Jeff and I are getting used to having a little one in the house. Gabrielle is a terrific baby. She even sleeps all night long. She will go to sleep around 8pm and Jeff gets her up at 4am to start the day with her feedings.
Gabrielle celebrated her 1st Valentine’s Day on February 14, 2009. She was a mere 1 day old. She got a Koala bear and ring from her daddy. She was all decked out in a special sleeper and bib to celebrate the occasion.
Gabrielle will eat about 12ozs a day
At her two week check up she weighed 7lbs 3oz and 20.3inches long.
Ashley
Friday, March 13, 2009
Tuesday, March 10, 2009
1st CF Clinic Visit
We went to the Cystic Fibrosis Center at Vanderbilt to meet with Gabrielle’s CF care team. We met with 8 individuals all over a two and half hour time frame. There are at least two more people that will be on her CF care team in addition to her primary pediatrician and us. We got a lot of information in this short amount of time and we told that there is a lot more information and that CF is a very complicated thing, which is a good thing. They also said to be careful about where we get our information on the internet. They told us that the two sites that we have been looking at are the best two to use. www.cff.org and www.esianson.org
To determine Gabrielle’s treatment they will have to evaluate her and get to know her over time. Treatment for CF is based on the individual patient because each patient is unique. To start with and for the first year they are focusing on nutrition as the primary treatment. Gabrielle is below average in her weight so we will be mixing a higher concentration of formula. This will give her more calories per ounce of formula so she does not have to take as much at each feeding. In the coming months we may start adding salt to the formula and she will start taking vitamins.
Another treatment which we began tonight is chest percussions. We will be tapping on her chest, sides, and back trying to break up any mucus that maybe in the different lobes of her lungs and move it to the main tubes so she can eventually cough it up. We will be doing this twice a day beginning with 5-6 minutes each time with the duration increasing based on her age and other factors.
Each time that we go to the CF clinic they will taking a throat culture to look for bacteria which may be in her lungs. They will also be running a test to see if the enzymes from the pancreas are making it to the intestines. These enzymes are what breaks down the food so the nutrients can be absorbed by the intestines into the body. If she does not have any enzymes or not enough enzymes she will have to take enzymes orally prior to every time she eats.
We have a social worker as part of the CF care team that will help us with our work, daycare, insurance, and many more things. There are three CF nurses that we can call with questions and if they don’t know the answer they will text the doctor and get the information for us. They will also help us determine when we should take Gabrielle to her regular pediatrician or bring her to the CF care center.
We go back it two week for another information overload and to find out what changes need to be made in her treatment and any additions to her treatment. For the first year will be visiting the CF Clinic at least once a month.
Thank you for your continued prayer.
May God Be Glorified,
Gabrielle, Jeff, and Ashley
To determine Gabrielle’s treatment they will have to evaluate her and get to know her over time. Treatment for CF is based on the individual patient because each patient is unique. To start with and for the first year they are focusing on nutrition as the primary treatment. Gabrielle is below average in her weight so we will be mixing a higher concentration of formula. This will give her more calories per ounce of formula so she does not have to take as much at each feeding. In the coming months we may start adding salt to the formula and she will start taking vitamins.
Another treatment which we began tonight is chest percussions. We will be tapping on her chest, sides, and back trying to break up any mucus that maybe in the different lobes of her lungs and move it to the main tubes so she can eventually cough it up. We will be doing this twice a day beginning with 5-6 minutes each time with the duration increasing based on her age and other factors.
Each time that we go to the CF clinic they will taking a throat culture to look for bacteria which may be in her lungs. They will also be running a test to see if the enzymes from the pancreas are making it to the intestines. These enzymes are what breaks down the food so the nutrients can be absorbed by the intestines into the body. If she does not have any enzymes or not enough enzymes she will have to take enzymes orally prior to every time she eats.
We have a social worker as part of the CF care team that will help us with our work, daycare, insurance, and many more things. There are three CF nurses that we can call with questions and if they don’t know the answer they will text the doctor and get the information for us. They will also help us determine when we should take Gabrielle to her regular pediatrician or bring her to the CF care center.
We go back it two week for another information overload and to find out what changes need to be made in her treatment and any additions to her treatment. For the first year will be visiting the CF Clinic at least once a month.
Thank you for your continued prayer.
May God Be Glorified,
Gabrielle, Jeff, and Ashley
Saturday, March 7, 2009
Day 23
In December of 2007, before Gabrielle’s conception Ashley and I found out that we both were carriers of a genetic disorder, Cystic Fibrosis (CF).
Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that (1) clogs the lungs and leads to life-threatening lung infections; and (2) obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.
It was at this time that we first began asking a small group of family and friends to begin praying with us for Gabrielle. Before we continued our quest to begin a family Ashley and I had some decisions that had to be made. With both Ashley and I being carriers of CF that gives a 25% chance our child would have CF (one mutated gene or two mutated chromosomes), a 50% chance our child would be a carrier of CF (one mutated chromosomes), and a 25% chance that our child would have two normal chromosomes. We gathered as much information as we could about CF and even talked with a genetic counselor and a genetic doctor at Vanderbilt Children’s Hospital about the specific mutations that our chromosomes have. We also talked with a fertility doctor who presented us with choices that ranged from natural conception to In Vitro Fertilization (IVF) with Preimplantation Genetic Diagnosis (PGD). IVF w/ PGD is creating embryos outside of the womb and then testing each one for a genetic disorder and throwing out the “bad” ones and keeping the “good” ones. After much prayer and support from family and friends our view of the choices were, Trusting Completely in God or allowing the doctors play “god”. Ashley and I got a peace about our decision to Completely Trust in God to provide us with the child that He had chosen for us. Five months after our decision was made Gabrielle was conceived. At this point we had the choice to have testing performed on her while she was in the womb. Since we had already decided to Completely Trust in God we did not have any testing done while Gabrielle was in the womb other than the normal ultrasounds. We decided that the best thing we could do is to have testing performed as soon as possible after she was born.
Fast Forward to February 13, 2009 the day Gabrielle was born. When Gabrielle was born Ashley and I and the doctors began watching for the physical symptoms of CF and we have not seen any as of today. We went ahead and scheduled an appointment with the genetic doctor at Vanderbilt Children’s Hospital to have the testing for CF done when Gabrielle was 13 days old. Two days before the appointment we received a letter from the Tennessee Department of Health concerning the Newborn Screening Test which the state requires, by law, be run on all newborns before they are discharged from the hospital. These test check for metabolic/genetic disorders which can cause severe illness or mental retardation, however when identified early they can be treated. The screening test which is run to identify babies with the potential to have CF came back with “questionable results” for Gabrielle and we were instructed to have the screening test run again when she was two weeks old. Since we already had appointments scheduled blood samples for the Newborn Screenings were collected when she was 13 days old. In addition to the Newborn Screening we also had two test run for CF. The first test which is the standard test for CF is a Sweat Test. This test did not work because she did not have enough sweat. The second test was another blood test, a DNA test looking for the two mutated chromosomes which Ashley and I carry.
On Gabrielle’s three week birthday, March 6th, we received the results from the DNA test. Gabrielle has Cystic Fibrosis. Ashley and I still have the same peace which God gave us before Gabrielle was born. We know that everything that has happened to this point is because God is Completely In Control and that everything that will happen from this point on is because He is Completely In Control.
We have an appointment with Cystic Fibrosis Care Center at Vanderbilt Children’s Hospital on Tuesday, March 10th. At this appointment we will learn more about Gabrielle’s CF and the type of treatment that she will have. The treatments will be lifelong treatments as there is not a cure for CF. There are varying severities of CF and it is dependent on the specific mutations of the chromosomes and the individual who has it. It can range from no symptoms at all to extremely severe. By finding out Gabrielle has CF at this point in her life it will allow the treatments to stay ahead of any problems which she may have.
Right now this is the extent of information that we know. Over the coming days, weeks, months, and years we will be learning as much as we can about CF and how it affects Gabrielle. As time permits we will be adding information about CF to Gabrielle’s website. In addition to sending updates via email we will also post them on her website.
Please be in prayer for Gabrielle, Ashley, and Myself. Also, for the Doctors and all who are involved in caring for Gabrielle.
To God be All the Glory,
Gabrielle, Jeff, and Ashley
http://www.gabrielleelisabeth.com/
Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that (1) clogs the lungs and leads to life-threatening lung infections; and (2) obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.
It was at this time that we first began asking a small group of family and friends to begin praying with us for Gabrielle. Before we continued our quest to begin a family Ashley and I had some decisions that had to be made. With both Ashley and I being carriers of CF that gives a 25% chance our child would have CF (one mutated gene or two mutated chromosomes), a 50% chance our child would be a carrier of CF (one mutated chromosomes), and a 25% chance that our child would have two normal chromosomes. We gathered as much information as we could about CF and even talked with a genetic counselor and a genetic doctor at Vanderbilt Children’s Hospital about the specific mutations that our chromosomes have. We also talked with a fertility doctor who presented us with choices that ranged from natural conception to In Vitro Fertilization (IVF) with Preimplantation Genetic Diagnosis (PGD). IVF w/ PGD is creating embryos outside of the womb and then testing each one for a genetic disorder and throwing out the “bad” ones and keeping the “good” ones. After much prayer and support from family and friends our view of the choices were, Trusting Completely in God or allowing the doctors play “god”. Ashley and I got a peace about our decision to Completely Trust in God to provide us with the child that He had chosen for us. Five months after our decision was made Gabrielle was conceived. At this point we had the choice to have testing performed on her while she was in the womb. Since we had already decided to Completely Trust in God we did not have any testing done while Gabrielle was in the womb other than the normal ultrasounds. We decided that the best thing we could do is to have testing performed as soon as possible after she was born.
Fast Forward to February 13, 2009 the day Gabrielle was born. When Gabrielle was born Ashley and I and the doctors began watching for the physical symptoms of CF and we have not seen any as of today. We went ahead and scheduled an appointment with the genetic doctor at Vanderbilt Children’s Hospital to have the testing for CF done when Gabrielle was 13 days old. Two days before the appointment we received a letter from the Tennessee Department of Health concerning the Newborn Screening Test which the state requires, by law, be run on all newborns before they are discharged from the hospital. These test check for metabolic/genetic disorders which can cause severe illness or mental retardation, however when identified early they can be treated. The screening test which is run to identify babies with the potential to have CF came back with “questionable results” for Gabrielle and we were instructed to have the screening test run again when she was two weeks old. Since we already had appointments scheduled blood samples for the Newborn Screenings were collected when she was 13 days old. In addition to the Newborn Screening we also had two test run for CF. The first test which is the standard test for CF is a Sweat Test. This test did not work because she did not have enough sweat. The second test was another blood test, a DNA test looking for the two mutated chromosomes which Ashley and I carry.
On Gabrielle’s three week birthday, March 6th, we received the results from the DNA test. Gabrielle has Cystic Fibrosis. Ashley and I still have the same peace which God gave us before Gabrielle was born. We know that everything that has happened to this point is because God is Completely In Control and that everything that will happen from this point on is because He is Completely In Control.
We have an appointment with Cystic Fibrosis Care Center at Vanderbilt Children’s Hospital on Tuesday, March 10th. At this appointment we will learn more about Gabrielle’s CF and the type of treatment that she will have. The treatments will be lifelong treatments as there is not a cure for CF. There are varying severities of CF and it is dependent on the specific mutations of the chromosomes and the individual who has it. It can range from no symptoms at all to extremely severe. By finding out Gabrielle has CF at this point in her life it will allow the treatments to stay ahead of any problems which she may have.
Right now this is the extent of information that we know. Over the coming days, weeks, months, and years we will be learning as much as we can about CF and how it affects Gabrielle. As time permits we will be adding information about CF to Gabrielle’s website. In addition to sending updates via email we will also post them on her website.
Please be in prayer for Gabrielle, Ashley, and Myself. Also, for the Doctors and all who are involved in caring for Gabrielle.
To God be All the Glory,
Gabrielle, Jeff, and Ashley
http://www.gabrielleelisabeth.com/
Subscribe to:
Comments (Atom)
