Whew, it's amazing how one little baby can keep us busy all day everyday! Haley is such a joy, but also keeps us hopping. She loves to be held (all the time) and loves to wake mommy and daddy up at night. Haley has already pulled out her NG tube since being at home. It happened at 4am a couple of nights ago and so mommy had to put it back in no matter how tired she was. We are hoping that as time goes on she will get into a routine at home. Actually the night before she slept through the night. We hope that continues. It's so amazing to look at Haley and see how far she has come along. It's hard to go back and imagine how tiny she was when she was born. Over time she has grown and her last weight measured, she weighed 8 pounds 12 oz. She is getting so chunky. She's got the rolls to prove it.
Haley all ready for bed
Haley lounging/sleeping
Rachel continues to progress. The other day an OT therapist worked with her on bottle feeding and she took 4 cc's of water without any problems. They will try her on formula soon. Also Rachel's feeds are being transitioned from continuous to intermittent. They will get her on a feeding schedule ready for home. Rachel is also down to 1/4 liter of oxygen and doing well. Rachel's updated weight is 8 pounds 12 oz. She has been sleeping good at night as well despite being in the NICU. Thomas and I have been alternating days on when we go see her so that everyday she gets to see her mommy or daddy. It's hard to not get to see her every day, but soon we will as her coming home date is getting closer. Rachel's doctor said that she is considered "level 2 NICU" even though she is still in the same bed in level 3. She is so well known by the nurses and doctors there that they decided to just keep her where she is until she goes home.
The many faces of Rachel
Rachel and Haley are so special to us. We are so blessed to have Haley home and to soon have Rachel home. Our lives have changed forever for good since our precious children have come into our lives.
On a side note: Rachel and Haley are fraternal. They do have many similar features, but they are not identical. All 6 of the babies were fraternal.
Friday, January 29, 2010
Wednesday, January 27, 2010
Making progress
We are loving having our little miracle girl Haley home with us. She is a handful, but she brings so much joy and happiness into our home. She likes to be held, talked to and loved. Daddy loves to kiss all over her and show his love to her. Haley has been having a hard time with reflux. Her pediatrician prescribed Prevacid. We think it has helped some, but she gets so fussy when she is fed. Haley is sporting a new look with her new glasses. We finally got them and she has been wearing them despite not liking to wear them. They are a hassle to keep on her, but she needs them to help her right eye focus and see. Seeing her with those glasses on make me laugh. She is a cutie! I think Haley has made some developmental progress since she has come home. ECI came to our house today and started the process of getting therapies for her vision impairment and OT.
Haley wearing her new pink glasses.
Rachel is doing well. Her oxygen has been decreased to 1/4 liter and she is tolerating it well. Tomorrow OT is going to start oral/motor therapy and next week let her take a bottle. We think she will do well taking the bottle because she sucks on her pacifier so well, but we will see. This is a big step for her to coming home. We have been waiting for a long time for Rachel to take the bottle. Rachel has done very well since the g-tube and fundo. As much as we really didn't want her to get the g-tube and fundo, we are glad she did because she has been making a lot of progress since. We still have not been given an idea of when she will come home, but we feel it is getting closer.
Rachel looking cute.
Haley wearing her new pink glasses.
Rachel is doing well. Her oxygen has been decreased to 1/4 liter and she is tolerating it well. Tomorrow OT is going to start oral/motor therapy and next week let her take a bottle. We think she will do well taking the bottle because she sucks on her pacifier so well, but we will see. This is a big step for her to coming home. We have been waiting for a long time for Rachel to take the bottle. Rachel has done very well since the g-tube and fundo. As much as we really didn't want her to get the g-tube and fundo, we are glad she did because she has been making a lot of progress since. We still have not been given an idea of when she will come home, but we feel it is getting closer.
Rachel looking cute.
Sunday, January 24, 2010
The joys of parenthood
It has been a busy weekend for all of us in the Stansel household. Haley is doing well, she continues to grow and develop at home. She was seen by a home health nurse yesterday. She will continue to see the nurse weekly for at least the next month or so. Thomas and I are excited to have her home. She is going to require many specialist coming in to help her. She will have Occupational therapy, physical therapy, and early childhood intervention people coming to see her. We are ready to take on the task of helping her get up to speed with a normal newborn baby. We know that it will take work and time, we will do what ever is required to help her. She has been a bit fussy the past few days, we think it is because she is in a new environment. She will adapt I am sure.
Rachel continues forward as well with her progression toward coming home. Rachel is on 1/2 Liter of Oxygen, down from the 3/4 liter she had been on for a while. In order to have Rachel join us at home,she needs to be down to 1/4 of a liter of Oxygen. She is getting closer and closer. She seems to have handled the g-tube/fundo surgery very well. We hope that this is all she needed to push her forward towards home. We are ready to have our precious Rachel home with us and her sister. We hope Rachel will soon be able to start trying to eat from a bottle. We don't know when that will be, but Dr. Hernandez said yesterday that they will have O.T. start working with her on her oral motor skills this up coming week. Rachel does appear to be so much more relaxed since she had the surgery. She is now off the morphine they were giving her for the surgery. She is cruising along, and we are so grateful to Dr. Bloss for his abilities and his kindness toward us and our beautiful girls.
It has been a long road for both girls and we know it is now just starting at home. We know the road ahead is going to be long and stressful at times, but Thomas and I are up to the challenge. We will do anything for our little girls. They have gone through so much, but yet have come so far. We love them more than they will possibly ever know. We are so grateful that our Heavenly Father has allotted us the opportunity to be parents. We know that mistakes will be made, but we will do our very best to raise our girls the way that the Lord has intended us to raise them. We know that our greatest responsibilities lie within our home. Parenthood is a sacred gift given to us by our Father In Heaven. We hope and pray we will live up to our responsibilities as parents.
Rachel continues forward as well with her progression toward coming home. Rachel is on 1/2 Liter of Oxygen, down from the 3/4 liter she had been on for a while. In order to have Rachel join us at home,she needs to be down to 1/4 of a liter of Oxygen. She is getting closer and closer. She seems to have handled the g-tube/fundo surgery very well. We hope that this is all she needed to push her forward towards home. We are ready to have our precious Rachel home with us and her sister. We hope Rachel will soon be able to start trying to eat from a bottle. We don't know when that will be, but Dr. Hernandez said yesterday that they will have O.T. start working with her on her oral motor skills this up coming week. Rachel does appear to be so much more relaxed since she had the surgery. She is now off the morphine they were giving her for the surgery. She is cruising along, and we are so grateful to Dr. Bloss for his abilities and his kindness toward us and our beautiful girls.
It has been a long road for both girls and we know it is now just starting at home. We know the road ahead is going to be long and stressful at times, but Thomas and I are up to the challenge. We will do anything for our little girls. They have gone through so much, but yet have come so far. We love them more than they will possibly ever know. We are so grateful that our Heavenly Father has allotted us the opportunity to be parents. We know that mistakes will be made, but we will do our very best to raise our girls the way that the Lord has intended us to raise them. We know that our greatest responsibilities lie within our home. Parenthood is a sacred gift given to us by our Father In Heaven. We hope and pray we will live up to our responsibilities as parents.
Friday, January 22, 2010
First full day with Haley at home
Our first night with little Haley at home was a sleepless one, but we didn't care because we were so excited to have her with us in her own home. Haley has truly blessed our home thus far. She has such a beautiful spirit about her. She is such a beautiful little girl, we love and cherish her so very much. She has brought the spirit into our home more fully. She is such a peaceful little thing. Haley slept fine from about 4pm yesterday until 4 am this morning. So yes we have had a lack of sleep, but that is ok it was worth every minute of it. Haley is being fed by a feeding pump through her nose into her tummy. She will have to be on this until she can complete a full bottle by mouth on her own. She is having a difficult time with it, but has made some improvement in that area. We hope she masters the art of bottle feeding soon. She is being fed every 3 hours over an hour by the pump. It feels like we are constantly feeding her. It will be tough to keep her on her feeding schedule when she will be out seeing doctors. Haley will have many doctors appointments with many different specialists within the next two to three weeks. She continues forward and we hope her progress will look up and not back.
Haley at home in her bed
Our sweet Rachel is doing really well since her surgery on Wednesday. She seems to be so much more relaxed since Dr. Bloss placed the gtube/fundo. Her reflux must not be bothering her nearly as bad a it was. Rachel decided she was tired of being intubated, so early this morning she pulled her IV and she exacerbated herself. She is now back on her nasal cannula and is fighting on. We hope more than anything else that this surgery will help her to come home sooner than later. We long for the day to make our family complete at home. I know that Haley is waiting patiently for her sister to get home. I think Haley and Rachel will be the best of friends one day. I know that the good Lord has watched over and blessed both our girls, and it is our prayer that he will continue to protect our beautiful children.
Rachel
Haley at home in her bed
Our sweet Rachel is doing really well since her surgery on Wednesday. She seems to be so much more relaxed since Dr. Bloss placed the gtube/fundo. Her reflux must not be bothering her nearly as bad a it was. Rachel decided she was tired of being intubated, so early this morning she pulled her IV and she exacerbated herself. She is now back on her nasal cannula and is fighting on. We hope more than anything else that this surgery will help her to come home sooner than later. We long for the day to make our family complete at home. I know that Haley is waiting patiently for her sister to get home. I think Haley and Rachel will be the best of friends one day. I know that the good Lord has watched over and blessed both our girls, and it is our prayer that he will continue to protect our beautiful children.
Rachel
Thursday, January 21, 2010
Haley is HOME!!!
Well what a day we have had today. This will be a day we will never forget. Yes today was the day Haley Karin Stansel arrived home. She arrived home around 8:00pm this evening. She did so well in the car home, in fact she slept the whole way home.
Haley had a very busy day today, she failed her car seat test 3 times. She finally passed with her 4th test. I think what it took was for her to have a full belly and for daddy to be their with her holding her pacifier in her mouth the whole time. Haley was sent home on an apnea monitor simply for our piece of mind. Dr. Cox said she didn't need it at all, but she wanted us to feel comfortable at home so she ordered it for her to use. Haley is home and resting this late evening. She is sleeping in our bedroom for now, until we feel comfortable putting her in her own bedroom. We are so thankful that everything went smoothly with Haley coming home this evening. We are so happy to have our precious little girl home with us. It has been a long time in waiting for this beautiful day. This truly has been one of the greatest days of our lives.
Haley all dressed and ready to go!
In her car seat
Enjoying being home
Rachel is still trying to recover from her surgery yesterday. She has been stable, but still is on her ventilator. We were hoping to have her off it today, but they tried her on the cpap but she only lasted a few minutes before she pooped out. The doctors think because of the morphine she is getting for pain, is why she hasn't come off the vent yet. We hope tomorrow will prove to be a better day as far as coming off the ventilator. She seems to be doing really well in every other area. She has been pretty out of it the whole day. We continue to pray that she will recover very soon, and back to her old self. We hope that she will be home as soon as possible so she can enjoy the comforts of her own home as does Haley right now. We long for her arrive home, we know that God is in charge and when the time is right she will be reunited with her family at home.
God be thanked for all that he has blessed Thomas and I with. He has been there every step of the way through thick and thin. We know that He will continue to help us in our journey as a family on this earth. We hope and pray that Thomas and I will live up to the challenge and to the holy calling of being a Mother and Father. We desire nothing more than to help our children to grow and become what God intends for them to become. We will never be able to do it on our own, that is why we hope that we will live in such a way that we can be guided by the Holy Ghost to help us in this great cause.
Haley had a very busy day today, she failed her car seat test 3 times. She finally passed with her 4th test. I think what it took was for her to have a full belly and for daddy to be their with her holding her pacifier in her mouth the whole time. Haley was sent home on an apnea monitor simply for our piece of mind. Dr. Cox said she didn't need it at all, but she wanted us to feel comfortable at home so she ordered it for her to use. Haley is home and resting this late evening. She is sleeping in our bedroom for now, until we feel comfortable putting her in her own bedroom. We are so thankful that everything went smoothly with Haley coming home this evening. We are so happy to have our precious little girl home with us. It has been a long time in waiting for this beautiful day. This truly has been one of the greatest days of our lives.
Haley all dressed and ready to go!
In her car seat
Enjoying being home
Rachel is still trying to recover from her surgery yesterday. She has been stable, but still is on her ventilator. We were hoping to have her off it today, but they tried her on the cpap but she only lasted a few minutes before she pooped out. The doctors think because of the morphine she is getting for pain, is why she hasn't come off the vent yet. We hope tomorrow will prove to be a better day as far as coming off the ventilator. She seems to be doing really well in every other area. She has been pretty out of it the whole day. We continue to pray that she will recover very soon, and back to her old self. We hope that she will be home as soon as possible so she can enjoy the comforts of her own home as does Haley right now. We long for her arrive home, we know that God is in charge and when the time is right she will be reunited with her family at home.
God be thanked for all that he has blessed Thomas and I with. He has been there every step of the way through thick and thin. We know that He will continue to help us in our journey as a family on this earth. We hope and pray that Thomas and I will live up to the challenge and to the holy calling of being a Mother and Father. We desire nothing more than to help our children to grow and become what God intends for them to become. We will never be able to do it on our own, that is why we hope that we will live in such a way that we can be guided by the Holy Ghost to help us in this great cause.
Wednesday, January 20, 2010
Surgery and Discharge planning
Today was yet another surgery day. Rachel had her g-tube and fundo done today around 2:00pm by Dr. Robert Bloss. Dr. Bloss is so amazing at what he does, of course he has been doing it for over 30 years. The surgery went well according to him. Not only did he come and speak with us after her surgery he sent us a text immediately after he was done stating, "Surgery went well. She is as cute on the inside as the outside." He is so personable and we appreciate him taking good care of Rachel and keeping us informed. She lost very little blood, in fact they didn't have to give her any blood at all. She is still recovering and probably will be until tomorrow after the anesthesia completely wears off. We hope this will do the trick for Rachel and we hope this will get her home much sooner than if she didn't have it done. Plus we felt strongly this will protect her from micro aspirating into her tiny lungs and thus causing more damage than what is already there. She is a little trooper and will get through this and hopefully be on the road to home sooner than later.
Rachel the day before her surgery
Tomorrow is a big day for Haley, mom and dad! Haley is scheduled to go home tomorrow in the late afternoon around 5pm. This has been a long awaited day. We are extremely excited, but yet nervous simply because of her history and all that she has been through. She is going to have to pass her car seat test first before they will even allow her out of the hospital. She failed it last night and they were doing it again tonight. She has to sit in her car seat for an hour without having any desaturations (below 85%) in her oxygen. This evening Haley got her RSV vaccine. This will help protect her from RSV. We will still be very diligent in keeping her away a lot of people during this cold and flu season. We definitely want to keep her healthy and out of the hospital. We met with her pediatrician (Dr. Farrior) this afternoon. He is very nice and seems to really care. Haley will be seeing him a couple of days after getting out of the hospital.
Haley sleeping away in Mommy's arms
Thomas and I are so grateful to our Heavenly Father and His Holy Son Jesus Christ for all that they have done to help our little girls. Without their help I know we would not have our two girls with us today on the earth. We owe everything to them for all they have done and continue to do in Haley and Rachel's behalf. We are also eternally grateful to the nurses and to the doctors at both Texas Woman's and Texas Children's Hospital. We are just so excited to finally be able to have at least one of our precious girls home with us.
Rachel the day before her surgery
Tomorrow is a big day for Haley, mom and dad! Haley is scheduled to go home tomorrow in the late afternoon around 5pm. This has been a long awaited day. We are extremely excited, but yet nervous simply because of her history and all that she has been through. She is going to have to pass her car seat test first before they will even allow her out of the hospital. She failed it last night and they were doing it again tonight. She has to sit in her car seat for an hour without having any desaturations (below 85%) in her oxygen. This evening Haley got her RSV vaccine. This will help protect her from RSV. We will still be very diligent in keeping her away a lot of people during this cold and flu season. We definitely want to keep her healthy and out of the hospital. We met with her pediatrician (Dr. Farrior) this afternoon. He is very nice and seems to really care. Haley will be seeing him a couple of days after getting out of the hospital.
Haley sleeping away in Mommy's arms
Thomas and I are so grateful to our Heavenly Father and His Holy Son Jesus Christ for all that they have done to help our little girls. Without their help I know we would not have our two girls with us today on the earth. We owe everything to them for all they have done and continue to do in Haley and Rachel's behalf. We are also eternally grateful to the nurses and to the doctors at both Texas Woman's and Texas Children's Hospital. We are just so excited to finally be able to have at least one of our precious girls home with us.
Monday, January 18, 2010
The unpredictable
So some of you know how the NICU is and how a coming home date can be unpredictable. It looks like Haley's coming home date will most likely be Thursday now. The doctor wants to do a sleep study to make sure Haley is sleeping well on room air and doesn't need any supplemental oxygen. She doubts that Haley will need to go home on oxygen, but she is doing this 6 hour study just to make sure. As much as I want her home, I totally agree with the doctor doing this test. I also want to make sure she is completely ready to come home. She will come home so very soon so one more day will be ok. Let's hope Thursday will be the day - for sure.
I enjoyed spending some time holding Rachel today. Her surgery for a g-tube and fundo is planned for Wednesday. We hope and pray the surgery will go well and she will recover quickly. We are also hoping this surgery will be her last and that it will help her come home sooner than later.
We have a busy week ahead of us, but Haley coming home and Rachel having surgery will all work out.
I enjoyed spending some time holding Rachel today. Her surgery for a g-tube and fundo is planned for Wednesday. We hope and pray the surgery will go well and she will recover quickly. We are also hoping this surgery will be her last and that it will help her come home sooner than later.
We have a busy week ahead of us, but Haley coming home and Rachel having surgery will all work out.
Sunday, January 17, 2010
The countdown is on
Thomas and I are getting more excited by the day as this Wednesday is the proposed day of when Haley is to come home. We will be so thrilled to have Haley with us at home. We both are getting more nervous by the day as well. We of course hope and pray that nothing ever happens while she is at home. Knowing how little and premature she was, it's a little nerve racking, but we know that a loving Heavenly Father will be there to assist us in her care. We love her so very much and will take good care of her. We will help her in any way we can to help her develop and grow. She will be getting therapy to help her development. She will have ECI (Early Childhood Intervention) and OT, PT and speech to help her learn to eat better from the bottle and other developmental issues. We will have a home health agency to supply her feeding tubes and formula. Things are getting into place and set up for Haley's arrival home. This past weekend we were educated on how to install a car seat correctly and how to put Haley in the car seat correctly. It was great seeing Haley sitting in her car seat. She didn't seem to mind it at all. It was a preview of what is to come. She fit in the car seat well. Haley finally made it to 8 pounds this weekend! We are so happy she is growing and getting bigger. We are also going to meet with the girl's Pediatrician, Dr. Mark Farrior on Wednesday before we take Haley home. It will be good to talk to their Pediatrician before Haley comes home. We have never met him before, but have heard good things about him.
Haley sleeping on Daddy's shoulder
I love this picture. It shows how cute and plump Haley is.
Rachel is getting bigger as well. She is 8 pounds 6oz. She continues to develop and is so alert. Rachel is so adorable! All the nurses love her and love to hold her. They say Rachel just melts in the arms of whoever is holding her. She's our cuddle bug. We look forward to the day we can write on our blog that Rachel will be coming home. It breaks our heart that she still has to be in the hospital and that she will need the fundo and g-tube. She is most likely to have the fundo and g-tube surgery this week. We hope and pray that all goes well with the surgery that Dr. Bloss will do a good job. We are hoping that this is the best thing for Rachel. The doctors all seem to think it is absolutely imperative that she gets it done. We continue to pray for guidance on this. We feel that if it isn't the right thing to do, the lord will make it known to us. We just don't want her to aspirate into her lungs and cause aspiration pneumonia. Rachel is such a little trooper, she will be ok.
Rachel loving cuddle time with Mommy
Rachel looking cute
Haley sleeping on Daddy's shoulder
I love this picture. It shows how cute and plump Haley is.
Rachel is getting bigger as well. She is 8 pounds 6oz. She continues to develop and is so alert. Rachel is so adorable! All the nurses love her and love to hold her. They say Rachel just melts in the arms of whoever is holding her. She's our cuddle bug. We look forward to the day we can write on our blog that Rachel will be coming home. It breaks our heart that she still has to be in the hospital and that she will need the fundo and g-tube. She is most likely to have the fundo and g-tube surgery this week. We hope and pray that all goes well with the surgery that Dr. Bloss will do a good job. We are hoping that this is the best thing for Rachel. The doctors all seem to think it is absolutely imperative that she gets it done. We continue to pray for guidance on this. We feel that if it isn't the right thing to do, the lord will make it known to us. We just don't want her to aspirate into her lungs and cause aspiration pneumonia. Rachel is such a little trooper, she will be ok.
Rachel loving cuddle time with Mommy
Rachel looking cute
Thursday, January 14, 2010
Decisions and anticipation
Both of the girls have had pretty good days the past few days. They are starting to really be more alert and active. Yesterday Thomas and I had the opportunity to sit in a conference with several of Rachel's doctors. Dr. Robertson her Pulmonologist, Dr. Krishna her Gastroenterologist, Dr. Jarell and Dr. Finkowski two of her Neonatologists. They went around the room and discussed Rachel's condition in regards to their specialty. Basically they all agreed that it would be in Rachel's best interest to have Dr. Bloss (our favorite surgeon)to place a fundo and gtube. We really struggled with what to do for Rachel the past few weeks since they mentioned it. We fought it for the longest time, but we feel strongly that it is the best thing for Rachel in the long run. Dr. Krishna told us that 99.99% of the time babies don't have any problems or wouldn't even know the fundo was there unless you told them. Very rare do they have complications with it. Much prayer and consideration went into this decision. I am completely confident Rachel will do just fine after this is done. It will only help her get home faster.
Rachel has been doing really good the past few days. She is continuing to grow and thrive. She is now 8lbs 4oz. Rachel seems to love her Boppy pillow that we bought for her to use. It is always touches me to see her in the Boppy sitting up looking around. She is such an inquisitive little thing. She is such a beautiful little girl with a lot of attitude and spunk. We can't wait for the day that we will have her home with us. She will add so much joy and happiness to our home.
Haley has been cruising along the past little while. I am sure she is ready to get out of the hospital and home. Haley weighs 7lbs 14oz. She is such a sweet little girl. She has a way of just making you feel so much better when you are with her as does Rachel. She just seems like a content little princess, well unless she needs her diaper changed or if she wants something, then you better watch out. Thomas and I learned infant CPR this evening at Texas Children's hospital in anticipation of Haley's arrival home next Wednesday (supposedly). It was very interesting to learn it all, and to see that Thomas and I weren't the only nervous ones in the room.
We don't have any recent photos as we have been forgetting to take the camera to the hospital. We will make sure to get some new photos soon.
Thanks to everyone for the wonderful positive comments on our blog. We really enjoy reading them.
Rachel has been doing really good the past few days. She is continuing to grow and thrive. She is now 8lbs 4oz. Rachel seems to love her Boppy pillow that we bought for her to use. It is always touches me to see her in the Boppy sitting up looking around. She is such an inquisitive little thing. She is such a beautiful little girl with a lot of attitude and spunk. We can't wait for the day that we will have her home with us. She will add so much joy and happiness to our home.
Haley has been cruising along the past little while. I am sure she is ready to get out of the hospital and home. Haley weighs 7lbs 14oz. She is such a sweet little girl. She has a way of just making you feel so much better when you are with her as does Rachel. She just seems like a content little princess, well unless she needs her diaper changed or if she wants something, then you better watch out. Thomas and I learned infant CPR this evening at Texas Children's hospital in anticipation of Haley's arrival home next Wednesday (supposedly). It was very interesting to learn it all, and to see that Thomas and I weren't the only nervous ones in the room.
We don't have any recent photos as we have been forgetting to take the camera to the hospital. We will make sure to get some new photos soon.
Thanks to everyone for the wonderful positive comments on our blog. We really enjoy reading them.
Tuesday, January 12, 2010
Happy 3rd Anniversary
Today Thomas and I celebrated our 3rd wedding anniversary. This anniversary was particularly special to us since this was the first time celebrating along with Haley and Rachel. Thinking back to the day we got married, it was filled with happiness, joy and love. Our marriage is eternal and everlasting. We desired to have a family and we have been blessed with eight beautiful children. Families are forever and we will always be a family. Haley and Rachel are our miracles and have brought our family much hope, faith, love and happiness. Today the girls had a good day. Tomorrow (Wednesday) we will be meeting with the gastroenterologist, pulmonologist and neonatologist in regard to Rachel. We hope this meeting will help us make the right decision for Rachel. Haley is doing well. Her neonatologist informed us that she will be able to go home next week. We don't have the exact date yet, but its getting closer! Our life at home is about to change - change for the good. What a momentous time for us. After 5 long months, we will finally be able to bring one of our girls home. What a blessing and a miracle.
Monday, January 11, 2010
Working towards home
Another week has seemed to flow by and the girls continue to progress in many ways. It has been a hard past few days for Thomas because he has been sick and has not been able to see the girls since Wednesday. It just breaks his heart to not be able to be with his girls daily. He is constantly calling and checking on them. He is so funny he insists on going with me to the hospital, but he sits in the waiting room while I visit with them. He says he at least needs to be in the same building with them. He is going to be a great daddy, and I love him very much.
Rachel continues to grow. She has reached yet another milestone in her growth curve. Rachel has reached the 8 pound mark as of last night. We continue to pray that she will continually gain weight well because her weight gain plays the biggest role in helping her overcome her reflux, lung disease and her floppy airway. She has such a fighting spirit and we are grateful for that. Thomas and I will meet with Rachel's pulmonologist, gastroenterologist and her neonatologist on Wednesday to discuss whether or not she really needs to have a fundo and g-tube put in, or to let her continue to grow and see what happens. The main worry for Rachel is if we don't do a fundo/g-tube she may micro-aspirate which will make her lungs worse and/or cause her to get aspiration pneumonia. We have been agonizing over what to do for Rachel. We want only what is best for her. We have heard bad things about a fundo and we have also heard how they have made all the difference in the world for other babies. We only desire what is best for Rachel, and we will continue to pray and find out what is best for her. We know that Rachel does have reflux, but we do not know exactly how bad it is. We always want to do the less invasive procedures first before we jump into more invasive procedures like a fundo. We hope that the less invasive way of her getting a gtube with out the fundo is what will work, but we will do what is best for her.
Rachel posing for the camera
Haley like her sister continues to grow as well. She now weighs in at 7lbs 10oz. It is also so important for Haley to grow because she also has reflux and we are hoping she will grow out of it so that she doesn't have to have a gtube or a fundo in the future. Haley is still trying to master bottle feeding, some days are better than others for her in regards to bottle feeding. We understood that it would take her a little longer to grasp the art of bottle feeding because she was born so prematurely. Her neonatologist suspects that she will need a g-tube in the future due to the long amount of time it may take her to take all her formula by the bottle. Currently Haley is getting transitioned to bolus feeds vs continuous feeds. When she gets to a more normal feeding (by bolus) schedule she will be ready to come home. Thomas and I will have to learn infant CPR and get the car seat fitted in our car before she is discharged from the hospital. We will be learning CPR this Thursday evening at Texas Children's Hospital. It is getting closer and closer for Haley to be discharged. What a great day that will be in her life and in ours. We hope that she continues to thrive and do well so that we will be able to bring her home as planned thus far.
Haley with her fingers on that feeding tube ready to pull. She has pulled that tube out 2 times today.
Rachel continues to grow. She has reached yet another milestone in her growth curve. Rachel has reached the 8 pound mark as of last night. We continue to pray that she will continually gain weight well because her weight gain plays the biggest role in helping her overcome her reflux, lung disease and her floppy airway. She has such a fighting spirit and we are grateful for that. Thomas and I will meet with Rachel's pulmonologist, gastroenterologist and her neonatologist on Wednesday to discuss whether or not she really needs to have a fundo and g-tube put in, or to let her continue to grow and see what happens. The main worry for Rachel is if we don't do a fundo/g-tube she may micro-aspirate which will make her lungs worse and/or cause her to get aspiration pneumonia. We have been agonizing over what to do for Rachel. We want only what is best for her. We have heard bad things about a fundo and we have also heard how they have made all the difference in the world for other babies. We only desire what is best for Rachel, and we will continue to pray and find out what is best for her. We know that Rachel does have reflux, but we do not know exactly how bad it is. We always want to do the less invasive procedures first before we jump into more invasive procedures like a fundo. We hope that the less invasive way of her getting a gtube with out the fundo is what will work, but we will do what is best for her.
Rachel posing for the camera
Haley like her sister continues to grow as well. She now weighs in at 7lbs 10oz. It is also so important for Haley to grow because she also has reflux and we are hoping she will grow out of it so that she doesn't have to have a gtube or a fundo in the future. Haley is still trying to master bottle feeding, some days are better than others for her in regards to bottle feeding. We understood that it would take her a little longer to grasp the art of bottle feeding because she was born so prematurely. Her neonatologist suspects that she will need a g-tube in the future due to the long amount of time it may take her to take all her formula by the bottle. Currently Haley is getting transitioned to bolus feeds vs continuous feeds. When she gets to a more normal feeding (by bolus) schedule she will be ready to come home. Thomas and I will have to learn infant CPR and get the car seat fitted in our car before she is discharged from the hospital. We will be learning CPR this Thursday evening at Texas Children's Hospital. It is getting closer and closer for Haley to be discharged. What a great day that will be in her life and in ours. We hope that she continues to thrive and do well so that we will be able to bring her home as planned thus far.
Haley with her fingers on that feeding tube ready to pull. She has pulled that tube out 2 times today.
Friday, January 8, 2010
Always making progress
The girls had a good day. We got the test results back on Rachel's test (ph probe) today. It does show she has reflux which we already knew, but her reflux is not that terrible. The GI doctor doesn't think she needs a fundo, but he does think she needs a g-tube. A g-tube will make it easier for her in the long run for feeds and when she does learn to take a bottle. Not sure when the g-tube will be placed yet. Rachel's feeding rate was increased today to help with her weight gain. Not much else going on with her besides the fact she is a pacifier addict. She is looking as cute as ever.
Rachel wearing her Longhorn outfit
Haley is doing well. Today I learned how to place a nasogastric tube. With the help from the nurse I placed one in Haley. She wasn't happy about it, but once it was placed she was fine. Haley's feeds were advanced today as well. She is getting her feeds at a faster rate over 1 1/2 hours instead of 2 hours. Later she will get her feeds over 1 hour. Haley has been getting better at taking the bottle. She took 26cc this afternoon. She is slowly but surely getting the hang of it. Things are progressing to her coming home. Thomas and I are going to take a CPR class and have a car seat fitting at some time within the next couple of weeks. Haley is looking cute as well. She is finally starting to grow some hair on her head. It's still hard to see it in pictures, but I can finally see some hair on that little bald head of hers.
Haley wearing her Longhorn outfit
Rachel wearing her Longhorn outfit
Haley is doing well. Today I learned how to place a nasogastric tube. With the help from the nurse I placed one in Haley. She wasn't happy about it, but once it was placed she was fine. Haley's feeds were advanced today as well. She is getting her feeds at a faster rate over 1 1/2 hours instead of 2 hours. Later she will get her feeds over 1 hour. Haley has been getting better at taking the bottle. She took 26cc this afternoon. She is slowly but surely getting the hang of it. Things are progressing to her coming home. Thomas and I are going to take a CPR class and have a car seat fitting at some time within the next couple of weeks. Haley is looking cute as well. She is finally starting to grow some hair on her head. It's still hard to see it in pictures, but I can finally see some hair on that little bald head of hers.
Haley wearing her Longhorn outfit
Thursday, January 7, 2010
Latest happenings
The girls are doing well. Haley had her follow up eye exam on Wednesday and the news was good. The doctor said that he was optimistic that Haley will have some vision in her right eye. To help her have some vision, she will need to wear glasses designed for infants. We were given a prescription for infant glasses and I ordered them today. They will be ready in 2 weeks. I have never seen glasses so small! I chose some cute pink ones. She will look cute with them on. Haley continues to do well in level 2. She is still getting the bottle 2 times a day. She still isn't taking a lot of formula per bottle (4-10cc at one time). It's going to take her awhile to get to the point of her taking all her formula needs from a bottle. She will go home on a nasogastric tube while she continues to learn to take a bottle. Thomas and I are going to have to learn how to place the tube should it come out. I'm nervous about it, but will do whatever it takes to get her home. It may be another 2 weeks before Haley comes home.
Haley loving that pacifier.
Rachel is doing well. Rachel is still on the nasal cannula and the doctor feels she is doing well on it. She is on 3/4 liter of oxygen which is a lot and she won't be able to go home on that much. Her airway needs to continue to get stronger and her oxygen needs need to be lower before she will be able to come home. We don't know how long that will take. Rachel had to repeat a test to check her reflux. We are waiting on the GI doctor to give us the results. Most likely the GI doctor will place a g-tube in Rachel in order to get the feeding tube out of her nose and make feedings easier and better for her. Rachel won't be able to take anything by mouth yet since she is at high risk for aspiration. She continues to suck on her pacifier really well. We are so grateful for that. With her sucking on that it will keep her oral motor skills going.
Rachel has discovered her hands and fingers. She has been putting them in her mouth.
This is what has been going on with the girls lately. They are so beautiful! We love them so very much and are so grateful to have them in our lives. Yes it is hard to not have them at home and to see them go through so much in their young lives, but they are truly miracles who are suppose to be here to enrich our lives. Rachel and Haley are teaching us. They are teaching us love, faith, trust, hope and to never stop believing. Never stop believing in miracles and in our Savior Jesus Christ. These challenging times will end even though it doesn't seem like it at times, but Rachel and Haley will be home one day and they will fill our home and our lives with so much joy, happiness and laughter.
Haley loving that pacifier.
Rachel is doing well. Rachel is still on the nasal cannula and the doctor feels she is doing well on it. She is on 3/4 liter of oxygen which is a lot and she won't be able to go home on that much. Her airway needs to continue to get stronger and her oxygen needs need to be lower before she will be able to come home. We don't know how long that will take. Rachel had to repeat a test to check her reflux. We are waiting on the GI doctor to give us the results. Most likely the GI doctor will place a g-tube in Rachel in order to get the feeding tube out of her nose and make feedings easier and better for her. Rachel won't be able to take anything by mouth yet since she is at high risk for aspiration. She continues to suck on her pacifier really well. We are so grateful for that. With her sucking on that it will keep her oral motor skills going.
Rachel has discovered her hands and fingers. She has been putting them in her mouth.
This is what has been going on with the girls lately. They are so beautiful! We love them so very much and are so grateful to have them in our lives. Yes it is hard to not have them at home and to see them go through so much in their young lives, but they are truly miracles who are suppose to be here to enrich our lives. Rachel and Haley are teaching us. They are teaching us love, faith, trust, hope and to never stop believing. Never stop believing in miracles and in our Savior Jesus Christ. These challenging times will end even though it doesn't seem like it at times, but Rachel and Haley will be home one day and they will fill our home and our lives with so much joy, happiness and laughter.
Monday, January 4, 2010
5 Months Old!
Today the girls turned 5 months old. They have progressed and come so far the last 5 months. We are so happy with their progress and their beautiful lives.
Haley moved to NICU level 2 today! She is now in the feeder and grower stage. She has no IV's and is not getting any medications. She continues to take the bottle 2 times a day. She will be worked up to 3 times a day and so forth. Haley has a great suck. She has been practicing that suck for a while with her pacifier, which she still loves. Haley is good at letting us know what she wants. She gets so upset when she has a dirty diaper and she smacks her lips when she wants her pacifier or the bottle. She is such a sweetie. She is beginning to smile and is getting more alert and active everyday.
Haley's 5 month old picture
Rachel is doing well. She is still on the nasal cannula. It has been a week since she was put on it and she continues on. Rachel also is good at letting us know what she wants. She screams for her pacifier when its not in her mouth. She also gets upset when she has a dirty diaper. Rachel has given us a little smile here and there as well. Rachel is so strong. She is able to lift her head and move it around. She loves to grip my finger when I'm holding her.
Rachel's 5 month old picture
Both our girls are so precious and adorable. We love them so very much and look forward to being a family at home. It's getting harder to leave the hospital without them. The day they come home is getting closer and closer and knowing that makes it harder to be patient. It will be a wonderful feeling to be together at home. Until then, we pray for their comfort and continual progress in the hospital. We are working on getting the nursery ready. We hope to get to work on it each weekend and that it will be done by the time Haley gets home. We still don't have an exact date on when Haley will come home, but we are hoping soon.
Correction: the pictures in yesterday's blog were the same. The wrong picture was put in accidentally. It has been fixed.
Haley moved to NICU level 2 today! She is now in the feeder and grower stage. She has no IV's and is not getting any medications. She continues to take the bottle 2 times a day. She will be worked up to 3 times a day and so forth. Haley has a great suck. She has been practicing that suck for a while with her pacifier, which she still loves. Haley is good at letting us know what she wants. She gets so upset when she has a dirty diaper and she smacks her lips when she wants her pacifier or the bottle. She is such a sweetie. She is beginning to smile and is getting more alert and active everyday.
Haley's 5 month old picture
Rachel is doing well. She is still on the nasal cannula. It has been a week since she was put on it and she continues on. Rachel also is good at letting us know what she wants. She screams for her pacifier when its not in her mouth. She also gets upset when she has a dirty diaper. Rachel has given us a little smile here and there as well. Rachel is so strong. She is able to lift her head and move it around. She loves to grip my finger when I'm holding her.
Rachel's 5 month old picture
Both our girls are so precious and adorable. We love them so very much and look forward to being a family at home. It's getting harder to leave the hospital without them. The day they come home is getting closer and closer and knowing that makes it harder to be patient. It will be a wonderful feeling to be together at home. Until then, we pray for their comfort and continual progress in the hospital. We are working on getting the nursery ready. We hope to get to work on it each weekend and that it will be done by the time Haley gets home. We still don't have an exact date on when Haley will come home, but we are hoping soon.
Correction: the pictures in yesterday's blog were the same. The wrong picture was put in accidentally. It has been fixed.
Sunday, January 3, 2010
Closer to coming home
The girls both had a great New Years weekend. They both seem to have started off the new year with a bang. We are grateful for the progress our little girls have made thus far. We are excited to have our girls out of the hospital and home to the comfort of their own home this year.
Rachel is still fighting strong on her nasal cannula. Rachel's respiratory rate at times is a little high for the doctors comfort, but she is doing better. Today she was able to be weened down from a liter of oxygen to 3/4 of a liter of oxygen. We will take any progress she makes on the cannula. Rachel is so alert and attentive, looking around with her big eyes wide open. She loves her little pacifier so much. She will sit and chomp on the pacifier for hours. I think it is her security blanket. Rachel is progressing and is doing great compared to say a few weeks ago. She really likes the nasal cannula so much better than the cpap. We are so grateful for all the progress she is making.
First family photo with Rachel in the new year
Rachel sucking on that pacifier
Haley had a few changes today. Haley was able to finally have her PICC line removed today since she is off the TPN and getting full feeds. It was so great to see that PICC line out. It has been in her for months. We are grateful to have that out simple for the fact that she is always at greater risk for infection with it in. She has had several infections because of it. Haley also is doing such a great job on her bottle feedings. She is still a little slow at it, but she seems to be getting the hang of it better and better each day. The nurses keep talking like Haley will be going home soon. It's awkward to be hearing this, but Thomas and I are extremely excited to be hearing those words - "going home soon". We at times thought this day would never come. It really feels like very soon little Haley will be home for good. I can't wait to be able to have her home. We hope and pray little Rachel isn't to far off. We are so thankful for the progression Haley has made despite all the surgeries and infections that she has had to endure. She is such a strong little baby.
First family photo with Haley in the new year
Haley taking the bottle
Rachel is still fighting strong on her nasal cannula. Rachel's respiratory rate at times is a little high for the doctors comfort, but she is doing better. Today she was able to be weened down from a liter of oxygen to 3/4 of a liter of oxygen. We will take any progress she makes on the cannula. Rachel is so alert and attentive, looking around with her big eyes wide open. She loves her little pacifier so much. She will sit and chomp on the pacifier for hours. I think it is her security blanket. Rachel is progressing and is doing great compared to say a few weeks ago. She really likes the nasal cannula so much better than the cpap. We are so grateful for all the progress she is making.
First family photo with Rachel in the new year
Rachel sucking on that pacifier
Haley had a few changes today. Haley was able to finally have her PICC line removed today since she is off the TPN and getting full feeds. It was so great to see that PICC line out. It has been in her for months. We are grateful to have that out simple for the fact that she is always at greater risk for infection with it in. She has had several infections because of it. Haley also is doing such a great job on her bottle feedings. She is still a little slow at it, but she seems to be getting the hang of it better and better each day. The nurses keep talking like Haley will be going home soon. It's awkward to be hearing this, but Thomas and I are extremely excited to be hearing those words - "going home soon". We at times thought this day would never come. It really feels like very soon little Haley will be home for good. I can't wait to be able to have her home. We hope and pray little Rachel isn't to far off. We are so thankful for the progression Haley has made despite all the surgeries and infections that she has had to endure. She is such a strong little baby.
First family photo with Haley in the new year
Haley taking the bottle
Friday, January 1, 2010
Happy New Year!
Happy New Year! What a great year 2010 will be. We hope and pray that our girls have a much better year in 2010 than 2009. They both seem to have started the year off really well. This New Years day we were able to spend good quality time with the two most important girls in our lives, little Rachel and Haley.
Rachel is still cruising along on her nasal cannula. She is now on day 4 of her nasal cannula and she seems to be tolerating it very well. She seems to like the nasal cannula so much better than the cpap. Rachel definitely is a girl who will never give up on anything. She will fight to the bitter end. We love to be around her and just feel her special spirit.
Rachel sleeping
Our little Haley also had a great day for her first new years. Thomas was able to hold her for a good amount of time today while I was working. He loved spending a little daddy daughter time with Haley. Haley has a new physician/attending this month. It's Dr Jen Arnold from TLC the little couple. She is such a neat lady. She is very nice and we are grateful for the care she is giving Haley. Tonight Haley drank from the bottle. It was the first time Thomas had seen her eat from a bottle. It was neat to see how excited Thomas got watching Haley take her bottle. He has waited a long time to see that. We are also excited that Haley has finally made it to 7 pounds!!! She is growing. Haley is such a special little girl. She has a way of melting our hearts when we are around her. She has been through so much, and yet never gives up. We are so grateful to the Lord for sparing her life ad allowing her to remain with us on this earth. We are so eternally grateful that Both our little miracles are permitted to remain with us here on earth. We love and cherish both Rachel and Haley more than words can describe.
Haley taking the bottle. This is the first picture we were able to get of her taking the bottle.
Rachel is still cruising along on her nasal cannula. She is now on day 4 of her nasal cannula and she seems to be tolerating it very well. She seems to like the nasal cannula so much better than the cpap. Rachel definitely is a girl who will never give up on anything. She will fight to the bitter end. We love to be around her and just feel her special spirit.
Rachel sleeping
Our little Haley also had a great day for her first new years. Thomas was able to hold her for a good amount of time today while I was working. He loved spending a little daddy daughter time with Haley. Haley has a new physician/attending this month. It's Dr Jen Arnold from TLC the little couple. She is such a neat lady. She is very nice and we are grateful for the care she is giving Haley. Tonight Haley drank from the bottle. It was the first time Thomas had seen her eat from a bottle. It was neat to see how excited Thomas got watching Haley take her bottle. He has waited a long time to see that. We are also excited that Haley has finally made it to 7 pounds!!! She is growing. Haley is such a special little girl. She has a way of melting our hearts when we are around her. She has been through so much, and yet never gives up. We are so grateful to the Lord for sparing her life ad allowing her to remain with us on this earth. We are so eternally grateful that Both our little miracles are permitted to remain with us here on earth. We love and cherish both Rachel and Haley more than words can describe.
Haley taking the bottle. This is the first picture we were able to get of her taking the bottle.
Subscribe to:
Posts (Atom)