8 months ago today....

Lainey ~ 2 days old ~ May 22, 2008

8 months ago today was the day doctors told us that our perfect baby girl would need to have x-rays of her stomach. 8 months ago today the nurse force fed our baby in all attempts to produce her first stool. 8 months ago today our baby girl began to spit up yellow bile and show signs of a distended stomach. 8 months ago today I was asked to call my husband so the doctors could talk to both of us about our baby girl. 8 months ago today we were told that our 2 day old baby girl had a bowel obstruction. 8 months ago we were told our sweet baby girl would be taken to the NICU. 8 months ago today our baby girl was ripped out of our arms and whisked away. 8 months ago today our baby girl was severely dehydrated which resulted in fluids being pushed through an IV in her head. 8 months ago today a tube was placed down our baby girl's throat and into her stomach. 8 months ago today we were instructed to wash our hands and arms for five minutes before visiting our baby girl. 8 months ago today we were told that our 2 day old baby would most likely need surgery. 8 months ago today we sent visitors away without seeing our new bundle of joy. 8 months ago today we cried like we had never cried before. 8 months ago today we had to call our family and friends to let them know the status of our precious baby girl. 8 months ago today we prayed more than we had ever prayed before. 8 months ago today our perfect family was changed forever....

Lainey in NICU ~ 2 days old ~ May 22, 2008

Today, 8 months later, we are still changed and forever changing. Lainey has been a blessing to our family. I never imagined how one perfect little baby can make such a change, an awareness, an impact, a difference in and on so many people. Her smile could fool anyone into the falsities of Cystic Fibrosis. Lainey truly makes CF look good! God gave us this perfect child to be our teacher, our leader, our strength, our believer, our endeavor, our light.......and for that we are forever grateful. Thank you to everyone who has helped us over the past 8 months. Thank you to everyone who has prayed for us over the past 8 months. Thank you to everyone who has followed our story for the past 8 months.....and hopefully will continue following us and praying for us for many years to come. We love you!

The Smithsons

Sid, DeAnn, Logan, Liam, & LAINEY

Lainey ~ 8 months old ~ January 2009

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!!

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

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

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