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

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

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

Lainey Moved to the Swing Beds!

Hello All! Today, May 28th, was a great day for Lainey and our family. Lainey (8 days old) was taken off the ventilator last night and was weaned from the morphine. She is still on pain medication, but it is like Ibuprofen, therefore she is more alert. They took out one of the two IVs in her head and put in a pick line. The picc line will make it easier for them to draw labs and give nutrition. This evening they were taking out the other IV in her head that was used to give her blood (her blood was low yesterday, so they had to give her 49 cc). There has been some stool coming out of the t-tube in her stomach and they plan to begin using an enzyme rinse through the tube tomorrow. With the rinse, they are hoping that she will begin having bowel movements and clearing out her intestines. She will continue to have the tube down her throat to clear out her stomach. When it runs clean and she begins feeding, they will remove the tube in her throat. She has gained 10 oz. since she has been at Egleston (although most of the weight is from the meconium in her intestines). Lainey was also moved to the swing beds, a step-down unit from the NICU. No the beds don't really swing! It is an in-between unit from the NICU and going to the floor. This was a big accomplishment so early! The doctors were predicting she would move there by the weekend, but it is Wednesday and she is there!! As soon as she heard my voice today, she smiled...and melted my heart. Today I got to hold her for the first time since Friday. I was overwhelmed with emotion. Holding her today was a result of everyone's thoughts and prayers. I know God has had his hands on her. Thank you so much for everything! We are so lucky to family and friends like you.
Sincerely,
DeAnn and Family