Here is a link to the facebook album of Claire.
I am still trying to find the time to add a little words to the story of bringing her home. Who would have thought that time would be tough to come by with a new born at home?
Tuesday, April 20, 2010
Monday, April 19, 2010
Goin' Home
Happy to report that after 2 weeks and 6 days, the entire Frame family is back to our house in Delaware.
I hope to post more of a description tomorrow with some pictures.
We love you all and thank you for your thoughts and prayers.
I hope to post more of a description tomorrow with some pictures.
We love you all and thank you for your thoughts and prayers.
Friday, April 16, 2010
Heading to the Step Down (which is actually a Step Up)
4-15-10 Tax Day
Mandi and I got to the hospital and headed for the CICU to see our baby girl. We walked the halls with anticipation because of the experiences from the previous night. We had prayed all along that little Claire would be a fighter… she was throwing some punches which probably did not help with her pain levels. We got to our room and she was resting pleasantly. Shortly after we arrived the nurse practitioner team took the chest to out. This was a huge relief of the pain for Claire Bear. We started to take her off of the pain medication. It was nice to start to see some of the tubes going away. We laughed because at one point, every extremity and 5 of 7 orifices had some sort of sensor or tube.
We had a great afternoon and slowly watched more sensors and tubes come away. Mandi got to feed her and I just hung out. I was super tired from two weeks of excitement and talked with Mandi about heading home a little earlier (8:00pm) to hang out with Colton and get to bed early. Little Miss Claire Bear must have heard me because she decided at that time to have a little set back. Her oxygen saturations fell below acceptable levels and gave us a little scare. The team of doctors decided to give her some red blood cells to increase her oxygen carrying capacity at about 11pm. Luckily, this did the trick. Eventually, her levels got to the point where we felt comfortable heading back to Delaware. As we left we were unsure how this little set back would keep us commuting to and from Columbus.
4-16-10
Colton woke me up bright and early. We watched a little TV and I made all of us breakfast. We dropped off Colt to Mimi and headed to the hospital. Just as we were getting off the exit, Mandi’s phone rang. We still get that sick feeling in our stomach when we see the number (614-722-2000). What the heck this time? It did not take long to hear from the tone of Mandi’s voice that it was positive news. Claire was being moved from the Cardiac ICU to a step down unit which is actually a significant step up in amenities. We now have our own bathroom and Claire is mobile! All of her monitors communicate through a wireless network which allows us to move about the floor. The floor has two playrooms which I am excited to show Colton and is more kid brother friendly than we have experienced at Childrens. We are so happy to have Claire doing well and in a place where we can actually have a family relax TOGETHER. We can shut the door and there is not a whole lot of things that a curious three year old can screw up.
We are excited for Colton to get here tonight and actually get to hold his little sister.
We appreciate your thoughts and prayers.
Mandi and I got to the hospital and headed for the CICU to see our baby girl. We walked the halls with anticipation because of the experiences from the previous night. We had prayed all along that little Claire would be a fighter… she was throwing some punches which probably did not help with her pain levels. We got to our room and she was resting pleasantly. Shortly after we arrived the nurse practitioner team took the chest to out. This was a huge relief of the pain for Claire Bear. We started to take her off of the pain medication. It was nice to start to see some of the tubes going away. We laughed because at one point, every extremity and 5 of 7 orifices had some sort of sensor or tube.
We had a great afternoon and slowly watched more sensors and tubes come away. Mandi got to feed her and I just hung out. I was super tired from two weeks of excitement and talked with Mandi about heading home a little earlier (8:00pm) to hang out with Colton and get to bed early. Little Miss Claire Bear must have heard me because she decided at that time to have a little set back. Her oxygen saturations fell below acceptable levels and gave us a little scare. The team of doctors decided to give her some red blood cells to increase her oxygen carrying capacity at about 11pm. Luckily, this did the trick. Eventually, her levels got to the point where we felt comfortable heading back to Delaware. As we left we were unsure how this little set back would keep us commuting to and from Columbus.
4-16-10
Colton woke me up bright and early. We watched a little TV and I made all of us breakfast. We dropped off Colt to Mimi and headed to the hospital. Just as we were getting off the exit, Mandi’s phone rang. We still get that sick feeling in our stomach when we see the number (614-722-2000). What the heck this time? It did not take long to hear from the tone of Mandi’s voice that it was positive news. Claire was being moved from the Cardiac ICU to a step down unit which is actually a significant step up in amenities. We now have our own bathroom and Claire is mobile! All of her monitors communicate through a wireless network which allows us to move about the floor. The floor has two playrooms which I am excited to show Colton and is more kid brother friendly than we have experienced at Childrens. We are so happy to have Claire doing well and in a place where we can actually have a family relax TOGETHER. We can shut the door and there is not a whole lot of things that a curious three year old can screw up.
We are excited for Colton to get here tonight and actually get to hold his little sister.
We appreciate your thoughts and prayers.
Wednesday, April 14, 2010
Give Me Some Meds…
I woke up this morning as you would expect any father in our position. Not really a gradual wake up by any means. As soon as consciousness arrived, my mind quickly started running through the events of the day. I lay in bed for a little while and waved into and out of prayers for my baby girl. Eventually, I decided it was time to get a move on and jump in the shower. Shortly after I started the super hot water, I heard Mandi’s shower turn on. I was a little surprised to hear her up so early. I finished getting ready and then had a chance to talk with Mandi. She told me that the NICU had called and wanted to move the surgery up from 1:00pm to 10:00am. Well, this started to put a little sense of urgency for the Frame family. Then, Mandi got another call and they said the plan was to move the surgery up to 9:00am. Now we were in super urgency mode. The little Claire Bear continues to add surprises for her parents. We got ready and headed to the hospital. A different nurse did call again and let us know that they would not take her to the OR until we got to see her. I was a little afraid of the traffic as we were headed to Columbus during the heart of rush hour. Luckily, traffic was not too bad and we made it to the hospital to spend some quality time with the little one. I would clearly define this time as very joyful, yet a nervous tension in the air. Knowing that your little girl will have a knife touch her skin in a very short amount of time is pretty horrible. Mandi and I soaked every minute of this time before she left us and headed into the operating room. Everyone was so nice and provided a comforting atmosphere. Now the waiting…
We made camp in the family waiting area and where we were met with a crew of individuals to keep our minds from wondering too far (Al and Cody from DCC, Karen, Kandy, Heather and big brother Colton). Our conversations did vary and every so often we would get an update from the nurse on the procedure. All of us played with Colton and he did bring the crowd to laughter a few times. In fact, two other people sitting close to us chose to sit elsewhere because we must have been too much for them.
I was the first to see Dr. Galantowicz approaching. I tried my best to read the body language upon his arrival to get any indication as to the prognosis. I kind of pride myself at being able to read this nonverbal tool. Unfortunately, this was not the case today. My gut feeling was that he was going to give us great news, but how well do I know him. Could he be masking any negative comments that might be shared? Luckily, my gut feeling was correct and he shared that Claire was doing well. He said the procedure went as planned and she was already extubated and off the ventilator. I was impressed. We were happy to quickly share this news via facebook, texts, and phone messages.
We went to lunch with Karen, Kandy, Heather, and Colton then headed to the playground to hang out with Colton on this wonderful sunny day. It was a good relief.
After the designated time, we decided to head up and check on Claire. She had been moved to the Cardiac ICU. I am not really sure how to explain this next section. Lets just say that my perspective of doing good and the doctor’s were a little different. She did look quite pale to me and I did not like the chest tube at all. But all the doctors and nurses who deal with little cardiac babies said she was doing pretty well.
According to the title, you should be able to tell that we have had difficulty keeping little Miss Claire pain free. Man does she have her mom’s temper (don’t tell Mandi I said that). We learned from the last CT scan and sedation that she is extremely sensitive to fentnyl pain meds. If she has too much, she will have apneic periods; if she does not have enough she screams. Not fun either way. This is a case where we need the happy medium.
We are hoping for a relaxing evening.
We appreciate your thoughts and prayers.
We made camp in the family waiting area and where we were met with a crew of individuals to keep our minds from wondering too far (Al and Cody from DCC, Karen, Kandy, Heather and big brother Colton). Our conversations did vary and every so often we would get an update from the nurse on the procedure. All of us played with Colton and he did bring the crowd to laughter a few times. In fact, two other people sitting close to us chose to sit elsewhere because we must have been too much for them.
I was the first to see Dr. Galantowicz approaching. I tried my best to read the body language upon his arrival to get any indication as to the prognosis. I kind of pride myself at being able to read this nonverbal tool. Unfortunately, this was not the case today. My gut feeling was that he was going to give us great news, but how well do I know him. Could he be masking any negative comments that might be shared? Luckily, my gut feeling was correct and he shared that Claire was doing well. He said the procedure went as planned and she was already extubated and off the ventilator. I was impressed. We were happy to quickly share this news via facebook, texts, and phone messages.
We went to lunch with Karen, Kandy, Heather, and Colton then headed to the playground to hang out with Colton on this wonderful sunny day. It was a good relief.
After the designated time, we decided to head up and check on Claire. She had been moved to the Cardiac ICU. I am not really sure how to explain this next section. Lets just say that my perspective of doing good and the doctor’s were a little different. She did look quite pale to me and I did not like the chest tube at all. But all the doctors and nurses who deal with little cardiac babies said she was doing pretty well.
According to the title, you should be able to tell that we have had difficulty keeping little Miss Claire pain free. Man does she have her mom’s temper (don’t tell Mandi I said that). We learned from the last CT scan and sedation that she is extremely sensitive to fentnyl pain meds. If she has too much, she will have apneic periods; if she does not have enough she screams. Not fun either way. This is a case where we need the happy medium.
We are hoping for a relaxing evening.
We appreciate your thoughts and prayers.
Tuesday, April 13, 2010
The Long Wait
Claire’s big day is tomorrow, and today she is two weeks old. It is been some of the longest weeks of our lives, and we are looking forward to tomorrow as the start of the recovery period. We have had some small joys lately giving her a bath, watching her open her eyes more often, and giving her bottles again. Claire will be headed to surgery between 1-2pm tomorrow and we will wait for 4 long hours for our baby girl to come out of the OR. The first hour will be spent getting her prepared for the surgery including placing an arterial line to monitor her bp and getting her intubated. It is still hard to imagine working on a heart the size of a walnut. Thank you for all the prayers and encouragement we have received recently…..it is very humbling….and we just ask for your prayers for Claire and for us on her big day.
Sunday, April 11, 2010
Another pleasant day
Today was another pleasant day. Mandi and I enjoyed holding the little one and feeding her the small 14mL bottles at 9,12,3,6...
I am going to try and give going to work a shot tomorrow. I plan on working on Monday and Tuesday. We are hoping for some relaxing days in preparation for the surgery on Wednesday.
I am going to try and give going to work a shot tomorrow. I plan on working on Monday and Tuesday. We are hoping for some relaxing days in preparation for the surgery on Wednesday.
Saturday, April 10, 2010
A Little Medical Lingo
Things have been going pretty well. Not a whole lot to report from Children’s these days, which is good. We are just preparing for the surgery on Wednesday. I thought I would take a little time to explain the procedure that will take place.
Claire’s official diagnosis is the following…
Cardiologist's drawing from 3-30-10
Unbalanced AV Canal defect: Unbalanced with a single dominant ventricle and a second hypoplastic ventricle. This results in essentially single-ventricle physiology (so what does this mean) she only has the right side of her heart and all of the necessary veins and arteries connect to these two chambers.
Large ASD (atria septal defect): large hole developed between the right and left atriums.
Pulmonary stenosis: shrinking of the pulmonary valve and arteries
Essentially all babies with a single ventricle defect receive the following three surgeries:
1. Shunt placed between dorsal aorta and the pulmonary artery. (typically first week)
2. Glenn Procedure (typically around 6 months)
3. Fontan Procedure (typically around age 2)
Surgery Number 1
The first surgery is used to keep the PDA (patent ductus arteriosus) open to allow just the right amount of blood to travel to the lungs. The ductus arteriosus is a normal part of the circulation of the fetus. It is a blood vessel that connects the two large arteries coming out of the heart, the aorta and the pulmonary artery. After birth, this duct usually closes but little Miss Claire has received prostaglandins to keep her PDA open (Aprostadil is also used in maintaining a patent ductus arteriosus in the newborn. This is primarily useful when there is threat of premature closure of the ductus arteriosus in an infant with ductal-dependent congenital heart disease). The side effects of this medication have been increased temperature and apnea.
We believe that the surgery will take 4-5 hours. A good bit of the first hour will be specific to preparation (getting arterial iv lines, sedation, etc.) The cardiothoracic surgeon will start with a small incision on her right side. They will separate her ribs and gather a pathway to her small little heart. The shunt will be connected between the dorsal aorta and the pulmonary artery. The shunt should provide just enough blood flow to her lungs. This is a fine specific system. We do not want too much blood flow to her lungs, but we want just enough to keep her oxygen saturation within an acceptable range. If there is too much blood flow to the lungs, they can become over filled and cause lung problems. Obviously, if there is not enough blood flow to the lungs, she will not have enough oxygen in her blood to sustain her cells.
Crazy that we have the technology available to perform such surgeries and live in a country that believes all life is valuable.
Given that you now have at your disposal the World Wide Web and can Google any of the above information, I feel obliged to tell you that a lot of the information out there is not super current. Research has made great strides in treating little ones with these disorders. The Frame Family chooses to steal all optimism from the doctors and nurses as they share their positive outlook for our baby girl.
We appreciate your thoughts and prayer.
Claire’s official diagnosis is the following…
Cardiologist's drawing from 3-30-10
Unbalanced AV Canal defect: Unbalanced with a single dominant ventricle and a second hypoplastic ventricle. This results in essentially single-ventricle physiology (so what does this mean) she only has the right side of her heart and all of the necessary veins and arteries connect to these two chambers.
Large ASD (atria septal defect): large hole developed between the right and left atriums.
Pulmonary stenosis: shrinking of the pulmonary valve and arteries
Essentially all babies with a single ventricle defect receive the following three surgeries:
1. Shunt placed between dorsal aorta and the pulmonary artery. (typically first week)
2. Glenn Procedure (typically around 6 months)
3. Fontan Procedure (typically around age 2)
Surgery Number 1
The first surgery is used to keep the PDA (patent ductus arteriosus) open to allow just the right amount of blood to travel to the lungs. The ductus arteriosus is a normal part of the circulation of the fetus. It is a blood vessel that connects the two large arteries coming out of the heart, the aorta and the pulmonary artery. After birth, this duct usually closes but little Miss Claire has received prostaglandins to keep her PDA open (Aprostadil is also used in maintaining a patent ductus arteriosus in the newborn. This is primarily useful when there is threat of premature closure of the ductus arteriosus in an infant with ductal-dependent congenital heart disease). The side effects of this medication have been increased temperature and apnea.
We believe that the surgery will take 4-5 hours. A good bit of the first hour will be specific to preparation (getting arterial iv lines, sedation, etc.) The cardiothoracic surgeon will start with a small incision on her right side. They will separate her ribs and gather a pathway to her small little heart. The shunt will be connected between the dorsal aorta and the pulmonary artery. The shunt should provide just enough blood flow to her lungs. This is a fine specific system. We do not want too much blood flow to her lungs, but we want just enough to keep her oxygen saturation within an acceptable range. If there is too much blood flow to the lungs, they can become over filled and cause lung problems. Obviously, if there is not enough blood flow to the lungs, she will not have enough oxygen in her blood to sustain her cells.
Crazy that we have the technology available to perform such surgeries and live in a country that believes all life is valuable.
Given that you now have at your disposal the World Wide Web and can Google any of the above information, I feel obliged to tell you that a lot of the information out there is not super current. Research has made great strides in treating little ones with these disorders. The Frame Family chooses to steal all optimism from the doctors and nurses as they share their positive outlook for our baby girl.
We appreciate your thoughts and prayer.
Friday, April 9, 2010
The bottle is back
We got to the bedside just as the doctors were rounding this morning. We were happy to hear that little Miss Claire would be able to eat again. Not a whole lot of excitement today, which is a good thing. We got to feed her again and she did really well.
Thanks for all your thoughts and prayers.
Thanks for all your thoughts and prayers.
Thursday, April 8, 2010
A Pleasant Day
We arrived to the hospital just in time to see little Miss Claire get the tubes out of her throat. She was extubated and did not require the wonderful Cpap. We did continue to mess with her a little to make sure that she was waking up enough to take her own breaths. Only a few foot taps and flicks were necessary to keep her breathing on her own through out the day. Mandi and I were both happy to be able to hold her again after the scares from the previous two days.
The surgeon’s nurse did stop by today to get the consent paper signed and go over some of the preliminary information before surgery. At this point, we were a little caught off guard when she was saying we would be heading to surgery at 8:00am. Previously, we had talked with some other doctors who mentioned that they were a little concerned with the white blood cell counts and wanted to wait a little longer before surgery. After we shared this information with the nurse, she did call and double check to make sure and sure enough, it appears that Claire will have her surgery on Wednesday April 14th. Obviously, this type of planning can change by the minute.
Being tired of the food at the hospital, Mandi and I (and those that have come to visit) are beginning to explore some of the cafes around German village. Sami and Dave tried to take us to Thurman Cafe today (home of the Thurmanator - huge hamburger conquered by the Man vs Food guy) but it was a little too long of a wait. We walked a short distance down the street to Easy St Cafe. Good place. Other top picks have been Schmidt's, Planks Cafe and Club 185.
We appreciate your thoughts and prayers.
The surgeon’s nurse did stop by today to get the consent paper signed and go over some of the preliminary information before surgery. At this point, we were a little caught off guard when she was saying we would be heading to surgery at 8:00am. Previously, we had talked with some other doctors who mentioned that they were a little concerned with the white blood cell counts and wanted to wait a little longer before surgery. After we shared this information with the nurse, she did call and double check to make sure and sure enough, it appears that Claire will have her surgery on Wednesday April 14th. Obviously, this type of planning can change by the minute.
Being tired of the food at the hospital, Mandi and I (and those that have come to visit) are beginning to explore some of the cafes around German village. Sami and Dave tried to take us to Thurman Cafe today (home of the Thurmanator - huge hamburger conquered by the Man vs Food guy) but it was a little too long of a wait. We walked a short distance down the street to Easy St Cafe. Good place. Other top picks have been Schmidt's, Planks Cafe and Club 185.
We appreciate your thoughts and prayers.
Wednesday, April 7, 2010
Still Waiting
Josh and I were both relieved to see Claire’s sweet little pink face this morning after leaving her looking pale and slightly blue last night. Today has been spent watching her slowly come off the ventilator and all I wanted to do is hold her. She is doing pretty well just hard to watch her get agitated with the tube in her throat since that do not want to give her anymore sedation. The cardiologist confirmed today that they will be doing surgery early next week since we had the little set back with the her increased white blood cell count last night. So……we wait and we pray.
Josh and I were both relieved to see Claire’s sweet little pink face this morning after leaving her looking pale and slightly blue last night. Today has been spent watching her slowly come off the ventilator and all I wanted to do is hold her. She is doing pretty well just hard to watch her get agitated with the tube in her throat since that do not want to give her anymore sedation. The cardiologist confirmed today that they will be doing surgery early next week since we had the little set back with the her increased white blood cell count last night. So……we wait and we pray.
Sleepy Claire Bear
Yesterday was the first day in which the visitor restriction was lifted at Children's hospital. Mandi's family had a chance to meet baby Claire, some for the first time. I was the proud papa showing off my little girl. Mandi answered a lot of questions pertaining to what this and that cord and tube does. Colton was super excited to see his baby sister and said "I want to pet her" and "I want to hold her." Of course, I forgot the video camera in the car so we were unable to capture this moment in electronic form. It will be embedded into our memories for a life time.
Claire started to prepare for her CT Scan and New IV around 1:00. Little did we know that this next process would send baby Claire into a little set back. She was intubated for the procedure and placed on sedatives to prevent her from moving during these important scans and procedures. We left for dinner with my parents and both of us expected to return from Planks Cafe to an awake and alert Claire Bear ready to give her the first bottle she had received in days. Unfortunately, this was not the case. She was not breathing on her own yet, in fact, the Doctors had to increase the respiration rate with the ventilator to help get her ph level back to baseline numbers. We continued to wait at the hospital into the early night. In addition, we got word that her white blood cell counts were up which indicates the possibility of infection. It was super difficult to leave the hospital last night not knowing when our little baby was going to be able to breath on her own. Something extremely uncomfortable about the necessity of a machine to breath for your baby. We are glad for the technology but hope that we do not need it much longer.
All that said, we found out this morning that her first heart surgery has been pushed back until early next week because of these factors. The NICU waiting game continues...
We hope that baby Claire can start to breath on her own sometime today so we can start to get some food in her and prepare her for her first surgery next week.
We appreciate your thoughts and prayers.
Claire started to prepare for her CT Scan and New IV around 1:00. Little did we know that this next process would send baby Claire into a little set back. She was intubated for the procedure and placed on sedatives to prevent her from moving during these important scans and procedures. We left for dinner with my parents and both of us expected to return from Planks Cafe to an awake and alert Claire Bear ready to give her the first bottle she had received in days. Unfortunately, this was not the case. She was not breathing on her own yet, in fact, the Doctors had to increase the respiration rate with the ventilator to help get her ph level back to baseline numbers. We continued to wait at the hospital into the early night. In addition, we got word that her white blood cell counts were up which indicates the possibility of infection. It was super difficult to leave the hospital last night not knowing when our little baby was going to be able to breath on her own. Something extremely uncomfortable about the necessity of a machine to breath for your baby. We are glad for the technology but hope that we do not need it much longer.
All that said, we found out this morning that her first heart surgery has been pushed back until early next week because of these factors. The NICU waiting game continues...
We hope that baby Claire can start to breath on her own sometime today so we can start to get some food in her and prepare her for her first surgery next week.
We appreciate your thoughts and prayers.
Tuesday, April 6, 2010
Another day
4/5/10
Not too much to report on this day. The cardiologists did decide to have one more picture with a CT scan before Claire has her first surgery. We had a couple of instances of apnea (where she forgets to breathe) which is a side effect of the prostins. Obviously this is a little scary when you see the oxygen saturation stats go down and her little chest is not moving.
We were happy to hear from the nurse that visiting restriction had been lifted. A good deal of our family was pretty excited as they could now come see the baby.
We appreciate your thoughts and prayers.
Not too much to report on this day. The cardiologists did decide to have one more picture with a CT scan before Claire has her first surgery. We had a couple of instances of apnea (where she forgets to breathe) which is a side effect of the prostins. Obviously this is a little scary when you see the oxygen saturation stats go down and her little chest is not moving.
We were happy to hear from the nurse that visiting restriction had been lifted. A good deal of our family was pretty excited as they could now come see the baby.
We appreciate your thoughts and prayers.
Sunday, April 4, 2010
Easter Morning
Easter Morning. The day in which joy is set free from the pores of Christians all over the room. The celebration of the resurrection. The day in which the grave was conquered and death no longer held its reign on humanity. God won.
We did not start our Easter Sunday as we would have hoped. Mandi and I were resting comfortably in our own bed, the first in about week, when the ring tone sounded. Everyone knows the feeling when your phone rings unexpectedly, especially first thing in the morning. The heart beat automatically increases and your senses keenly focus. It took me less than half a second to think of all the things this call could be about. What the heck was going on? I listened intently to Mandi’s voice as she spoke with the nurse practitioner about Baby Claire. I could tell by her response that it was not positive news, but at the same time, there was no sense of complete urgency. We found that Baby Claire’s oxygen saturation had dipped below acceptable levels over the night and the protins had been started to keep her Ductus Arterious open until a shunt could be placed into this small blood vessel to keep just the right amount of blood flowing to her small lungs. There was in stark contrast between the joyous atmosphere most Christians were sharing on this resurrection morning and the melancholy mood on Fieldcrest Ave.
We were hoping that baby Claire was going to make it without needing the first of three typical surgeries for hypoplastic left ventricle, but it is pretty apparent that her little body will need this surgery. I think back to our conversation with Dr. Weller the day before where he mentioned that he is always cautious when the first surgery is not completed. It decreases the unknown factor before we would take baby Claire home.
After the conversation with the nurse practitioner, we decided to get up and make our way towards Childrens to visit with Baby Claire and hope to talk with Dr. Weller again. It was difficult waking up Colton because we knew that he was not feeling well. Not only was he not feeling well, we knew that we were going to be dropping him off with his Mimi and would not see him for the majority of this Easter morning.
The drive was fairly pleasant. Beautiful sunny morning, crisp air with a bit of a chill, not too cold and not too hot. We made note of the flowers springing up all over the countryside and committed that next year we were going to plant some bulbs. It was a rather quiet drive and I imagine a lot of reflection both from the driver’s and passenger side seats in the CRV. We got to the parking lot at Polaris and dropped of the sick little buddy. He did pretty well and waved to us as we drove away to see our other sick little buddy. I know that running through both of our minds was, what the heck is happening to our family? To ease the silence, Mandi turned on the radio. At first it was just some background noise and someone talking and I was not really listening. A very familiar song was the next to be broadcasted. Mandi and both started singing the song, just like we had done many times at church. We continued through the first verse and then came the chorus and we both had an instant rush of emotion leaving us unable to sing the words. “Savior, he can move the mountains, my God is mighty to save, he is mighty to save. Forever author of salvation, he rose and conquered the grave, Jesus conquered the grave.” Very powerful moment in our time of need.
We had a wonderful visit with baby Claire. We did get to talk with Dr. Weller and found out that the team of Doctors will meet on Monday. We will likely have the first of three heart surgeries on Tuesday or Wednesday.
We took a little break from baby #2 to enjoy some Easter traditions with baby #1. We made our way to the Martin’s and had an egg hunt with Colton. He kept saying “Found another one” as you picked up one after another. Great meal and good times with our family.
Now we are back at Childrens to spend the rest of our Easter Sunday with baby Claire. She is snuggled up with her mom. We are sure that she wants to eat but the Doctors have decided to cut out the feeds for now because of the medication and the malrotated bowels.
We appreciate all of your thoughts and prayers. We know that they make a difference.
We did not start our Easter Sunday as we would have hoped. Mandi and I were resting comfortably in our own bed, the first in about week, when the ring tone sounded. Everyone knows the feeling when your phone rings unexpectedly, especially first thing in the morning. The heart beat automatically increases and your senses keenly focus. It took me less than half a second to think of all the things this call could be about. What the heck was going on? I listened intently to Mandi’s voice as she spoke with the nurse practitioner about Baby Claire. I could tell by her response that it was not positive news, but at the same time, there was no sense of complete urgency. We found that Baby Claire’s oxygen saturation had dipped below acceptable levels over the night and the protins had been started to keep her Ductus Arterious open until a shunt could be placed into this small blood vessel to keep just the right amount of blood flowing to her small lungs. There was in stark contrast between the joyous atmosphere most Christians were sharing on this resurrection morning and the melancholy mood on Fieldcrest Ave.
We were hoping that baby Claire was going to make it without needing the first of three typical surgeries for hypoplastic left ventricle, but it is pretty apparent that her little body will need this surgery. I think back to our conversation with Dr. Weller the day before where he mentioned that he is always cautious when the first surgery is not completed. It decreases the unknown factor before we would take baby Claire home.
After the conversation with the nurse practitioner, we decided to get up and make our way towards Childrens to visit with Baby Claire and hope to talk with Dr. Weller again. It was difficult waking up Colton because we knew that he was not feeling well. Not only was he not feeling well, we knew that we were going to be dropping him off with his Mimi and would not see him for the majority of this Easter morning.
The drive was fairly pleasant. Beautiful sunny morning, crisp air with a bit of a chill, not too cold and not too hot. We made note of the flowers springing up all over the countryside and committed that next year we were going to plant some bulbs. It was a rather quiet drive and I imagine a lot of reflection both from the driver’s and passenger side seats in the CRV. We got to the parking lot at Polaris and dropped of the sick little buddy. He did pretty well and waved to us as we drove away to see our other sick little buddy. I know that running through both of our minds was, what the heck is happening to our family? To ease the silence, Mandi turned on the radio. At first it was just some background noise and someone talking and I was not really listening. A very familiar song was the next to be broadcasted. Mandi and both started singing the song, just like we had done many times at church. We continued through the first verse and then came the chorus and we both had an instant rush of emotion leaving us unable to sing the words. “Savior, he can move the mountains, my God is mighty to save, he is mighty to save. Forever author of salvation, he rose and conquered the grave, Jesus conquered the grave.” Very powerful moment in our time of need.
We had a wonderful visit with baby Claire. We did get to talk with Dr. Weller and found out that the team of Doctors will meet on Monday. We will likely have the first of three heart surgeries on Tuesday or Wednesday.
We took a little break from baby #2 to enjoy some Easter traditions with baby #1. We made our way to the Martin’s and had an egg hunt with Colton. He kept saying “Found another one” as you picked up one after another. Great meal and good times with our family.
Now we are back at Childrens to spend the rest of our Easter Sunday with baby Claire. She is snuggled up with her mom. We are sure that she wants to eat but the Doctors have decided to cut out the feeds for now because of the medication and the malrotated bowels.
We appreciate all of your thoughts and prayers. We know that they make a difference.
Saturday, April 3, 2010
Playing the Waiting Game
We are in a little better sprits today. We made it back from lunch without some news about a scan that showed another problem. We were happy to talk with Dr. Weller this morning (a familiar face from whom we have been seeing since December) about Claire's situation and maybe a little timetable for events. He made it very clear that the heart is the number one priority and the malrotated bowel can wait. As long as there is no emergency, it sounds as though the intestines will not be addressed until later.
The past two afternoons have been quite difficult. I just keep thinking, can't this little girl catch a break. I am amazed at how perfect she can look on the outside, yet how damaged she can be on the inside. Stupid heterotaxy!
Mandi made reference to the NICU roller coaster. I would say this is a pretty accurate analogy to describe the activities from the last two days. After the difficult news yesterday, we decided that we needed to run home and hang out with Colton a little. My sister came down to stay with him for a couple of days and I know that he has had a blast with his Jazzy and C.C. We ran into a little traffic on the way home, not thinking it was Good Friday and there would be more people on the road traveling to see family. I knew my patience was a little thin when I had to block a car that was trying to drive up the side of the highway to get off at the very same exit I was waiting for. I was pretty pissed. Pretty funny the things that can irritate us at certain times.
Eventually we did make it to Fieldcrest Dr. I was thankful for the weather to allow us to run around outside, kicking and throwing balls at each other. Very therapeutic, and I just enjoy being around that little guy.
After the past two difficult days, we have decided to move from our Ronald McDonald House back to Delaware. I believe this will help us feel a little more normal again. The RMH has been a blessing and I truly appreciate the service they provide to families during the most difficult times. For the most part, the people were very friendly. I know that they probably have to guard themselves from becoming callas to individuals that take advantage of their free gifts. I could tell that they know they get taken for some free rides, yet they decide to move forward and offer assistance. If you have ever worked in a soup kitchen or homeless shelter, it was the same type of attitude in which they are pretty forward with guidelines and expectations. The population at the house was very diverse, from Amish to urban, southern Ohio to well, you know what I mean. The facilities at the RMH were amazing. It was very clean and contained all the amenities necessary (laundry, exercise room, playground, tv rooms and library, free wifi). We are leaving with a very positive experience and probably will take advantage of this service again when Claire Bear has some of her surgeries.
Tomorrow is Easter. A day of Resurrection. A day of Hope.
I sure hope that the rising of the sun tomorrow produces in our lives the hope of new life, of joy and healing.
The past two afternoons have been quite difficult. I just keep thinking, can't this little girl catch a break. I am amazed at how perfect she can look on the outside, yet how damaged she can be on the inside. Stupid heterotaxy!
Mandi made reference to the NICU roller coaster. I would say this is a pretty accurate analogy to describe the activities from the last two days. After the difficult news yesterday, we decided that we needed to run home and hang out with Colton a little. My sister came down to stay with him for a couple of days and I know that he has had a blast with his Jazzy and C.C. We ran into a little traffic on the way home, not thinking it was Good Friday and there would be more people on the road traveling to see family. I knew my patience was a little thin when I had to block a car that was trying to drive up the side of the highway to get off at the very same exit I was waiting for. I was pretty pissed. Pretty funny the things that can irritate us at certain times.
Eventually we did make it to Fieldcrest Dr. I was thankful for the weather to allow us to run around outside, kicking and throwing balls at each other. Very therapeutic, and I just enjoy being around that little guy.
After the past two difficult days, we have decided to move from our Ronald McDonald House back to Delaware. I believe this will help us feel a little more normal again. The RMH has been a blessing and I truly appreciate the service they provide to families during the most difficult times. For the most part, the people were very friendly. I know that they probably have to guard themselves from becoming callas to individuals that take advantage of their free gifts. I could tell that they know they get taken for some free rides, yet they decide to move forward and offer assistance. If you have ever worked in a soup kitchen or homeless shelter, it was the same type of attitude in which they are pretty forward with guidelines and expectations. The population at the house was very diverse, from Amish to urban, southern Ohio to well, you know what I mean. The facilities at the RMH were amazing. It was very clean and contained all the amenities necessary (laundry, exercise room, playground, tv rooms and library, free wifi). We are leaving with a very positive experience and probably will take advantage of this service again when Claire Bear has some of her surgeries.
Tomorrow is Easter. A day of Resurrection. A day of Hope.
I sure hope that the rising of the sun tomorrow produces in our lives the hope of new life, of joy and healing.
Friday, April 2, 2010
another tough afternoon
The Frame family is starting to detest afternoon scans for Baby Claire. Yesterday we found out that she did not develop a spleen. The spleen serves three major functions within our bodies (1. holds extra blood, 2. monitors red blood cells, 3. immunities). At this point the Doctors are most concerned with the third and thus she will be medicated with antibodies for all of her life.
As if the heart abnormality was not enough, then we introduced the spleen, about 3:00pm we found that Baby Claire has a malrotated bowel. This means that the small intestine is not in the proper place and at a higher risk of blockage. Surgery will be required but it appears that the team of doctors want to see how the heart progresses before pursuing this problem.
For your benefit and mine, I will refrain from reflection tonight.
As if the heart abnormality was not enough, then we introduced the spleen, about 3:00pm we found that Baby Claire has a malrotated bowel. This means that the small intestine is not in the proper place and at a higher risk of blockage. Surgery will be required but it appears that the team of doctors want to see how the heart progresses before pursuing this problem.
For your benefit and mine, I will refrain from reflection tonight.
Thursday, April 1, 2010
A little shorter note
Well, I am going to have a little shorter note tonight because of news that has caught us a little off guard. The most recent scan revealed that Little Claire does not have a spleen. We have not had a great deal of time to process this information but it does mean that she will need to be on antibiotics for her life. We apprecaite your thougths and prayers.
Getting the Family Together
Yesterday was an emotional roller coaster. I started the day out at Riverside hospital after getting some needed sleep. It was funny that both Mandi and I woke up with a stiff neck and she chuckled a little mentioning that she just had a baby yesterday and the worst pain that she is experiencing is a tight neck.
I woke up and headed down to Childrens well before the morning traffic. I got all of my things for the day and sat at Claire's bedside for a good couple of hours. I was just enjoying being next to her. I still had not had the chance to hold her but sitting beside her was the next best thing. I spent the good part of this time reflecting on the situation and updating the blog.
After a while, the nurse mentioned that the doctors will not be making their rounds for another couple of hours and she kind of suggested that this was a good time to take a break. Take a Break! I was a little put off from this suggestion. But then I got to thinking, this nurse has seen a lot and has greater wisdom in these situations. I eventually did heed her advice and headed to the food court at Childrens (which provides a little scamper of hope for nutrition while at Childrens compared to the cafeteria). I grabbed a cup of coffee and spread out some work files to get started reviewing some transcripts and identifying the awards for the graduates of 2010. Meanwhile, I did get caught up on some daily audio bible podcasts (pervious post).
After this short break, I headed back up to see baby Claire before driving back to Riverside to grab some lunch with Mandi. Baby Claire was doing just fine and resting well. I told her goodbye and mentioned that maybe her mom would be with me next time. Mandi requested a cherry lime aid from Sonic so we got some food.
The looming question for this next section of time was if Mandi was going to be released today. The doctor had put in some orders for her to be released at 4:00pm if her blood pressure was low enough. We enjoyed being together and talking about the events from the previous couple of days. I started to get her things packed up when the nurse did check her blood pressure. It was a little too high and it did lessen the chance that Mandi would be released. Needless to say this was pretty difficult as we both deeply wanted to get the family back together in one location. I am sure that this anxiety did not help lower her blood pressure but we did our best to talk through the situation. After a little emotional time, she did lie down and get a nap. This must have been the trick because her blood pressure did go down enough for her to be released from Riverside at about 4:30pm.
As you would expect, we headed directly down to Childrens to enjoy sometime with baby Claire. I was super excited to have the majority of our family back together. We had one more to bring into the picture… Colton. Luckily, Dave and Sami brought down the buddy boy for dinner and he brought things to spend the night with us down at the Ronald McDonald House. We were happy to have our family back together. After Dave and Sami left, Mandi and I had to trade off shifts with Colton and Claire. I took Colton down to the food court and we enjoyed a delicious Subway Chocolate Chip Cookie. When we got back upstairs, the nurse came out and said that Mandi was holding baby Claire and I would be next. I was so pumped. I had not had a chance to hold her yet. So Mandi finished and I got the chance to see her up close and personal. It made my day.
Claire is still doing well and the Doctors are still monitoring her blood levels to identify whether or not she will need the first of three surgeries.
I woke up and headed down to Childrens well before the morning traffic. I got all of my things for the day and sat at Claire's bedside for a good couple of hours. I was just enjoying being next to her. I still had not had the chance to hold her but sitting beside her was the next best thing. I spent the good part of this time reflecting on the situation and updating the blog.
After a while, the nurse mentioned that the doctors will not be making their rounds for another couple of hours and she kind of suggested that this was a good time to take a break. Take a Break! I was a little put off from this suggestion. But then I got to thinking, this nurse has seen a lot and has greater wisdom in these situations. I eventually did heed her advice and headed to the food court at Childrens (which provides a little scamper of hope for nutrition while at Childrens compared to the cafeteria). I grabbed a cup of coffee and spread out some work files to get started reviewing some transcripts and identifying the awards for the graduates of 2010. Meanwhile, I did get caught up on some daily audio bible podcasts (pervious post).
After this short break, I headed back up to see baby Claire before driving back to Riverside to grab some lunch with Mandi. Baby Claire was doing just fine and resting well. I told her goodbye and mentioned that maybe her mom would be with me next time. Mandi requested a cherry lime aid from Sonic so we got some food.
The looming question for this next section of time was if Mandi was going to be released today. The doctor had put in some orders for her to be released at 4:00pm if her blood pressure was low enough. We enjoyed being together and talking about the events from the previous couple of days. I started to get her things packed up when the nurse did check her blood pressure. It was a little too high and it did lessen the chance that Mandi would be released. Needless to say this was pretty difficult as we both deeply wanted to get the family back together in one location. I am sure that this anxiety did not help lower her blood pressure but we did our best to talk through the situation. After a little emotional time, she did lie down and get a nap. This must have been the trick because her blood pressure did go down enough for her to be released from Riverside at about 4:30pm.
As you would expect, we headed directly down to Childrens to enjoy sometime with baby Claire. I was super excited to have the majority of our family back together. We had one more to bring into the picture… Colton. Luckily, Dave and Sami brought down the buddy boy for dinner and he brought things to spend the night with us down at the Ronald McDonald House. We were happy to have our family back together. After Dave and Sami left, Mandi and I had to trade off shifts with Colton and Claire. I took Colton down to the food court and we enjoyed a delicious Subway Chocolate Chip Cookie. When we got back upstairs, the nurse came out and said that Mandi was holding baby Claire and I would be next. I was so pumped. I had not had a chance to hold her yet. So Mandi finished and I got the chance to see her up close and personal. It made my day.
Claire is still doing well and the Doctors are still monitoring her blood levels to identify whether or not she will need the first of three surgeries.
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