Kyleigh's Two Month Visit

I took Kyleigh in today for her 2 month check-up. Since the last weight check she has not gained. She is still 7 lbs 2 oz. She has grown to 21 inches. Her head circumference is 13 3/4. Although her height is now on the growth chart, her weight is going backwards on the chart. She is still less than 3% in body weight. This is concerning for her doctor. Given that she has inconsistent eating patterns and isn't gaining weight at the rate expected, the pediatrician is referring her to a GI doctor at Duke. Until then he has changed her acid reflux medicine in hopes to give her some relief and help with the fussiness. While at the appointment the doctor witnessed her have a severe reflux attack and decided that Zantac was no longer the best medicine. She is resting well right now as she received her shots today and it seems to have made her sleepy. 

Eye Pressure

Kyleigh had a revisit to Duke Eye today. Her retina's look great but her eye pressure in the right eye (smallest of the two) is high. Her left eye pressure is about a 7--really good! Her right eye ranges from 24-26 -- really bad! So they have taken her off of the steroid eyedrops for this eye and started her on a drop to reduce the pressure. It happens to be one of the drops that Kaitlyn also uses daily. Kyleigh will get this drop 3 x's a day and we will go back next Monday for a recheck. Until then we will pray that the pressure goes down and her eyesight is uncompromised. 

Prayers for a Special Family and Little Girl

I received a prayer request today for a little girl that we don't even know her or her parents. But I can't help but post it out there for others to pray. Since my pregnancy with Kyleigh and her birth I have been reminded that our God is in the miracle business and this family needs a miracle right now. 

Julie is 9 months pregnant and expecting a baby girl Samantha to be born via c-section on Thursday morning. However, the baby has a terminal illness and is not expected to live very long. What's worse is that Julie's last baby, a boy, was born with the same illness and died several months later. Apparently, it is genetic and they don't know how long she will live. They already have Samantha's room decorated and are praying for a miracle as she and her husband are both believers and know the Lord. They also have a 4 year old daughter Brooke whom they are concerned about how she will deal with all of this. Julie has known about this throughout her pregnancy and she still chose life for this baby because she knows it is in God's hand and his plan. So please pray for Julie, her husband, her daughter Brooke and baby Samantha that will be delivered on Thursday morning. Pray that God will work a miracle for this family and offer them peace as they face this terrible situation. 

First Haircut

Kaitlyn had her first haircut ever today at Great Clips. She did such a great job listening to the hairdresser and sitting still. She was rewarded with a lollipop at the end of the haircut. Her hairstyle is the same as before, she just got the ends trimmed up. The last picture is my favorite of her wet and curly hair and cute smile. 

The Irony of Sleep

So I fed Kyleigh around 8pm last night, she ate about 3 1/2 oz and she was in bed before 9pm. My head hit the pillow shortly after laying her in the crib. I woke several times throughout the night for one reason or another, none of which were because of Kyleigh. She slept until 3:30am. That is over 6 hours of sleep and over 7 hours since she had eaten. How ironic that she got sleep and I didn't. Now we just have to wait and see if she will keep this up! 

The Girls are Growing

I took the girls in to the pediatrician's office yesterday because they are both coughing. Kaitlyn is being treated for bronchitis and Kyleigh's is most likely a result of the reflux. Anyways, they weighed both of the girls at the appointment. Kaitlyn weighs 31 lbs -- wow-- she stayed 29-30lbs forever it seems. Kyleigh now weighs 7 lbs 2 oz. Of course, the funny thing is that while weighing Kyleigh the scales jumped up to over 8 lbs at first and I was amazed until the nurse realized that Kaitlyn had her hands pushing down on the scale :) Oops! At any rate, both girls have an increased appetite and are growing well. Kaitlyn is about to outgrow her new pajamas and size 3T pants while Kyleigh is finally growing into her newborn clothes (well some of the sleepers at least - the separate pants still fall off of her). 

Valentine Weekend

Our weekend began with me spending Friday night at home with both girls. Dennis was at school helping his PTA with a fundraiser. They raised over $1000 which meant he had to sleep on the roof of the school. We (I) missed him very much that night after the girls went to bed. 

Saturday morning the doorbell rang and Dennis was there to give me a long stem rose, card and a kiss. How sweet! He also had a present for Kaitlyn which thrilled her. Kaitlyn and I went to the circus with our friend Kristen Porter. Kaitlyn really enjoyed it. Her favorite part was the elephants and I really liked the tigers. She got a flashing light as a souvenier as well as a wizard hat that came with the cotton candy we brought back for Dennis. 

Saturday night my aunt Sabrina came over to watch the girls while Dennis and I headed out for a date. Yes a date!!! I got all dressed up with a skirt and even wore hose because I was so excited to be going out with my hubby for the first time since the day before Kyleigh was born. We went to our traditional Japanese steakhouse "Fire and Sticks" for dinner. It was delicious.  Kaitlyn enjoyed playing Candy Land with my aunt. 

Sunday we were able to get to church as a family unit for the very first time. It was my first time back since Thanksgiving. Wow---it was a good service. I enjoyed the music. I spent most of the sermon in the vestibule area because Kyleigh was fussy and then she had to eat but it was still worth it. 

This afternoon Kristen came over and we made my infamous chicken pan pie together -- it turned out great with a few additions of green beans and corn that Kristen suggested. 

All in all I would have to say it has been a memorable weekend and enjoyable with family and friends. 

Praise God--Good News

Kyleigh's retina is healing nicely. Dr. Toth and Dr. Freedman were pleased with how it is healing. They reduced her steroids to 1/2 dose for the next 3 days. They are going to see her again next week to recheck and hopefully her glasses will be in by then. Until then Dr. Freedman sent us home with a loner pair of glasses to play around with and get her used to having them on her head. We are so thankful that God is healing her eyes and so thankful for wonderful doctors at Duke Hospital. 

Funny Sayings

So Kaitlyn is saying some of the cutest things lately. Dennis took her to preschool this morning and she said as they were pulling out of the driveway - "Look Daddy, the moon". Then as they crossed the bridge Dennis said "Yes Kaitlyn I see the moon, look". Then a few minutes later Kaitlyn said, "Daddy, Why is the moon following us?". So cute. Dennis tried to explain that the moon isn't following them rather it is always in the sky. Not so sure she understood. 

When Kaitlyn arrives and leaves her preschool class she signs in and out using a polar bear with her name printed on it. She is learning how to recognize her name and can find it more times than not. Well, today when Dennis picked her up from preschool she walked up to the board and picked off her polar bear immediately. Dennis asked her, "How did you know that was your name?". He thought she might say because she saw the "K", but instead she said matter of factly - "cause I'm smart". She is smart and cute--gotta love her. 

On another note, the other day when our trip to Duke was so difficult I found humor in our situation and it made my mom laugh until she almost cried. So I thought I would share it with everyone else. I put myself in Kyleigh's shoes so to speak and wondered what conversation she might have been having with God on Monday and in my mind it went a little like this--

"Dear God, I think I might not understand what is going on with my mommy today. She woke me up early and made me get in the carseat to ride for a long time.  Then when we finally made it to where we were going she let people poke me in the eye multiple times and I cried but they wouldn't stop bothering me. Then she took me to another place and let them mess with my ears by poking in them--again I cried but it didn't make it stop. I'm so hungry but everytime my mommy gives me a bottle I can't get any milk out of it. God, is this some cruel joke my mommy is playing on me or what? I think I might want a new mommy. Please reply". 

Then I imagined God holding her in his arms and replying, "My angel baby, I know you have had a rough day and yes your mommy seems out of sorts today. She too hears your cries and wishes to take away your pain. She is only allowing the people to poke and bother you because she is trying to help you. As for the milk, well we are all working on fixing that for you just keep trying and know that your mommy will be "new" again soon". 

I sure hope Kyleigh accepted his reply because I can't help but think it must be hard to be an innocent baby that can't speak or defend itself in the hardships of life. Not sure if this story made you laugh as I think it may have more caused a chuckle or two if you could hear me say it out loud. 

2 Successful Feeds

I can tell that people have been praying for Kyleigh. At midnight she awoke to feed and I was mentally preparing myself for it to be a battle and I still had the feeling of defeat before we even began. However, she was very patient and methodic in her approach to the bottle. I somehow managed to get the valve in just perfect and it worked the first try. She took down 100 cc which is just over 3 oz in about 45 minutes. Woohoo!!!!! Go Kyleigh and Yeah God!!! I was ecstatic to the point I went to the bedroom and woke Dennis up just to tell him she had eaten. She went back down to bed very easily and awoke again at 5am. I awoke with anticipation of having another good feed but preparing myself just in case so the disappointment wouldn't be so great if she didn't eat. Well, much to my surprise she ate 3 oz again in about 35 minutes. YES!!!!! I was so happy to see her eat without struggling and crying. She was a satisfied baby. She lay on her play mat for a while following the feed while I finished getting Kaitlyn ready for preschool. Then she fell asleep in her bouncy seat while I got dressed. It is awesome how good our God is to take care of our needs when we ask him to and when people pray for us. Thank you. Keep the prayers coming!! 

Retina Troubles

So we began our first appointment for the day at Duke Eye center this morning. My parents drove us there because Dennis took Kaitlyn to her first real dental visit this morning. Kaitlyn did well at the dentist, she was a little scared of the electric cleaning tool, so they just cleaned her teeth the old fashioned way without the extra noise. Dennis got some really cute pics that I can post later.

Anyways, Dr. Freedman's associated began evaluating Kyleigh first. She was having a hard time with the left eye and so she pulled in the ultrasound machine. Then she called for Dr. Freedman to come in and take a look. Dr. Freedman said that the corneas looked clear and she was pleased but then she made the sound that told me something was wrong. She said that she didn't like how the retina looked in the left eye and this was troubling to her because of the eyes to have had complications from surgery she would have expected it to be the smaller of the two eyes, the right eye. But she did the ultrasound and saw that the retina was indeed not laying correctly. She immediately called for a pediatric retina specialist but they were tied up at the moment. She explained that she feared the retina had come detached and that this was a possibility from the surgery but again unexpected from the left eye because it was the easier of the two eyes to operate on. We had two other appointments to go to at Duke so she sent us on our way and told us to come back after the ENT and feeding appointments to meet the retina specialists. They were so kind to walk us to the ENT clinic completely across the hospital (for those that know Duke it is a huge and confusing maze). When we arrived at the ENT appointment we had the call to reschedule the feeding appointment because we very well couldn't be in two places at once and we were late leaving the eye center. 

The ENT, Dr. Kaylie, said her ear infection has cleared and that she should be fine to follow up with her pediatrician for all ear concerns. If ear infections become a regular problem then they will consider doing tubes at 6 months of age, otherwise they will plan to do tubes during the cleft palate repair surgery at 12 months of age. 

We left the ENT and headed to our feeding consultation with the speech therapist, Christine. Kyleigh was using the pigeon bottle and it is flowing too fast so they told us to try the valve with a Dr. Brown's nipple. At the feeding she became very frustrated and unable to get the milk out of any nipple presented to her. The therapist was puzzled. After 15 minutes of being convinced that she was drinking, we stopped to burp and noticed the level had not changed at all. That's right she hadn't eaten a bit. She was crying and crying and just plain exhausted. It took a while but the therapist finally got the Dr. Brown's nipple to work (despite some major leaking) and she took 2 oz in 15 minutes. Success, right? WRONG!!! Later the same method failed and since then she has only taken 1 oz at 4:30pm and 20 cc at 7pm. Seriously, I could cry trying to watch her feed. It's pitiful. We have another consultation scheduled for next Tuesday at 10am but we may have to go sooner. 

We then headed to the cafe' for some lunch ourselves and then to turn in her Rx to the optical shop for her glasses. Afterwards we met the doctor for her retina. I will just refer to him as Dr. M as I can't pronounce or spell his name. He was very nice and had left the OR to come and see Kyleigh. Dr. Freedman was also present for this evaluation. They determined that her retina has folded over several times and there is extra fluid in the eye. Her eye is very "soft" right now due to the fluid so they are unable to get a pressure check. The good news is they don't think she will have to have it surgically fixed. Instead, they are trying an oral steroid that may force the retina to lay flat. We go back Thursday morning at 7:30 am to meet with Dr. Freedman and the head pediatric retina doctor (she wasn't there today) to check the retina again. If the oral steroid doesn't work they may have to schedule an exam under anesthesia (EUA) and give her a steroid shot directly into the eye. We are praying that the oral steroid does what it needs to do without the side effects of (acid reflux and extreme hunger -- which is bad when she isn't feeding well). 

This is just a small taste of how Kyleigh's day was and how emotionally exhausting it was for all involved. All of this to say, please continue to pray for Kyleigh. Specifically for her retina to heal and no further problems with her eyes, for feeding to resolve and  that she will start taking her full feeds easily. 

A Beautiful Day

Today was a beautiful day and busy. Kaitlyn ran errands with her daddy this morning and then went to the park (actually the playground at my school but she thinks it is a park). After they both came home, Kaitlyn and I ran out to the grocery store. It was fun to get out of the house and Kaitlyn was a riot with all of her questions and comments throughout the store. She convinced me to buy her some mini muffins and get a pink balloon. But she was so cute and being so good I couldn't help but say "Yes" to her requests. Sad to say the balloon escaped from the car upon our arrival home and floated off to the sky. Kaitlyn said we should get a chair and go get it. How cute! I tried to explain that the balloon was too high for mommy to reach with a chair and it was gone. She then explained we should go for a walk and then we would be able to find the balloon. We did go for a walk but of course we didn't find the balloon but by that time she had forgotten about the balloon missing. 

Kyleigh and I spent some quality time together this morning while Dennis and Kaitlyn were out and about. She lay on the play mat kicking and smiling for a long time. It is neat to see how she reacts to seeing her world now that the cataracts are gone. Of course she can't focus on anything but she can see and that is amazing. 

We are still struggling with her feedings as the bottles aren't always cooperating. The valve sometimes isn't in the right way or it starts leaking. But we are getting better and she is very patient with us as we are learning a new way of feeding her. 

RSV Vaccination

The insurance finally approved for Kyleigh to receive the vaccine for the RSV virus that is so dangerous for young babies. I took her in this morning for the vaccination. She didn't react until the nurse started to put on the band-aid and then she started the horrendous silent cry. The nurse was concerned because it took several seconds for her to take a breath of air. But she calmed down just as quickly as she started and all was well. She weighs 6 lbs 13 oz and is starting to eat better again. We have had 2 successful feeds of 3 oz bottles. Yippee!!!! The doctor checked her ears while we were there and said they were starting to look a lot better -- also very good news. 

I asked him if we should bring Kaitlyn in since she was still sick and he said unless she was dehydrated there wasn't anything their office could do for the stomach bug, which I kinda figured that much. She hasn't thrown up since yesterday afternoon so hopefully she is on the road to recovery. I am anxious to have her home and healthy again. Until then she is getting spoiled by Dennis' grandparents which makes it a little easier to know that she is in good hands. 

Home Sweet Home

  We brought Kyleigh home today after her post-op and appointment with the optical shop and speech. The night at the hospital went smoother than last week. Dennis spent the night too despite the regulations of only one parent. We just shared the pull-out couch bed and alternated getting up with Kyleigh. The monitors didn't go off nearly as much and the nurses left us alone for the most part. We had a friend Julie visit last night, it was great to see her and she met Kyleigh for the first time in person. 

   We are trying a new bottle system with her feeding. She was having heart rate drops and desat O2 levels on the Haberman so they are trying her on the pigeon bottle. With this bottle the valve is interchangeable with standard store bought nipples. So we are going to experiment with finding the right flow for her. Her post-op gave good news. Both eyes are doing well. The right eye is still hazy from last week's surgery but mostly because it is the smallest eye and the cornea is still recovering. This could still clear up. Her pressures are normal, retinas and optic nerves look great. She was fitted for her first pair of glasses today. She is on several eye drops, amoxycillin for the ear infection and tylenol for pain, in addition to the acid reflux meds. She has her on little drug store right now. 

   Kaitlyn is still sick with the stomach bug (poor thing). She is still at grandparents to keep from having her spread it to Kyleigh. We miss her terribly but hope she gets through this fast so she can return home to us. 

   Kyleigh has a doctor appointment in the morning for her RSV vaccine and then we go back to Duke on Monday for an eye check up, feeding consult and an ENT evaluation. 

Out of Surgery

Kyleigh came out of surgery around 10:15am. This time they did not call me back to the recovery room and I was get very anxious. Instead, at almost 11:45 am I went to ask how much longer and they told me that she was fixing to be wheeled out and transported to her room. Really? Seems crude that they didn't allow me to come back to her this time. She had been upset and crying. Not to mention they tried to feed her pedialyte using a regular bottle nipple that comes with the small Similac bottles and this only made her more angry. Instead, if they had called me back to the room I had her Haberman feeder and she could have taken the pedialyte with much more ease. As we made our way to the room I almost had it out with one of the nurses. It was all I could do to keep my calm. She kept making comments about how she couldn't understand why I needed to change the bottle and why she wouldn't keep the paci in her mouth and on and on. I almost blew my top. But instead, I just said she has a soft cleft palate as noted in her chart and it's like sucking through a straw with a hole for her, she can't manage it like normal babies without a cleft. The nurse rolled her eyes. I thought "Bring it ON" but I just held it together. Then we found out they were taking us back to the Bone Marrow Transplant floor to the same room as last time, a very sterile uninviting floor for patients that are not in need of intensive care treatment. Anyways, as we prepare to enter by putting on the "blue shoes" and washing our hands the same nurse tells Dennis to open the second door. However, this nurse hadn't gone through the precautions that all of us had done and seen other nurse do. So Dennis politely told her, "I'll open the door after you wash your hands". I think she was taken back to have a civilian tell her to wash her hands, I mean she should have known better. Anyways, we are in the room now and awaiting consultation with the speech therapist for her feeding. She is resting well as long as someone is holding her. Praying for a good night for both of us.

Waiting...Waiting...Waiting..and Praying

We arrived safely to Raleigh last night and stayed with our friends Heather and Stephen. Kyleigh rested well because she slept in the swing for over half the night and the rest of the time she slept on her daddy's chest. When we got to Duke this morning, they took us straight back and started to get her ready. Once again she is in a huge gown for such a little baby girl. All seemed well until we met with the doctor. We spoke of how her right eye (the one from surgery last week) was pink and cloudy. She questioned us about how long it appeared this way and about eyedrops. My heart skipped a beat. Eyedrops??? We emailed her on Saturday asking about whether the orders were correct and we were supposed to stop eyedrops. She never replied yes or no, instead she responded for us to do a different eyedrop. I guess I should have re-asked the question because as it turns out it may have compromised her eye. She should have been getting all drops for the past week, not just the three days post-op. I wanted to throw up right then. I started shaking and crying. What if it is all my fault. I can't believe this. Of course the doctor said she felt responsible too for not making the directions clearer to me. Oh my goodness. Immediatlely I began praying and so did Dennis. Within 30 minutes the doctor came out and told us that she was fine. That the right eye was okay and we didn't need to worry, she was sorry if she overreacted to the mistake and wanted us to know it was okay before beginning cataract surgery on the left. PRAISE GOD!!! So now, we sit in the waiting room and we are just waiting and praying that this surgery is successful.

2nd Surgery Tomorrow

Kyleigh has recovered from her stomach virus but now has an ear infection. She was a miserable baby last night and is finally resting peacefully in her swing. She started on an antibiotic that will hopefully give her some relief soon. She is still scheduled for surgery tomorrow to remove the cataract from her left eye. Due to the impending bad weather we are leaving tonight to stay with our friends Heather and Stephen in Raleigh. This way we will have less distance to travel to the hospital in the morning. Currently, I am still awaiting to hear from the hospital regarding her arrival time tomorrow morning. We are sure it will be an early time again as it was last week. I'm praying that surgery will go well again and that we will return home quickly. 

Journey to Recovery

It has been a long 4 days since her first surgery. Kyleigh decreased her eating and started running a fever on Friday night of 100.5. We took her to the doctor on Saturday and they ran a urine analysis and blood work to rule out a bacterial infection. Her nasal passage has remained clogged and congested on the left side. She was extremely cranky. All of the lab work came back normal so they asked us to bring her back in on Sunday. 

She continued running a fever through the night and started having diarrhea. At the same time she was only taking in about 1 oz at a time. This morning at the pediatrician she weighed 6 lbs 9 oz which is a 4 oz loss from Saturday - just 24 hours prior. It seems she had contracted a virus and was on the way out of it since the fever and diarrhea were subsiding. We have had to start antibiotic eye drops on the left eye to make sure it doesn't get infected as the mucous from her nose creeps up into the eye. 

As if this wasn't enough to keep me hopping, Dennis and I both started having crampy stomachs today and Kaitlyn was complaining of a tummy ache. Low and behold Kaitlyn leaned over to hug me and threw up all over me and the floor -- lovely!!! It's official..I have a house of sickness!! Seriously, could life get any more complicated for us. Someone has been sick in this house since the week Kyleigh was born. Enough is enough already---I need everyone healthy!!! 

Okay...I'm through with my ranting, but seriously could we get a break from sickness anytime soon?