Things have been going good for Gabrielle. She is still content here in the hospital. She is eating, sleeping, watching TV and playing. To keep things interesting for her we are bringing her a new toy to play with everyday. She has a foam mat on the floor so she can be in the floor to crawl and play. She also has a walker so she can roam around the rest of the room.
She has gotten use to most of her therapies and allows them to be done without much fuss. We are still trying to find something that will keep her attention for the entire 20-30 minutes during her respiratory therapy. We have things that keep her attention for 10-15 minutes after that she gets a little restless, but we are still able to complete the therapy it is just a little bit more challenging.
We have now been able to talk with all of the doctors and have also gotten all the lab results back. No new bacteria grew in the cultures and the bacteria the doctors are concerned about did not grow, so the Pulmonary doctors are changing her treatment from 14 days to 7 days. This means we are being discharged from the hospital tomorrow (11/13) without having to continue the antibiotics at home.
The GI doctor came and talked with us earlier this week. The biopsies showed inflammation in the tissues in her esophagus from acid reflux. The doctor mentioned increasing her reflux medicine. He also wants to run an impedance study at a later time. When this test is run Gabrielle will have to stop all her medicines and he does not want to do that to her at this time.
An impedance study is done to help evaluate acid and non-acid gastroesophageal reflux. In this test, a thin, flexible tube is passed through the nose, down the back of the throat, and into the esophagus. The tube is carefully taped into place on your child's cheek. The end of the tube is attached to computer which will remain at your child's bedside throughout the study. An Impedance Study takes 18 to 24 hours.
One issue that has developed over the last few weeks is that Gabrielle has lost interest in her formula. This is causing her to only take 10-12 ounces of formula per day, this includes the 2.5 ounces that is mixed in her rice cereal each day. The issue is hydration and calories. To try and fix this while in the hospital we are mixing her formula with a vanilla flavored supplement, Nutren Junior. This will be the supplement that she goes on when she stops taking her formula. She seems to like the taste better. When we get home we are going to try adding Vanilla Extract to her formula to see if that works. If it works then we will continue to stay on her formula, if it does not work we will change to the supplement.
There have been changes made to her home maintenance treatments but all the changes are manageable. Once we receive final instructions from the CF Care team about our new home treatments we will post another update
Thank you for all your prayers during this time. Gabrielle has done a great job being hospitalize and Ashley and I have been able to see what all is involved in the hospital treatments.
We are going home Friday!!!!!!!!!!!!!!!!!!!!!!!
Jeff, Ashley, and Gabrielle
Thursday, November 12, 2009
Saturday, November 7, 2009
November 7, 2009
What an experience it has been so far. We arrived at Vanderbilt Children’s Hospital at 7am Friday morning and was joined by Pastor Joe and the Grandparents. After checking in we had time to fellowship as we waited to be called back for preparations. Before going back we had a time of prayer for Gabrielle and her doctors. At 8:45am we were finally called back to begin the preparations for the procedures.
Gabrielle’s vitals were taken then we were taken to a holding room. Once in the holding room doctors and nurses started coming and talking to us about the different things Gabrielle was going to be experiencing. There were times that one person would be talking with Ashley while another was talking with Jeff. At 9:15am after everyone had talked with us and all the consents were signed Gabrielle was taken back to the procedure room and Ashley and I to a small waiting room. Gabrielle had fallen asleep prior to time to go to the procedure room so that was a blessing for us and her.
All of the procedures were done under anesthesia. They planned on starting the anesthesia through a mask. After the mask they could give some through an IV. Gabrielle was also hooked up to a standard IV in her leg to provide her fluids during the procedures.
The first procedure was a bronchoscopy. This is where a camera is sent into her lungs to examine them. They also sprayed a small amount of saline solution in to wash some mucus off of the lungs and then they sucked it back up to collect a sample. This procedure took 10-15 minutes to complete. The doctors told us visually everything looked good. We are waiting for the results of the bacteria cultures so we know the different types of bacteria in her lungs. Once this is known the doctors can finalize her treatment regime.
The second procedure was an Esophagogastroduodenoscopy (EGD) with biopsy. An EGD is an examination of the lining of the esophagus, stomach, and upper duodenum with a small camera which is inserted down the throat. Biopsies were taken so they linings could be examined under a microscope for inflammation and to determine how the reflux medicines are working and if Gabrielle is having any allergic reactions to her formula. This procedure also took 10-15 minutes to complete. The GI Doctor told us the visually everything looked good. We are waiting for the results of the biopsies which we should get Monday or Tuesday.
The third procedure was to insert a peripherally inserted central catheter or PICC Line. A PICC Line is a long, slender, small, flexible tube that is inserted into a peripheral vein in the upper arm and sent through the vein until it reaches a large vein in the chest near the heart. Ashley and I decided to have the PICC Line placed in Gabrielle to reduce the number of times she would be stuck with a needle. The PICC Line takes the place of an standard IV and will last 2-3 weeks verses the 3-4 days a standard IV would last. Since Gabrielle’s IV antibiotic will run for 14 days the PICC Line was the best way to go. The PICC Line took 30-60 minutes to place and required a chest x-ray to verify its position. The PICC Line was verified and approved for use.
The forth procedure was the Chest X-ray to verify the position of the PICC Line. This was done after she had woke up from the anesthesia. The doctors also used this opportunity to use the Chest X-ray to examine her lungs for blockages so an extra view was taken with the Chest X-ray. The Chest X-rays looked good both in regards to the PICC Line and looking at her lungs.
Ashley and I were taken back to the recovery at 11:30am. When we arrived Gabrielle had just woke up and was scared and crying. We were able to get her calmed down and she fell back asleep. Ashley and I stayed with Gabrielle from that point on. About 2:30pm we were able to go and have the Chest X-rays done and then returned to recovery to wait on a room. At 4:30pm we were finally taken to a room where Gabrielle will remain for the next 7-14 days. The IV antibiotics last for 14 days but there is a chance we can finish the last week of treatment at home.
The IV antibiotics currently consist of two different antibiotics. The first antibiotic, Cefepime, is given every 8 hours and the second, Tobramycin, is given once a day. It takes about an hour for each antibiotic. Blood is drawn each day to check her kidneys and to check the level of Tobramycin in her blood stream.
Another part of her treatment is her Respiratory Therapy. Her Respiratory Therapy consist of Chest Percussions and Aerosol inhalants. The chest percussions are the same as we have been doing at home. The only difference is they are being done 4 times per day, where at home it was only twice. A new part of her Respiratory Therapy are the Aerosol inhalants during the 14 days of antibiotics she is receiving Albuterol prior to the chest percussions 4 times per day and then twice a day she is receiving Pulmozyme after her chest percussions. The Albuterol opens her airways up so the mucus can flow out easier. The Pulmozyme actually breaks down the mucus at the cellular level. After the 14 days of antibiotics the chest percussions should reduce back to twice a day and we should also be able to stop the Albuterol. However, the Pulmozyme will become part of her daily treatment.
Yesterday Gabrielle was tired and cranky as expected. This morning she woke-up as her normal active cheerful self. She is still getting use to the different treatments that she has to go through. As the week progresses hopefully all these treatments will become second nature to her and we can get through them without any fussing.
Prayer request for now are that Gabrielle becomes adjusted to her new treatments.
We are allowed to have visitors and have to follow the guidelines of the hospital. Visits from other family members and friends are encouraged during the day and evening hours. The routine visiting hours are 9:00 a.m. – 9:00 p.m. All family and visitors should wash their hands upon entering a child’s room. If a visitor has a fever, rash, diarrhea, vomiting, cold, or any recent exposure to communicable disease (chicken pox, measles, mumps), for the protection of our patients, they may not come to the patient care floors.
Gabrielle is in room 7533 at Vanderbilt Children’s Hospital. Take the Main Hospital Elevators up to the 7th floor and go to Pod C. There is a gray box on the right wall that will buzz the nurse’s station so they can open the door. You will need to sign in at the nurse’s station.
Jeff, Ashley, and Gabrielle
Gabrielle’s vitals were taken then we were taken to a holding room. Once in the holding room doctors and nurses started coming and talking to us about the different things Gabrielle was going to be experiencing. There were times that one person would be talking with Ashley while another was talking with Jeff. At 9:15am after everyone had talked with us and all the consents were signed Gabrielle was taken back to the procedure room and Ashley and I to a small waiting room. Gabrielle had fallen asleep prior to time to go to the procedure room so that was a blessing for us and her.
All of the procedures were done under anesthesia. They planned on starting the anesthesia through a mask. After the mask they could give some through an IV. Gabrielle was also hooked up to a standard IV in her leg to provide her fluids during the procedures.
The first procedure was a bronchoscopy. This is where a camera is sent into her lungs to examine them. They also sprayed a small amount of saline solution in to wash some mucus off of the lungs and then they sucked it back up to collect a sample. This procedure took 10-15 minutes to complete. The doctors told us visually everything looked good. We are waiting for the results of the bacteria cultures so we know the different types of bacteria in her lungs. Once this is known the doctors can finalize her treatment regime.
The second procedure was an Esophagogastroduodenoscopy (EGD) with biopsy. An EGD is an examination of the lining of the esophagus, stomach, and upper duodenum with a small camera which is inserted down the throat. Biopsies were taken so they linings could be examined under a microscope for inflammation and to determine how the reflux medicines are working and if Gabrielle is having any allergic reactions to her formula. This procedure also took 10-15 minutes to complete. The GI Doctor told us the visually everything looked good. We are waiting for the results of the biopsies which we should get Monday or Tuesday.
The third procedure was to insert a peripherally inserted central catheter or PICC Line. A PICC Line is a long, slender, small, flexible tube that is inserted into a peripheral vein in the upper arm and sent through the vein until it reaches a large vein in the chest near the heart. Ashley and I decided to have the PICC Line placed in Gabrielle to reduce the number of times she would be stuck with a needle. The PICC Line takes the place of an standard IV and will last 2-3 weeks verses the 3-4 days a standard IV would last. Since Gabrielle’s IV antibiotic will run for 14 days the PICC Line was the best way to go. The PICC Line took 30-60 minutes to place and required a chest x-ray to verify its position. The PICC Line was verified and approved for use.
The forth procedure was the Chest X-ray to verify the position of the PICC Line. This was done after she had woke up from the anesthesia. The doctors also used this opportunity to use the Chest X-ray to examine her lungs for blockages so an extra view was taken with the Chest X-ray. The Chest X-rays looked good both in regards to the PICC Line and looking at her lungs.
Ashley and I were taken back to the recovery at 11:30am. When we arrived Gabrielle had just woke up and was scared and crying. We were able to get her calmed down and she fell back asleep. Ashley and I stayed with Gabrielle from that point on. About 2:30pm we were able to go and have the Chest X-rays done and then returned to recovery to wait on a room. At 4:30pm we were finally taken to a room where Gabrielle will remain for the next 7-14 days. The IV antibiotics last for 14 days but there is a chance we can finish the last week of treatment at home.
The IV antibiotics currently consist of two different antibiotics. The first antibiotic, Cefepime, is given every 8 hours and the second, Tobramycin, is given once a day. It takes about an hour for each antibiotic. Blood is drawn each day to check her kidneys and to check the level of Tobramycin in her blood stream.
Another part of her treatment is her Respiratory Therapy. Her Respiratory Therapy consist of Chest Percussions and Aerosol inhalants. The chest percussions are the same as we have been doing at home. The only difference is they are being done 4 times per day, where at home it was only twice. A new part of her Respiratory Therapy are the Aerosol inhalants during the 14 days of antibiotics she is receiving Albuterol prior to the chest percussions 4 times per day and then twice a day she is receiving Pulmozyme after her chest percussions. The Albuterol opens her airways up so the mucus can flow out easier. The Pulmozyme actually breaks down the mucus at the cellular level. After the 14 days of antibiotics the chest percussions should reduce back to twice a day and we should also be able to stop the Albuterol. However, the Pulmozyme will become part of her daily treatment.
Yesterday Gabrielle was tired and cranky as expected. This morning she woke-up as her normal active cheerful self. She is still getting use to the different treatments that she has to go through. As the week progresses hopefully all these treatments will become second nature to her and we can get through them without any fussing.
Prayer request for now are that Gabrielle becomes adjusted to her new treatments.
We are allowed to have visitors and have to follow the guidelines of the hospital. Visits from other family members and friends are encouraged during the day and evening hours. The routine visiting hours are 9:00 a.m. – 9:00 p.m. All family and visitors should wash their hands upon entering a child’s room. If a visitor has a fever, rash, diarrhea, vomiting, cold, or any recent exposure to communicable disease (chicken pox, measles, mumps), for the protection of our patients, they may not come to the patient care floors.
Gabrielle is in room 7533 at Vanderbilt Children’s Hospital. Take the Main Hospital Elevators up to the 7th floor and go to Pod C. There is a gray box on the right wall that will buzz the nurse’s station so they can open the door. You will need to sign in at the nurse’s station.
Jeff, Ashley, and Gabrielle
Thursday, November 5, 2009
November 5, 2009
Gabrielle is scheduled for her procedures at 9am tomorrow (11/6) morning. After everything is completed she will be moved to a room to start the IV antibiotics. We will send an update after we get settled in her room tomorrow to let everyone know how she is doing.
Thanks for your continued prayers.
Jeff, Ashley, & Gabrielle
Thanks for your continued prayers.
Jeff, Ashley, & Gabrielle
Wednesday, November 4, 2009
November 2009 CF Clinic Visit
It has been a long time since we last sent out an update on Gabrielle. We are actually excited that it has been such a long time since this means that everything has been going good for her in regards to the Cystic Fibrosis.
Today was Gabrielle’s monthly appointment with the CF Clinic and also a revisit with her GI doctor. Things looked good with both visits but Gabrielle is showing signs that it is time to start a new phase in the treatment for her CF. Right now we are preparing for Gabrielle to be admitted to Vanderbilt Children’s Hospital so she can receive IV antibiotics. The treatment last for two weeks with at least the first week being in the hospital, the second week is dependent on how things go and how Ashley and I feel. We are waiting for the doctor to call us to let us know when things have been arranged. We are expecting the enter the hospital on Friday (11/6) but it may be tomorrow (11/5).
When she is first admitted she will be sedated so they can collect samples from her lungs to test for the different bacteria that are present. This will allow them to give the proper antibiotics. Since she will be sedated her GI doctor wants to look in her throat and stomach to help figure out the issues she is having with reflux so he can better treat it.
This is new to us and as we figure things out we will keep you updated. For now we ask that you be in prayer for us as we prepare to enter the hospital and begin this treatment.
To God Be All The Glory!!!
Jeff, Ashley, & Gabrielle
Today was Gabrielle’s monthly appointment with the CF Clinic and also a revisit with her GI doctor. Things looked good with both visits but Gabrielle is showing signs that it is time to start a new phase in the treatment for her CF. Right now we are preparing for Gabrielle to be admitted to Vanderbilt Children’s Hospital so she can receive IV antibiotics. The treatment last for two weeks with at least the first week being in the hospital, the second week is dependent on how things go and how Ashley and I feel. We are waiting for the doctor to call us to let us know when things have been arranged. We are expecting the enter the hospital on Friday (11/6) but it may be tomorrow (11/5).
When she is first admitted she will be sedated so they can collect samples from her lungs to test for the different bacteria that are present. This will allow them to give the proper antibiotics. Since she will be sedated her GI doctor wants to look in her throat and stomach to help figure out the issues she is having with reflux so he can better treat it.
This is new to us and as we figure things out we will keep you updated. For now we ask that you be in prayer for us as we prepare to enter the hospital and begin this treatment.
To God Be All The Glory!!!
Jeff, Ashley, & Gabrielle
Monday, September 7, 2009
August 2009 CF Clinic Visit
Now that it is September and we are days away from Gabrielle's September CF Clinic Visit it is time to have an update about the August Visit.
We took Gabrielle to the CF Clinic on August 5, 2009 for her monthly check up. At that visit we talked more about her reflux and the doctors decided to refer her to a GI specialist.
We took Gabrielle to the CF Clinic on August 5, 2009 for her monthly check up. At that visit we talked more about her reflux and the doctors decided to refer her to a GI specialist.
Saturday, July 11, 2009
Enzymes
We had our monthly office visit at the CF Clinic on July 1st. At that visit the doctors, dietitian, and us decided to start Gabrielle on enzymes as a trial until our next office visit on August 5th. The decision to start Gabrielle on enzymes was based on her weight gain and stools. Currently Gabrielle is only gaining one-third of the weight she should be gaining based on the specialized formula we are giving her. Both Pancreatic Elastase test run to check her enzyme levels have come back in the low normal range. But based on her stools the doctors think there may be a chance that her enzyme levels fluctuate during the day.
By placing Gabrielle on a low dose of Enzyme to supplement her natural enzymes two things should happen. First, the enzymes will digest the food better allowing for her to gain weight faster so that she can grow larger lungs. Second, they should add consistency to her stools. If the enzymes do what they are suppose to do then Gabrielle will more than likely be on the enzymes the rest of her life. Right now she is on them until our next clinic visit on August 5th.
We finally were able to get things worked out and got the enzymes yesterday afternoon and started giving them to her this morning (7/11). We will be getting the enzymes from Walgreens. The pharmaceutical company that makes the enzyme is providing them for free for the first 4 years. They will also provide her vitamins for free when she starts taking them.
Gabrielle is remaining on both the Zantac and Prevacid to reduce the acid in her stomach. This will not only help with reflux but will also aid in the activation of the enzymes.
The other thing we will be doing to help Gabrielle gain weight it to wake her up in the middle of the night for an extra bottle when she eats 18oz or less during a day.
Thanks for praying for Gabrielle and us. We don't know how to ask you to pray for Gabrielle at this time. We don't want Gabrielle to have to take enzymes the rest of her life, but then we want her to have them if she needs them. God knows what Gabrielle needs and he will provide for her. So our prayer is that God will watch over Gabrielle as she grows and develops.
Leaving all in God's Hands,
Jeff, Ashley, and Gabrielle
By placing Gabrielle on a low dose of Enzyme to supplement her natural enzymes two things should happen. First, the enzymes will digest the food better allowing for her to gain weight faster so that she can grow larger lungs. Second, they should add consistency to her stools. If the enzymes do what they are suppose to do then Gabrielle will more than likely be on the enzymes the rest of her life. Right now she is on them until our next clinic visit on August 5th.
We finally were able to get things worked out and got the enzymes yesterday afternoon and started giving them to her this morning (7/11). We will be getting the enzymes from Walgreens. The pharmaceutical company that makes the enzyme is providing them for free for the first 4 years. They will also provide her vitamins for free when she starts taking them.
Gabrielle is remaining on both the Zantac and Prevacid to reduce the acid in her stomach. This will not only help with reflux but will also aid in the activation of the enzymes.
The other thing we will be doing to help Gabrielle gain weight it to wake her up in the middle of the night for an extra bottle when she eats 18oz or less during a day.
Thanks for praying for Gabrielle and us. We don't know how to ask you to pray for Gabrielle at this time. We don't want Gabrielle to have to take enzymes the rest of her life, but then we want her to have them if she needs them. God knows what Gabrielle needs and he will provide for her. So our prayer is that God will watch over Gabrielle as she grows and develops.
Leaving all in God's Hands,
Jeff, Ashley, and Gabrielle
Wednesday, July 1, 2009
July 2009 CF Clinic Visit
It has been a while since we have sent an update on Gabrielle. To us this has been great news since this means that Baby Girl has generally been doing good.
Today we had our monthly office visit at the CF Clinic. This was a great visit with respect to the communication/relational side of Gabrielle's care.
Our appointment this time was with the head CF doctor, another CF doctor, the social worker, the dietitian, the dietitian's boss, and the CF nurse.
It appears that right now we will be seeing one of the CF doctors when we visit the clinic instead of the Nurse Practitioner, whom we had some communication/relational issues with. They did not say this but this appointment and the next appointment are with one of the doctors.
The doctors said that Gabrielle is doing good overall and that Ashley and I are doing a good job with her care.
During the first year of Gabrielle's life the focus of care for CF is her nutrition and gaining weight. For a non-CF child Gabrielle is doing good with maintaining the 25% weight curve. However, in order to do this she is taking a specialized formula that is partially predigested and is mixed to give her 30% more calories than regular formula. With the special formula being partially predigested this allows for more of the calories and nutrients to be absorbed by her body. With this said, Gabrielle should be gradually gaining enough weight so that she is changing weight curves. The goal is for her to reach the 50% weight curve. To accomplish this she should gain 1 ounce per day on average. Currently she is averaging 1/3 of an ounce per day.
Another issue we have been working with is reflux. Last month Gabrielle had an Upper GI (barium test) to check for reflux and make sure the anatomy of the Upper GI was normal. The test came back that everything looked normal and they did not see reflux during the test. However, Gabrielle did have reflux problems and for that she was placed on Zantac and Prevacid and has been on both for over a month now. Within the last week Ashley and I have noticed that Gabrielle has less gas, less burping between bottles, and basically no reflux or spitup between bottles. So the medications have been working.
One way to tell if Gabrielle' pancreas is producing enough enzymes to digest the food is to look at her stool. Her stools seem to go in cycles from watery (everything absorbed into the diaper) to runny to runny with mucus to pasty (normal). Since starting the Prevacid her stools cycle from runny to runny with mucus to pasty. The doctors attribute this change to the Prevacid and Zantac reducing the amount of acid in her stomach.
With all that said, before we are referred to a GI doctor to see about her abnormal stool cycles we are going to rule out any CF related issues.
Gabrielle has had two Pancreatic Elastase test run to check the amount of enzymes her pancreas is producing. The results of both test came back normal, but are on the low end of normal. Her pancreas could be sufficient
(normal) for years then become insufficient for the rest of her life or could stay sufficient her whole life or turn insufficient at anytime. This is something that has to be watched. Since her stools seem to cycle the doctors say that one possibility is that her pancreatic enzymes may be cycling also from having enough to not having enough. When you combine this with her staying on the 25% weight curve despite the special formula and increased calories, then something needs to be done.
Gabrielle is being placed on a low dose of Enzyme to supplement her natural enzymes. The enzymes should do two things. First, the enzymes will digest the food better allowing for her to gain weight faster so that she can grow larger lungs. Second, they should add consistency to her stools. If the enzymes do what they are suppose to do then Gabrielle will more than likely be on the enzymes the rest of her life. Right now she is on them until our next clinic visit on July 29th.
Gabrielle is remaining on both the Zantac and Prevacid to reduce the acid in her stomach. This will not only help with reflux but will also aid in the activation of the enzymes. She will begin the enzymes either Friday or Monday when we receive them. The enzymes are coming from the CF Services Pharmacy by mail.
The other thing we will be doing to help Gabrielle gain weight it to wake her up in the middle of the night for an extra bottle when she eats 18oz or less during a day.
Thanks for praying for Gabrielle and us. We don't know how to ask you to pray for Gabrielle at this time. We don't want Gabrielle to have to take enzymes the rest of her life, but then we want her to have them if she needs them. God knows what Gabrielle needs and he will provide for her. So our prayer is that God will watch over Gabrielle as she grows and develops.
Leaving all in God's Hands,
Jeff, Ashley, and Gabrielle
Today we had our monthly office visit at the CF Clinic. This was a great visit with respect to the communication/relational side of Gabrielle's care.
Our appointment this time was with the head CF doctor, another CF doctor, the social worker, the dietitian, the dietitian's boss, and the CF nurse.
It appears that right now we will be seeing one of the CF doctors when we visit the clinic instead of the Nurse Practitioner, whom we had some communication/relational issues with. They did not say this but this appointment and the next appointment are with one of the doctors.
The doctors said that Gabrielle is doing good overall and that Ashley and I are doing a good job with her care.
During the first year of Gabrielle's life the focus of care for CF is her nutrition and gaining weight. For a non-CF child Gabrielle is doing good with maintaining the 25% weight curve. However, in order to do this she is taking a specialized formula that is partially predigested and is mixed to give her 30% more calories than regular formula. With the special formula being partially predigested this allows for more of the calories and nutrients to be absorbed by her body. With this said, Gabrielle should be gradually gaining enough weight so that she is changing weight curves. The goal is for her to reach the 50% weight curve. To accomplish this she should gain 1 ounce per day on average. Currently she is averaging 1/3 of an ounce per day.
Another issue we have been working with is reflux. Last month Gabrielle had an Upper GI (barium test) to check for reflux and make sure the anatomy of the Upper GI was normal. The test came back that everything looked normal and they did not see reflux during the test. However, Gabrielle did have reflux problems and for that she was placed on Zantac and Prevacid and has been on both for over a month now. Within the last week Ashley and I have noticed that Gabrielle has less gas, less burping between bottles, and basically no reflux or spitup between bottles. So the medications have been working.
One way to tell if Gabrielle' pancreas is producing enough enzymes to digest the food is to look at her stool. Her stools seem to go in cycles from watery (everything absorbed into the diaper) to runny to runny with mucus to pasty (normal). Since starting the Prevacid her stools cycle from runny to runny with mucus to pasty. The doctors attribute this change to the Prevacid and Zantac reducing the amount of acid in her stomach.
With all that said, before we are referred to a GI doctor to see about her abnormal stool cycles we are going to rule out any CF related issues.
Gabrielle has had two Pancreatic Elastase test run to check the amount of enzymes her pancreas is producing. The results of both test came back normal, but are on the low end of normal. Her pancreas could be sufficient
(normal) for years then become insufficient for the rest of her life or could stay sufficient her whole life or turn insufficient at anytime. This is something that has to be watched. Since her stools seem to cycle the doctors say that one possibility is that her pancreatic enzymes may be cycling also from having enough to not having enough. When you combine this with her staying on the 25% weight curve despite the special formula and increased calories, then something needs to be done.
Gabrielle is being placed on a low dose of Enzyme to supplement her natural enzymes. The enzymes should do two things. First, the enzymes will digest the food better allowing for her to gain weight faster so that she can grow larger lungs. Second, they should add consistency to her stools. If the enzymes do what they are suppose to do then Gabrielle will more than likely be on the enzymes the rest of her life. Right now she is on them until our next clinic visit on July 29th.
Gabrielle is remaining on both the Zantac and Prevacid to reduce the acid in her stomach. This will not only help with reflux but will also aid in the activation of the enzymes. She will begin the enzymes either Friday or Monday when we receive them. The enzymes are coming from the CF Services Pharmacy by mail.
The other thing we will be doing to help Gabrielle gain weight it to wake her up in the middle of the night for an extra bottle when she eats 18oz or less during a day.
Thanks for praying for Gabrielle and us. We don't know how to ask you to pray for Gabrielle at this time. We don't want Gabrielle to have to take enzymes the rest of her life, but then we want her to have them if she needs them. God knows what Gabrielle needs and he will provide for her. So our prayer is that God will watch over Gabrielle as she grows and develops.
Leaving all in God's Hands,
Jeff, Ashley, and Gabrielle
Saturday, June 13, 2009
Month 4 – May 13-June 13
Gabrielle rolls from her back to stomach and over again. She has such a sweet personality. She knows who certain people are and will smile at them when she sees them. Some of the things she is doing is blowing raspberries, clasps her hands together and sucks on both thumbs at the same time, takes her upper lip and sucks it in.
We celebrated the 4th of July in Nolensville, TN. In the evening there were fireworks which Gabrielle decided she slept through.
At her 4 month check up she weighed 12lbs 10oz and was 24.6 inches long.
Gabrielle is averaging about 20ozs a day
Ashley
We celebrated the 4th of July in Nolensville, TN. In the evening there were fireworks which Gabrielle decided she slept through.
At her 4 month check up she weighed 12lbs 10oz and was 24.6 inches long.
Gabrielle is averaging about 20ozs a day
Ashley
Wednesday, May 13, 2009
Month 3 – April 13-May 13
Gabrielle started rolling over from her back to stomach this month. She even got to the point where she does not like taking her pacifier. She would rather suck her fingers, mainly her thumb. Jeff and I got to hear Gabrielle laugh for the first time this month. It is priceless to watch her giggle. She rolled over for the first time this month as well.
Jeff and I had Gabrielle dedicated to the Lord on Mother’s Day, May 10. All of her family was in to see her. She had both sets of grandparents, all her uncles and aunts, and 1 great grandmother. It was truly a special day for all.
Gabrielle is averaging about 20oz a day
Ashley
Jeff and I had Gabrielle dedicated to the Lord on Mother’s Day, May 10. All of her family was in to see her. She had both sets of grandparents, all her uncles and aunts, and 1 great grandmother. It was truly a special day for all.
Gabrielle is averaging about 20oz a day
Ashley
Sunday, May 10, 2009
Parent-Child Dedication
Ashley and I come to you this morning asking for your prayers, support, examples, and accountability as we raise Gabrielle Elisabeth to be the Godly Woman God has designed her to be.
God has blessed us with the privilege and responsibility to raise Gabrielle, a responsibility we accepted years before Gabrielle was born without fully knowing how great a responsibility it is. During the years leading up to Gabrielle's birth God began teaching us how to Lean on Him, Depend on Him, and Surrender everything to Him.
After the loss of our first pregnancy we began to learn how to Lean on God for His comfort, healing, support, and guidance. If it were not for the prayers, support, examples, and accountability of our family we may not of begun to learn how to Lean on God in our time of sorrow and pain.
Over the next few years of trying for another pregnancy we began to learn how to Depend on God for His direction and timing for our family. If it were not for the prayers, support, examples, and accountability of our family and friends we may not of begun to learn how to Depend on God for everything in our lives.
After visiting a "specialist" and having test run we began to learn how to Surrender everything to God. Based on the results of one test, which was run on both Ashley and I, the "specialist" recommended that we basically take the control completely out of God's hands and place it into hers. If it were not for the prayers, support, examples, and accountability of our family and friends we may not have begun to learn how to Surrender everything to God.
Gabrielle is here today with her "65 Roses" Bouquet as a reminder to Ashley and Me of the lessons which God has taught us in the years leading up to now and the many more lessons He is going to be teaching us through the prayers, support, examples, and accountability of our family and friends.
The "65 Roses" Bouquet which Gabrielle is holding is a representation for Cystic Fibroses, the Genetic Disease which she has. "65 Rose" is what some children with Cystic Fibrosis call their disease because the words are much easier for them to pronounce. But, making it easier to say does not make CF any easier to live with. With the rose being the ancient symbol of love, the "65 Roses" has become a trademark symbol for Cystic Fibroses.
CF is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States, and about 70,000 worldwide. Ashley and I are seeing how God begun working with us even before we found out we were both carriers of CF, in that He has given the doctors and researchers the knowledge to develop treatments and drugs which have taken the life expectancy of CF patients from not expecting to attend elementary school to living full lives beyond their 40s.
God has also given the doctors and researchers the ability to develop treatments and drugs that allow CF patients to live full lives which are non-distiguishable from those without CF. While we will always have treatments to do, medications to take, and a few extra doctor and hospital visits to go to, Gabrielle will live an unrestricted full life just like non CF kids.
God has begun teaching us how to Lean on Him, Depend on Him, and Surrender everything to Him and we desire to continue learn more about God through His precious little Woman Gabrielle Elisabeth.
Again, Ashley and I come to you this morning asking you, our family and church family, for your prayers, support, examples, and accountability as we raise Gabrielle Elisabeth to be the Godly Woman God has designed her to be.
God has blessed us with the privilege and responsibility to raise Gabrielle, a responsibility we accepted years before Gabrielle was born without fully knowing how great a responsibility it is. During the years leading up to Gabrielle's birth God began teaching us how to Lean on Him, Depend on Him, and Surrender everything to Him.
After the loss of our first pregnancy we began to learn how to Lean on God for His comfort, healing, support, and guidance. If it were not for the prayers, support, examples, and accountability of our family we may not of begun to learn how to Lean on God in our time of sorrow and pain.
Over the next few years of trying for another pregnancy we began to learn how to Depend on God for His direction and timing for our family. If it were not for the prayers, support, examples, and accountability of our family and friends we may not of begun to learn how to Depend on God for everything in our lives.
After visiting a "specialist" and having test run we began to learn how to Surrender everything to God. Based on the results of one test, which was run on both Ashley and I, the "specialist" recommended that we basically take the control completely out of God's hands and place it into hers. If it were not for the prayers, support, examples, and accountability of our family and friends we may not have begun to learn how to Surrender everything to God.
Gabrielle is here today with her "65 Roses" Bouquet as a reminder to Ashley and Me of the lessons which God has taught us in the years leading up to now and the many more lessons He is going to be teaching us through the prayers, support, examples, and accountability of our family and friends.
The "65 Roses" Bouquet which Gabrielle is holding is a representation for Cystic Fibroses, the Genetic Disease which she has. "65 Rose" is what some children with Cystic Fibrosis call their disease because the words are much easier for them to pronounce. But, making it easier to say does not make CF any easier to live with. With the rose being the ancient symbol of love, the "65 Roses" has become a trademark symbol for Cystic Fibroses.
CF is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States, and about 70,000 worldwide. Ashley and I are seeing how God begun working with us even before we found out we were both carriers of CF, in that He has given the doctors and researchers the knowledge to develop treatments and drugs which have taken the life expectancy of CF patients from not expecting to attend elementary school to living full lives beyond their 40s.
God has also given the doctors and researchers the ability to develop treatments and drugs that allow CF patients to live full lives which are non-distiguishable from those without CF. While we will always have treatments to do, medications to take, and a few extra doctor and hospital visits to go to, Gabrielle will live an unrestricted full life just like non CF kids.
God has begun teaching us how to Lean on Him, Depend on Him, and Surrender everything to Him and we desire to continue learn more about God through His precious little Woman Gabrielle Elisabeth.
Again, Ashley and I come to you this morning asking you, our family and church family, for your prayers, support, examples, and accountability as we raise Gabrielle Elisabeth to be the Godly Woman God has designed her to be.
Monday, April 13, 2009
Month 2 – March 13-April 13
Gabrielle started forming her own personality. She started smiling and cooing. She is still sleeping through the night around 6-8 hours.
Gabrielle was even able to attend her first prom on April 25th and had her first overnight away from home. She stayed with Pops and Grandmama. Mommy missed her so much that it will probably be awhile before she stays the night away again.
Gabrielle celebrated her first St. Patrick’s Day on March 17, 2009. She had all the appropriate green attire so she would not get pinched.
Gabrielle celebrated her 1st Easter on April 12, 2009. She wore a beautiful smocked pink dress and bonnet. The Easter bunny left her a basket filled with goodies.
Gabrielle is averaging about 14ozs a day
At her 2 month check up she weighed 9lbs 15oz and 21.9inches long.
Ashley
Gabrielle was even able to attend her first prom on April 25th and had her first overnight away from home. She stayed with Pops and Grandmama. Mommy missed her so much that it will probably be awhile before she stays the night away again.
Gabrielle celebrated her first St. Patrick’s Day on March 17, 2009. She had all the appropriate green attire so she would not get pinched.
Gabrielle celebrated her 1st Easter on April 12, 2009. She wore a beautiful smocked pink dress and bonnet. The Easter bunny left her a basket filled with goodies.
Gabrielle is averaging about 14ozs a day
At her 2 month check up she weighed 9lbs 15oz and 21.9inches long.
Ashley
Friday, March 13, 2009
Month 1 – February 13-March 13
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
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
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/
Wednesday, February 25, 2009
Day 13
It has almost been 13 days since Gabrielle decided to join us in this world (outside of Ashley). Each of these days has been a blessing from God for us. We are looking forward to all the blessings that God has in store for us in the days, weeks, months, and years to come.
For those who we have forgotten to tell Gabrielle has her own website with pictures on it. It is http://www.gabrielleelisabeth.com/
Today we received a letter from the State Department of Health concerning the Newborn Screening Test that the state requires by law. The Screening Test are run before the newborn is discharged from the hospital. These test are checking for metabolic/genetic disorders which can cause severe illness or mental retardation, however when identified early they can be treated.
One of the test that was run on Gabrielle returned “questionable results” and the test has to be repeated. Just because the results are questionable DOES NOT mean the Gabrielle has a disorder, it just means the test has to be run again and more testing may be required. We already had her 2 week check up scheduled for Thursday so we will have the test re-run at that time.
We are asking you to pray for Gabrielle once again because the test that returned the questionable results deals with the same genetic issues we were concerned about prior to Gabrielle being conceived. We know that this is just an initial screening and DOES NOT mean that she has this genetic issue. We had already scheduled an appointment with a Genetic Doctor for Thursday also so we could talk about testing Gabrielle for this genetic disorder so it could be confirm that she does not have it.
We would also like to ask again that until we get more information that you not share the specifics with others. If you ask others to join us in praying just ask them to pray for our family as Gabrielle continues to grow and develop.
Thank you for being our prayer warriors and friends. Know that we pray for each of you on a regular basis.
To God be the Glory,
Jeff and Ashley
For those who we have forgotten to tell Gabrielle has her own website with pictures on it. It is http://www.gabrielleelisabeth.com/
Today we received a letter from the State Department of Health concerning the Newborn Screening Test that the state requires by law. The Screening Test are run before the newborn is discharged from the hospital. These test are checking for metabolic/genetic disorders which can cause severe illness or mental retardation, however when identified early they can be treated.
One of the test that was run on Gabrielle returned “questionable results” and the test has to be repeated. Just because the results are questionable DOES NOT mean the Gabrielle has a disorder, it just means the test has to be run again and more testing may be required. We already had her 2 week check up scheduled for Thursday so we will have the test re-run at that time.
We are asking you to pray for Gabrielle once again because the test that returned the questionable results deals with the same genetic issues we were concerned about prior to Gabrielle being conceived. We know that this is just an initial screening and DOES NOT mean that she has this genetic issue. We had already scheduled an appointment with a Genetic Doctor for Thursday also so we could talk about testing Gabrielle for this genetic disorder so it could be confirm that she does not have it.
We would also like to ask again that until we get more information that you not share the specifics with others. If you ask others to join us in praying just ask them to pray for our family as Gabrielle continues to grow and develop.
Thank you for being our prayer warriors and friends. Know that we pray for each of you on a regular basis.
To God be the Glory,
Jeff and Ashley
Monday, February 16, 2009
Coming Home
On Monday, February 16, 2009, Gabrielle was brought home from the hospital. It would definitely be a different experience for all.
We introduced Gabrielle to her dogs, Keely and Emma. I think they were more excited to see Jeff and me then Gabrielle. We let them sniff at her when we let them outside so they could begin getting used to her.
Jeff and I were determined that Gabrielle would sleep in her own room from the beginning. We made the mistake the first night of putting her in her room in the total darkness. She was not used to that, so she ended up sleeping with us that night.
Ashley
We introduced Gabrielle to her dogs, Keely and Emma. I think they were more excited to see Jeff and me then Gabrielle. We let them sniff at her when we let them outside so they could begin getting used to her.
Jeff and I were determined that Gabrielle would sleep in her own room from the beginning. We made the mistake the first night of putting her in her room in the total darkness. She was not used to that, so she ended up sleeping with us that night.
Ashley
Friday, February 13, 2009
Gabrielle’s Entrance to the World
Jeff and I decided not to find out the gender of our baby. We referred to the baby as Monkey for 9 months.
Jeff and I arrived at Centennial Women’s Hospital at 7:00 A.M. on Friday, February 13, 2009 for a scheduled Cesarean Section. We got settled into a room by 7:30am and I was hooked up to an IV and the heartbeat monitor for the baby. Around 8:00am, nurse Carmen came in to see if I was feeling the contractions. I did not even know that I was having them. Maybe “Monkey” would have made an appearance that day even without the C-Section.
At 8:55am, I was taken to the OR for prep. I was going to have a spinal block done instead of the epidural. Dr. Presley was running a bit behind from a surgery he had earlier in the morning, so at 9:40am I was wheeled back to my room to wait. At 9:52am, they came back to get me. After getting all things prepped and ready Jeff was brought into the room and the C-Section was started.
At 10:29am Gabrielle came into the world weighing in at a whopping 7lbs 14 oz and 21 inches long. She had a head full of hair and olive colored skin. Jeff and I were very excited to see her and hold her for the first time.
This day was filled with lots of emotions for the two of us and our family. Seeing that it was the first grandchild on both sides of the family and first niece for most of our siblings. Much to say she would be spoiled.
Jeff was able to carry her to the nursery. As our parents stood waiting to see the gender of the baby, Jeff would not say a word. It was not until the nurse changed her diaper, that they found out they had a granddaughter. My sister and the Agnew’s (Tom, Amanda and Caleb) were waiting as well.
Finally around 11:30am, I was in the recovery room and getting to spend some time with my little girl.
Over the next several days Gabrielle had many visitors come see her.
Ashley
Jeff and I arrived at Centennial Women’s Hospital at 7:00 A.M. on Friday, February 13, 2009 for a scheduled Cesarean Section. We got settled into a room by 7:30am and I was hooked up to an IV and the heartbeat monitor for the baby. Around 8:00am, nurse Carmen came in to see if I was feeling the contractions. I did not even know that I was having them. Maybe “Monkey” would have made an appearance that day even without the C-Section.
At 8:55am, I was taken to the OR for prep. I was going to have a spinal block done instead of the epidural. Dr. Presley was running a bit behind from a surgery he had earlier in the morning, so at 9:40am I was wheeled back to my room to wait. At 9:52am, they came back to get me. After getting all things prepped and ready Jeff was brought into the room and the C-Section was started.
At 10:29am Gabrielle came into the world weighing in at a whopping 7lbs 14 oz and 21 inches long. She had a head full of hair and olive colored skin. Jeff and I were very excited to see her and hold her for the first time.
This day was filled with lots of emotions for the two of us and our family. Seeing that it was the first grandchild on both sides of the family and first niece for most of our siblings. Much to say she would be spoiled.
Jeff was able to carry her to the nursery. As our parents stood waiting to see the gender of the baby, Jeff would not say a word. It was not until the nurse changed her diaper, that they found out they had a granddaughter. My sister and the Agnew’s (Tom, Amanda and Caleb) were waiting as well.
Finally around 11:30am, I was in the recovery room and getting to spend some time with my little girl.
Over the next several days Gabrielle had many visitors come see her.
Ashley
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