Firsts

"Too bad the weather is crummy and mom said I can't go out today... I am looking too cute!"

This week the Smithson family has had several "firsts." On Sunday Logan was invited to a classmate's birthday party at Skate Country. This was Logan's first time on skates and he thought he was going to just "take off!" Needless to say, he spent more time on the floor than standing, not to mention skating! Although he kept falling, with his will and mom's muscles, he kept getting up and trying again. By the end of the party, he could "walk-skate."

Logan James skating for the first time!
This is the only picture I was able to take with Logan standing up!

Although I am not sure I was ready for Lainey to reach this milestone, she began holding her bottle this week! Sid was not moving fast enough and Lainey was ravenous, so she grabbed the bottle from him and fed herself! At least we still have a while until she can take her enzymes without help!

This "Bug" was tired of waiting for her dad to give her what she wanted, so she took care of it herself! Dad better watch his wallet!

It is amazing what the removal of tonsils, adenoids, and ear wax can do for a non-English speaking 2-year-old! This week Liam started talking more and much clearer than ever! It is almost like he is hearing things for the first time and actually able to repeat words appropriately! He has called himself "Wawa" for several months and now can say Liam! Logan has been "Ogie" and Lainey has been "Beebee." Logan and Lainey Bug are two names he says several hundred times a day, although they are not always used in a nice manner! We are totally shocked by the dramatic change his speech has made. He seems much happier and less inclined to throw a fit now that he is able to communicate his wants, needs, and feelings! It is too bad the doctors will not remove tonsils until a child is two and one half!

Liam ~ "One tough cookie!"

Yesterday Lainey had her second dosage of Synagis. We had to weigh her at home and report her weight to the nurse in order for her to administer the correct dosage of Synagis. Lainey weighed in at 14 lbs. 8 1/2 oz! We are thrilled by this weight! Last month at Dr. Caplan's office, she weighed 13 lbs. 1 oz. This is a gain of almost one and one half pounds! On Monday we will be going back to the CF Center to see Dr. Caplan for Lainey's monthly check-up. At this time we will find out if she has gained any more weight. She loves eating rice cereal and baby food with added vegetable oil, which has proven to help her pack on some weight! Check back Monday evening for an update on our visit.

On Monday I will also go to the doctor to have repeat labs drawn. Hopefully we will learn something from these labs. If the meds I have been taking for a little over a month are doing what we intended them to do ~ increase iron levels, lower prolactin levels (breast milk release), raise vitamin D levels, higher estrogen levels, and higher kidney function ~ then I will feel like it has been worth the 5 pounds I've gained due to the meds! I am still not totally convinced that everything is okay, but I will wait to see what the tests reveal. I am continuing to lose an abundance of hair, feel light headed, have hot flashes, and have several pains associated with my right ovary and my kidney....did I mention weight gain? With all of this, I am trying to direct all of my time to the kids and making/monogramming things to keep my mind off of my health. Teaching 21 first graders and having 3 kids of your own, can help anyone take their mind off of any health issues they may be having! :) Until I get any results, I have more exciting things to think about....such as becoming an aunt!

Tuesday, Dayna is supposed to be induced and we will finally get to see Little Miss Lilly Anne! I will be posting pictures on Tuesday if Lilly Anne decides to let the pitocin do its trick!

On Wednesday, mom and dad are heading to Emory for their appointments with the Cardiologist. Mom has been experiencing odd pains in her arms and chest over the last several weeks. With the recent death of one of their close friends, they are in need of a check-up! Through David's death last week, just a little over a week from hanging with mom and dad at the Georgia/Florida game, we have learned that there are no guarantees to life. Both mom and dad have defied many odds. I have had many more years with them than many doctors have ever expected. Selfish as it may be, it has not been long enough! I am praying for a good report after their visit with Dr. Book.

Please continue to pray for Lainey, the boys, Sid and I, Dayna and Brad, Lilly Anne, and mom and dad! This week will bring a little more craziness into our lives, but we are ready to take it on! Thank you for your continuous lover, prayers, and support! We need it and truly appreciate it!

Love Always,

DeAnn and family

Growing

Today we went to the Cystic Fibrosis Center for Lainey's 3rd visit. Since this time last month Lainey has grown 1/2 inch and gained 1 1/2 pounds. She is now 23 1/2 inches long and 10 lbs. 15.9 oz! Still not the 3 lbs. they had wanted to see (she is still in the 10th percentile for weight), but we are working on that. Due to the frequency and consistancy of her bowel movements, it has been concluded that changes with her enzymes need to be made if we wish to see an increase in weight. To assist in weight gain, Dr. Caplan decided to try upping her enzymes to 2 per meal and taken in applesauce. Originally we tried the applesauce, but it was way too difficult to feed it to a newborn. Now she is loving the addition of applesauce and doesn't seem to mind the new requirement! The thoughts behind the applesauce are that the enzymes will make it to the small intestine before the formula. This is important because the enzymes aid in digestion, fat and vitiamin absorption, and in the end ~ weight gain. If after a week of using this new regimine we don't see any changes in the number of bowel movements she has per day (4 or less), we will then change to another brand of enyzmes. As we have learned, this is a trial and error situation. Every person with CF is different and their body's needs are constantly changing.
As for Lainey's lungs, all is clear. We have been worried about her lately with her sinus drainage, cough, sneezing, and stuffy nose. Thanks to the antibiotics and chest physical therapy, Dr. Caplan was happy to report that all sounded nornmal in her little chest. We will be working very hard in the following months through the cold and flu season to keep the germs away. These will be challenging months, especially with myself working with 20 first graders, Logan in school, Liam in daycare, and Sid working in the ICU. Hopefully we can keep any and all illnesses to ourselves! To aid in her protection against RSV, Lainey will begin taking Synagis. This is very expensive and will take from September to April for Lainey to receive the entire dose. A nurse will come to the house once a month to give Lainey her shot. We will have to weigh her on a digital baby scale (they will provide) and call in her weight to assure she receives the appropriate dosage. Thank goodness for insurance!
Overall, today's visit was great. She is continuing to grow, have good chest sounds, and most importantly, she seems completely content with everything! The doctor did send CF testing kits home for us to collect cell samples from Logan and Liam. We are not sure how long it takes to receive the results, but we will keep everyone posted. I will be tested at Lainey's next visit. On September 17, both Gigi (my mom for those of you who do not know that Gigi is her name to Logan, Liam, Lainey, all of their friends, as well as their teachers) and Lainey have appointments in the same area. We will go to mom's cardiologist at Emory first and then to Lainey's CF appointment.
Thank you for all of the encouraging words, thoughts, and prayers. Please help us pray for good health and an uneventful winter in relation to Lainey's CF progression. We are lucky to have such wonderful friends and family, for they are the ones that keep us strong! Thanks to my parents, Lainey will have a more protected winter by staying at their house.

Lainey's 2nd CF appointment

Hello. Yesterday Lainey (8 weeks old) had several doctor appointments and I am happy to report that she is doing awesome! Our first appointment was with the surgeon. After looking a her incision (from surgery when she was 5 days old) and the site where the t-tube entered her colon, Lainey was given a thumbs up! No more visiting the surgeon unless she were to need future surgeries! Our second appointment was with her team at the Cystic Fibrosis Center. Her team consists of a nurse, respiratory therapist, social worker, dietitian, and doctor. Lainey weighed in at 9 lbs. 6.7 oz! This was a gain of almost one and one half pounds in 3 weeks!! She also grew another 2 inches to make her 23 inches long! Her weight has been a huge concern of ours, thus putting most of our effort into fattening her up! The more weight she gains her first three years of life, determines how well she will do as she progresses in her disease. The team would still like to see her gain 3 pounds per month, but they were satisfied with what she gave them this time! To assist in gaining weight, her enzyme intake has increased to one and one half capsule per feeding. Since the capsules assist in food absorption, they are hoping this will help her to gain even more weight. Anemia is also a concern with Cystic Fibrosis. Since she has been whiter than me (that is hard to believe) indicating low iron levels, her iron intake has also increased. Aside from learning how to perform chest physical therapy for preventative measures, her lungs sounded great! For now, and hopefully forever, her Cystic Fibrosis is only effecting her digestive system. Although she will be on enzymes for the rest of her life, we are hoping to prevent any and all respiratory infections that might reduce her lung function. With the new school year quickly approaching, please pray for my parents as they will be caring for Lainey. Since even the smallest cold could send Lainey to the hospital for a couple of weeks, the doctor strongly suggests keeping her out of daycare for at least one year! Taking care of Lainey will be a big job for my mother since she is in poor health. It will also keep my parents from traveling; something they have enjoyed since dad retired last August. We are fortunate to have them care for Lainey. She is guaranteed to be spoiled rotten at the end of each day! Thank you to everyone for your thoughts, prayers, words of encouragement, and gifts. To learn more about Cystic Fibrosis and how to help find a cure, check out the Cystic Fibrosis Foundation web site at www.cff.org .
Sincerely,
DeAnn, Sid, Logan, Liam, and Lainey

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 is HOME!!!

Thank you for all of your prayers...God told the doctor to let her come home!!! It was a huge surprise when my mom, mother-in-law, and I arrived at Egleston this morning with a cooler FULL of breast milk (the night nurse said they needed more) and we were told that Lainey was going home!!! I know the doctor did not make the decision to send her home on her own...it had to be God being pressured by everyone's prayers! Since this was an unexpected turn of events, we did not have her car seat, diaper bag, going home outfit, or her dad. Discharging from the hospital tends to take forever, therefore Sid was able to drop our boys off with Papa and head down to Egleston to pick up his girls! After several pages of instructions, 4 prescriptions, 3 doctors appointments, and visits from 6 different people who have taken care of Lainey with instructions of their own, at 4:00 we were finally walking out the NICU doors ~ Lainey's home for the past 25 days! Although getting home was rough due to the traffic and not one pharmacy in Gainesville having the enzymes she needs before each meal due to her Cystic Fibrosis ~ we finally made it! We know it won't be easy with the many trips to the doctors at Egleston as well as to the pharmacy for the 240 enzymes pills she needs each month, but we are thrilled to be home ~ all 5 of us! Thanks again for all of your thoughts and prayers. Please keep them coming ~ Lainey's Cystic Fibrosis is a lifelong disease. We would love for everyone to meet her, so look for us out and about in town, or give us a call and come visit!
Sincerely,
DeAnn, Sid, Logan, Liam, and LAINEY Smithson

P.S. Lainey will already be a month old on Friday ~ times flies even when you are not having fun!!

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