Tucker came home yesterday and we haven't stopped since. Between picking up new prescriptions and Christmas, there hasn't been many free moments.
Tuckers cardiologist has added a new drug to his regimen that works with the Lasix to help keep the fluid out of his lungs, let's hope that this keeps us out of the hospital now. He is still retracting when he feeds, but Its better than it was.
We have also run into quite the roadblock for Tuckers special formula. Our insurance company has approved the Nutramigen, however the Polycose additive still hasn't been approved. I was on the phone all day trying to obtain the right approval, wish me luck again for tomorrow!
Tuckers vaccinations are tomorrow....more to come....
Thursday, December 22, 2011
Tuesday, December 20, 2011
Day 2 at Childrens
We had the greatest RN named Michelle last night. (Must be the name). She took Tucker out to feed him and let me sleep all night. (very much needed). Tucker was lucky enough to be the first patient for MD rounds today. Good thing I showered early! The team told me that Tucker was doing well on the double dose of Lasix from the day before and that we were going to continue that for today and then taper him down to a double dose in the morning and at night. Let's hope that this fixes his struggle to eat. So far today, it hasn't gotten much better. He took less than an ounce and fell asleep and got all sweaty as well. He has a long road ahead of him for us to get discharged before Christmas. Sometimes random things happen so you can put your own life into perspective. The last 2 times we were on 8 east we saw what appears to be a healthy boy walking the unit all day into the night always accompanied by a RN. Today I saw him and spoke to him, "hi, i remember you from before...looking like you'll need new sneakers soon.". We both laughed and he continued to walk another lap around the floor. Later on I mentioned how sad it is to come to the floor and see the same folks from when we were here in October, I mentioned the boy and she told me that he has been on the floor for a long time, he is waiting for a heart. I completely believe that is what I needed to hear as I was feeling selfish that we might be here for Christmas. Not feeling that anymore.
Monday, December 19, 2011
Retracting again!
Last night at Tucker's 3am feed, he started flaring his nostrils and retracting when he fed. I waited until his next feed in the morning and there was no change so I called his cardiologist. He told me to give him an extra dose of Lasix, that he could have just had some extra fluid, and that he would be calling me back in the afternoon to check on his status. His VNA RN Bonnie was going to be coming out for his weekly visit. She noticed that he was retracting as well so she had to report it to the cardiologist. We called The cardiologist and he told me to drive right to Children's ER. We were in the emergency room from 3-10pm. X-rays an EKG and a failed attempt at an IV line. We finally got assigned a room on 8 east Tucker ate 70 ml and is still retracting, now we are going to bed. More to come in the morning.
Wednesday, December 14, 2011
Tucker Update.
Went to the cardiologist yesterday, another EKG and Echocardiogram, the stints are still where they should be. However, Tucker hasn't gained much weight since he left the hospital less than 2 weeks ago. He lost quite a bit while he was there so they are increasing his formula to 26 calories and adding Polycose Powder as well. He needs to put on as much weight as possible before his open heart surgery. If he doesn't gain a significant amount of weight over the next two weeks he will have to get an NG tube.
I was concerned that his O2 numbers have been creeping a little down, apparently when a baby sleeps his HR goes down, and so do his stats. So no more testing Tucker while he sleeps.
Dr. Porras said to plan for his Glenn Procedure to be sometime in the middle to the end of February.
A friend asked me what I needed the other day, my response: "a hotel room for a night with no TV, Internet or Phone so I can get some much needed sleep. ". Her response: "Just one night?". Me: "Yup, anything more and I wouldn't come home!". It might be time to call in some backup to give Gary and I a little break, these last few months have been a roller coaster of emotions.
On another note, Spencer had a good day at school today but had a difficult time taking his medicine tonight. He has an ear infection, i swear, its always a battle somewhere.
I was concerned that his O2 numbers have been creeping a little down, apparently when a baby sleeps his HR goes down, and so do his stats. So no more testing Tucker while he sleeps.
Dr. Porras said to plan for his Glenn Procedure to be sometime in the middle to the end of February.
A friend asked me what I needed the other day, my response: "a hotel room for a night with no TV, Internet or Phone so I can get some much needed sleep. ". Her response: "Just one night?". Me: "Yup, anything more and I wouldn't come home!". It might be time to call in some backup to give Gary and I a little break, these last few months have been a roller coaster of emotions.
On another note, Spencer had a good day at school today but had a difficult time taking his medicine tonight. He has an ear infection, i swear, its always a battle somewhere.
Friday, December 2, 2011
Here we go again.
Last Tuesday night, after feeding Tucker he coughed 3 times. It was a strained cough, and it sounded like it hurt him to cough. I thought about it and choose not to call his VNA RN because it was so late, and he had an appointment with his PCP first thing in the morning.
That night he slept for six hours straight, I was a little alarmed as he was not taking much by mouth, so off to the pediatrician we went. We were seen right away and our MD took a lot of time with him, we checked his O2 level and it was in the low 80's not as high as usual, but when I was there Tucker started to fuss and I fed him a little and he started to retract. (working extra hard to breathe). His nostrils started to flare so his PCP called his cardiologist Dr. Porras. He told me to go directly to the Emergency room at Children's Hospital. We arrived at 11am, and we were taken into the triage area for just a moment and wisked away within moments to a trama room.
They tried several times to obtain an IV line (8 to be exact) without success. So they placed an NG tube and gave him hydration. It wasn't long that we were shipped off to X-ray. Sadly there was fluid in his lungs, so we were admitted. After 6 hours in the ER, we were given a room on the pediatric cardiology floor (8 east). Pam packed my stuff and Kevin brought it to Gary at work, so I could have some clean clothes at the hospital.
Over the next few days Tucker was seen by many MD's and it was determined that they could not tell if he was fighting a cold or if his fluid was built up in his chest from discontinuing his Lasix. So he was restarted on it while in the hospital. During his stay they didnt have his formula in the hospital so it was the perfect time to switch it since the Pediatritian was suspecting a milk allergy, so he was switched to Nutramigen.
On Friday Gary came into Boston and let me go home to spend time with Spencer and so I got to sleep in our bed. The bed at the hospital is terrible! It's actually a plastic fold out pad. They should print an add for a chiropractor right on it.
Saturday morning I brought Spencer into Childrens to see Tucker. He was so happy to see him. Around noon we got the word that Tucker was doing fine and that we would be discharged shortly. Yay...Finally!
Saturday night there was a mix up giving Tucker his new medication doses, I gave him five times the amount that I should have given him of his Plavix. I panicked and called 8 east while I started packing an overnight bag. The NP had the cardiologist on call return my call. After consulting with the pharmacy they told me that the overdose would be ok. Whew...I have learned a valuable lesson here!
So Tucker is now home resting and getting a little bit better everyday. We have an appointment for Tuckers second dose of Cynergist on Thursday.
That night he slept for six hours straight, I was a little alarmed as he was not taking much by mouth, so off to the pediatrician we went. We were seen right away and our MD took a lot of time with him, we checked his O2 level and it was in the low 80's not as high as usual, but when I was there Tucker started to fuss and I fed him a little and he started to retract. (working extra hard to breathe). His nostrils started to flare so his PCP called his cardiologist Dr. Porras. He told me to go directly to the Emergency room at Children's Hospital. We arrived at 11am, and we were taken into the triage area for just a moment and wisked away within moments to a trama room.
They tried several times to obtain an IV line (8 to be exact) without success. So they placed an NG tube and gave him hydration. It wasn't long that we were shipped off to X-ray. Sadly there was fluid in his lungs, so we were admitted. After 6 hours in the ER, we were given a room on the pediatric cardiology floor (8 east). Pam packed my stuff and Kevin brought it to Gary at work, so I could have some clean clothes at the hospital.
Over the next few days Tucker was seen by many MD's and it was determined that they could not tell if he was fighting a cold or if his fluid was built up in his chest from discontinuing his Lasix. So he was restarted on it while in the hospital. During his stay they didnt have his formula in the hospital so it was the perfect time to switch it since the Pediatritian was suspecting a milk allergy, so he was switched to Nutramigen.
On Friday Gary came into Boston and let me go home to spend time with Spencer and so I got to sleep in our bed. The bed at the hospital is terrible! It's actually a plastic fold out pad. They should print an add for a chiropractor right on it.
Saturday morning I brought Spencer into Childrens to see Tucker. He was so happy to see him. Around noon we got the word that Tucker was doing fine and that we would be discharged shortly. Yay...Finally!
Saturday night there was a mix up giving Tucker his new medication doses, I gave him five times the amount that I should have given him of his Plavix. I panicked and called 8 east while I started packing an overnight bag. The NP had the cardiologist on call return my call. After consulting with the pharmacy they told me that the overdose would be ok. Whew...I have learned a valuable lesson here!
So Tucker is now home resting and getting a little bit better everyday. We have an appointment for Tuckers second dose of Cynergist on Thursday.
Saturday, November 19, 2011
Tuckers second cardiologist appointment
Today we returned to Children's hospital in Boston to do Tuckers echo-cardiogram and meet with Dr.Porras. Everything is looking good and Tucker is doing well enough to stop taking taking his Lasix medication. Dr.Porras still thinks we have about another 4 months before we need to schedule the Glenn surgery. The hope is that after his Glenn surgery he will be able to completely come off of all his medications.
We also had to meet with Spencers teachers today at Preschool. He is having some anger issues and punched a child for touching the puzzle he was working on. It was not all bad news though, we were told he is very polite and always uses his magic words.
We also had to meet with Spencers teachers today at Preschool. He is having some anger issues and punched a child for touching the puzzle he was working on. It was not all bad news though, we were told he is very polite and always uses his magic words.
Thursday, November 10, 2011
Tough times
Well, we have certainly been busy, over the past week Spencer had his last soccer game and his awards banquet. Gary went back to work this week and I have been taking care of Tucker solo. It's hard enough taking care of a healthy newborn, keeping up with daily weight gains, oxygen readings and medications is physically exhausting.
To add to our stress, Saturday, my best friend Kelli's (from Maine) 9 day old niece Peyton died from SIDS. You can imagine our sorrow as my family is very close to hers, Nelson her brother is
one of my brother, Chris's best friends. (ironically, their friendship is how Kelli and I even met over 20 years ago). We have been through some of the greatest times together, our marriages, the birth of our children, and we have countless party stories. We have also shared some of the toughest of times, with the loss of our dear friend Dave. Through thick and thin, we have always been side by side, until now. Because of Tucker's compromised immune system and we can not risk him getting sick, since it will land us back at Childrens's Hospital, we can not travel to Maine to attend the services. This is devastating me, because all I want to be is with her and her family at this terrible time.
Let's hope that things get a little brighter.
To add to our stress, Saturday, my best friend Kelli's (from Maine) 9 day old niece Peyton died from SIDS. You can imagine our sorrow as my family is very close to hers, Nelson her brother is
one of my brother, Chris's best friends. (ironically, their friendship is how Kelli and I even met over 20 years ago). We have been through some of the greatest times together, our marriages, the birth of our children, and we have countless party stories. We have also shared some of the toughest of times, with the loss of our dear friend Dave. Through thick and thin, we have always been side by side, until now. Because of Tucker's compromised immune system and we can not risk him getting sick, since it will land us back at Childrens's Hospital, we can not travel to Maine to attend the services. This is devastating me, because all I want to be is with her and her family at this terrible time.
Let's hope that things get a little brighter.
Wednesday, November 2, 2011
Wednesday November 2nd
Today early intervention stopped by to see how Tucker is progressing. He is still eating well and gaining weight, there is not much else to monitor at this early age. They will be returning on November 16th so that they can keep an eye on his progress.
Spencer is still acting out in preschool. He is not listening to his teachers very well, and has picked up a new word "butthole". The thing that bothers us the most is that he uses it correctly, where an adult would say "asshole".
Spencer is still acting out in preschool. He is not listening to his teachers very well, and has picked up a new word "butthole". The thing that bothers us the most is that he uses it correctly, where an adult would say "asshole".
Tuesday, November 1, 2011
Tuckers first cardiologist appointment
Today we met Dr.Porras , Tuckers pediatric cardiologist. We learned that Tucker was only the third child to receive stints to avoid the first open heart surgery for Tricuspid Artesia. He thinks Tucker will be able to go about 6+ months before needing the Glenn procedure. The Glenn procedure will be the first part of the permanent fix to Tuckers circulatory system. The Glenn procedure will take place at the Children's hospital, where Tucker will remain for 4+ weeks to heal.
Gary's brother who works for National Grid was able to swing by our house on his break and turn our power back on at the pole. This saved us a few days waiting, being the only house on our street without power. It was awesome to be able to return home after our appointment to a house with heat.
We really cant thank all of our family and friends enough for all of the support. You are all the greatest, Thank You!
Gary's brother who works for National Grid was able to swing by our house on his break and turn our power back on at the pole. This saved us a few days waiting, being the only house on our street without power. It was awesome to be able to return home after our appointment to a house with heat.
We really cant thank all of our family and friends enough for all of the support. You are all the greatest, Thank You!
Tuesday, October 25, 2011
Day 8 through 14
Day 8 Tuesday
Gary and I had a jam packed day full of various medical training, we had to learn how to use a pulse oximiter, learn how to draw up Tuckers four liquid medications, and use the specialized hospital scale. Gary spent the night at the hospital so I could spend a night at home with Spencer.
Day 9 Wednesday
Gary had to go into work today, so when I got to Children's Hospital, we swapped the car and I spent the day in the hospital finishing learning to keep track of his high calorie formula and his medical binder. Noel Dwyer, Tuckers NICU RN stopped by to see us off as well. We were discharged around 3pm. First stop on the way home was the compounding pharmacy (in Framingham) to pick up Tuckers medications. then home to see big brother Spencer.
Day 10 Thursday
Tucker slept for 5 hours straight through the night. Gary got up most of the night so I could get some well needed rest. We took it easy for most if the morning, because the VNA would be coming around 1pm. I took a nap while the baby napped, I woke up around noon, ate lunch and awaited our RN. A little after 1pm, Bonnie arrived, she was a lovely, friendly, sensitive lady. She gave us a bunch of information and helped us hook Tucker up to the pulse ox machine. The VNA will come out weekly.
Day 11 Friday
Gary and I continue to give Tucker his medications and weigh him on a daily basis, he is continuing to grow. Today we took Tucker to meet his Pediatrician Dr. Kolpa.
Day 12 Saturday
Spencer had soccer today. Mommy got to go while daddy stayed at home with Tucker. It was freezing out but it was good to have some mommy time. The weather channel is forecasting 8 inches tonight. I was completely in denial until It started snowing in the afternoon. Around 7pm a huge branch fell off of the tree in our driveway onto my car. I moved my car to the front of the house, where it would be safe.
Day 13 Sunday The snow storm
In the early morning hours, a tree fell and hit the house tearing the power lines off of it. I believe that it was the same tree that fell and also hit my car. The electrician came and said that since the wires were live, the power had to be turned off. No power means no heat, so off to grandfathers house in NH we went.
Day 14 Monday Halloween
Spencer is going stir crazy at my fathers house and Gary and I are going out of our minds. Nothing like traveling with an infant and all of his medication and equipment. Halloween was canceled because of the storm, so Spencer couldn't even go out and go trick or treating. Had to have my car towed to the auto body to get fixed after all of the damage from the storm.
Gary and I had a jam packed day full of various medical training, we had to learn how to use a pulse oximiter, learn how to draw up Tuckers four liquid medications, and use the specialized hospital scale. Gary spent the night at the hospital so I could spend a night at home with Spencer.
Day 9 Wednesday
Gary had to go into work today, so when I got to Children's Hospital, we swapped the car and I spent the day in the hospital finishing learning to keep track of his high calorie formula and his medical binder. Noel Dwyer, Tuckers NICU RN stopped by to see us off as well. We were discharged around 3pm. First stop on the way home was the compounding pharmacy (in Framingham) to pick up Tuckers medications. then home to see big brother Spencer.
Day 10 Thursday
Tucker slept for 5 hours straight through the night. Gary got up most of the night so I could get some well needed rest. We took it easy for most if the morning, because the VNA would be coming around 1pm. I took a nap while the baby napped, I woke up around noon, ate lunch and awaited our RN. A little after 1pm, Bonnie arrived, she was a lovely, friendly, sensitive lady. She gave us a bunch of information and helped us hook Tucker up to the pulse ox machine. The VNA will come out weekly.
Day 11 Friday
Gary and I continue to give Tucker his medications and weigh him on a daily basis, he is continuing to grow. Today we took Tucker to meet his Pediatrician Dr. Kolpa.
Day 12 Saturday
Spencer had soccer today. Mommy got to go while daddy stayed at home with Tucker. It was freezing out but it was good to have some mommy time. The weather channel is forecasting 8 inches tonight. I was completely in denial until It started snowing in the afternoon. Around 7pm a huge branch fell off of the tree in our driveway onto my car. I moved my car to the front of the house, where it would be safe.
Day 13 Sunday The snow storm
In the early morning hours, a tree fell and hit the house tearing the power lines off of it. I believe that it was the same tree that fell and also hit my car. The electrician came and said that since the wires were live, the power had to be turned off. No power means no heat, so off to grandfathers house in NH we went.
Day 14 Monday Halloween
Spencer is going stir crazy at my fathers house and Gary and I are going out of our minds. Nothing like traveling with an infant and all of his medication and equipment. Halloween was canceled because of the storm, so Spencer couldn't even go out and go trick or treating. Had to have my car towed to the auto body to get fixed after all of the damage from the storm.
Monday, October 24, 2011
Day 7 Monday Mommy and Tuckers first night together.
Spencer woke up with a runny nose, Gary and I panicked because we thought that he was getting sick. Then he started to drool, thankfully he must just be getting molars. Whew!
I packed a bag and Gary drove me into Boston so I could spend my first night with Tucker. Shortly after we arrived we meet with a resident named Diego that works for Dr. Oscar B. The chief of cardiology at MGH. He stated, "Tucker is doing so well, we are running out of reasons to keep him here". So it looks like one more Echo of his heart, another X-ray to make sure his stints haven't shifted, some training for Gary and I and we are good to go home. Yay! Overnight, Tucker passed his car seat test with flying colors, I even tried to breastfeed him yesterday, with our luck, the lactation consultant thinks that he might be tongue tied. Hopefully we can get that fixed before we go home.
I packed a bag and Gary drove me into Boston so I could spend my first night with Tucker. Shortly after we arrived we meet with a resident named Diego that works for Dr. Oscar B. The chief of cardiology at MGH. He stated, "Tucker is doing so well, we are running out of reasons to keep him here". So it looks like one more Echo of his heart, another X-ray to make sure his stints haven't shifted, some training for Gary and I and we are good to go home. Yay! Overnight, Tucker passed his car seat test with flying colors, I even tried to breastfeed him yesterday, with our luck, the lactation consultant thinks that he might be tongue tied. Hopefully we can get that fixed before we go home.
Sunday, October 23, 2011
Day 6, Sunday
I could not sleep very well last night, I had to call the NICU at 4 am to make sure everything went well overnight. Everything went really well last night, Tucker is up to a little over and ounce of milk and seems to be satisfied with that amount. We kind of got a late start today, we had a lot to do at home to get Spencer's lunches and clothes together for the week.
We got into the city around 10am and grandfather and Nancy where already there. Unfortunately Tucker cannot have any visitors in the NICU without a parent, so they and to wait until we arrived.
We got some great news just after Nancy and grandfather left. Tucker was going to be moved to the cardiac floor because he is doing so well. To prepare him for the trip he got moved from a Isolet to a crib. He no longer has to have the dextrose by IV, so they were able to remove his central access line that was in his belly button. He is still working his way up to full feeds, which will hopefully be tomorrow.
We got into the city around 10am and grandfather and Nancy where already there. Unfortunately Tucker cannot have any visitors in the NICU without a parent, so they and to wait until we arrived.
We got some great news just after Nancy and grandfather left. Tucker was going to be moved to the cardiac floor because he is doing so well. To prepare him for the trip he got moved from a Isolet to a crib. He no longer has to have the dextrose by IV, so they were able to remove his central access line that was in his belly button. He is still working his way up to full feeds, which will hopefully be tomorrow.
Day 5, Mommys going home alone
Today Kelli went to feed Tucker at 9am because the doctors needed to take some vital's before they can discharge me from Brigham Women's. Little Tucker is up to about 3/4 of an once per feeding which is still not enough to please him. The Lasix seems to be going very well the only side effect seems to be frequent urination. My brother Chris came down from Maine to meet the little man, also Grammy, Great Grammy, and Gary's sister Michelle.
Yesterday Gary took Spencer to his soccer game, the teams where pretty evenly matched. When one of the little boys took the ball from Spencer he pushed the boy to the ground and had to sit out for 5 minutes, Maybe we need to get him into hockey. My cousin Tracey picked up Spencer after soccer so that Gary could come back into the city to spend the day with Tucker and I.
Now that I have been discharged, and Tucker is still in the NICU we have no place to stay. I know that the nurses are taking great care of him, but I still feel like one of us needs to be nearby. Gary had washed all of our clothes and brought them back in thinking he would be prepared in case Tucker got moved to the cardiac floor. Looks like we will be spending a night at home, guess it will be good to sleep in my own bed.
Yesterday Gary took Spencer to his soccer game, the teams where pretty evenly matched. When one of the little boys took the ball from Spencer he pushed the boy to the ground and had to sit out for 5 minutes, Maybe we need to get him into hockey. My cousin Tracey picked up Spencer after soccer so that Gary could come back into the city to spend the day with Tucker and I.
Now that I have been discharged, and Tucker is still in the NICU we have no place to stay. I know that the nurses are taking great care of him, but I still feel like one of us needs to be nearby. Gary had washed all of our clothes and brought them back in thinking he would be prepared in case Tucker got moved to the cardiac floor. Looks like we will be spending a night at home, guess it will be good to sleep in my own bed.
Friday, October 21, 2011
Day 4
Today we woke up at 5 am for my daily blood-work. We made a call over to Children's to check how the feedings went overnight. The feedings are going very well, Tucker is taking milk like a champ. They have to limit his food and slowly increase the amount, which leaves him looking for more (He is truly a Pelkey). They are giving him breast milk (but his supply is currently limited) they are supplementing with Similac Advance to increase his caloric intake. They have started weaning him off of the IV and Dextrose. It looks like everything is going well and he can probably skip the first major open heart surgery. Tucker is still waiting for an opening on the cardiac floor, but he is doing so well that he wont need to go to the cardiac NICU. Instead he will be in a regular room with a convertible bed for mom or dad. This will allow one of us to stay overnight with him and the other to be home with Spencer every night. We would like to keep Spencer's schedule as normal as possible.
We spent quite a long time in the NICU today, We got to meet the attending cardiologist over Tucker, his name was Wayne and Kevin. Not sure about their last names as I left the paperwork in the ICU. They explained that Tucker will have to be put on Lasix in the morning because his oxygen level is steadily increasing, which means there is too much blood flow going to his lungs. They are not too concerned about it, but it might buy us a little less time before the next surgery. Dr Kevin and Dr Wayne made a bet. Dr Kevin said that he thinks Tucker will need surgery around the 3-4month range. Dr Wayne thinks that he will be fine to wait until 6 months. I told them that I will buy them both Starbucks! They really are fantastic!
Tucker also had a lot of visitors today, Kelli came down from Maine to meet him and help me out so Gary could spend a night home with Spencer. Aunt Lolly, Grandfather, Nana, Aunt Nancy, Pam, Spencer and my cousin Jessica also stopped by.
Gary is going to go home tonight, my friend Kelli is going to spend the night with me in my room. Gary should be back in Boston in the afternoon for my checkout of Brigham Women's.
We spent quite a long time in the NICU today, We got to meet the attending cardiologist over Tucker, his name was Wayne and Kevin. Not sure about their last names as I left the paperwork in the ICU. They explained that Tucker will have to be put on Lasix in the morning because his oxygen level is steadily increasing, which means there is too much blood flow going to his lungs. They are not too concerned about it, but it might buy us a little less time before the next surgery. Dr Kevin and Dr Wayne made a bet. Dr Kevin said that he thinks Tucker will need surgery around the 3-4month range. Dr Wayne thinks that he will be fine to wait until 6 months. I told them that I will buy them both Starbucks! They really are fantastic!
Tucker also had a lot of visitors today, Kelli came down from Maine to meet him and help me out so Gary could spend a night home with Spencer. Aunt Lolly, Grandfather, Nana, Aunt Nancy, Pam, Spencer and my cousin Jessica also stopped by.
Gary is going to go home tonight, my friend Kelli is going to spend the night with me in my room. Gary should be back in Boston in the afternoon for my checkout of Brigham Women's.
Thursday, October 20, 2011
Day 3
Tucker came out of the cardiac cath late in the afternoon. We where called to Children's to meet with the cardiac cath team. We where told that his right ventricle was not going to be able to be used. So our first setback is that he will be a single ventricle child. The team was able to place two stints to keep the VSD open. This will hopefully allow him to skip the first open heart surgery. We should know more next week once we see how he maintains his oxygen levels. Tucker did get to feed today, he did not tolerate very much before falling asleep which is common. But we are hopeful that it should improve overnight tonight. More to come, including photos.
Day 2
Late yesterday Gary met with the doctors from cardiac. During the baby's echo-cardiogram the doctors learned that they may be able to open the right side of the heart and hopefully make it partially functional. Once blood flows into the right side there is a chance it will grow. The baby was scheduled for the catheder surgery on Wednesday and would be the third surgery of the day which would be sometime in the afternoon. The baby's oxygen and glucose levels both plateaued at 80 which is perfect for a gestational diabetic and the oxygen level is considered very good for his heart condition.
I got a new nurse this morning in the labor and delivery unit where they are monitoring me and she is wonderful! She is so much more understanding of how hard it is being away from my baby and visitors and Gary bouncing back and forth from Children's. I have been starving since before the c-section and she brought me a menu so I could finally get some real food into my stomach. The nurse was also able to get permission to pull my catheter and get me out of bed and moving. This was extremely important to me because I needed to get moving so i could be moved to another floor and meet my baby and have visitors. The wonderful nurse let my friend Laura visit shortly before they moved me to the 8th floor at Brigham. Gary got me into a wheelchair and we headed upstairs. I think we made the fastest checking in ever, I got permission from my nurse to go visit the baby at Children's almost right away. I did refuse to name him until I could spend some time with him, and he was due to go into surgery sometime in the afternoon. There was no way he was not going to have a name and go into surgery. We went through the names Gary and I liked and I did not think he looked like a Grady, Grant or Sawyer so we named him Tucker David Watson (David after our friend Dave Johansen and Pam's brother, who died over 10 years ago from Wegeners Granulomatosis.).
I got a new nurse this morning in the labor and delivery unit where they are monitoring me and she is wonderful! She is so much more understanding of how hard it is being away from my baby and visitors and Gary bouncing back and forth from Children's. I have been starving since before the c-section and she brought me a menu so I could finally get some real food into my stomach. The nurse was also able to get permission to pull my catheter and get me out of bed and moving. This was extremely important to me because I needed to get moving so i could be moved to another floor and meet my baby and have visitors. The wonderful nurse let my friend Laura visit shortly before they moved me to the 8th floor at Brigham. Gary got me into a wheelchair and we headed upstairs. I think we made the fastest checking in ever, I got permission from my nurse to go visit the baby at Children's almost right away. I did refuse to name him until I could spend some time with him, and he was due to go into surgery sometime in the afternoon. There was no way he was not going to have a name and go into surgery. We went through the names Gary and I liked and I did not think he looked like a Grady, Grant or Sawyer so we named him Tucker David Watson (David after our friend Dave Johansen and Pam's brother, who died over 10 years ago from Wegeners Granulomatosis.).
Wednesday, October 19, 2011
The big day!
Yesterday started with me frantically waking up all night long because I couldn't feel the baby moving. Panic stricken we drove into Boston around 6am, come to find out I was severely dehydrated. As soon as we were checked in and they started pumping hydration into me, his fetal movements picked up. Then at around 9:30 they wheeled me into the OR for my spinal/epidural. It took about 20 minutes to numb, then the C-section proceeded as expected. Baby Watson arrived at 10:04 am and got a quick minute with mom before being rushed to the NICU. Dad went with baby Watson and left Pam with mom in the OR to complete the C-section and tubal ligation. Mom had some complications her blood pressure and oxygen dropped and she vomited and lost alot of blood during the rest of the procedure, narrowly avoiding an immediate blood transfusion. Mom was moved to labor and delivery for 24 hour observation and was not allowed any visitors, even her father was told he could not visit.
During moms complications, Baby Watson was doing well in the NICU with Dad and the 7 nurses. The nurses had to remove merconium from his airway after delivery, so they had to monitor his breathing and his Oxygen saturation levels. Glucose levels where also low and had to be monitored, but that is common when mom had gestational diabetes. The nurses where preparing the baby for the transfer to the Children's Hospital cardiac ICU as planned. After about an hour Baby Watson was stable and the nurses made the call to the Children's cardiac ICU. The cardiac ICU was full and the baby was stable and looking good, so the decision was made to bring him to the Children's NICU instead which is just 1 floor down from the cardiac ICU. The Children's NICU monitored the baby's Glucose and oxygen levels which improved throughout the day. Michelle's father and her aunt Laurie who where not allowed to visit mom where able to go with dad to visit the baby and where his first visitors. Mom didn't get to see the baby for more than one minute after the delivery. So no name for baby boy Watson just yet.
During moms complications, Baby Watson was doing well in the NICU with Dad and the 7 nurses. The nurses had to remove merconium from his airway after delivery, so they had to monitor his breathing and his Oxygen saturation levels. Glucose levels where also low and had to be monitored, but that is common when mom had gestational diabetes. The nurses where preparing the baby for the transfer to the Children's Hospital cardiac ICU as planned. After about an hour Baby Watson was stable and the nurses made the call to the Children's cardiac ICU. The cardiac ICU was full and the baby was stable and looking good, so the decision was made to bring him to the Children's NICU instead which is just 1 floor down from the cardiac ICU. The Children's NICU monitored the baby's Glucose and oxygen levels which improved throughout the day. Michelle's father and her aunt Laurie who where not allowed to visit mom where able to go with dad to visit the baby and where his first visitors. Mom didn't get to see the baby for more than one minute after the delivery. So no name for baby boy Watson just yet.
Thursday, October 13, 2011
I guess they weren't talking about me.
Today started out slow, it took me 2 1/2 hours to get to BWH for what was suppose to be my routine appointments. Another failed NST, ultrasound and BPP. He passed the BPP at a 8/8. While sitting in my OB's office awaiting my MD appointment, the woman that performs my NST's came to get me, she said that Dr. Katz didn't like the results from my repeat NST, so he wanted me to go to Labor & Delivery for additional testing. I was seated in triage of labor and delivery fir 5 hours for more testing, while I was there they made me get a psych consult, something they stressed was routine for the baby's diagnosis. Right before the psych MD's came in I heard two people talking in the hall saying things like..."so she is getting admitted to a room". I panicked and started to cry, I just knew that they were talking about me. And obviously what a perfect time for the psych folks to come in. They got my RN, Jane, who assured me that she was sure that I was going to be released. I received my psych consult and went on my way to my OB's office once I was released. Where I sat for an hour until I helots the go ahead that I could go home with no followup appointments until the date of my csection. What a ridiculously long day. I was grateful to be home and to see Spencer again.
Sunday, October 9, 2011
To do lists
Do they ever end?
I have written so many of these over the past few months. I even started my Christmas shopping today. I am hoping that we will be home by Thanksgiving, but just in case we are not, I wanted to get a head start on it. I am not thinking that I will be doing much outside of the home with a sick newborn.
I also talked to my aunt about a pulse oxcimitor the other day, her respiratory therapist advised her to get one with respirations on it as well. Hopefully this will give us a little piece of mind about the baby's health. As the babies oxygen rate goes down he will have to go right to the hospital. I feel as if I have read all of the best/worse case situations, now we just have to spoil Spencer like crazy over thenext nine days and wait it out.
I have written so many of these over the past few months. I even started my Christmas shopping today. I am hoping that we will be home by Thanksgiving, but just in case we are not, I wanted to get a head start on it. I am not thinking that I will be doing much outside of the home with a sick newborn.
I also talked to my aunt about a pulse oxcimitor the other day, her respiratory therapist advised her to get one with respirations on it as well. Hopefully this will give us a little piece of mind about the baby's health. As the babies oxygen rate goes down he will have to go right to the hospital. I feel as if I have read all of the best/worse case situations, now we just have to spoil Spencer like crazy over thenext nine days and wait it out.
Friday, October 7, 2011
Ftidays agenda.
First up, Allergy shots. Fun! I get to the MD's office in downtown Framingham and they will not give them to me because I got a flu shot on Monday. Apparently a woman had a bad reaction a few weeks ago and ruined it for everyone. NICE!
I treat myself to Starbucks and make my way to the pike. Only to enjoy a lovely sea of red tail lights before me. Ugh! I gave myself a bunch of time today, since I have a bunch of appointments. Since I have ample time today I decide that I am going to be daring and actually find my way to the BWH parking garage. (Instead of parking at Children's and walking through the hospital.). I notice that my gas light is on, lovely, trying to find a gas station in Boston is like looking for a needle in a haystack! I did manage to find it, success! I proceed to floor 4 to find a parking space, and in the matter of 2 minutes I manage to loose my parking ticket, of course I need to have it validated to pay the discounted parking rate. (seriously?). I decide to pay full price and proceed in to the hospital, Starbucks is already kicking in!
Next up, anesthesiology and neurology consult, I meet a lovely Anesthesiologist who asked me about my films, she pulled my previous records and then asked me if she could keep my films for a while agreeing that there was no need for me to stay here all day. She was particularly concerned that Spencer was delivered under a regular spinal, not just an epidural. She assured me that she did not think that I would have any issues if I hadn't before with Spencer, however, she just wants to make sure and run it by the team.
I make my way downstairs to my NST (non stress test) and without fail, not a seat left in the house, LOVE IT! ( I can't help but think, what a long day today is going to be!). I wait about 20 minutes and they call me in, I got a lot of angry looks by people waiting, I think ultrasound must be running behind. But I love my NST's, to try and get the baby to move they give you juice, they must not read the patient's chart... it's got "Gestational Diabetic" all over it! (hehe). I drink a few ounces and he starts to squirm. Yes!
Good thing I didn't get to excited, failed NST...again! Figures out of the 4 beds in the NST room, I am the only one that fails, and has to wait the entire 40 minutes on the machine, only to be sent for a BPP, unbelievable! I guess that you have to just laugh, my luck sucks!
Next up, ultrasound to check the amniotic fluid level, baby's weight, and to get the BPP scores. I wait so long in ultrasound, I should have my very own seat, I see a lovely bunch there as well, a lovely specimen of a mother of already 3 children, and she, you guessed it, pregnant again. She was a spoiled little brat that complained over and over again about how this is disrupting to her schedule. I wanted to slap her! the 3 Kids were so disrespectful to her, I couldn't believe it! She must have been with her mother. The nicest thing I can muster to say about her is that I liked her " I am a vegan" shirt. She finally took the kids out of the waiting room! Thank god!
I waited 45 mins, insane! Everything looks the same, off we go to Advanced Fetal Medicine, and guess who is in the waiting room, the winner of mother of the year, her name is Kearston, and she lives it Fall Riva. I know all of this and more, due to a very inappropriate conversation that she was having in the waiting room. First with a dental office about the miscommunication of an appointment, then with her mom, then with Chad, then a girl named Melissa who is going to go and pick up her other child from school. OMG, I just noticed that she is wearing PJ's and actually looks high on something, she is talking about a mile a minute too, I can't help but wonder, maybe this is why she is here. She goes on and on telling them demands....I am mad but clearly I think it's hysterical its like a reality show gone bad! The kids are playing on the water machine now. They call her in and the entire clan goes into the office. Next they call me in, yup, right into the office next door. Perfect!
After about 30 minutes, 20 of which I had to listen to those crazy screaming kids next door. My new OB enters, Dr Carusi, she reminds me of Popeye's Olive Oil. She said that Dr Feinberg has filled her in to my entire medical history. She asks me some questions and then she asks to see my incision. Looking at it, she thinks that it would be best to make another incision, due to the scar tissue. She said that my previous scar looked fantastic! After a few minutes of questions, we decide that I ready for my csection. One more all day of appointments and we are good to go. I go up to the labor and delivery floor to obtain my MRI's , the anesthesiologist informs me that I should be completely fine with a spinal...Yay!
I treat myself to Starbucks and make my way to the pike. Only to enjoy a lovely sea of red tail lights before me. Ugh! I gave myself a bunch of time today, since I have a bunch of appointments. Since I have ample time today I decide that I am going to be daring and actually find my way to the BWH parking garage. (Instead of parking at Children's and walking through the hospital.). I notice that my gas light is on, lovely, trying to find a gas station in Boston is like looking for a needle in a haystack! I did manage to find it, success! I proceed to floor 4 to find a parking space, and in the matter of 2 minutes I manage to loose my parking ticket, of course I need to have it validated to pay the discounted parking rate. (seriously?). I decide to pay full price and proceed in to the hospital, Starbucks is already kicking in!
Next up, anesthesiology and neurology consult, I meet a lovely Anesthesiologist who asked me about my films, she pulled my previous records and then asked me if she could keep my films for a while agreeing that there was no need for me to stay here all day. She was particularly concerned that Spencer was delivered under a regular spinal, not just an epidural. She assured me that she did not think that I would have any issues if I hadn't before with Spencer, however, she just wants to make sure and run it by the team.
I make my way downstairs to my NST (non stress test) and without fail, not a seat left in the house, LOVE IT! ( I can't help but think, what a long day today is going to be!). I wait about 20 minutes and they call me in, I got a lot of angry looks by people waiting, I think ultrasound must be running behind. But I love my NST's, to try and get the baby to move they give you juice, they must not read the patient's chart... it's got "Gestational Diabetic" all over it! (hehe). I drink a few ounces and he starts to squirm. Yes!
Good thing I didn't get to excited, failed NST...again! Figures out of the 4 beds in the NST room, I am the only one that fails, and has to wait the entire 40 minutes on the machine, only to be sent for a BPP, unbelievable! I guess that you have to just laugh, my luck sucks!
Next up, ultrasound to check the amniotic fluid level, baby's weight, and to get the BPP scores. I wait so long in ultrasound, I should have my very own seat, I see a lovely bunch there as well, a lovely specimen of a mother of already 3 children, and she, you guessed it, pregnant again. She was a spoiled little brat that complained over and over again about how this is disrupting to her schedule. I wanted to slap her! the 3 Kids were so disrespectful to her, I couldn't believe it! She must have been with her mother. The nicest thing I can muster to say about her is that I liked her " I am a vegan" shirt. She finally took the kids out of the waiting room! Thank god!
I waited 45 mins, insane! Everything looks the same, off we go to Advanced Fetal Medicine, and guess who is in the waiting room, the winner of mother of the year, her name is Kearston, and she lives it Fall Riva. I know all of this and more, due to a very inappropriate conversation that she was having in the waiting room. First with a dental office about the miscommunication of an appointment, then with her mom, then with Chad, then a girl named Melissa who is going to go and pick up her other child from school. OMG, I just noticed that she is wearing PJ's and actually looks high on something, she is talking about a mile a minute too, I can't help but wonder, maybe this is why she is here. She goes on and on telling them demands....I am mad but clearly I think it's hysterical its like a reality show gone bad! The kids are playing on the water machine now. They call her in and the entire clan goes into the office. Next they call me in, yup, right into the office next door. Perfect!
After about 30 minutes, 20 of which I had to listen to those crazy screaming kids next door. My new OB enters, Dr Carusi, she reminds me of Popeye's Olive Oil. She said that Dr Feinberg has filled her in to my entire medical history. She asks me some questions and then she asks to see my incision. Looking at it, she thinks that it would be best to make another incision, due to the scar tissue. She said that my previous scar looked fantastic! After a few minutes of questions, we decide that I ready for my csection. One more all day of appointments and we are good to go. I go up to the labor and delivery floor to obtain my MRI's , the anesthesiologist informs me that I should be completely fine with a spinal...Yay!
Thursday, October 6, 2011
Grateful
Gary and I are extremely grateful to have such a great support system.
Yesterday both of our workplaces had baby showers for us. We received an outpouring of support and gifts.
Thank you just doesn't seem to be enough sometimes.
Yesterday both of our workplaces had baby showers for us. We received an outpouring of support and gifts.
Thank you just doesn't seem to be enough sometimes.
Sunday, October 2, 2011
Happy Birthday Gary!
I started the day today going to the "Consign my Closet" event with Pam. There I got a used (barely) Brittax stroller for $75. It was the deal of the century. Since today is Gary's 35th birthday, as much as we were not in the mood for a big celebration. We (Gary's mom, Spencer and I) took the birthday boy to his favorite restaurant, Longhorn. Pam and Kevin cooked us dinner and made a carrot cake for Gary as well.
It seems that I have also come to terms with this pregnancy, looks like "nesting" has started. We are almost ready for baby to arrive. Just a few more things to get in order before our life gets turned upside down.
I was thinking how lucky I am to have found the greatest husband in the world. It makes me so happy that He had a fantastic day, it was nothing too fancy, but it was perfect for us.
I am so thankful going to bed tonight. :o)
It seems that I have also come to terms with this pregnancy, looks like "nesting" has started. We are almost ready for baby to arrive. Just a few more things to get in order before our life gets turned upside down.
I was thinking how lucky I am to have found the greatest husband in the world. It makes me so happy that He had a fantastic day, it was nothing too fancy, but it was perfect for us.
I am so thankful going to bed tonight. :o)
Tuesday, September 27, 2011
That stupid cyst in my brain!
Yesterday I had more appointments, there is nothing like driving into Boston on a Monday morning! Yuck! My appointments started at 8am, first up, NST (non stress test). I failed, as I knew that I would, the baby is not active in the mornings, which was the exact thing that I told the receptionist when I booked my appointments. I sat hooked up to a machine for 40 minutes and the baby didn't move very much, so I went to have what's called a BPP, AKA an ultrasound. They checked the baby's breathing and such. Everything looked good, then I waited for my OB to sign off on it. Then went to the Advanced Fetal Medicine Department for my regularly scheduled appointment, I did all of the normal things, however no internal exams for this girl, One bonus! (I guess it's too risky for me.)
Dr Bruce Feinberg is following my care and Dr Dani Carusi will be delivering the baby because Dr Feinberg will be on vacation, still aggravated that I haven't meet her yet. I just remembered that the receptionist in the office never called me back to set up a followup appointment for me. Huff!
Dr Feinberg told me that because of the cyst that is in my brain that I will have to have a neurosurgical and an anesthesia consult. They scheduled them for after my appointment. He also told me that he wanted to get a weight on the baby so I would have to go back after my consult for another ultrasound.
So I made my way up to the labor and delivery floor and waited for the neuro-surgery and anesthesia departments. They asked me a complete medical history and then advised me that with this type of cyst in the brain that I should have never have attempted to have a natural birth. Oops! I guess that when you have these types of brain cysts, you should never push. You should also not have a complete spinal. Which I had with Spencer. Another oops! I guess they give you what is called a 50/50. Half of a spinal and half of a epidural. The fluid that is
Inserted into the spine goes directly to the brain, which can make the cyst increase in size. So they told me that I needed to get clearance from
My primary neurosurgeon that I can get the 50/50 and I have to be able to produce the last few of my MRI scans to the BWH Anesthesia and neurosurgery department for review and approval. They will need to know where it is in the brain and how large it is. Hopefully I will not have to obtain new MRI films. A brain MRI would not be fun, especially pregnant! Yikes!
So I called and faxed over my release for medical records today to NEMC. Let's hope that I get them soon...we only have 3 more weeks from today until the delivery.
I also filled out my living will and health care proxy tonight, that certainly makes it feel real close....I wish that we could just stop time forever! :o(
Dr Bruce Feinberg is following my care and Dr Dani Carusi will be delivering the baby because Dr Feinberg will be on vacation, still aggravated that I haven't meet her yet. I just remembered that the receptionist in the office never called me back to set up a followup appointment for me. Huff!
Dr Feinberg told me that because of the cyst that is in my brain that I will have to have a neurosurgical and an anesthesia consult. They scheduled them for after my appointment. He also told me that he wanted to get a weight on the baby so I would have to go back after my consult for another ultrasound.
So I made my way up to the labor and delivery floor and waited for the neuro-surgery and anesthesia departments. They asked me a complete medical history and then advised me that with this type of cyst in the brain that I should have never have attempted to have a natural birth. Oops! I guess that when you have these types of brain cysts, you should never push. You should also not have a complete spinal. Which I had with Spencer. Another oops! I guess they give you what is called a 50/50. Half of a spinal and half of a epidural. The fluid that is
Inserted into the spine goes directly to the brain, which can make the cyst increase in size. So they told me that I needed to get clearance from
My primary neurosurgeon that I can get the 50/50 and I have to be able to produce the last few of my MRI scans to the BWH Anesthesia and neurosurgery department for review and approval. They will need to know where it is in the brain and how large it is. Hopefully I will not have to obtain new MRI films. A brain MRI would not be fun, especially pregnant! Yikes!
So I called and faxed over my release for medical records today to NEMC. Let's hope that I get them soon...we only have 3 more weeks from today until the delivery.
I also filled out my living will and health care proxy tonight, that certainly makes it feel real close....I wish that we could just stop time forever! :o(
Saturday, September 24, 2011
What is sleep?
Ok, now I realize that at this point in your pregnancy the baby is enormous and any possibility of sleeping a complete night is crazy. But at some point over the last few days, the baby has shifted and is lying on my Sciatic nerve. My OB hugged me and told me, I am sorry but there is nothing that we can do about it. If your blood sugar gets low try to drink a little orange juice, but that's it.
Seriously?
Seriously?
Friday, September 23, 2011
BWH NICU Consult
Yesterday we (Gary, Donnie and I) went to BWH to meet the new baby's BWH NICU triage team. Sarah Bates (the baby's doctor that will perform the Apgar's scores and the initial assessment) meet us in a meeting room outside of the NICU.
After, the baby is born he will get his initial assessment and then we can take photos of him hopefully before he will get all of his lines and tubes that he will have for the next few weeks. I stressed to Sarah how important that it was for us to have some pictures without these items. She assured us that she understood and that she will do everything in her power to make sure that we get some. I also discussed the possibility of there being another person in the OR with us, because Gary will leave me and go with the baby after about 15 minutes. She said that they would/could accommodate another person in there as well.
After our meeting we toured the BWH NICU, (this was nothing like the CICU) this is where the baby and Gary will go first after they leave the OR. They will start the PGE there and intimate him if he needs it. He will be in Triage for approximately 1 hour before he makes his voyage over the bridge in the "plastic bread box" to Children's Hospital.
It was great to see where the baby will be going since I will not be able to go there as well. But it still breaks my heart that I will not be able to hold him. :o(
Donnie treated us to Boloco...yum!
I have more appointments today and first thing on Monday. This is getting a little ridiculous!
Friday, September 16, 2011
Another sad day.
Since I could not even muster a conversation with the Greyhound Rescue, I asked Pam to call. Greyhound Friends told Pam that they were having a Foster event this weekend at the rescue so to try and bring him there sometime this week so his odds were good that a family would adopt him. He is good with cats, most Greyhounds are not, but he does have anxiety during thunderstorms.
The hardest part of all of this was telling Spencer, we told him that Chance was going to go to a doggie school so that he could play with his friends like you do when you go to preschool. He seems to be adjusting to it. More than Gary and I are. I think that I still feel extrememly guilty. I hope that gets better with time.
So Chance wherever you end up in the remainder of your senior life, you will make a fantastic dog to a wonderful family.
Thank you for all of the lovely memories!
Thursday, September 15, 2011
I got my C-section Date!
Well I just got the call that we have been waiting for and of course as luck would have it. My c-section date was rescheduled again for Tuesday October 18th. We are really hoping that this is a sign from above that all will be ok. There is nothing like having your little boy on the day that you married the greatest man in the world. :o)
Wednesday, September 14, 2011
A very long day.
Today Gary and I had appointments all day long at Brigham and Woman's and Children's Hospital. We left Clinton at 7:30 am, we dropped Spencer off at preschool and pulled in the driveway at7:25pm. It was a long day to say the least.
We started with my weekly allergy shots in Framingham, then we worked our way into the city for everything else. We started our day off with a 10am ultrasound, except we were told to go to the wrong location so we ended up running a little behind. We arrived at Ultrasound and the RN from Maternal Fetal Medicine checked us in. (Thank god for her...because the receptionist was far from friendly.) We had a scheduled ultrasound to check on fluids and to check for cleft lip. We then were greeted by Dr Bruce Feinberg who I was told previously would be delivering the baby. He confirmed that the previous ultrasound and diagnosis was accurate...Tricuspid Atresia (Tricuspid valve not formed) VSD(hole between lower chambers). However he assured me that my fluids looked good and that he did not see cleft lip, however that the baby's head was down.
After our ultrasound we made our way over again to Advanced Fetal Medicine where we had an appointment with a RN to go over everything that in a normal pregnancy would have already happened. For example, since I am almost 35 weeks, we had to cram everything that happens in weeks 8-34 into a 1 hours visit. All of the questions left my head spinning. After what seems like an eternity we were allowed to go to lunch because we had an appointment with Dr. Feinberg at 1pm.
Gary and I found our way to the cafe,it was so expensive and I hope that I never eat there again!
We waited for Dr. Feinberg who was the most kind and patient man that I have ever met. We discussed everything about my past pregnancy's and also a tubal ligation. I assured him that I never wanted to be pregnant again so he agreed that due to my "ADVANCED MATERNAL AGE" (Insanity!) that I would be an acceptable candidate for it. However, there was talk of going into preterm labor "naturally" and what exactly would my birthing options be? He had had a conversation with another attending there about the arachnoid cyst in my brain, they believed that that would not allow me to "push" as with a natural birth. I told him that I have come to peace with a csection and that I would like to have the tubal ligation as well, so he believed that this would be accepted as the final decision. Dr. Feinberg, had to be the bearer of bad news, as you can imagine, I feel as I have had enough bad news by now. He would be on vacation and out of the country for almost a month to Israel celebrating the Jewish holiday, and sadly he would not be my attending. Lets see, that would make the 4th OB that I have meet during my pregnancy. He was going to talk to a woman who he called Dani, who he said was a much better surgeon that he was. His words exactly, "I am a great surgeon, but when anyone needs help, we call Dani." So I really feel that I am in fantastic hands, who's ever they may be. More appointments were made for 2 more weeks.
Then we walked over to Children's hospital where we had a pediatric echocardiogram of the baby's heart to make sure that nothing had changed and a final diagnosis was made my the chief of Pediatric Cardiology. Yes, the baby has Tricuspid Atresia VSD and this is how we fix it. There was a lot of information that was given to Gary and I. It really left our heads spinning. Most importantly, there was nothing that we did to cause it, it just happens early on in the baby's life cycle, but there are a few options that we can do to fix it.
There will be 3 scenarios after birth & likely 3 heart surgeries in the first few years of life:
1. If blood flow to the lungs is not obstructed, too much blood may go to the lungs over the first few weeks of life. Pulmonary artery band may be needed timing will be unknown for surgery.
2. If there is no pulmonary blood flow to lungs from heart, medication (PGE) will be started and shunt surgery will be needed.
3. Mild lung blood flow obstruction, possible to go home without surgery. (Very unlikely, seen only in few cases)
The last question that I asked was prognosis and life expectancy. The MD told me that it is very possible that our child would be a healthy boy, except for this heart defect, however, heart surgery will need to be done and the possibility that the baby would survive all 3 surgery's without complications would be around 85%. However, you need to prepare yourself that the baby will be in the cardiac NICU for almost a month at birth.
We were then assured that if we have any questions to call and ask the MD's. We were then introduced to the social worker who showed us how to get into the NICU and introduced us to a fantastic nurse named Moira, who had a niece with the same diagnosis as our child. She smiled and said that she just celebrated her 8th birthday. (This was extremely comforting.) We toured the family rooms the lactation room and were shown where the bathrooms were. She explained how the floor worked and that the RN's pull 12 hours shift rotations, so they like no disturbance between the hours of 7am-7:30am or 7pm-7:30pm due to shift changes. They need to inform the incoming RN of all of the changes. We were then allowed to walk into a few different rooms to see exactly what things were in there. There were so many tubes and machines it was the worst thing that I could have ever imagined. And it was surreal that Gary and I would be our new home. This was also the point in our day that I had lost all composure and started to sob. Nothing on this earth prepares you to see an IV in a babies head. The Rn was lovely and assured us that this was only a pit stop on our way out of the hospital.
We then thanked Moira for her time and she assured us that we would be in fantastic hands when baby #2 does arrive.
We got stuck in traffic and I cried the entire way home. I wish that I could just fast forward 3 years and see what my life was going to be like. I keep clinging to the psychic that I saw a several years before I had Spencer, she told me that I would have 2 boys.
Praying that she was right!
We started with my weekly allergy shots in Framingham, then we worked our way into the city for everything else. We started our day off with a 10am ultrasound, except we were told to go to the wrong location so we ended up running a little behind. We arrived at Ultrasound and the RN from Maternal Fetal Medicine checked us in. (Thank god for her...because the receptionist was far from friendly.) We had a scheduled ultrasound to check on fluids and to check for cleft lip. We then were greeted by Dr Bruce Feinberg who I was told previously would be delivering the baby. He confirmed that the previous ultrasound and diagnosis was accurate...Tricuspid Atresia (Tricuspid valve not formed) VSD(hole between lower chambers). However he assured me that my fluids looked good and that he did not see cleft lip, however that the baby's head was down.
After our ultrasound we made our way over again to Advanced Fetal Medicine where we had an appointment with a RN to go over everything that in a normal pregnancy would have already happened. For example, since I am almost 35 weeks, we had to cram everything that happens in weeks 8-34 into a 1 hours visit. All of the questions left my head spinning. After what seems like an eternity we were allowed to go to lunch because we had an appointment with Dr. Feinberg at 1pm.
Gary and I found our way to the cafe,it was so expensive and I hope that I never eat there again!
We waited for Dr. Feinberg who was the most kind and patient man that I have ever met. We discussed everything about my past pregnancy's and also a tubal ligation. I assured him that I never wanted to be pregnant again so he agreed that due to my "ADVANCED MATERNAL AGE" (Insanity!) that I would be an acceptable candidate for it. However, there was talk of going into preterm labor "naturally" and what exactly would my birthing options be? He had had a conversation with another attending there about the arachnoid cyst in my brain, they believed that that would not allow me to "push" as with a natural birth. I told him that I have come to peace with a csection and that I would like to have the tubal ligation as well, so he believed that this would be accepted as the final decision. Dr. Feinberg, had to be the bearer of bad news, as you can imagine, I feel as I have had enough bad news by now. He would be on vacation and out of the country for almost a month to Israel celebrating the Jewish holiday, and sadly he would not be my attending. Lets see, that would make the 4th OB that I have meet during my pregnancy. He was going to talk to a woman who he called Dani, who he said was a much better surgeon that he was. His words exactly, "I am a great surgeon, but when anyone needs help, we call Dani." So I really feel that I am in fantastic hands, who's ever they may be. More appointments were made for 2 more weeks.
Then we walked over to Children's hospital where we had a pediatric echocardiogram of the baby's heart to make sure that nothing had changed and a final diagnosis was made my the chief of Pediatric Cardiology. Yes, the baby has Tricuspid Atresia VSD and this is how we fix it. There was a lot of information that was given to Gary and I. It really left our heads spinning. Most importantly, there was nothing that we did to cause it, it just happens early on in the baby's life cycle, but there are a few options that we can do to fix it.
There will be 3 scenarios after birth & likely 3 heart surgeries in the first few years of life:
1. If blood flow to the lungs is not obstructed, too much blood may go to the lungs over the first few weeks of life. Pulmonary artery band may be needed timing will be unknown for surgery.
2. If there is no pulmonary blood flow to lungs from heart, medication (PGE) will be started and shunt surgery will be needed.
3. Mild lung blood flow obstruction, possible to go home without surgery. (Very unlikely, seen only in few cases)
The last question that I asked was prognosis and life expectancy. The MD told me that it is very possible that our child would be a healthy boy, except for this heart defect, however, heart surgery will need to be done and the possibility that the baby would survive all 3 surgery's without complications would be around 85%. However, you need to prepare yourself that the baby will be in the cardiac NICU for almost a month at birth.
We were then assured that if we have any questions to call and ask the MD's. We were then introduced to the social worker who showed us how to get into the NICU and introduced us to a fantastic nurse named Moira, who had a niece with the same diagnosis as our child. She smiled and said that she just celebrated her 8th birthday. (This was extremely comforting.) We toured the family rooms the lactation room and were shown where the bathrooms were. She explained how the floor worked and that the RN's pull 12 hours shift rotations, so they like no disturbance between the hours of 7am-7:30am or 7pm-7:30pm due to shift changes. They need to inform the incoming RN of all of the changes. We were then allowed to walk into a few different rooms to see exactly what things were in there. There were so many tubes and machines it was the worst thing that I could have ever imagined. And it was surreal that Gary and I would be our new home. This was also the point in our day that I had lost all composure and started to sob. Nothing on this earth prepares you to see an IV in a babies head. The Rn was lovely and assured us that this was only a pit stop on our way out of the hospital.
We then thanked Moira for her time and she assured us that we would be in fantastic hands when baby #2 does arrive.
We got stuck in traffic and I cried the entire way home. I wish that I could just fast forward 3 years and see what my life was going to be like. I keep clinging to the psychic that I saw a several years before I had Spencer, she told me that I would have 2 boys.
Praying that she was right!
Thursday, September 1, 2011
The worst day in the world!
On August 29th, 2011, our world completely changed. It was then that I was told by 3 Children's Hospital Pediatric Cardiologists that the son that I was carrying in utero had a heart defect called Tricuspid Atresia.
Let me backup a few years, in November of 2006, I was told for the third time that I was pregnant. Previously I have had 2 other pregnancies one resulted in a miscarrage and the other a tubal ligation. So we thought the third time had to be a charm. And it was, On August 6, 2007, my husband Gary and I welcomed Spencer Patrick into our world.
During my pregancy with Spencer, I was told that he had various things, club feet, cleft lip and webbed fingers. As I sat in UMass in Framingham, they spoke to my husband and I and they were confident that they were seeing a diagnosis of Trisomy 18. The next few weeks were hell, but it quickly turned out that they were all incorrect and I gave birth to a healthy, happy baby boy.
So in August 2011, when I was prompted by a Maternal Fetal Medicine Doctor at Newton-Wellesley Hospital to just get an echocardiogram at Massachusetts General Hospital because he felt that he saw something "unusual, but I am sure it's nothing" I didn't even think twice about not bringing my husband to the appointment because I knew that it would, in the end, turn out to be nothing.
We are still waiting for that moment...
Let me backup a few years, in November of 2006, I was told for the third time that I was pregnant. Previously I have had 2 other pregnancies one resulted in a miscarrage and the other a tubal ligation. So we thought the third time had to be a charm. And it was, On August 6, 2007, my husband Gary and I welcomed Spencer Patrick into our world.
During my pregancy with Spencer, I was told that he had various things, club feet, cleft lip and webbed fingers. As I sat in UMass in Framingham, they spoke to my husband and I and they were confident that they were seeing a diagnosis of Trisomy 18. The next few weeks were hell, but it quickly turned out that they were all incorrect and I gave birth to a healthy, happy baby boy.
So in August 2011, when I was prompted by a Maternal Fetal Medicine Doctor at Newton-Wellesley Hospital to just get an echocardiogram at Massachusetts General Hospital because he felt that he saw something "unusual, but I am sure it's nothing" I didn't even think twice about not bringing my husband to the appointment because I knew that it would, in the end, turn out to be nothing.
We are still waiting for that moment...
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