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.
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