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

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

Lainey's transfer to Egleston

Hello All. Thank you so much for all of your thoughts and prayers. We are just having to take things one day at a time. Today, Sunday May 25th, Lainey had surgery at Egleston. She is 5 days old and has yet to have her first bowel movement. They believed that there was a spot in which her colon was not connected, therefore she wasn't able to go to the bathroom. After opening her, they realized that everything is connected. This is great because they did not have to cut or sew her colon. The issue that continues to be a problem is that the meconium (the first stool a baby has made from amniotic fluid and stomach bile) is unusually thick. The doctors were unable to manipulate the bowel in a way that would allow the meconium to pass through the colon. They put a tube into her colon to allow them to loosen the meconium with special liquids and for them to be released. This is a step they take before an ilestomy (similar to a colostomy, but it can be reversed). They are hoping that this will loosen things up enough so that she can begin having bowel movements. This will take approximately 4 days to occur. After passing her first few bowel movements, feeding will be presented. She may have to be tube fed if she does not tolerate breast milk or formula. They are calling her condition, Meconium ileus. With what the doctor saw, she thinks Lainey has a classic case of Cystic Fibrosis. A geneticists will test Lainey for Cystic Fibrosis some time this week. We will most likely be at Egleston for 3 weeks, but it could be longer if she has difficulty with feedings. It could also take longer if they find it to be true that she has Cystic Fibrosis. I know this is a lot and maybe more than you would like to take in, therefore you can understand how difficult this has been on our family. Our dreams (and my checklist) of bringing her home from the hospital on Saturday changed into following her in the Angel II transport to Egleston. All we can say is thank you for everything. I know that your thoughts and prayers have helped her and will continue to help her and our family through this difficult time. Thank you again for everything.

DeAnn and family

Meconium ileus: Obstruction of the intestine (ileus) due to overly thick meconium, the dark sticky stuff that is normally present in the intestine at birth and, after trypsin and other enzymes from the pancreas have acted on it, is normally passed in the feces after birth. Meconium ileus results from a deficiency of trypsin and other digestive enzymes from the pancreas, as in cystic fibrosis (fibrocystic disease of the pancreas, mucoviscidosis).

Lainey's Cystic Fibrosis Story

Lainey Noelle Smithson was born on Tuesday, May 20, 2008. She weighed 7 lbs. 3 oz. and was 19 1/4 inches long. My c-section was routine and all went well. Lainey's APGAR scores were high and all appeared to be perfect! We had two days full of hugs, kisses, snuggling, visitors, and pictures!
On May 22nd Lainey's pediatrican became concerned because Lainey had not passed her first stool. X-rays were ordered only to find a blockage in her colon. The doctors quickly rushed her to the NICU. Once in the NICU Lainey was poked, proded, and x-rayed. The doctors determined her blockage may be due to unconnected bowels. Lacking the ability to perform pediatric surgeries, the doctors at Northeast Georgia Medical contacted Egleston.
On May 24th Lainey was taken by the Angel II ambulance to Egleston.Sid and I spoke with the doctor upon our arrival at Egleston only to learn that Lainey would have to have surgery the next morning. We were scared but confident that Lainey's surgery sounded as though it would be routine for the doctors. We were unable to stay with Lainey at Egleston due to the level of care she was receiving in the NICU and the unavaiablity of beds for parents. This was the longest night of our lives!
On Sunday, May 25th, Lainey underwent surgery at the young age of 5 days old. The surgery took approximately 3 and a half hours, but it felt like a life time. Lainey's doctor greeted us in the waiting room to report on Lainey's surgery. The doctor showed us several pictures of Lainey's colon and explained that everything was infact intact. She called Lainey's obstruction Meconium Ileus. The doctor placed a t-tube into Lainey's colon to assist in breaking up the meconium. She also informed us that Meconium Ileus is a classic sign of Cystic Fibrosis. We all fell apart at this news. Since I was adopted, I was unaware of traits I may carry. Sid was sure no one in his family was ever diagnosed with CF. In addition, we already had two perfectly healthy boys!After hours of research, we quickly found that both parents had to be carriers of the Cystic Fibosis mutation gene in order to have a child with Cystic Fibrosis. We decided not to dwell on what she MAY have until we were given proof through blood work. Our goal was to get her well.
On Friday, June 6th, one of Lainey's doctors informed me that she did have Cystic Fibrosis as found through her blood work. She has the gene mutations delta F508 and R560T. I was in shock! I had spent the night with Lainey for the first time since she was wisked away to the NICU, I was tired and totally unprepared for the news of Lainey's diagnosis. Sid and I decided to be proactive and we went to the Cystic Fibrosis Center at Egleston to get some information. While looking around for information we ran into Dr. Caplan. He spoke with us for about an hour and gave us materials to teach about Cystic Fibrosis.Over the course of 29 days in the hospital, we learned more about Cystic Fibrosis than we could have ever imagined. We also learned that Dr. Caplan was unable to find anyone in the Georgia Cystic Fibrosis data base with the same two gene mutations as Lainey. The severity of Lainey's CF was unknown, even through comparison. Her Cystic Fibrosis causes pancreatic insufficiency with malabsorption.
Lainey visits Dr. Caplan at the CF Center every month for a check up and see her peditrican for routine check ups. A home healthcare nurse visits our home once a month for Synagis shots to help prevent RSV. As of now, Lainey does not have any issues with her lungs. We pray that she continues to stay healthy and does not require breathing treatments! Lainey has turned our world upside down, but we would not have it any other way! She is our princess! We are fortunate to have my parents keep her while I teach school and Sid is in school and working in ICU at the hospital. Logan and Liam love being her big brothers! Every day is an adventure! We hope that CF soon stands for Cure Found.Thank you for following our Blog! Check back regularly for details.