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.
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