our house . . . .

Well, I finally was able to schedule an appointment to have my massage that Greg gave me for Valentine's Day (and it was wonderful)!!! Valentine's in June - who would have thought. Other than that, we have had a relatively uneventful two weeks. Maddie finished up zoo camp in June and then had a week at home with Kathryn and Miss Cheryl. We all celebrated the Fourth with our friends, the Rains, and watched the fireworks in Birmingham. It was a nice, quiet, long weekend. Nini and Pawpaw were out of town for the weekend and they returned on Sunday. The girls were so thrilled to see them (and Greg and I too!!)

Greg is headed today to Baltimore, so I am praying for several days of quiet around here. I am certainly hoping for no major events!! Maddie is in swimming lessons this week and next and she enjoyed her first class yesterday!! We are also looking forward this weekend to Uncle Beau (my brother),Aunt Britt, and cousin Reed coming to visit this weekend. We haven't seen them in quite a while and we can't wait to let Reed and Kathryn play together!!

Kathryn also has new tricks - she can sit up for a minute or so unassisted, she holds 88-90 on her oxygen sats without her canula (a huge improvement!!!), and she has taken to blowing raspberries with her mouth - which is wonderful except when her mouth is full of baby food!!

Here are a few pictures of the girls recently!!








Hope that you all had a great 4th of July!!

Kelly

Happy 11 monthday Kathryn - Here's a sample of our year in review!

I hope that you enjoy this. I had a great time making it and even shed a few tears. I'm sorry that it's six minutes long, but I just couldn't leave anything out!! You'll want to pause the music player on our blog before playing the movie!!

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

Exciting news!

Each year the Regions Bank internal communications department produces a video that is shown to all associates as part of the company's United Way efforts. And each year, Regions Bank asks its associates to share how United Way has touched their lives. Usually I can't respond to such a request, as Greg and I have been fortunate enough that we have not needed the services provided by United Way - until this past year.

One of the services affected by United Way is Children's Hospital and we have certainly appreciated having this wonderful hospital right in our own back yard. I hesitated two weeks before responding to this call and I prayed about it. In the end, I feel it is a privilege that Greg and I have to be able to share the miracles we have faced over the last year of our lives. So I decided to submit our story of Kathryn and the benefits we have received through Children's Hospital.

I was notified today that they would like to include our story as a part of the United Way video campaign that will be seen by all Regions Bank employees in the Central Alabama area, at least. Kathryn and I will be part of a video shoot which will touch on some of the medical victories Kathryn has overcome with the help of the services offered by CHS and the BPD team there. I feel honored to be able to share her story.

Please pray for me on the upcoming video shoot - I would like to think that I can relive the story without tears, but I think I'll need prayer to do that!! I will let you know more details about the date when I have them.

Faithfully, Kelly

Daddy came home, we hosted a picnic, and Maddie's in Zoo Camp

Greg got home safely from his trip last Wednesday night and we were all glad to see him!! Saturday, we had a picnic at our house with our wonderful Sunday School class, the DINKS, and I think that everyone had a great time. Here are a few pictures:








Monday, Maddie started Zoo Camp and is having a great time. It's one week long and she will be a junior zookeeper/animal adventurer for the week. They are talking about special things with all the animals, riding the carousel, riding the train, and walking a lot!! She is absolutely loving it!!

I have not gone a-wall!

I will try to post tonight - finding the time some days is fairly tough!!

Greg's trip to Los Angeles

So Greg left Monday morning at 4:30 to get on a flight to LA by 6am. I think we both slept about 3 hours all night on Sunday because we were afraid he would miss the plane! Monday, I went to work and came home to Maddie with a red swollen left eye. The doctor said it could be pink eye so he called in eye drops. So we started the battle of eye drops Monday night. Then about 10:30 pm, I was awakened to Grilled Cheese and Strawberry throw up all in my bed - which was where Maddie was sleeping! She had a fever of 101 and I called my mom in the middle of the night to come help (since Greg was out of town). Kathryn was crying because she was awakened by all of the commotion, Maddie was crying because she was gross and had a fever, and the bed was a mess. My mom came and stayed until around 12:15, and then I got another 3 hours of sleep or so before time to get up for work.

Tuesday Maddie seemed better, but her fever wouldn't come down completely and I called the doctor to see if there was anything more to give her. He wanted to see her in his office, of course, so my mom left work early and stayed with Kat while I took Maddie to the doctor. He said it was a 24 hour viral thing - not contagious - and oh, by the way, she didn't have pink eye (purchase of medicine wasted!)

Maddie's temperature as of today, Wednesday, is completely gone and she is perfectly fine. Of course, just in time for Greg getting back from LA tonight.

Oh and during these three days, Bailey, our dog, had some type of eye thing - a clogged tear duct, so I have also been to the vet to pick up her medicine and been applying it to get her better. Of course, she is now much better - just in time for Greg getting back in town.

When he is here, nothing goes wrong at our house. He goes to the other side of the country and our household decides to go all nutty on me!!! Pray for me in July, he heads to Baltimore for 4 nights!!

We sure are glad to have him home tonight!! Welcome home daddy!!

Kelly

Happy Father's Day!!

Happy Father's Day to my sweet husband. You are a wonderful father and your kids absolutely light up when you walk in the room!! The smile on your face when you see them is worth a million!! We love you Greg!!

Quick catch up post

So I haven't posted in a while, we have been a little busy lately!! After our clinic visit almost two weeks ago, we also went in to Kathryn's Medicaid pediatrician on Wed the 5th of June. In the room next to us was a dad with his child who had evidently cut his head wide open and was screaming so loudly I am surprised you all didn't hear!! And to top it off, this dad had not taken his child to the CHILDREN's emergency room, the dad had not taken his child to the child's pediatrician, no, he had taken his child to the first pediatrician he could find. So this doctor didn't even know the poor child while it screamed incesantly for almost 45 minutes while we waited in the room next door with Kathryn naked and her oxygen tank running low and Madelyn trying to climb the walls to get out because she was so bored and we couldn't find anything else in the tiny box of a room to play in "I spy!" Anyway, we finally left and the visit went fine!

That Friday night, Greg asked Madelyn on a "date" to the 5:30 movie and she raced to her bathroom to get ready. She frantically brushed her hair, applied her Cotton Candy lip gloss, and her Strawberry Shortcake spray glitter perfume and they were off to see Kung Fu Panda. I think they had a great time.

Last week, Madelyn was in Vacation Bible School at our church and had a great time!! Her teacher's name was Hannah, who Madelyn called Hannah "not Montana" everyday!! Wednesday afternoon, I took her and Kathryn to the zoo for an hour of playing in the fountains with her dear friend Logan and Friday night she had Jalyn spend the night at our house. Logan and Jalyn are her best friends from school and they are not seeing each other much this summer so we are trying to do extra things to get them together!! All day yesterday, Maddie went with Jalyn to the pool and had a great time!

Last night we celebrated Father's Day for Greg! He got new outdoor speakers, a foot massager, a photo book, and a jewelry box that Madelyn made for him. We also took him to Dreamland for dinner.

We are preparing for another crazy week as Greg leaves tomorrow for LA for three days and it's just me and the girls!!

Kelly

What an Honor - Our March of Dimes Story

For those who are not aware, our new & dear friend, Lurenda, recommended to her contact at March of Dimes that the four of us would make a great choice for a March of Dimes Ambassador Family. So we were asked to be the Ambassador Family for the Birmingham Chapter of the March of Dimes Blue Jeans for Babies event this year. This is in honor of our preemie, Madelyn, AND our micro-preemie, Kathryn!! It's a tremendous honor. Our pictures and story will be highlighted in literature for the event and the four of us will be interviewed and introduced at the kickoff event in November. I will let you all know details closer to the time, but for now, I thought I might share the story I submitted. Bear with the length, and I hope that you like it.

We are the Ellis family: Greg, Kelly, Madelyn, and Kathryn. Our two daughters, 5 years old and 1 year old, were both born prematurely due to Preeclampsia or Pregnancy Induced Hypertension (PIH). Here’s our story…

My first pregnancy was a wonderful blessing in our lives. Everything was going smoothly until around 24 weeks, when my blood pressure began to slowly elevate and there were concerns of Pregnancy Induced Hypertension (PIH). At around 29 weeks, I was placed on bed rest in our home for three days until the doctors realized that my blood pressure was increasing day by day, at which time I was placed on bed rest in the hospital. While on bed rest for weeks 29 and 30 of this pregnancy, I received steroid injections to stimulate the baby’s lung functions. At 31 weeks, the doctors could no longer safely hold the pregnancy back since the only cure for PIH is delivery of the baby. As my blood pressure reached record heights, an emergency C-section was scheduled, I was administered magnesium sulfate to aid in the prevention of seizures, and Madelyn Dane Ellis was born on October 10, 2003 at 3:35pm at 31 weeks gestation weighing 3 pounds, 3 ounces and 16 inches in length. We were very fortunate that Madelyn was born with healthy lungs and required no mechanical ventilation or supplemental oxygen. Madelyn received the drug Surfactant to supplement her lung function and spent 15 days in the NICU in order to learn to eat properly before being discharged home on October 25, 2003. Madelyn is now a healthy five year old with a beautiful spirit and a happy heart!!

Our family was blessed again in February 2007 when we found out that we would have a second child. The doctors monitored me very closely in this pregnancy and it seemed to be a text book pregnancy with little weight gain and a healthy and active baby. In July 2007, I was again hospitalized for dangerously high blood pressure bordering on the level of a stroke, but this time at 23 weeks gestation. I experienced a rapid spiral of health concerns including high blood pressure, swelling, elevated liver enzymes, and the beginning of kidney failure when the doctors again ordered an emergency C-section to deliver our second daughter.

Fortunately, I again received steroid injections to stimulate the baby’s lung functions and on July 25, 2007, Kathryn Bryan Ellis was born at 5:01pm at 24 weeks, 1 day gestation weighing 14 ounces and 11 inches in length. Kathryn was immediately rushed to the NICU and placed on mechanical ventilation in order to sustain her life. Kathryn received the drug Surfactant over the next few days in order to supplement her lung function. Kathryn remained on mechanical ventilation for the next 3 ½ months. We waited 83 days to hold our tiny miracle. During her 143 days in the NICU, Kathryn endured mechanical ventilation, countless blood transfusions, received numerous medications to strengthen her lungs, and fought septic infections. She battled the odds and miraculously beat them. At 143 days in the NICU, Kathryn was discharged on December 10, 2007 on supplemental oxygen, which is the last reminder of her tiny start. Since her initial discharge, Kathryn has had three additional hospital stays, which ended in a diagnosis of pulmonary hypertension that the doctors expect she will outgrow shortly along with her need for supplemental oxygen due to BronchoPulmonary Dysplasia (BPD). Kathryn has been on supplemental oxygen at home along with numerous medications since December 2007 and the doctors expect that by Spring 2009, she will outgrow them all and live the life of a typically developing child with no medical concerns.

Our children are miracles. The March of Dimes raises money that can help to identify factors that predispose women to an early delivery. Thanks to breakthroughs in amazing medications, advances in research, and the generosity of strangers, March of Dimes is making a difference. It certainly has made a difference in our family and in the health of our daughters.


Later in the year when this event comes up, please think of our little family of four and do everything that you can to support the March of Dimes. The money raised will help March of Dimes continue to fight for the littlest of God's miracles and the money already raised is part of the reason that we have two healthy girls!! May God bless you as he has blessed us!


Faithfully, Kelly

Great Visit at Clinic

At Kathryn's clinic visit, she was 11.15 pounds (up from 9.39 pounds in April). She has increased her length by 1 inch and the circumference of her head by 1 inch. All in all, she is in the 33rd % for both height and weight, but for height to weight ratio, she is in the 50th %. What that means is that she is still small in both weight and height, but she is perfectly proportionate - just tiny in comparison to other children her age!! I just keep thinking that she will be the perfect size two that women with average builds wish they could be!! They said that average 6 month olds (her adjusted age) gain around 12 grams a day and Kathryn's weight gain over the last two months was 14.5 grams a day. So she is gaining what an average child her adjusted age would gain and then a little "catch up" weight - they just wish she could gain a little more "catch-up" weight, but for now she is still doing wonderful!! The only nutritional change at this time is to move her to a little bit more caloric formula which simply means making her formula a little bit differently, but the same stuff!

Two of her diuretics had to be increased because her CO2 levels were a little elevated in her blood sample. So they increased her Diuril and her Aldactone, but the good news is we are getting rid of one of the medications!!!!!!!!!! Her Lasix has become so minimal in comparison to her weight that we are going to drop it. She had been getting 0.15 ml twice a day, so for the next two weeks she will get it once a day and if she tolerates that, after two weeks, we can stop giving it to her altogether!! So we may be down to only 9 medications by Monday June 16!! And Dr. Lozano said that she is outgrowing some of her other meds too, and they are going to let those do the same thing - gradually get to the point that they are minimal doses compared to her weight and just let her drop them!! So even though we are still giving the same meds and the same doses, she is still weening from them because she is growing!!

She did excellent with getting her blood drawn. My little trooper just watched the nurse draw her blood and she did not even cry. That partly makes me a little sad because it means that she is so used to it, but at least she didn't cry!

Dr. Lozano was very pleased that her oxygen is down to 1 liter per minute and he said to hold there for a while, but he was very impressed with how much progress Kathryn had made since April. He suspects that she should be off of a lot of her meds and possibly her oxygen by Christmas or at least the first part of next year!! That would be amazing!! Of course, it would mean that we have to be super careful with her through next winter so she doesn't go right back on it, but we can certainly do that!!

We go back again for follow up in August!! Thanks so much for your prayers!! My fears can calm a little now!!

Faithfully, Kelly

Prayers

So, pray for a good clinic visit today - it's at 2:00!!

Faithfully, Kelly

So, allow me a moment to be happy and a moment to sulk

So, I took Kathryn to the doctor today because she has had some tummy troubles (we'll just leave it at that!). Well, the good news is that she has finally crossed the double digits in weight and weighed in at 11 pounds .5 ounces. I am so thrilled to even be able to say that she has grown so much. The bad news about that is that although she has gained, Dr. Stansell mentioned that he felt like her weight gain is probably slowing over what it used to be. She will see Dr. Lozano at BPD Clinic on Monday and his team is who directs her nutritional requirements. I would imagine that Monday will include some nutritional changes and I pray that whatever is recommended will start to work and pack some pounds on our little munchkin! Otherwise, there may be some larger changes that they would consider making that could involve minor or major invasive procedures that I do not even want to think about yet!

I haven't asked for a specific prayer for Kathryn for a while, but I feel the need to ask for one now. She is doing so well and I ask that you pray for some really aggressive weight gain for her over the next few weeks. I pray that she can pull out of this "slump" by herself without the needs of medical intervention!!

Faithfully,

Kelly

Pictures

There were way too many great pictures from our night away so I had to post them this way! Hope that you enjoy.

 

Reflection over the last week

So I haven't gotten a chance to post in a week now and I never posted about our crazy weekend last weekend. We had a wonderful time last weekend with Madelyn's recital and Kathryn's baptism. Saturday morning before the recital, we took Madelyn to breakfast with her two best friends Jalyn and Logan. The recital was hectic backstage, especially for a four year old, but the girls had so much fun getting into their costumes. They did a great job on stage! After the recital, Greg and I gave Maddie flowers and she was so proud! Sunday at the baptism was vedry special to Greg and I to look out and see so many of our family and friends who were there to support us. There were even new friends we have made since the birth of Kathryn, work friends, and friends and family that drove great distances to be there with us to celebrate the sacrament of Holy Baptism with Kathryn! She did an excellent job and only gave a small cry about the water on her head. Sunday afternoon was the annual NICU reunion at Brookwood Hospital where Kathryn stayed from July to December so we went back to let her see all of the sweet nurses who took care of her! Dr. Mena was also surprised to see how big she had gotten!!

We spent the rest of this past week, just as crazy as the weekend. We both worked on Monday, then on Tuesday, I took the day off for Madelyn's end of the year school picnic in the park. Kathryn and I went to her school, we all walked to the park and spent two hours there with all of her classmates! She had a great time and I know that she will miss them over the summer. Also on Tuesday, Greg and I celebrated our eight year anniversary by going out to dinner!! We love our girls but we had a nice night out while Nini and Pawpaw stayed with them. Wednesday was the end of the year dancing party at school. Then Thursday was Maddie's last day of school. And on Friday, we took the girls on a much needed overnight camping trip away from our home (for the first time in almost a year). Like I said it was much needed but we literally packed the van full with the oxygen tanks and the concentrator and everything else. We had a great time and certainly needed a little relaxation, but it will be a while before we get out again!! I will try to get some pictures up from the weekend. Today we are just enjoying a wonderful Memorial Day and saying thank you to the men and women who put their lives in harm's way to defend and protect our country!

Faithfully, Kelly

The baptism

A picture of the baptism


Pastor Jim with Kathryn


Jim and John baptising Kathryn


Kathryn's Nanny ,Miss Cheryl with Kathryn


Kathryn with our favorite nurse, Miss Ginny!!

The Recital

Madelyn and her friends had a great time at the recital!! She did just great!!

Getting ready for the recital and baptism

As we get ready to start our busy weekend of recital, family, cookout, baptism, and NICU reunion, I am absolutely excited about celebrating the lives of my daughters. Madelyn is such a beautiful, sweet little girl with a tremendous heart and she has become such the big sister. She tells us all the time how much she loves Kathryn and that she will always be her best friend. I myself never had a sister, but I can only imagine the bond that these two will share as they grow older!! Madelyn looks at Kathryn like she hung the moon, but then again so do Greg and I sometimes!!

Madelyn performs today in her very first dance recital and is the second to last routine in the 2 1/2 hour program and yes, we have to be there (get to be there) for the whole thing!! She is so excited to be on the big stage and of course when she got up there for the rehearsal she too looked like she was perfecting the "deer in headlights" look! Last night before bed, she said "tomorrow is recital day" and had the biggest smile ever on her face!! Greg and I are taking her to breakfast with her best friends that are also in her dance class as a pre-recital party!!

As we get ready to celebrate the baptism of Kathryn this Sunday, I think back almost 10 months ago when Kathryn came into this world a fragile 14 ounces and my heart is overjoyed that this day is here!! There were so many nights that we never thought Kathryn would remain with us and the fact that she has still amazes me everyday. It's not too often that we get to personally see God's grace and His miracles, but we have the pleasure of staring into the face of His grace every day and she always smiles back at us. It's as if her smile means, "see, Kelly and Greg, I said to trust in me and I would bring her home!"

What a blessing this weekend is too us! We celebrate our children this weekend!! And we thank everyone who plans to celebrate with us!

Faithfully, Kelly

Praise God From Whom All Blessings Flow

We received a phone call last night from some new friends that we have had the pleasure of knowing since the birth of our baby girls, Kathryn and Addie. Addie has been in the hospital (both Brookwood and Childrens) since birth, which is about 7 months. The family finally received news yesterday that they were able to take their baby girl home to Cullman for the first time today!! So welcome home Penn Family!!!!

At our house, we had Maddie's church choir program last night where all the kid's choirs sang. Maddie's choir, the Cherub Choir, sang three songs including the Tarzan song, My God is so great, and the third one escapes me (what a bad mother!!) Nini, Pawpaw, and Nana came too and then we went to dinner afterwards. Kathryn really enjoyed the singing and watched a lot!! She also enjoyed playing with the program!

Today was Maddie's (2 1/2 hour) dress rehearsal for her dance recital this Saturday. Of 21 groups, Maddie's is #19. It was a pleasant 2 1/2 hours, but at least I had the pleasure of Jen and Lisa's company - Maddie's two best friend's moms'!! (Smile)

Thanks for checking in on us!! We are keeping busy for sure! We are awaiting family from out of town this weekend as we celebrate Maddie's dance recital on Saturday and Kathryn's baptism this upcoming Sunday. It will definitely be a busy weekend !!

When I stand before God at the end of my life, I would hope that I would have not a single bit of talent left and could say, "I used everything you gave me." erma bombeck

Faithfully, Kelly

Who's Ready for a Laugh?

One of the sweetest sounds I know!

Happy Mother's Day!

These are from Maddie's Mother's Day party at school.

Keep it a secret from Kathryn . . .

but she's been on 1 1/2 liters for a week and 1 liter since Saturday and her sats are still staying at 100 almost all of the time!! She is doing so well lately!! But don't let her know about it - we want her to think that she is still getting the same amount of oxygen!!

Kelly

Week in review

Nothing much at our house this week. Greg had a busy week with work and the Annual Summit on Thursday, Friday, and Saturday. Annual Summit is Hoar's annual meeting. Monday was a stay at home day for me and the girls and we enjoyed our day! Tuesday was a sick day for me because Miss Cheryl couldn't come to work. So Wed, Thurs and Fri were very busy days at work!! Friday night, Maddie spent the night with her best friend Logan and evidently had a wonderful time at the Movie in the Park!! Greg and I went to the Spouse dinner at Hoar's Annual Summit while Nini and Pawpaw babysat and hung our new screen door (which is wonderful!!!) Greg and I had a great time on our night out and ended up bidding on McWane Center tickets and won them at the Silent Auction. The money went to the American Cancer Society which is a great cause and we got the tickets for a great deal!!! Yesterday, Greg finished up the Summit, Kat had physical therapy at 12:00 and Maddie had a birthday party from 2-4. Last night we just relaxed and had a nice dinner on the deck!

Here's to a great start to next week!!

Kelly