It's been a busy winter...we're ready for spring!

Tyler continues to be an energetic, talkative, and playful boy! I cannot believe he is soon turning 3. Tyler is so excited to be starting preschool in the fall. If it were up to him, he'd be going now! He amazes me with the things he says and what he picks up on. Tyler can spell 3 words- tyler, mom, and dad. He's working on spelling kylie's name too. He has memorized many of his books and loves when we read before naptime and bedtime. Lately Tyler has been waking up in the middle of the night and snuggling next to me, which is an aweful habit! Sometimes I march him back into his room, but other times I'm just too tired to deal with it. Hopefully we can break this habit soon.
Kylie is 9 months old. She weighs 16 pounds. She is officially on the loose and crawling and rolling all over the place. She has her 2 bottom teeth coming in. Kylie is very laid back, curious about everything, and always happy. She loves her brother and he can always make her laugh! In January Kylie had a pumonary function test performed. This told us that Kylie's lungs are very healthy right now. However, her dietian and pulmonolgist do not feel that she is gaining enough weight. People who are below the 25th percentile when comparing weight to height have worse lung function over time. 1 in 4 cfers end up with a feeding tube. Kylie is currently at the 10th percentile. We have been given 3 months to get her to really gain some weight or they will want to do a permament feeding tube. We are very upset over this and are doing what we can to put on some weight. Kylie is on high cal formula and we melt butter in her foods. We try to add as much fat as we can to every bite she takes. It's a lot of stress and pressure!
We are so fortunate to have our friends and family who have been supporting us with Kylie. I'm also so greatful to have found so many other moms and cfers out there who have helped me. We are working on a couple fundraisers right now. We are walking at the great stides walk in Naperville on May 22nd. To join our team or make a donation, please visit www.cff.org/great_strides/kerryeast.

More updates...

Tyler is officially potty trained and out of diapers! It's been so nice and well worth the 2 weeks of hard work! We're so proud of him and can't believe what a big boy he is becoming! We have been having fun with a mommy and me Music and Movement class through the park district. We are also doing lots of storytimes at the library. We took an outing with some friends to Navy Pier and visited the Children's Museum and rode Thomas the Train!
Kylie is 4 months and weighing 11 pounds. We're happy with her weight gain so far and hope it continues to increase. Kylie's next appointment with her pulmonolgist will be a tough one. She's going to have a chest x-ray and blood draw as a base-line. She will also begin her daily nebulizer of Pulmozyme. This will help thin the mucus that is supposed to build up in her lungs. Kylie continues to be a happy, content baby who is such a bundle of joy! She's eating and sleeping well and loves to smile and babble. We feel so blessed to have her in our lives!

Update

We have switched Kylie's doctor and hospital. We are now going to Children's Memorial Hospital and seeing the head Pulmonologist there. They have increased her enzymes to one capsule, her zantanc, and have suggested that we begin her chest percussion therapy once a day. She will begin nebulizers daily before the winter.
Kylie now weighs 9 pounds. She's sleeping at least one 6 hour stretch each night, which is nice! She continues to be a sweet, easy baby . She loves to be held and loves to cuddle.
Tyler is finally 23 pounds. He amazes us with how much he talks and how much he loves to learn. He's beginning to "read" books to me, he loves singing songs, and he's recently learned to locate a handful of states on his US map placemat.
We are looking forward to a stress free Wisconsin Dells trip in September.

Our sweet baby

We have been given the devastating news at 4 weeks old that Kylie has Cystic Fibrosis. It was picked up on her infant screening. We have been coping as best as we can and are trying to learn as much as we can right now about this disease. Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States. A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections; and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food. The average life span of a person with CF is in the 30s, but we are fortunate to have caught this as an infant and have been told that the life span will continue to increase and she should live a full life. At this time, we are unsure of what Kylie's future will be. She has one very common gene mutation and one rare one, so it's difficult to predict how severe she will have the disease. So far, we know that her pancreas has tested as severe, meaning she would not be able to digest her food or keep fat in. To help her with this problem, she has been put on enzymes that she takes before every feeding. She will need to take enzymes for the rest of her life every time she eats. She is also on a liquid vitamin and an 1/8tsp. salt. each day. The main focus right now is to keep her gaining weight, which she has been doing wonderfully (she's over 8 pounds now!) and to keep her lungs clear. Eventually, we will start her on breathing treatments and chest therapies daily to clear her mucus from her lungs. For more information on CF, you can visit http://www.cff.org. We want to thank our family and friends for all the support you have given us so far! We'll keep you posted on Kylie's progess!

Potty training

Although I decided to put a hold on potty training Tyler since Kylie came earlier than expected, he has been showing so much interest. He tells us when he has to do a poop, and we quickly rush him to the big "potty" and have had success numerous times in the past week. Tyler seems to be pooping on the toilet more than pottying, but last night was the first time he did both! I still have him in diapers, but am thinking I will try putting him in underwear and see what happens (although the smallest size they sell is 2T, which are still too big on him!) Tyler gets so excited when he goes and gets the biggest smile on his face. He is starting to see himself as a big boy and wants to please anyone who is willing to watch or listen (Tyler has made many phone calls to PaPa to tell him that he pooped). We are so proud of our little boy!

Kylie has arrived!

Kylie arrived 4 weeks early and on my last day of school- June 3rd, weighing 5.12, 18 inches long. My contractions woke me up at about 4:30am, but I decided to go into work anyways since it was the last day. I didn't make it too long, however. I ended up leaving school in the morning, going to the doctor's office, and was sent back home since I wasn't dilated yet, even though my contractions were 4 minutes apart. I was told to come back at 4:00 to get rechecked, however, I couldn't make it that long. My contractions got worse and were 2 minutes apart. At about 1:00, we headed back to the doctor. I was checked again and this time was dilated to a 2 or 3. He sent me to the hospital, and from there I progressed quickly. Jim and the doctor almost missed the delivery. Once my water was broke, the doctor said he'd be back in 45 minutes to check me again. But 3 minutes later, she was ready to come out. The nurses had to page the doctor twice and my mom had to call Jim since he had gone down to eat dinner at the cafeteria. Kylie was born at 6:18pm. Kylie spent her hospital stay in the NICU to be monitored since she was preterm and had some elevated blood levels. Since arriving at home, Kylie has been such a perfect baby. She sleeps 3-4 hours between feedings and she seems to eat a lot. She barely cries, even when she's hungry. I wake up because I hear her sucking on her hand. She goes right back down to sleep and seems very content all day/night long. I am so greatful that she's such a good baby so far, especially since Tyler was so colicky and up every 2 hours for 3 months.
Tyler has adjusted well to his new sister. It was a little rough at first, but each day seems to get better. He loves her so much and wants to hold her and give her lots of kisses. He has been a great big brother so far! I look forward to being home with Tyler and Kylie all summer and fall. I will go back to work November 17th. Since Kylie came one month early, I actually have one extra month to spend with her, so I'm very excited about that!

Tyler is 2!

Tyler turned 2 on April 23rd and we're getting ready for the summer and the arrival of the new baby! Tyler is full of personality. He talks all day long and doesn't stop. He's putting together up to 5 or 6 words in his sentences and pretty much communicates whatever it is he wants or needs. He continues to be a picky eater. We still can't get him to eat meat. He only weighed 21.5 pounds at his 2 year appointment. He's been sleeping in his big boy bed for a few months now and doing great. He takes a good 2 hour afternoon nap and sleeps 12-13 hours at night. We're going to try potty training in June before the baby comes, but we're not sure if Tyler will be ready or not. He likes sitting on his potty and he tells us when he has to poop, but he hasn't done anything on the potty yet. Unfortunately, the smallest underwear they sell are a bit big on Tyler too, so we'll see how this goes! We're really enjoying all the interacting and growth that Tyler has been making. He's at such a fun age right now and seems to be learning and absorbing everything so quickly. I'm really looking forward to being able to be home with Tyler and the baby all summer. I will be heading back to work mid November, so I'll have a nice extension onto the summer as well! We'll post more when he have some baby news!