Re-Check of Eye Pressure

Yesterday we took Kyleigh to Duke to be re-checked after the surgery to reduce eye pressure in the right eye. We were really concerned as her eye looked the worst it has since the beginning, very red and cloudy. However, we were pleasantly surprised to receive the news that she is doing well and that her pressure is reading at a normal level in both eyes right now. She changed one of her eye drops in the hopes to help reinstate her appetite. Kyleigh has been struggling feeding again the past few days. We don't know if it was the eyedrop or the change to EleCare formula but we hope she gets back on track soon. Dr. Freedman has also asked our permission to request a referral to Governor Morehead for vision therapy for Kyleigh. We agreed because we are concerned that Kyleigh isn't responding visually as she should and having a therapist work with us would be great. Until then we are to be patient and treat her as if she was just born considering she has been through so much up until now. 

On another note, I returned to work this week. It has been one of the hardest things I have ever had to do. It makes it a little less painful to the heart because my mom is watching her this week and possibly next until we can get her off of so many medications. However, it doesn't make returning to the working world any easier. The demands of a teacher are never ending and yet the demands of motherhood are never ending as well. Please pray for strength, rest and continued healing health of Kyleigh as well as that I will be able to share my time equally between both girls and my husband now that I have returned to work. 

Sisters

Kyleigh chillin' on the blankie and big sister being silly! 

My shirt says "Little Sister" and matches Kaitlyn's "Big Sister" shirt - How cute! 

Back from 3rd Surgery

"Let's Get Outta Here Daddy!"                                           Resting Finally                                        Sleeping Angel

The actual surgery took longer than we anticipated as Dr. Freedman had to go to plan B once Kyleigh was sedated and she was able to look in her eye and see that opening the duct for fluid to drain was not going to work. So instead, she used a laser treatment to allow the eye to drain fluid that was causing a pressure build up on her eye. She was awake in recovery immediately and they called me back to be with her right away this time. She was not a happy baby from the moment she awoke from surgery. She can tell that something is different and tries to rub the side of her face where the patch is covering. She was having some belly aches and eye pain as well as broken out in a rash/eczema. It was pitiful. We spent forever in recovery because our room was given away to another patient when the doctor failed to put orders into the system. Then Kyleigh pulled out her IV in a fit of frustration and we had to wait and get cleared by anesthesia to proceed without the IV or get a new one. Finally, by 5:30 we were told we could proceed to room 7725 Pediatrics without a new IV. When we arrived to the room Kyleigh was really fussy and hard to manage. It was breaking my heart to know she was uncomfortable and there wasn't anything I could do as rocking, paci, singing, patting, nothing was helping. My parents left after I had a bite to eat and we set in for a long night together. I rocked her and soothed her all evening until she finally gave up around 10:30 pm and I laid her down for a rest. She slept until midnight when the nurse came in to check her vitals. Then back down by 1am and slept until 4:30am. Nice long rest for us both and much needed by this point. From 4:30 until the time daddy arrived she was a fussy baby again. She quickly calmed down when Dennis picked her up and things seemed to go smoother the rest of the morning with some occasional heartbreaking cries. The doctor checked her this morning and said things were looking good. We go back on Monday. In the meantime she has a strict eyedrop regimen to follow for this eye to prevent infection and inflammation. Please continue to pray for us as this has been very draining on me emotionally and taxing on us physically. I have even found myself in a spiritual downtime right now even though  I know so many are lifting me and our family in prayer. I know this too will pass--I just wish it was already gone! 

Another Formula

Kyleigh had her allergy testing completed today. It was confirmed that she is indeed allergic to milk and Alimentum, although an allergen free formula, is milk based. So the allergists has changed her formula to an amino acid based formula called EleCare and it is only available through special order at the pharmacy. So she had our pharmacy order the EleCare for us and we have to check with our insurance to see if it is covered. 

We will take her tomorrow morning to Duke Eye Center. Her arrival time is scheduled for 9:45 am. I am not sure how long this procedure will last. She will have to stay overnight. We will return home on Thursday. 

Bye-Bye Newborn

So it seems that Kyleigh has decided it is time to grow. She not only rid her newborn diapers this weekend and upgraded to size 1 but she is also wearing some 0-3 months sleepers now. Oh my goodness, my baby is growing up. She can still wear some newborn sleepers and definitely wears newborn pants still. She weighed in at 8 lbs 15 oz today at the doctor's office. Woohoo!!! She also took in a 4 oz bottle today with no trouble at all -- hungry little thing! 

Allergies run in the Family

Seems that the swollen eye that Kyleigh has had may be the culprit of unwanted allergies and eczema. The nurse practitioner looked at her again today and determined it was not infected. So we are cleared for surgery on Wednesday but will need to see an allergy specialist, Dr. Whelan, same doctor Kaitlyn goes to for allergies soon. Until then I am changing her bath to Aveeno Baby fragrance free and her lotion too. I hope this helps. She is sound asleep right now--I love watching her sleep! 

Another Great Weekend

This weekend was so nice as I got to see so many friends. 

Friday night was dinner at the Pagano's house and it was great hanging out with adults and knowing that our girls were in the good hands of a sitter (plus they were sound asleep). Then Saturday Kaitlyn and I went to a birthday party for one of her little preschool friends. She had so much fun except she was scared silly of Mickie and Minnie Mouse who came to the party too! She wasn't the only little one that ran screaming and crying when they made their grand appearance. I guess we won't be scheduling a trip to Disneyworld any time soon. 

Today we had friends over for a cookout - Kristy, Kinley, Kristen and Sissy. To prepare for the cookout Kaitlyn and I made our first cake together. It was strawberry with vanilla icing. She thought that was the greatest thing to help me make a cake. She helped mix the ingredients and watched it cook and then helped spread the icing. While I was turned around looking for the lid to the cake pan she also helped herself to a taste of the cake--oops! She said "umm..yummy!". Sissy then marked that spot of the cake with a letter "K" so we knew to cut that piece for her since she had licked the icing---gross :). Sissy took pictures and will email them soon so I can show everyone the fun time we had. Speaking of Sissy, it was her  first time meeting little Kyleigh. We also played outside with Kaitlyn and Kinley since it was such a beautiful day. It is so nice to be surrounded by friends.  

So Grown Up

My Little Princess 

Sisterly Love

"I love you" 

Kyleigh Grace - 3 months

My Little Angel 

Sisters

Sweet Sisters

The curls have arrived --

" Oh mom...enough pictures already, everyone knew I was going to have curly hair!"

GI Test and Surgery Scheduled

The GI test went well today. She drank the barium liquid like it was nothing. Dr. Maxwell did the test and said he noticed a few things about her esophagus. One that doesn't influence her at all but is noted in his results was that a vein runs around her esophagus in the wrong direction. (Not sure what that means). He said the flap that closes her esophagus is not closing and most likely due to immaturity. He also noted that her esophagus doesn't push the food down strong like it should being a huge muscle. He told us that Dr. Ulshen would be in touch with his recommendations from this point.

Then we went to pre-op as her eye surgery to reduce the pressure in her eye is scheduled for next Wed. March 25th. She weighed in at 8 lb 5 oz today with her diaper and clothes on.

We are home now and she is finally resting.

Another Surgery

So it is with complete disappointment that we report Kyleigh will undergo yet another eye surgery on her right eye. Her eye pressure has not responded to the drops and it is necessary to intervene surgically. We do not have a date for this as of yet because the desk was closed when we left today. However, we know that it will be soon. She is also changed her eating habits today and has had a difficult time with feedings. We assume it is from the Augmentum and that it is upsetting her stomach but we are not sure. Please pray that she has better feeds tomorrow and that if she is in any pain in her little body that it will go away.

Interview of a 3 year old

Interview with Kaitlyn - 3 1/2 years old
How she views mommy---

1. What is something mom always says to you?
Don't eat the marshmallows (because of how she eats Lucky Charms)

2. What makes mom happy?
Don't cry (she has to not cry at bedtime)

3. What makes mom sad?
When I scream (She knows I can't stand it)

4. How does your mom do to make you laugh?
tickle me

5. What was your mom like as a child?
like my papaw and mamaw you were a baby

6. How old is your mom?
3 (really...wow!!)

7. How tall is your mom?
big (thank goodness this is about my height and not weight)

8. What is her favorite thing to do?
get the water (I have no idea what this is about)

9. What does your mom do when you're not around?
go work

10. If your mom becomes famous, what will it be for?
rock me (she is spoiled)

11. What is your mom really good at?
going to bed (she means putting her to bed)

12. What is your mom not very good at?
not doing like that (don't think she understood the question)

13. What does your mom do for a job?
to keep Kyleigh at the doctors (oh my -- wish my job description was better than that)

14.What is your mom's favorite food?
mashed potatoes and green beans (really because I thought it was Japanese Hibachi Shrimp and Chocolate)

15.What makes you proud of your mom?
you are happy

16. If your mom were a cartoon character, who would she be?
mommy

17. What do you and your mom do together?
play with me

18. How are you and your mom the same?
both are mommies (She acts like a mommy to her baby dolls)

19. How are you and your mom different?
I'm a Kaitlyn

20. How do you know your mom loves you?
hugs

22. Where is your mom's favorite place to go?
at home

Another Eye Infection

So Miss Kyleigh awoke this morning with a very swollen eyelid. Her right eye from the lashes to above her brow was swollen the size of a penny. It almost looked like a knot forming but it was soft. We immediately called Dr. Freedman at Duke Eye Center. Thankfully we have her direct cell number for emergencies. She explained that it could be one of two things- the beginning of a stye or an infection. So we made an appointment with the pediatrician. Dennis took her to the appointment while I headed towards Raleigh for my friend Heather's baby shower. The pediatrician confirmed it was an infection and called Dr. Freedman to develop the plan for addressing the infection. She will be on an eye drop 3 x's a day for 10 days and Augmentum (antibiotic) for 10 days. Plus we go in tomorrow at 9am for a repeat check up. I am beginning to think Kyleigh is going to spend all of her days at the doctor's office.

On another note, the baby shower for little Harrison was great. It was so nice to see Heather, Kelly, Mama Harris, Mrs. Henderson and Jessica. Heather looks great for 34 weeks pregnant and she is anxiously anticipating the arriving of baby boy #2 next month. I'm sure he will be a cutie just like his big brother Craig.

Visit with the Pediatric GI doc at Duke

So my dad drove us to Duke this morning for an appointment with Dr. Ulshen. The appointment was originally scheduled for May 28th but they were able to get us in on a cancellation appointment list so we went in this morning. Dr. Ulshen is a brilliant man but weird. I didn't get the impression that he was the type to hold your hand while you struggle through the journey of fixing problems. But anyways, he did order an upper GI x-ray which we will have to go back to get on Tuesday. They could have done it today but we would not have made it back in time for her 2pm appointment recheck at the pediatrician. He also said that he agreed putting her on an allergy free formula was a good idea. However, he felt that Nutramigen was not the best fit. He switched us to Alimentum, effective immediately. He said that Alimentum was formulated to be even more allergy free than Nutramigen and more babies are successful on it. So we stopped about bought a $30 can on the way home. She took her first 3 ounces a few minutes ago and seemed to not mind the change. For now we will give her the Alimentum and continue the medications until we get results from the x-ray.

This afternoon I should know more about her lab work from the ER visit and she will get yet another shot--poor baby:(.

A Trip to the ER

Wednesday evening proved to be very eventful. After spending her first day at daycare, Kyleigh was doing well or so I thought. I was getting things ready for meeting Dennis and Kaitlyn at the Little Gym and dinner at CiCi's Pizza. Unfortunately, Kyleigh began running a fever of 103.0 degrees. I was panicked. I called the pediatrician's office immediately. The triage nurse told me to take her to Moses Cone ER immediately. So I called Dennis to tell him we were heading to the ER and he mentioned that he was concerned that Kaitlyn may be sick as well. She was clammy, not playing, and tearful. Fortunately, Kaitlyn turned out to only be overly tired and hungry something easy to fix. So Dennis took her to his grandparents and headed to meet me at the hospital. I called several friends and family so they could begin praying that the fever would reduce immediately. Kristy Johnson was able to meet me at the hospital emergency room area and waited with me until Dennis was able to join us. She was a very calming influence as I was still nervous about the fast onset of a fever.

They took us straight back to the triage area and then sent us to the pediatric ER soon afterwards. By this time it had been one hour since I had taken her temperature and it had come down to 101.0. Thank you Jesus--the prayers were working as I had not given her any Tylenol or fever reducer, only praying. She also took 3 oz bottle from Dennis while we were waiting in this area.

Once in the pediatric unit they put her in a gown and catherized her for urine sample. It was pitiful to watch her cry and squirm. Dennis had to help hold her as I just couldn't bare to do it. Then they put in an IV just in case they needed it and used the line to draw blood. This was worse to watch than the catheter. Kyleigh was screaming by now and I was so upset watching her. The pediatric ER doctor came in to talk to us and she was very concerned about her weight at first. She weighs 7 lbs 9 oz according to the scales at the hospital. They said the fever was also concerning and that we should be prepared they may keep her overnight or for a few days but we would wait on the lab work.

By 9pm Dennis had a migraine and it was necessary that he go get Kaitlyn so she could take her medicine and he could rest from the migraine. I remained at the hospital with Kyleigh whom at this point is exhausted and resting in my arms. Around 10 pm they came in to give her an antibiotic via the IV port because they spoke with our pediatrician office about her lab work. Dr. Puzio (pediatrician on call) said it would be best not to admit her to the hospital but instead administer the antibiotic, wait for the labs to culture and send us home. I was able to get her to drink some pedialyte while she was taking the antibiotic around 10:30 pm. We left the ER at 11:45 with a security guard escort to our car. We were finally home by 12:30 am. She was resting so well in her carseat that I left her there to rest. She didn't wake until 7am this morning.

We followed up at the pediatrician's office this morning with Dr. O'Kelley. Her urine is "yucky" as they explained and will most likely show she has an infection. So they gave her another shot of the antibiotic and we will go back tomorrow for a third shot of the antibiotic while we continue to wait on the labs. In the meantime she is fever free. Now if we can get her to poop she may be more comfortable and eat better. This little one is keeping us on our knees in prayer.

Beautiful Weekend

Saturday and Sunday were absolutely gorgeous days. We spent Saturday with the girls at my parents' house and Kaitlyn had fun playing on their swing set. Then Saturday night we went over to our neighbor's house for a cookout. It was delicious.

Sunday began with going to church, then McDonald's for Kaitlyn to play in the playplace (outdoor one), then to Verizon store, then to the park to meet Hadley (Kaitlyn's best friend) for a playdate, and then back to our house where Hadley and her family and Kristen joined us for a hotdog supper on the grill. It was great. After dinner we took the girls to our school playground and they had so much fun. On the walk back home we could tell that they were both exhausted as the emotional drama began over little things. After eating dessert the girls jumped in the tub together - they always enjoy a bath with each other.

It was busy and fun weekend that I hated to see end but by 8pm last night we were all tuckered out and in the bed, even little Miss Kyleigh.

I just wish these wonderful 70 degree temperatures would stick around.

Kyleigh's Eye Pressure is Up

We went today to Duke for a recheck of her eye pressure in the right eye. It is extremely high -- 30! The doctor is very concerned and added another eyedrop for her to take only in the morning. She added Timilol which is another eyedrop that Kaitlyn is also on but Dr. Freedman is cautious with using this one on Kyleigh because she is so small and it has side effects that could present in the form of respiratory difficulty. Therefore, she will only get this drop one time in the morning and it will be wiped away immediately. We will return in 2 weeks for another check on the pressure. If it is no significantly better then the next option is surgery. In fact, she is scheduling a pre-op for the next appointment in the event that the pressure is still up she can go ahead with surgical plans. If we notice her eye looking like it is becoming more cloudy then we are to call immediately for a recheck. My thoughts are that this little girl is just going to keep me going to my knees in prayer. Please help us pray that the pressure will go down using the drops and without any side effects.

She was also seen by the pediatrician office today for her RSV vaccine and we discussed her reflux. The pediatric nutritionist that came out to the house yesterday had called to confer with the pediatrician regarding her reflux and eating. The pediatrician we saw today was Dr. Burbridge (her regular doc is on vacation). He is the doctor that originally put her on Zantac. He agreed that by our description her reflux is in need of more aggressive treatment. He has increased her Prilosec dosage, faxing the medical report to Duke GI in hopes to move the appointment up sooner than May 28th, and told me that if there isn't a drastic improvement soon we should consider taking her off breastmilk and putting her completely on a special formula. I hope we can avoid this considering I have a deep freezer full of milk but we shall see and do what is best for her tummy.

That's all of the update for now.

Samantha Marie - Julie's Story

Julie wrote this while she was pregnant with Samantha and it shows her trust and faith in God and tells us the story of Andrew and Samantha. 

We were thrilled on July 26, 2007 when our second child turned out to be a boy, SURPRISE!!! Could life get any better...one of each -- a boy and a girl. We felt as if our family were complete. Our first few weeks were filled with many cuddles, frequent feedings, long nights, and lots of love for our new little guy. As most parents do, we had hopes and dreams for our new little one and plans for the family God had given us. It wasn't long before we had come to understand Proverbs 19:21 which says "Many are the plans in a man's heart, but the Lord's plan prevails."

When Andrew was about 6 weeks old, we noticed some developmental delays and basically a lack of movement in his lower body. We took him to our family doctor who referred us to a specialist and thus a month and a half of testing and waiting began. Through this time, we had hoped and prayed for the best news possible -- that Andrew just had some developmental delays. If that were the case, he could catch up with the help of physical therapy, which he had already started. There were several other options from a tumor on his spine to some sort of muscular disease.

On November 7, 2007, we received the worst news possible. Andrew was diagnosed with Spinal Muscular Atrophy (Type 1) a disease that Shane and I had never heard of, but soon learned is the #1 genetic killer of children under the age of 2. All children with Type 1 have a shortened life-span as do those with type 2 to as well. However, 90% of children with Type 1 die before their second birthday. SMA is motor neuron disease. This disease destroys the nerves responsible for controlling voluntary muscle movement. The muscles that control breathing, swallowing, head and neck control, walking, and crawling are the most affected. This disease doesn't affect a child's intelligence. Andrew was very alert and attentive and oh so SMILEY!!! SMA is actually relatively common (as common as Cystic Fibrosis) yet it is virtually unheard of in the general public. This disease is very similar to Lou Gehrig's disease. There is currently no cure or treatment for SMA, but they are making a great deal of progress in their research efforts. I could go on and on describing Andrew's disease to you and sharing stats, but I don't want to bore you. If you would like to learn more about SMA, there is a wonderful webiste you could go to. It is fsma.org

Last November, because God blessed us with the help of family, friends, and Shane's colleagues, we were able to quickly plan a family vacation to Florida in early January. It was our desire to take Brooke and Andrew to Disney World (and the grandparents and Uncle Jon) and make some family memories. We knew we would always have the pictures and video of Brooke and Andrew together to share with Brooke someday. Well, we do have a lot of pictures and video to now share with Brooke, but none from Disney World. After being welcomed to Florida by frigid temperatures and spending just 1 and half days there, we had to make a horrible call...an emergency call because Andrew had stopped breathing. Andrew spent four days on a ventilator at Children's Hospital in Orlando, Fl. On January 7, 2008 (exactly 2 months after his diagnosis) Andrew went to his heavenly home, where he can now move and breathe perfectly!!!When we planned our trip to Florida, we thought we were going to the "happiest place on earth" to enjoy our time as a family, but God had other plans. God took us there so that He could take Andrew to the truly happiest place, HEAVEN. I believe God wanted us to be there for that purpose...I can't explain why, I just trust His plan. Perhaps, it's because I have some of the most awful memories of life and certainly the worst memories with my son there in Florida. And I am so thankful I don't have constant reminders of those days and hours here at home.

I praise God that Andrew now is in a perfect place where he will spend eternity and that because I know Jesus as my Savior, I too will someday be with Jesus and with my little guy. But I can't say this is without pain...for here on earth, there is great pain and sadness. I think of Andrew and miss him EVERYDAY. Some days are easier than others as I can say I truly have the peace that passes understanding. That can only come from God and I believe that the prayers of others are what get me through the days and makes this difference.

I also praise God for HE IS GOOD...HIS MERCY ENDURETH FOREVER. Even when I can't understand God's plan and see where the good is, I trust him with my life...each day and the future. We made a decision last spring to have another baby and God has blessed us with a little girl, Samantha Marie, due to arrive in late February. After undergoing prenatal testing for SMA, we learned on October 1, 2008 that Samantha also has Spinal Muscular Atrophy. We have struggled with many questions and of course are heart-broken. It's so difficult to know the fate of your child. And although we know this disease and it's effects well, we also know the journey with each child is oh so different. So, we live with the knowledge that Samantha will not grow up as most children do, but will live a short life here on earth before she also goes to be with Jesus. Yet, we don't know how this will play out...what will our time with her be like. I KNOW that we will treasure each moment and thank God for the time He does give us, just as we did with Andrew. And although in our humanity, we have many fears and questions about the future, we still trust in our GOOD GOD!

And that brings me to another point...we know that Samantha will live a shortened life as Andrew did, but do any of us really know how long we have on this earth? God could allow something to take our life or our children's lives today. Christ could return at any moment. So, how do we respond? Do we know for sure that we're going to spend eternity in heaven? I DO because I've put my trust in the only one who can save, Jesus. Do you? Does it change how we live? How we treat our loved ones and even strangers? Does it strengthen our desire to live for Him? I challenge myself and maybe you too with these thoughts.

PLEASE pray for us...for peace and joy (that can only come from Him) despite our circumstances. Pray for our faith to remain strong even through the most difficult of trials. And pray for our three-year-old daughter, Brooke. Pray for wisdom on our part as to how to deal with these losses in her life and through these hard times. She still misses Andrew and talks about him often -- it breaks and blesses my heart at the same time. She aslo talks about Samantha DAILY and is so excited about being her big sister. She does not know about Samantha's disease. We've chosen not to share that with her at this point. I think some of my greatest fears come when I think of how this all could affect Brooke and yet I know God can use all things for good (Rom. 8:28) and I pray that He will in her life.

THANK YOU for taking the time to read and thank you for your PRAYERS for our family!!!!

Update on Prayer Requests for Friends

Samantha Marie was born beautiful and healthy. Thanks for praying for this child and her family. The little boy that Julie had was 7 months old when he passed away. I don't have any details as to whether it is confirmed that Samantha was born with or without the same problem. However, she is currently doing great. 

Kayleigh Haynes will be honored at a memorial service in Raleigh this Thursday. Please continue to pray for the family as they cope with the grief of losing their precious angel at 13 months old. 

Prayers for the Haynes' Family

You may have noticed a link to my blog for the "Haynes' Family". They are friends of ours that we met during college. They have a little girl named Kayleigh and she has been through so much in her little life. She just turned one year old in January. She was hospitalized on Wed for a high fever and was due to be released yesterday morning. Unfortunately, things went wrong and she passed away this morning at the hospital in Wilmington. Our hearts are weeping for this family as we can't imagine if it had been one of our precious girls that went on to be in heaven with Jesus. Please join us in praying for comfort for Kelly and Jason. They are believers of Christ and have shown amazing strength in the LORD this entire time since pregnancy. More than ever they need him to wrap his arms around them and comfort them now as they grieve the loss of their precious angel "Kayleigh". 

Fun in the Snow

Kaitlyn and Dennis went out in the beautiful snow this morning. We got almost 5 inches. Kaitlyn wore her new boots out in the snow. The snow was so high that it almost came up over the top of her boots. She almost fell down several times. She didn't like that her hands were getting cold. The snow didn't compact very well so it was hard for them to build a snowman. Needless to say they still had fun trying to throw snowballs at each other.