| The Smithson Family Sid, DeAnn, Logan, Liam, and Lainey |
Welcome to The Smithson Family web page.
This page has been created to keep in touch
with our friends, family, and co-workers. We
hope you enjoy seeing our family grow and
change through the pictures and updates we
have on this page. Thank you for visiting!
This page has been created to keep in touch
with our friends, family, and co-workers. We
hope you enjoy seeing our family grow and
change through the pictures and updates we
have on this page. Thank you for visiting!
June 24, 2008 ~ 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
June 18, 2008 ~ 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!!
June 17, 2008 ~ 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
June 11, 2008 ~ 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
June 7, 2008 ~ 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
June 2, 2008 ~ 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 Mucamist in her t-tube
(the tube in her stomach.) After the Mucamist 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
May 29, 2008 ~ 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 Mist 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
May 28, 2008 ~ 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 pick 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
May 25, 2008 ~ 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).
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
June 18, 2008 ~ 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!!
June 17, 2008 ~ 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
June 11, 2008 ~ 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
June 7, 2008 ~ 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
June 2, 2008 ~ 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 Mucamist in her t-tube
(the tube in her stomach.) After the Mucamist 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
May 29, 2008 ~ 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 Mist 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
May 28, 2008 ~ 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 pick 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
May 25, 2008 ~ 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).
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