Dear Friends,
Thank you for your prayers today! We received a phone call early this morning that Dr. Hines (Reagan's heart doctor) had a cancellation this morning and would be able to start her surgery around 9:00 AM instead of noon. Amy and I headed over to pray with Reagan and to spend time with her prior to having surgery. Soon after, she was taken down to the operating room for her procedure. After about an hour and a half, the Doctor came out and told us that everything went well during the surgery and that Reagan was doing great! He showed us pictures of how the procedure was done which was quite interesting. Reagan seemed quite tired when she came back up to her parking space in the NICU but her body responded well to the surgery and her prospects are good for a full recovery! We are very grateful for all that God has done to help Reagan and are blessed to have friends that have been willing to stand beside us and will continue to stand with us for the next couple of months. Thank you all for your help! We will keep you updated as Reagan continues to improve and will probably be posting more pictures either tonight or tomorrow! We love you all dearly!
Robert, Amy, and Baby Reagan
Wednesday, April 9, 2008
Monday, April 7, 2008
Surgery Scheduled
Dear Friends and Family,
Reagan had another ECHO today which shows she still has a moderate PDA. I met with the surgeon and Reagan is scheduled to have a PDA ligation on Wednesday around 12:00pm. This is considered to be a minor surgery (as minor as heart surgery can be). Please keep her in your thoughts and prayers that everything will go smoothly and we will have a quick recovery. She is doing very well today. She remains on low ventilation rate and pressures. They are planning to extubate Reagan from the vent. around 1000grams. She weighs 920grams today so we are getting close. Our hope is that she will rebound quickly after surgery, start gaining weight and breathing totally on her own. Her blood cultures have been negative since the 4th so hopefully we will stay infection free!!!!! The only bad news is Reagan has a IV infiltrate on her foot. It seems to be healing nicely so we hope to have little or NO scarring. If we get through this NICU visit with only a scar I will be ecstatic!! God has been so good to us! We are continuing to trust Him and rely on His ultimate expertise to get Reagan and us through theses next couple of months. Please pray He will guide the surgeons hands and give Reagan's medical team all the knowledge they need to take care of her. As always thanks for the thoughts and prayers!
We love you!
Amy and Robert
Reagan had another ECHO today which shows she still has a moderate PDA. I met with the surgeon and Reagan is scheduled to have a PDA ligation on Wednesday around 12:00pm. This is considered to be a minor surgery (as minor as heart surgery can be). Please keep her in your thoughts and prayers that everything will go smoothly and we will have a quick recovery. She is doing very well today. She remains on low ventilation rate and pressures. They are planning to extubate Reagan from the vent. around 1000grams. She weighs 920grams today so we are getting close. Our hope is that she will rebound quickly after surgery, start gaining weight and breathing totally on her own. Her blood cultures have been negative since the 4th so hopefully we will stay infection free!!!!! The only bad news is Reagan has a IV infiltrate on her foot. It seems to be healing nicely so we hope to have little or NO scarring. If we get through this NICU visit with only a scar I will be ecstatic!! God has been so good to us! We are continuing to trust Him and rely on His ultimate expertise to get Reagan and us through theses next couple of months. Please pray He will guide the surgeons hands and give Reagan's medical team all the knowledge they need to take care of her. As always thanks for the thoughts and prayers!
We love you!
Amy and Robert
Friday, April 4, 2008
2 LBS. Today! (And One Calendar Month Old)
Dear Friends,
I hope that you are all doing well and would like to, again, thank you for all of your prayer support. We have definitely felt it over the last few days and we know that God is with us! Reagan had a few rough days, as noted in previous blogs, but seems to be getting her energy back. Today she was quite active and very alert at times. Before we left tonight, her eyes were opened wide just checking things out. I'm not sure what all she can see at this age, my guess is just light and darkness, but she sure seemed to be looking at us and it was great to just look into her eyes. It was love all over again! Her day started out a little bit rough as she had several IV's that did not work and had to be stuck several times...but eventually one IV worked and she didn't have to be bothered much throughout the rest of the day. She still has a couple of infections (not just one as we previously thought) that I will not try to pronounce, and is being treated with antibiotics for those. A common infection in Hospitals is MRSA and it appears that Reagan has this (I don't know what the initials stand for). The staff takes a blood culture each day to see if the infection has been taken care of or not. The last few cultures still show that she has infection but we are praying that she will overcome the infections quickly and they will not show up anymore in her body. I am very thankful that Reagan is energetic despite having the infections. She gets cuter every day!!!!
I was telling Pastor Dan the other day about how much I enjoyed just peeking through the curtain of Reagan's isolet to look at her without bothering her too much. Many of you know what an isolet is and have seen it in Reagan's pictures - it is basically a glass enclosure in which temperature and other variables can be moderated for maximum protection and health for a baby. It has an isolet cover that has 5 panels on it that can be moved to look in at her. Before she got her infections (I still peek in at her now, but just have to be careful not to spread her infection to others), I found myself, many times each day, just taking a peek at Reagan to see how she was doing and to feel the wonderful feelings of love and adoration that one feels when in the presence of one of God's greatest miracles... the miracle of life! I was always very careful to just move the panels of her bed a little bit so that she would not see light coming in her bed and get scared that she was going to be examined, moved, or stuck again. Sometimes, I would be looking in and would be just thrilled with the progress of the day. On other occasions, days where she was struggling, I would peek in on her to just make sure that she was okay. Either way, whether she was having a good or bad day, I still felt such wonderful feelings of love for this precious little one! It may sound silly, but there was also a very distinct smell that I would smell with my nose up close to her isolet. No, it was not a dirty diaper smell, but this sweet clean aroma. Amy laughed at me numerous times for smelling Reagan's isolet when I looked at her, but it just seemed to get hold of my senses and many times over I thought how unusually neat that smell was. It smelled of life to me as I looked at Reagan and reminded me many times of God and His wonderful creation of human life. Interesting or strange, however you find it, it was special to me and I thank God for whatever that smell was!
Okay, I had a point that I was getting to about checking in on Reagan... I was often reminded (almost every time) of how God loves us. I thought about how many times during the day, He pushes the clouds out of the way and looks in on me (and you) to just see how everything is going! I know that some days He looks down on me with pride as I follow Him every step of the way. I bet His smile lights up Heaven! Other days, I'm sure that He sees something in my life that is not pleasing to Him and just shakes His head with a look of concern, wondering when I am going to turn to Him for help or guidance so that He can keep me from undo pain. Maybe He longingly sits there looking at me, just wanting me to spend time with Him so that He can lift my burdens and help me with life, hoping that I will commune with Him and request His presence in my life so that I don't repeat past mistakes. But, however He is looking at me, I know that He looks down on me with the love of a Father! I'm sure there is a sparkle in His eye as He looks at me with love for this precious creation that belongs to Him! God loves and cares about us all, more than we could ever imagine and I am thankful to Him for choosing to love me!!! He loves you too!!!
Prayer requests for Reagan (Problems can arise at any time in a child as small as Reagan as her body is physically not able to fight like ours - so prayers are critical for her to thrive)
1. Infections to be eliminated immediately and for no more!
2. PDA to reclose when the infection is gone (or sooner) without surgery
3. Having problems keeping IV's and running out of places to stick - pray that she will always have a way of getting the medicines and nutrients that she needs. (there are several other ways but most are somewhat invasive - so pray that when she has to have these, that she will not get infections)
4. Continued help with her lung growth and development
Thank you for praying for this precious little one! We love you all and thank you for caring about our little family! God Bless YOU!
Robert and Amy
I hope that you are all doing well and would like to, again, thank you for all of your prayer support. We have definitely felt it over the last few days and we know that God is with us! Reagan had a few rough days, as noted in previous blogs, but seems to be getting her energy back. Today she was quite active and very alert at times. Before we left tonight, her eyes were opened wide just checking things out. I'm not sure what all she can see at this age, my guess is just light and darkness, but she sure seemed to be looking at us and it was great to just look into her eyes. It was love all over again! Her day started out a little bit rough as she had several IV's that did not work and had to be stuck several times...but eventually one IV worked and she didn't have to be bothered much throughout the rest of the day. She still has a couple of infections (not just one as we previously thought) that I will not try to pronounce, and is being treated with antibiotics for those. A common infection in Hospitals is MRSA and it appears that Reagan has this (I don't know what the initials stand for). The staff takes a blood culture each day to see if the infection has been taken care of or not. The last few cultures still show that she has infection but we are praying that she will overcome the infections quickly and they will not show up anymore in her body. I am very thankful that Reagan is energetic despite having the infections. She gets cuter every day!!!!
I was telling Pastor Dan the other day about how much I enjoyed just peeking through the curtain of Reagan's isolet to look at her without bothering her too much. Many of you know what an isolet is and have seen it in Reagan's pictures - it is basically a glass enclosure in which temperature and other variables can be moderated for maximum protection and health for a baby. It has an isolet cover that has 5 panels on it that can be moved to look in at her. Before she got her infections (I still peek in at her now, but just have to be careful not to spread her infection to others), I found myself, many times each day, just taking a peek at Reagan to see how she was doing and to feel the wonderful feelings of love and adoration that one feels when in the presence of one of God's greatest miracles... the miracle of life! I was always very careful to just move the panels of her bed a little bit so that she would not see light coming in her bed and get scared that she was going to be examined, moved, or stuck again. Sometimes, I would be looking in and would be just thrilled with the progress of the day. On other occasions, days where she was struggling, I would peek in on her to just make sure that she was okay. Either way, whether she was having a good or bad day, I still felt such wonderful feelings of love for this precious little one! It may sound silly, but there was also a very distinct smell that I would smell with my nose up close to her isolet. No, it was not a dirty diaper smell, but this sweet clean aroma. Amy laughed at me numerous times for smelling Reagan's isolet when I looked at her, but it just seemed to get hold of my senses and many times over I thought how unusually neat that smell was. It smelled of life to me as I looked at Reagan and reminded me many times of God and His wonderful creation of human life. Interesting or strange, however you find it, it was special to me and I thank God for whatever that smell was!
Okay, I had a point that I was getting to about checking in on Reagan... I was often reminded (almost every time) of how God loves us. I thought about how many times during the day, He pushes the clouds out of the way and looks in on me (and you) to just see how everything is going! I know that some days He looks down on me with pride as I follow Him every step of the way. I bet His smile lights up Heaven! Other days, I'm sure that He sees something in my life that is not pleasing to Him and just shakes His head with a look of concern, wondering when I am going to turn to Him for help or guidance so that He can keep me from undo pain. Maybe He longingly sits there looking at me, just wanting me to spend time with Him so that He can lift my burdens and help me with life, hoping that I will commune with Him and request His presence in my life so that I don't repeat past mistakes. But, however He is looking at me, I know that He looks down on me with the love of a Father! I'm sure there is a sparkle in His eye as He looks at me with love for this precious creation that belongs to Him! God loves and cares about us all, more than we could ever imagine and I am thankful to Him for choosing to love me!!! He loves you too!!!
Prayer requests for Reagan (Problems can arise at any time in a child as small as Reagan as her body is physically not able to fight like ours - so prayers are critical for her to thrive)
1. Infections to be eliminated immediately and for no more!
2. PDA to reclose when the infection is gone (or sooner) without surgery
3. Having problems keeping IV's and running out of places to stick - pray that she will always have a way of getting the medicines and nutrients that she needs. (there are several other ways but most are somewhat invasive - so pray that when she has to have these, that she will not get infections)
4. Continued help with her lung growth and development
Thank you for praying for this precious little one! We love you all and thank you for caring about our little family! God Bless YOU!
Robert and Amy
Wednesday, April 2, 2008
Infection Update
Dear Friends and Family,
I apologize for my previous blog entry. I was in a hurry earlier and did not realize I rambled so much with medical mumbo-jumbo. Reagan had a better day yesterday. She is still very sleepy and does not like to be touched. I think with all the needle sticks yesterday she would just like to be left alone. She did better with her oxygen on the vent and tolerated her procedures better than expected. We received results from her lumbar puncture and so far everything looks great so we can rule out meningitis for now. (Praise God) I don't think mommy or daddy would have dealt well with more bad news. Her urine output is down so please pray she will fix this problem soon without having futher complications with fluid retention. I am so thankful Reagan made it a month without any infections or major set backs. Hopefully she had time to gain strength, grow and will be able to fight off this infection quickly. Please keep her in your thoughts and prayers.
I too would appreciate your prayers as I seem to become an emotional basket case at times. I am learning how difficult it is to see your child sick and you feel so helpless. I have moments where I feel physically, emotionally, and spiritually spent but then God sends someone along to lift my spirits and I make it another day. I was very excited yesterday to see a little girl I took care of in the NICU, who was 22 weeks gestation and weighed 15 ounces at birth, celebrate her 1 year birthday. Her mom brought her by Baptist and it was so encouraging to see how she has grown and seems to be right on schedule developmentally. She seemed very interested in Robert and talked a lot of baby talk to him. I don't believe this was just a coincidence; God knew Robert and I needed some encouragement. Isn't it amazing how when you feel like you're at your lowest God shows Himself in a miraculous way and lifts you up again?! We didn't think that little girl had a chance at life, but God is a mighty, powerful Physician and she is a beautiful, healthy baby girl.
As always thanks for the continued support and prayers!
We love you guys!
Amy and Robert
I apologize for my previous blog entry. I was in a hurry earlier and did not realize I rambled so much with medical mumbo-jumbo. Reagan had a better day yesterday. She is still very sleepy and does not like to be touched. I think with all the needle sticks yesterday she would just like to be left alone. She did better with her oxygen on the vent and tolerated her procedures better than expected. We received results from her lumbar puncture and so far everything looks great so we can rule out meningitis for now. (Praise God) I don't think mommy or daddy would have dealt well with more bad news. Her urine output is down so please pray she will fix this problem soon without having futher complications with fluid retention. I am so thankful Reagan made it a month without any infections or major set backs. Hopefully she had time to gain strength, grow and will be able to fight off this infection quickly. Please keep her in your thoughts and prayers.
I too would appreciate your prayers as I seem to become an emotional basket case at times. I am learning how difficult it is to see your child sick and you feel so helpless. I have moments where I feel physically, emotionally, and spiritually spent but then God sends someone along to lift my spirits and I make it another day. I was very excited yesterday to see a little girl I took care of in the NICU, who was 22 weeks gestation and weighed 15 ounces at birth, celebrate her 1 year birthday. Her mom brought her by Baptist and it was so encouraging to see how she has grown and seems to be right on schedule developmentally. She seemed very interested in Robert and talked a lot of baby talk to him. I don't believe this was just a coincidence; God knew Robert and I needed some encouragement. Isn't it amazing how when you feel like you're at your lowest God shows Himself in a miraculous way and lifts you up again?! We didn't think that little girl had a chance at life, but God is a mighty, powerful Physician and she is a beautiful, healthy baby girl.
As always thanks for the continued support and prayers!
We love you guys!
Amy and Robert
One month old (and 1 day)
I have room for the ET tube, feeding tube and my thumb!Dear Friends and Family,
Here is a quick update on Reagan's condition. My non medical friends will have to excuse the medical lingo. Yesterday, the plan was to extubate (take off the vent) Reagan after her morning labs and gas. I think Reagan heard about this plan and decided to play a game with us. Her morning gas was bad with co2 in the 80's. Her CBC and CRP showed elevations indicating an infection. They quickly did blood culture from her PCVC, urine culture, and tracheal aspirate. Within 24 hours her blood and tracheal cultures were growing staphylococcus aureus which we are treating with Gentamycin and vancomycin. They pulled out her PCVC due to the infection. She had a lumbar puncture this morning to rule out meningitis. We are still waiting on these results. Hopefully we started treating the infection early and will not have any complications. Needless to say Reagan did not get extubated and went up on her vent settings. She was at a rate of 35 20/6 with support of 7. This mornings gas was much better and we are at a rate of 33 19/5. She is 25%-35% on her FIO2. Her PDA is moderate again so they reduced her feeds to 0.4mls/hour. We will talk about surgery if her PDA is still moderate after the infection is gone. Please continue to pray for Reagan. She has lost some of her spunk and you can tell she just doesn't feel well.
On a positive note Reagan now weighs 1 pound 14 ounces and is 13 3/4 inches long. She gained 8 ounces and 1 3/4 inches in one month. Way to go Reagan. She loves to suck her thumb as you see in the picture and is a big fan of sucrose. The sugar addiction starts early.
Grow Reagan Grow!!!!!!
Tuesday, April 1, 2008
Reagan, Mommy, and Daddy Could Use Some Extra Prayers
Dear Friends,
This will be one of the shorter blog entries that I have written just because I don't have time to write a long one right now. Amy plans to write and explain more later. Reagan has had somewhat of a rough day today as have Amy and I. It is good to see her progressing but gets hard when she has setbacks. Today we found out that her PDA is moderate again and she will probably require surgery at some point in the near future if it doesn't re-close. Her white blood cell count and another test came out high today which indicates some sort of infection, which, Amy says, is very common. They will not be able to do surgery to close her PDA until they know that the infection is gone. The PDA could have opened due to the infection and may close again on it's own after the infection is gone. This process is at times wearisome, but our hope is in God! Our faith does not move! We stand on a Firm Foundation and a Solid Rock! God is our Refuge and Strength! Thanks for your prayers, letters, care packages and encouragement. I'm sorry that you have not received letters of thanks personally yet, but know that we are grateful.
Dear God,
Thanks for all that you have done in so many hearts and lives through this process. I ask that you would reach down and touch Reagan's little body right now and help the infection to leave her body. I also ask that you would help her PDA to close again so that she doesn't have to have surgery. Thank you for loving Amy, Reagan, and me and for blessing us with your love! We love you and put Reagan in your awesome healing hands right now and ask that you would heal her precious body! Please allow us to be a blessing to others during this and help hearts and lives to be changed for eternity. We thank you for allowing circumstances that draw us close to you and thank you for helping us.
Love,
Robert and Amy
This will be one of the shorter blog entries that I have written just because I don't have time to write a long one right now. Amy plans to write and explain more later. Reagan has had somewhat of a rough day today as have Amy and I. It is good to see her progressing but gets hard when she has setbacks. Today we found out that her PDA is moderate again and she will probably require surgery at some point in the near future if it doesn't re-close. Her white blood cell count and another test came out high today which indicates some sort of infection, which, Amy says, is very common. They will not be able to do surgery to close her PDA until they know that the infection is gone. The PDA could have opened due to the infection and may close again on it's own after the infection is gone. This process is at times wearisome, but our hope is in God! Our faith does not move! We stand on a Firm Foundation and a Solid Rock! God is our Refuge and Strength! Thanks for your prayers, letters, care packages and encouragement. I'm sorry that you have not received letters of thanks personally yet, but know that we are grateful.
Dear God,
Thanks for all that you have done in so many hearts and lives through this process. I ask that you would reach down and touch Reagan's little body right now and help the infection to leave her body. I also ask that you would help her PDA to close again so that she doesn't have to have surgery. Thank you for loving Amy, Reagan, and me and for blessing us with your love! We love you and put Reagan in your awesome healing hands right now and ask that you would heal her precious body! Please allow us to be a blessing to others during this and help hearts and lives to be changed for eternity. We thank you for allowing circumstances that draw us close to you and thank you for helping us.
Love,
Robert and Amy
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