We've Caught the Christmas Bug!

Lainey at the Cystic Fibrosis Center for an appointment.

Today my mom had an appointment at the Adult Cardiac Clinic at Emory and Lainey had her monthly check up at the Cystic Fibrosis Center. This was a long day, but not too much change ~ this is good for some areas of both mom's and Lainey's check up, but not so good for other areas!

Mom's numerous doctors think she doing well, but will be doing better when she gets over her cold. Last week she went to her local doctor only to find out she was about a day away from developing pneumonia! After a week of medications, she sounds and feels much better. Her doctors at Emory want her to begin her breathing treatments again when she is completely over her cold. The breathing treatments were working well for mom for a long time, but her body quit responding as well after several years. In July the doctors took her off of the treatments and put her on another medication given through a needle in the stomach! After a week in the hospital and a week at home, mom was in so much pain that she never left the house. Her quality of life was effected by the medication, not to mention the pain was horrible. When the doctors took her off the medication, they decided to wait on starting her treatments again. Since August, mom has been able to feel a huge difference in her energy level without the breathing treatments. Hopefully when she begins the treatments again in the next few weeks, she will feel better. The biggest downside to the treatments is the strict regimen it requires. Every three hours she must use a nebulizer to complete her 10 minute treatment. This is quite difficult when you try to go out shopping or when you are driving somewhere. Although it can be inconvenient, anything to keep mom happy and healthy is something we can deal with!

Lainey also had some good and some not so good reports at the doctor today! Her height was 26 .75 inches and her head was 17.5 inches ~ both of which were the same as when she went to her regular pediatrician two weeks ago. Her weight was 15 lbs. 3.8 oz. This is where the issue lies! She has only gained 4 oz since her appointment at the CF Center 1 month ago! She weighed less that she did at her pediatrician's office two weeks ago! Our new plan for weight gain is to begin feeding her every 3 hours, only formula. If she finishes 5 oz. of formula, she can have baby food. Her dietitian wants her to take at least 30 oz of formula per day. Currently she is only consuming about 20 oz. If she doesn't gain weight or drink the 30 oz. per day within the next couple of weeks, then we will need to make her formula higher in calories. Hopefully that will work or they may need to start a feeding tube! Blah!

Other than her very little weight gain, Lainey checked out well. Her lungs sound clear, she was at 100% oxygen level, and she is developing appropriately. We are so thankful for her good health. Please pray that she gains weight. We are sure she will be her goal weight by our next visit on January 16th.

Please continue to check back for more pictures during the holiday season. Below are pictures from Lainey's visit to the CF Center. Enjoy!

Merry Christmas and Happy New Year!

Love Always,

The Smithsons

Sleepy Bug ~ Her 2 to 3 hour visit at the CF Center always wears her out!


Night Night Buggy!

Lainey and "Yellow" ~ "Yellow" was a Christmas gift from the doctors, nurses, and staff at the CF Center.

Lainey and her new friend, "Yellow."

Now is a great time to donate to the Cystic Fibrosis Foundation! Any amount will help find a cure for Cystic Fibrosis! Thank you. To donate directly in Lainey's honor, please click on the link http://www.cff.org/GiftReg/DeAnnSmithson .

Vacation

Hello! It has been a while since I have updated everyone on Lainey and her progress. We had a wonderful vacation at Flagler Beach just north of Daytona. The five of us spent 9 days in our camper just yards from the beach. We are so lucky to have an awesome family with whom we spent our vacation. My parents, grandparents, three uncles and their families, my sister and brother-in-law, and his family were all together for vacation. The boys absolutely had a blast on the beach! Before we arrived, they had already been at the beach for a week with my parents. Tough on my parents, nice for Sid, Lainey, and I getting to know each other. It was a much needed break from the hospital, doctors visits, and stress of the past month! We came back last Saturday, but our 8 hour trip turned into a two day 12 hour trip! Traveling with 3 kids under four years old, 2 in diapers, 1 that likes to check out every bathroom, and all three that like to eat ~ it was interesting to say the least! Sid began nursing school this week and boy what a transition for all of us! He is in school 4 days a week, then works 12 hour shifts in ICU at NGMC the other 3 days in the week! Our time with him is limited, therefore we cherish every minute...and will until he is finished with school in 2 years!
Lainey gained half a pound while we were on vacation (this is what happens when you hang out with my mom...she likes to feed anyone that will eat!) The doctor has decided that she gains weight better when she is taking only formula, therefore the breast feeding has ceased. I wasn't opposed to that, but the formula is $26 a can and the can lasts for 4 days!! YIKES! We are fortunate to have a very knowledgeable case manager at the Cystic Fibrosis Center. She has helped us to apply for several grants, waivers, and government assistance programs in ways that income is not the deciding factor in obtaining assistance, but is based on the disability and it's longevity. Since Cystic Fibrosis is a lifelong disease that requires many hospitalizations, medications, breathing treatments, possible organ transplants, and leads to premature death (median age of survival is 37 years old), we are confident that we will qualify for much needed assistance in paying hospital bills, doctor bills, co-pays, deductibles, and medications.
Next week will bring new information with the two doctor visits we have scheduled. We are first meeting with her surgeon for a checkup, then we will go to the Cystic Fibrosis Center for her monthly checkup and physical. We are praying that she will be at least 9 lbs. when we go for her visit on Wednesday. The doctors want her to gain 3 lbs. per month, but we will be happy if this month brings us at least 1 pound! We will let you know what the doctors think of her progress after her visit next week. It is amazing how healthy she looks, yet knowing what she is dealing with physically is heart breaking. Please continue to pray for her good health and strength for our family. Thank you for all of the wonderful meals, cards, gifts, and comforting words. We are eternally grateful.
Sincerely,
DeAnn, Sid, Logan, Liam, and Lainey Smithson

Lainey's 1st CF appointment

Today Lainey, Sid, and I went to the Cystic Fibrosis Center at Egleston for Lainey's first CF appointment. Everyone at the center is so very nice and welcoming. We met a few of the people that are par of Lainey's CF Care Team ~ the respiratory therapist, dietician/nutritionist, nurse, case manager, and her primary doctor. Sid and I learned how to perform clapping exercises on Lainey's chest and back in order to break up any mucus in her lungs, used now for preventative measures only. She was weighed in at 8 lbs. 1 1/2 oz. This was a gain of 1 1/2 oz. in 6 days. Not too bad, but we still have to catch up for lost time, therefore we have to pack in more calories! She is now 21 inches long...tall and skinny...she can't possibly be related to us!!! :) The dietitian wants to see her gain at least 3 pounds per month in order to catch up to her height/ weight ratio. She is currently in the 10th percentile for her weight and 50th for her height. It is important that she gains weight, possibly is even chunky for the first 3 years of her life. The more she grows, the better functioning of her lungs. How well she thrives until her 3rd birthday will directly effect her health for the rest of her life. In addition to the extra calories we will be adding to her breast milk bottles, she will also receive 1/8th of a teaspoon of salt. People with CF tend to lose salt through their sweat, therefore it must be replenished through their food. Dr. Caplan, Lainey's CF doctor said that she looked well and checked out to be very healthy! He performed a throat culture to check for any infections that may be brewing. They like to catch anything before it sets up in her lungs. He also collected a stool sample to check for fats. If there are too many fats in her stool, then she will need to go up on the amount of enzymes she takes at each feeding. The enzymes help in fat and vitamin absorption. Lainey also qualifies for free enzymes and vitamins with enzymes until she is 3 years old! This helps a tremendous amount...about $2,000 we will not have to pay out of pocket for these two medications!! Some of the best news of all is that Dr. Caplan said it was okay to take her to the beach on vacation!!! We are so excited that we will all be able to get away for some family time at the beach for a week! Thanks again for continuing to pray for our family. Now we need prayers for weight gain and no harmful bacteria lingering in Lainey's little chest!
Lots of Love,
DeAnn, Sid, Logan, Liam, and Lainey

4 weeks old

Hello! Well....Lainey is still in the hospital at Egleston. &Today she turned 4 weeks old and has been in the NICU at Egleston for 24 days. We are not exactly sure when she will be coming home. A few factors have been keeping her there, such as the t-tube (in her intestines), feedings, weight gain, enzymes, and stools. Today they took her t-tube out, so we are grateful to have one less thing on our list that is keeping her there! Since people with Cystic Fibrosis have a difficult time gaining weight, the doctors are fortifying the breast milk she is drinking. On Friday she had 30+ stools indicating a problem with either her milk, her enzymes, or both. After several stool samples the doctors have decided to go from one capsule of enzymes at each feeding to one half at each feeding. They have also changed her formula fortifier to a more sensitive formula that they are adding to the breast milk. Although she is eating well, she is losing most of it due to the high number of loose stools she is having each day. Hopefully this change in the enzymes and fortifier will do the trick. Once her stools and weight gain are normal, she will get to go home. We have given up on asking when they anticipate her going home ~ they will no longer tell us when, rather they say it is up to Lainey! Please continue to pray! We need prayer for regular stools, finding the correct formula fortifier to create regular stools, determining the correct amount of enzymes at each feeding, and WEIGHT GAIN!!! For all of you trying to lose weight, just send it to her!!! Thanks again for everything you have done. We are hoping to have our princess home soon.
Love,
DeAnn, Sid, Logan, Liam, and Lainey Smithson

Enzymes

Here is the newest update on Lainey. Today Lainey is 3 weeks and 1 day old. She is up to 7 lbs. 12 oz. (she weighed 7 lbs. 3 oz. at birth, and 6 lbs. 12 oz. when we arrived at Egleston). Today the doctors took out the PICC line in her arm, ending her lipids (fats) IV and clear fluids. They also quit the irrigation into her bowels and clamped off the t-tube. They haven't removed the t-tube in case she has any more issues going to the bathroom in the next couple of days. She is up to eating a little over 2 oz. of breast milk with powdered formula added to increase her calorie count. People with Cystic Fibrosis usually have great difficulty gaining weight, therefore the doctors want to add as many calories as possible to her diet. In speaking with the Cystic Fibrosis doctor, we have learned a lot about what the future will and may bring for Lainey and our family. She will have an appointment each month with the Cystic Fibrosis Center. Her doctor is very curious and eager to learn more about her stands of Cystic Fibrosis. People with CF are born with the delta F508 strand and another mutation of the 7th chromosome. Approximately 66% of people born with CF have 2 strands of delta F508. This is one of the worst cases of CF, causing digestive and respiratory problems and eventually causing death from numerous infections in the lungs. For the other 34% of people with Cystic Fibrosis, they have delta F508 and one of the other 1500 + mutations of the 7th chromosome. Lainey has delta F508 and R560T. Her doctor at the CF center looked through the Georgia data base on known CF patients and she is the only patient that has the combination of delta F508 and R560T!! She is also gaining weight...another plus for people with CF, whom usually suffer from "failure to thrive". She is definitely testing the doctor's knowledge and curiosity, as she is unlike any case he has ever had! She also hasn't had any respiratory problems! After performing several tests on her stool, the doctor found from one test that she has too many fats in her stool. These fats are usually absorbed by the body in people that do not have CF. Since she has too many fats, the doctor has decided to put her on enzymes. Starting yesterday and for the rest of her life, Lainey will need to take enzymes before each meal or snack in order to properly digest her food. This has been difficult since newborns can't swallow capsules! Before each feeding I have to break open the enzyme capsule, put the enzyme beads in applesauce, and finger feed the applesauce and enzymes to her!! This takes forever, but I am sure she will catch on soon! Originally we thought she might go home this Friday, but the doctors are saying that it may be Monday or Tuesday of next week. We are just ready to bring our "Lainey Bug" home!! Hopefully she will soon get to meet all of the people who have been helping to bring her home through all of their words of encouragement, thoughts, prayers, and support. We also appreciate all of the people that have called and taken care of my parents (Dwight and Diane Schwartz) with meals and in helping with our boys! Thank you all!
Sincerely,
DeAnn, Sid, Logan, Liam, and Lainey Smithson

Bad News

Hello! I am sorry that I haven't posted an update in a while. My parents have been an awesome help! They spent the $4.75 a gallon on diesel and took the kids and I to Stone Mountain for the week in their motor home. Stone Mountain camp grounds is about 10 minutes away from Egleston ~ much better than the hour plus ride from Gainesville! Being there gave my boys the opportunity to play and have a "mini vacation,"while I was able to spend more time with Lainey. On Monday they began feeding her 5ccs of milk. They also moved her to her own room in the NICU. Having your own room is the last place to move before going home! They have increased her feedings each day, every 3 hours. She has been very sleepy and not waking to feed, thus much encouragement has been needed! The fear of her having a feeding tube has made us pressure her to EAT! Last night was the first night she ate voluntarily, we think because they lowered the amount of IV nutrition she is receiving (and the pressure from us!) We did learn yesterday morning that Lainey does have Cystic Fibrosis. We don't know much about the illness, but we will soon have an appointment with the Cystic Fibrosis Center here at Egleston. The doctor did explain that most babies present the illness with respiratory issues, but Lainey's happened to present itself with digestive problems. Although this is what sent us here (digestive problems due to Cystic Fibrosis), the doctors do not think she will have to take enzymes to breakdown her food ~ at least for the time being. As long as she continues to eat, poop, and gain weight (something that is difficult for CF babies), then she will be on the right track for going home. If Lainey continues to do well, the doctors are hoping to release her on Friday. This has been very hard for us, but we have decided that God must have a plan for us and our new baby girl. Please continue to keep us in your thoughts and prayers. We definitely need them and we have truly felt them in our most desperate times. Thank you all so much for everything.
Much Love,
DeAnn, Sid, Logan, Liam, and Lainey Smithson

Lainey is getting to EAT!

Hello everyone! I just wanted to update everyone on Lainey's progress. She is now 13 days old, 11 of which she has spent in the NICU, 9 of the 11 days have been at Egleston. Thursday she finally pooped! Yeah! Her first few poops, although not much, were completely on her own without help from irrigation. They began irrigation Thursday afternoon with the help of Mucomyst in her t-tube (the tube in her stomach.) After the Mucomyst irrigation, the real stuff began! All of the meconium that had blocked her intestines was finally coming out. Yesterday the nurse took her og tube out (the one in her mouth that was cleaning out her stomach.) This was awesome because now she was able to cry and it was one less tube coming out of her little body! Today she made even more progress. At noon she began feedings of 5 ccs of breast milk every 3 hours. Although 5 ccs is only 1/6th of an ounce, it is still food...which she has not had since she was 2 days old! They also moved her to her very own room! Now we have to make sure she can digest the milk and continue to poop. Each day they will increase the amount she can eat as long as she shows progress! It feels great to be able to report good news to everyone. I know it is possible due to the amount of people who have been thinking about and praying for Lainey and our family. We truly appreciate everything! Please continue to pray for us and hopefully my next email will say that we are bringing her home!
Sincerely,
DeAnn, Sid, Logan, Liam, and Lainey

POOP!!!

YEAH for POOP!!! Today Lainey pooped for the first time and without any help from irrigating her bowels! She was much more alert today! I got to play with her a lot and I got to change a few poopy diapers! Around 3:00 they began the Mucosa Myst to irrigate her bowels. It was already clearing things out by the time I left at 4:30! We are truly blessed to have so many people praying for her. We have been praying for poop, and God answered our prayers! Thank you and please continue praying for Lainey and our family ~ it is making this difficult time in our lives a little more bearable each day. We are looking forward to many more poopy diapers and hope to soon begin feeding her!

Love,

DeAnn and family