Wednesday, September 29, 2010
Here's looking at you, kid.
It's been a while since I've posted pictures, so here are some from the past few days.
He has a new talent!
I know it's not the most exciting video, but after spending a week not seeing this, those blinks were amazing! (Ignore the chatter in the background.)
Week One: September 22nd - 29th
 |
Sep 22nd Happy BIRTH Day! You were born @ 10:20pm and weighed 4 pounds and 4 ounces. You were 17 inches long. Mumma and Daddy weren’t expecting you quite so soon, but we were happy to see you. Uncle Andrew came to the hospital to keep Mumma company while Daddy went with you to Children’s Hospital. |
 |
| Sep 23rd Our first family picture! Mumma and Daddy got a call at 4am that you were going to be sedated. When we visited you it was as if you were asleep. We were very afraid to touch you. We very gingerly touched your feet and hands. That afternoon you had surgery to close your ductus arteriosis. |
 |
Sep 24th When Daddy heard that you were going to have surgery so soon after being born he called Grandma and Grandpa to see if they were going to come visit. They left Thursday when Grandma was done with work and arrived on Friday- driving through the night. They were very excited to meet you. |
 |
Sep 25th Today was your last day in an open bassinet. By the time we visited on Sunday you had been moved into a “giraffe”, the name given to the isolette due to its long neck. You were moved so that they could keep your temperature more stable. If you hadn’t been born so early, Mumma and Daddy would have gone to a James concert. Instead the tickets were unused. |
 |
Sep 26th After a long wait to get discharged from the Brigham, Mumma and Daddy had a quick visit with you before going home for Mumma’s previously scheduled baby shower. As you can see in this picture, after surgery your chest had been left open in case they needed to get in again. |
 |
| Sep 27th Happy Birthday Daddy! When we first found out that Mumma was pregnant with you, we never thought you would arrive before Daddy’s birthday. When we learned that you might be born early, Grandma guessed you would be born on the 27th. |
 |
| Sep 28th We brought in some socks and hats for you to wear. Unfortunately they were all WAY too big. And these were the smallest ones we had. Guess you’ll have to grow into them. As a birthday present for Daddy, your chest was sewn up. You’re doing great! |
 |
| Sep 29th Mumma knew she wanted to take weekly and monthly photos of you to show your growth. But what should she use as a constant presence to really show your change in size? Then she thought of Paddington since he fit perfectly with your British themed nursery. She had to order one and discovered that they come in different colors due to different illustrators. |
Tuesday, September 28, 2010
Medical Update
Daddy Chris here to give you an update on all that has happened to Bennett over the last week (because somehow I've managed to remember most things that have happened).
When Bennett was born Wednesday night the doctors and nurses in the Brigham NICU were very pleasantly surprised with how pink he was and how good his blood oxygen levels were given the severity of his heart defect. They did all the normal things for a new baby-weighed him, put the ointment on his eyes, etc. During the time that they were doing their thing a cardiologist from Children's was talking to me about the heart defect that Bennett had. None of what he told me was new, but it served to make me focus on what he was saying instead of worrying about what the others were doing.
Once they got through there checklist he was moved over to Children's. Chris and I had discussed earlier in the evening about whether they would use the same bridge that everyone uses or if there was some other way to transfer patients. Turns out they use the same bridge. On the way over the bridge the cardiologist from Children's pressed his ID badge against the card reader and the door opened. While we waited for the rest of the caravan I asked him how I was supposed to get back to the Brigham. He looked at me kinda funny and I said
"You used your ID to open the door. I don't have an ID that opens the door. How do I get back?"
Pauses...."I don't know. Maybe the ICU nurses will know how to do that."
Let me just say now, the CICU nurses at Children's are the greatest. From the time I walked into Bennett's room there was a nurse there explaining exactly what they were doing, making sure the 3-4 doctor's who came in knew that I was the Dad, made sure everyone knew that he had a name and what it was, and was so calm about it that I just relaxed. The Brigham NICU people seemed to be in a rush. All of the Children's doctors and nurses seemed very calm. Each doctor that came in the room took a few minutes to introduce themselves and chat with me before leaving again. Liz, the nurse that was with Bennett his first night was great. She explained everything that the others were doing and when the commotion had died down took the time to explain what all the numbers on the screen meant and what they should be, what the next steps were going to be, and then very politely said he was in for a long night and I should probably go see how Chris was doing. She then found a security guard to escort be back across the bridge to the Brigham.
At 4am Thursday morning, the phone rings. They are going to put Bennett on some drugs that will make him paralyzed and painless. I asked something to the effect of should we come over and he told me that there would be a lot of people in the room. We discovered this is polite doctor speak for "don't come over here right now." When we went to see Bennett later that day he was completely immobile and had many tubes and wires all over his little body. The doctor came in and said that they were going to have to do surgery as soon as the surgeon finished with his current operation.
This is when the people started showing up. The anesthesiologist showed up to explain what they were going to do and then we had to sign the consent forms. Later a second anesthesiologist came in and said the same things. Then the cardiologist came in and explained briefly what they were going to try. Later the surgeon came in when he had finished his other surgery and explained exactly what he was going to do. He told us that they were going to try tying off the ductus arteriosus and seeing if that worked before permanently closing the ductus. He said once they tied it off they may have to wait 2-3 hours before they could determine if it worked. This would mean that Bennett was on the table just being watched. If that didn't work they would attempt to separate the tricuspid valve from the wall of the heart and possibly repair or replace the pulmonary valve. All this was expected to take at minimum 6 hours. Then the nurses started coming in and re-explaining everything. Somehow the two of us held it together.
At 1o'clock they were ready to take Bennett down for surgery. We were offered the chance to kiss him and hug him. Up to this point we didn't know that we could kiss him, so we both declined. When they wheeled him out of the room, I started crying. We stayed around for about another 10 minutes and then made our way back to the Brigham to wait.
At 3:20 I received a call saying they had made the first incision at 3o'clock. The next call would be when he went on the heart bypass machine. I went to take care of some paperwork at Children's and missed a call from the surgeon. At 4o'clock they had finished the surgery. Closing off the ductus had had such an immediate effect that they didn't need to try anything else at that time. Later that evening we went to see him. This was when the anesthesiologist told us that he had the most lines in the hospital. The cardiologist came by to visit and tell us how the surgery went. For the time being his lungs were getting the blood they needed. It wasn't flowing in the proper way, but it was getting there. We stayed for a little while longer that night. The nurse told us that the first 12 hours after heart surgery are the most critical, with the 12th hour being the absolute most critical. This timeline made 4:30am the critical hour.
The next morning I woke with a start, looked at the clock and realized it was 6am. I looked at my phone and realized no one had called. The critical hour had come and gone with no phone call. I called my parents who were driving up from Georgia and told them the good news. When we arrived at his room that morning the nurse told us that he had had a very uneventful night. His blood pressure dipped around 3am but obviously not enough to warrant a call. He had made it past a very critical stage.
The next few days saw lots of little changes. He was very swollen from the surgery and the extra fluids they were pumping into his body. However, he was peeing like a champ which was helping to get rid of the fluid. As part of the surgery they hadn't closed his chest. They put a green membrane over the opening that was sutured to the surrounding skin. This allowed room for the impending swelling and gave them quick access if something should go wrong. Before the surgery they offered to show us another baby in the unit with a similar membrane, so that we wouldn't be shocked when he came back. We said no. We could have seen a hundred babies that had had their chests opened this way and it wouldn't have prepared us for seeing OUR son with his chest open like that. At this point he had at least a dozen pumps that were giving him controlled doses of medicine.
Saturday saw him with a few less pumps and lines. Sunday was a status quo day. At some point we brought in a blanket and Paddington Bear to put in his bed. We started adopting the policy that no news is good news. When we arrived in the morning the nurses would give us a very thorough update of how Bennett had done overnight and what was expected of him for the day to come.
On Monday we decided to run some errands on our way to the hospital, so we got there a little later than normal, probably around 1 or so. Chris had to go pump again. I feel bad because whenever we're there, she has to spend so much time pumping and I get to spend time with Bennett. I know this will change once he comes home and I go back to work, but right now I feel a little guilty that I get more time with him. I've also discovered that I really only talk to him when there is no one else in the room. These are mainly lectures on how he really has no choice in the matter, he's going to get better. We brought a book from Chris' Shower to read to him but didn't get the chance. I picked "The Little Engine That Could."
While Chris was away pumping on Monday, the cardiologist came in said they were going to close up Bennett's chest. They felt he had done well and saw no reason to leave it open longer. Within the hour they would come in and close him up. This was at 2pm. By 5pm they were just getting ready to sew him shut. We stayed until a little after 5pm and then headed home for my birthday dinner that my dad was preparing. Again, no news is good news. At 8pm that night I called to find out how Bennett had done, the nurse told us that everything had gone perfectly. They didn't even have to adjust his meds, and his blood pressure was nice and steady, which was a major concern. Quite possibly the best birthday present I will ever receive.
When we went in to see him this morning, the first thing we both noticed was that we could see a lot more of him. Overnight he had lost quite a few of his lines. And his hands were now visible since both IVs had been removed. We were also told that they had stopped the medication that was making him immobile. This drug takes quite a while to get out of his system, but it meant he would start to open his eyes and maybe move a bit. We were happy to touch his new found hands. After he had his diaper changed we put on some socks that we brought from home. They go pretty much to his knees. And we put a hat on him. I was so scared to move his head that the nurse had to lift up his head so that I could put the hat on. Again, the hat is way to big for him and it was the smallest we had. Around 1pm Kelly showed up and we went to look at Bennett again. I noticed that his eyes were open a little wider than before. As Chris went to get the camera, he closed them. We got very excited that he was opening his eyes. We stared at him for quite a while as he tried to open and close his heavy eyelids. For Chris, who hadn't seen him move at all, this was wonderful. Later when Uncle Andrew and Aunt Gentry stopped by, Bennett entertained us by opening his eyes very wide and then closing them again. I put my finger in to hold his hand and two of his fingers twitched. The paralytic was starting to wear off. Hopefully tomorrow he'll be more responsive. They also stopped his Fentinol, which is his pain medication. So from Friday having a dozen pumps, he now only has 4, and one of those is his Lipids (yum, fat).
So now it's all about meeting goals. He needs to be weened off the Nitrous Oxide which is helping his lungs, the breather which is breathing for him (this was needed while he was paralyzed, but should be less needed as he becomes more active), and start taking breastmilk through a feeding tube, ultimately moving to at least a bottle if not breastfeeding. Once he does all of these things he may be allowed to leave the Cardiac ICU and go to another wing on the same floor. But leaving the CICU is one step closer to coming home. He will need more surgeries to fix his heart fully, but the doctors hope that it will be months, years or even a decade before they have to do that surgery. But they just don't know. The longer he is out of the hospital and growing, the greater their chance of success with later surgeries.
The nurses have told us from the beginning that they are the most expensive babysitters Bennett will ever have. I would gladly pay every penny the day he comes home.
When Bennett was born Wednesday night the doctors and nurses in the Brigham NICU were very pleasantly surprised with how pink he was and how good his blood oxygen levels were given the severity of his heart defect. They did all the normal things for a new baby-weighed him, put the ointment on his eyes, etc. During the time that they were doing their thing a cardiologist from Children's was talking to me about the heart defect that Bennett had. None of what he told me was new, but it served to make me focus on what he was saying instead of worrying about what the others were doing.
Once they got through there checklist he was moved over to Children's. Chris and I had discussed earlier in the evening about whether they would use the same bridge that everyone uses or if there was some other way to transfer patients. Turns out they use the same bridge. On the way over the bridge the cardiologist from Children's pressed his ID badge against the card reader and the door opened. While we waited for the rest of the caravan I asked him how I was supposed to get back to the Brigham. He looked at me kinda funny and I said
"You used your ID to open the door. I don't have an ID that opens the door. How do I get back?"
Pauses...."I don't know. Maybe the ICU nurses will know how to do that."
Let me just say now, the CICU nurses at Children's are the greatest. From the time I walked into Bennett's room there was a nurse there explaining exactly what they were doing, making sure the 3-4 doctor's who came in knew that I was the Dad, made sure everyone knew that he had a name and what it was, and was so calm about it that I just relaxed. The Brigham NICU people seemed to be in a rush. All of the Children's doctors and nurses seemed very calm. Each doctor that came in the room took a few minutes to introduce themselves and chat with me before leaving again. Liz, the nurse that was with Bennett his first night was great. She explained everything that the others were doing and when the commotion had died down took the time to explain what all the numbers on the screen meant and what they should be, what the next steps were going to be, and then very politely said he was in for a long night and I should probably go see how Chris was doing. She then found a security guard to escort be back across the bridge to the Brigham.
At 4am Thursday morning, the phone rings. They are going to put Bennett on some drugs that will make him paralyzed and painless. I asked something to the effect of should we come over and he told me that there would be a lot of people in the room. We discovered this is polite doctor speak for "don't come over here right now." When we went to see Bennett later that day he was completely immobile and had many tubes and wires all over his little body. The doctor came in and said that they were going to have to do surgery as soon as the surgeon finished with his current operation.
This is when the people started showing up. The anesthesiologist showed up to explain what they were going to do and then we had to sign the consent forms. Later a second anesthesiologist came in and said the same things. Then the cardiologist came in and explained briefly what they were going to try. Later the surgeon came in when he had finished his other surgery and explained exactly what he was going to do. He told us that they were going to try tying off the ductus arteriosus and seeing if that worked before permanently closing the ductus. He said once they tied it off they may have to wait 2-3 hours before they could determine if it worked. This would mean that Bennett was on the table just being watched. If that didn't work they would attempt to separate the tricuspid valve from the wall of the heart and possibly repair or replace the pulmonary valve. All this was expected to take at minimum 6 hours. Then the nurses started coming in and re-explaining everything. Somehow the two of us held it together.
At 1o'clock they were ready to take Bennett down for surgery. We were offered the chance to kiss him and hug him. Up to this point we didn't know that we could kiss him, so we both declined. When they wheeled him out of the room, I started crying. We stayed around for about another 10 minutes and then made our way back to the Brigham to wait.
At 3:20 I received a call saying they had made the first incision at 3o'clock. The next call would be when he went on the heart bypass machine. I went to take care of some paperwork at Children's and missed a call from the surgeon. At 4o'clock they had finished the surgery. Closing off the ductus had had such an immediate effect that they didn't need to try anything else at that time. Later that evening we went to see him. This was when the anesthesiologist told us that he had the most lines in the hospital. The cardiologist came by to visit and tell us how the surgery went. For the time being his lungs were getting the blood they needed. It wasn't flowing in the proper way, but it was getting there. We stayed for a little while longer that night. The nurse told us that the first 12 hours after heart surgery are the most critical, with the 12th hour being the absolute most critical. This timeline made 4:30am the critical hour.
The next morning I woke with a start, looked at the clock and realized it was 6am. I looked at my phone and realized no one had called. The critical hour had come and gone with no phone call. I called my parents who were driving up from Georgia and told them the good news. When we arrived at his room that morning the nurse told us that he had had a very uneventful night. His blood pressure dipped around 3am but obviously not enough to warrant a call. He had made it past a very critical stage.
The next few days saw lots of little changes. He was very swollen from the surgery and the extra fluids they were pumping into his body. However, he was peeing like a champ which was helping to get rid of the fluid. As part of the surgery they hadn't closed his chest. They put a green membrane over the opening that was sutured to the surrounding skin. This allowed room for the impending swelling and gave them quick access if something should go wrong. Before the surgery they offered to show us another baby in the unit with a similar membrane, so that we wouldn't be shocked when he came back. We said no. We could have seen a hundred babies that had had their chests opened this way and it wouldn't have prepared us for seeing OUR son with his chest open like that. At this point he had at least a dozen pumps that were giving him controlled doses of medicine.
Saturday saw him with a few less pumps and lines. Sunday was a status quo day. At some point we brought in a blanket and Paddington Bear to put in his bed. We started adopting the policy that no news is good news. When we arrived in the morning the nurses would give us a very thorough update of how Bennett had done overnight and what was expected of him for the day to come.
On Monday we decided to run some errands on our way to the hospital, so we got there a little later than normal, probably around 1 or so. Chris had to go pump again. I feel bad because whenever we're there, she has to spend so much time pumping and I get to spend time with Bennett. I know this will change once he comes home and I go back to work, but right now I feel a little guilty that I get more time with him. I've also discovered that I really only talk to him when there is no one else in the room. These are mainly lectures on how he really has no choice in the matter, he's going to get better. We brought a book from Chris' Shower to read to him but didn't get the chance. I picked "The Little Engine That Could."
While Chris was away pumping on Monday, the cardiologist came in said they were going to close up Bennett's chest. They felt he had done well and saw no reason to leave it open longer. Within the hour they would come in and close him up. This was at 2pm. By 5pm they were just getting ready to sew him shut. We stayed until a little after 5pm and then headed home for my birthday dinner that my dad was preparing. Again, no news is good news. At 8pm that night I called to find out how Bennett had done, the nurse told us that everything had gone perfectly. They didn't even have to adjust his meds, and his blood pressure was nice and steady, which was a major concern. Quite possibly the best birthday present I will ever receive.
When we went in to see him this morning, the first thing we both noticed was that we could see a lot more of him. Overnight he had lost quite a few of his lines. And his hands were now visible since both IVs had been removed. We were also told that they had stopped the medication that was making him immobile. This drug takes quite a while to get out of his system, but it meant he would start to open his eyes and maybe move a bit. We were happy to touch his new found hands. After he had his diaper changed we put on some socks that we brought from home. They go pretty much to his knees. And we put a hat on him. I was so scared to move his head that the nurse had to lift up his head so that I could put the hat on. Again, the hat is way to big for him and it was the smallest we had. Around 1pm Kelly showed up and we went to look at Bennett again. I noticed that his eyes were open a little wider than before. As Chris went to get the camera, he closed them. We got very excited that he was opening his eyes. We stared at him for quite a while as he tried to open and close his heavy eyelids. For Chris, who hadn't seen him move at all, this was wonderful. Later when Uncle Andrew and Aunt Gentry stopped by, Bennett entertained us by opening his eyes very wide and then closing them again. I put my finger in to hold his hand and two of his fingers twitched. The paralytic was starting to wear off. Hopefully tomorrow he'll be more responsive. They also stopped his Fentinol, which is his pain medication. So from Friday having a dozen pumps, he now only has 4, and one of those is his Lipids (yum, fat).
So now it's all about meeting goals. He needs to be weened off the Nitrous Oxide which is helping his lungs, the breather which is breathing for him (this was needed while he was paralyzed, but should be less needed as he becomes more active), and start taking breastmilk through a feeding tube, ultimately moving to at least a bottle if not breastfeeding. Once he does all of these things he may be allowed to leave the Cardiac ICU and go to another wing on the same floor. But leaving the CICU is one step closer to coming home. He will need more surgeries to fix his heart fully, but the doctors hope that it will be months, years or even a decade before they have to do that surgery. But they just don't know. The longer he is out of the hospital and growing, the greater their chance of success with later surgeries.
The nurses have told us from the beginning that they are the most expensive babysitters Bennett will ever have. I would gladly pay every penny the day he comes home.
Sunday, September 26, 2010
Tough day for Mumma
Yesterday was a tough one for me- both physically and mentally. In general, my recovery process has been going swimmingly. I've been up and walking- perhaps even for longer distances than the nurses may like, but I've felt ok. A little sore, but not so bad. In fact, Friday night and Saturday morning I started to cut down on some of my doses of meds. Pain hasn't been so bad.Thursday and Friday mornings after waking we would make our way "quickly" over to Children's to see Bennett. I put quickly in quotes because we found that between when we wake up and when we can leave, it seems to take 2-3 hours. Pumping, showering, ordering food and eating, and speaking with the nurses takes a while! But yesterday we decided to take it a little easier. We knew we'd have a lot of visitors today over at Children's, so we spent some more time gathering some things together so that we could rest at Children's- laptop, magazines, etc. By the time we headed over it was probably 11:00 or so.
We got there and had a little bit of time to get updated on how Bennett's doing. And I went to pump. Bennett's first visitors of the day were Uncle Andrew and Aunt Gentry. Unfortunately they didn't get to stay long. The nurse was going to remove some of Bennett's lines and wanted us to step out while she did this. Since it was after lunch time by this point, we headed down to the cafe. While there, Grandma and Grandpa Tedford arrived. We all chatted for a bit and then Andrew and Gentry had to leave for a wedding that they were going to. I felt bad that their visit with Bennett was so short, but there will be plenty more opportunities.
A short while later Mel arrived. She seems to have a knack for timing her visits when I'm pumping. :) When she came by on Friday I was just finishing up, and yesterday I was just starting. She got to visit with Bennett, Daddy Chris, and the grandparents while I pumped. Unfortunately her visit was probably cut short by my clumsiness.
I had been at the sink washing my pump parts. As I turned to walk to put the parts away, the leg of my pants got stuck on the footrest of the wheelchair and down I went. According to those who saw, it was a very graceful fall. Bennett's nurse had stepped out of the room, but another nurse came over to make sure I was ok. When Ben's nurse returned she told me I had to go get checked out. I was going to go anyway, but she was pretty insistent that I go in the next 20 minutes. So everyone took this as their cue to leave. Mel headed home and the grandparents headed back to our house.
Chris and I headed back to the Brigham. Although I had walked over to Children's in the morning, we had brought a wheelchair in case I needed it. I needed it to get back! I'll admit it, I was in pain. Part of the pain was probably just due to the fact that I was overdue to take my meds, but other pain was fall related. When we got back to my room we had a nurse come in and check me out, and she had a doctor come by who asked me a few questions as well, just to be safe. All looked good, but I was sore. And tired. I lay in bed for a while until we got a call that Chris' co-worker Leslie had arrived.
I briefly thought about just staying at the Brigham for a little while longer, but ultimately decided to go back to Children's with Chris. We were talking with Leslie, and Chris was going over some of the details of what had happened to him over the past few days, and that's when I had the realization that Chris had been able to see Bennett move. All I've seen is Bennett in his sedated state. Realizing this brought the first tears of the day to my eyes.
I think it was also around this time that I was realizing that I have very little idea of what's going on with my son. The doctors and nurses tell me, but most of the time I'm only half aware of what they are saying. The other half is usually zoning out into some sleepy state. Or, I also feel like I'm not there very often as I'm off pumping. I understand the logic behind all of this. I'm tired and I need to pump, but there is certainly Mummy guilt in the fact that I don't know what's happening. (Because of this, at least for the near future, Daddy Chris is going to have to be the one to update you on Bennett's medical condition.
Shortly after Leslie left, Grampa Jerry and Nana Liz came by. Since pumping is my life these days, I headed off to pump. In general, pumping has been going ok. Friday night I was feeling as if my milk was starting to come in. However, the pumping session prior to this one hadn't been great, and this one was very frustrating. My breasts (especially the right one) were rock hard. I pumped, and had great results on the left side (15ML) but only one ML on the right side. And I was still hard.
When I got back into the room I think this hit me. I started crying. Kind of hard. We needed to eat, so Dad and Liz took us out to Bertucci's. It was nice to get out of the hospital. It was gorgeous out! Just the perfect temperature. However, when we got there I was still feeling overwhelmed. Making a decision about what to eat was tricky.
After dinner Dad and Liz headed home and Chris and I went back up to Bennett's room to grab our stuff and say good night. Luckily it wasn't super late at this point- probably around 9:30 or so. When we got back to my room at the Brigham I called my nurse for meds. I was in pain- both in my abdomen and also my breasts. I started crying again. She was wonderful- offering multiple suggestions of things to try (ice, certain positions, etc). And she also asked some of the other nurses for other suggestions.
And Chris has been great. I think we both realized I need more support. I've been trying to let him sleep through my nighttime pumping, but it makes it worse for me. So last night he was wonderful getting up to help me with setup, washing pump parts, etc. And I'm still engorged and in pain, but at least the night wasn't as bad as it could have been.
This morning the OB doctor came in, removed my staples, and basically cleared me to go home. I cried again over my frustrations, but she was very understanding. It's odd how such a seemingly normal and routine thing can frustrate me so much. She also is going to do what she can to have a lactation consultant see me before we leave this morning. If that doesn't happen, I'll make sure that I see one at Children's tomorrow.
So to sum everything up, I'm frustrated- partly because I don't know what's going on with Bennett. My brain is mush. I'm constantly tired. I'm busy with visitors (this doesn't mean you should stop visiting.) I'm buty with pumping. I just can't keep it all together anymore.
And now- for a final word to everyone who we know only mean well....
Please don't tell me that I need to be taking care of myself. That I need to remember to eat and sleep. I know this. We both know this. We are eating. I'm drinking plenty of fluids. I'm sleeping as much as I can. If Bennett were in the room with us, I'd be waking up as much as this so that I can feed him and I wouldn't get so much of what comes across as criticism. I want to ultimately be able to breastfeed Bennett. To be able to do that, I need to keep up with pumping as frequently as I would feed him. This means pumping every 2-3 hours. Since there's set-up and clean-up time that goes along with pumping, I feel as if I'm always pumping. Or at least I should be. I find that I may not be pumping as frequently as I should since I feel like I'm always pumping, but I also know I need to be better at it and keep to a schedule.
Saturday, September 25, 2010
Bennett's Name
It's official. Bennett can legally be a Bredford!
Although we've known for years that we wanted to use the last name Bredford for any children we have we weren't sure if we legally could. And it seems to be a question that stumps people when we've mentioned it here. In fact, when Chris went to fill out the registration paperwork for Bennett and he explained what we were going to do, he was asked, "Does the mother know? And is she ok with it?"
Yesterday afternoon someone found me in my room at the Brigham. This in and of itself is a challenge- it seems as if I'm rarely here. Anyway, I had to give her first and middle names and had to change what she had for last name. Interestingly, they had his last name on the paperwork as Tedford, while everywhere else he has been listed as Baby Boy Breecher.
So I cross out Tedford and write in Bredford. She asks if it had been spelled wrong. I say no, we're giving him a new last name- and I explain that Bredford is a combo of Breecher and Tedford. "Can you do that?" she asks. And this is where I started to get defensive. Maybe because I don't know if I legally can. But as Chris and I have told numerous people now, how is it any different than making up a new last name by hyphenating. Breecher-Tedford is still a new name. It's just more common. I explained this to her and she said she'd call City Hall to verify. A few minutes later, she calls me. No problem! Woo hoo.
She comes back a little while later with the actual certificate for me to sign. I review (and second guess the spelling of my birthplace- does Anniston have one N or two?) and sign. Now we just need to wait a few weeks and we can get our copy. She gave me a letter in instructions on how to do that, and it also included social security info. It says I requested that as well, but I don't remember doing so. It must have been a box that was checked or initialed or something that I assumed was something else. I had been a little distracted during all of this as I was making phone calls during parts and had a visitor (thanks for coming by, Mel) when I had to review and sign the final copy.
Although we've known for years that we wanted to use the last name Bredford for any children we have we weren't sure if we legally could. And it seems to be a question that stumps people when we've mentioned it here. In fact, when Chris went to fill out the registration paperwork for Bennett and he explained what we were going to do, he was asked, "Does the mother know? And is she ok with it?"
Yesterday afternoon someone found me in my room at the Brigham. This in and of itself is a challenge- it seems as if I'm rarely here. Anyway, I had to give her first and middle names and had to change what she had for last name. Interestingly, they had his last name on the paperwork as Tedford, while everywhere else he has been listed as Baby Boy Breecher.
So I cross out Tedford and write in Bredford. She asks if it had been spelled wrong. I say no, we're giving him a new last name- and I explain that Bredford is a combo of Breecher and Tedford. "Can you do that?" she asks. And this is where I started to get defensive. Maybe because I don't know if I legally can. But as Chris and I have told numerous people now, how is it any different than making up a new last name by hyphenating. Breecher-Tedford is still a new name. It's just more common. I explained this to her and she said she'd call City Hall to verify. A few minutes later, she calls me. No problem! Woo hoo.
She comes back a little while later with the actual certificate for me to sign. I review (and second guess the spelling of my birthplace- does Anniston have one N or two?) and sign. Now we just need to wait a few weeks and we can get our copy. She gave me a letter in instructions on how to do that, and it also included social security info. It says I requested that as well, but I don't remember doing so. It must have been a box that was checked or initialed or something that I assumed was something else. I had been a little distracted during all of this as I was making phone calls during parts and had a visitor (thanks for coming by, Mel) when I had to review and sign the final copy.
Friday, September 24, 2010
He's Here!
I'm sure most readers of this blog have heard already, but Bennett Henry Bredford made his entry into the world on Wednesday at 10:20pm. He weighed in at 4 lbs, 4 ounces and is 17" long.
There's plenty that can be told about why he came early and how he's doing, but I'm too tired to think! The short answer is that due to late decels noticed during NSTs that led to a few hours of continuous monitoring and ultimately the decision for him to be delivered (c-section).
Thursday afternoon he had his first surgery which went very well. However the anesthesiologist commented that little Bennett has the most wires attached to him of any baby here at the hospital! Not sure that's a claim to fame that we want. But they keep telling us that he's looking good- so we're going with that.
All grandparents have now had a chance to meet him. Grampa and Nana (Jerry and Liz) came by Thursday night. Mimi (Carolyn) came this morning and Grandma and Grandpa Tedford drove up and arrived this afternoon. Uncle Andrew and Aunt Gentry will be by at some point tomorrow.
I'll try to get some more thorough updates posted as they do help me wrap my brain around everything. Plus they're a nice record of everything we've gone though. However, my brain is mush. I don't think I was ever able to fall asleep on Wednesday night. I did sleep a bit last night but had to get up a few times to pump- really no different than if we were at home and I had to get up to feed him.
There's plenty that can be told about why he came early and how he's doing, but I'm too tired to think! The short answer is that due to late decels noticed during NSTs that led to a few hours of continuous monitoring and ultimately the decision for him to be delivered (c-section).
Thursday afternoon he had his first surgery which went very well. However the anesthesiologist commented that little Bennett has the most wires attached to him of any baby here at the hospital! Not sure that's a claim to fame that we want. But they keep telling us that he's looking good- so we're going with that.
All grandparents have now had a chance to meet him. Grampa and Nana (Jerry and Liz) came by Thursday night. Mimi (Carolyn) came this morning and Grandma and Grandpa Tedford drove up and arrived this afternoon. Uncle Andrew and Aunt Gentry will be by at some point tomorrow.
I'll try to get some more thorough updates posted as they do help me wrap my brain around everything. Plus they're a nice record of everything we've gone though. However, my brain is mush. I don't think I was ever able to fall asleep on Wednesday night. I did sleep a bit last night but had to get up a few times to pump- really no different than if we were at home and I had to get up to feed him.
Thursday, September 16, 2010
A Mini Update
Today I went back for another NST and a BPP. Passed the BPP with flying colors. Amazing what can happen when you get a chance to eat lunch, and you drink a Coke on the ride over. :)
Unfortunately, Baby didn't pass the NST. However, the nurse commented afterward that some babies never pass a NST, so she didn't seem overly concerned.
Back again on Wednesday for another day at the two hospitals. And in theory, we scheduled appointments far enough apart that we'll have time to get lunch.
Unfortunately, Baby didn't pass the NST. However, the nurse commented afterward that some babies never pass a NST, so she didn't seem overly concerned.
Back again on Wednesday for another day at the two hospitals. And in theory, we scheduled appointments far enough apart that we'll have time to get lunch.
33 Weeks
Your baby is proportioned like a pineapple when it comes to weight -- a little over 4 pounds. (Length: more than 17 inches, head to heel.)
33 Weeks- Development
Your Baby This Coming Week
Your baby weighs almost 5 lbs (2250 g) and is 12.8 inches (32cm) from crown to rump and about 19.8 inches (44cm) long. If your baby were born now, she would be considered "pre-term" rather than premature. This distinction is based on fetal maturity, particularly the maturity of the fetal lungs. A pre-term baby, unlike a premature baby, is likely to have well-developed lungs and is less likely to need intensive care.
Your baby is surrounded by a red glow when sunlight shines on your belly and may be aware of this as she is able to differentiate between light and dark.
Your baby's hair is getting thicker, though it may be a different color when she is older.
She is currently shedding her lanugo, the fine downy hair that previously covered her body.
More vernix, the waxy coating that protects your baby's skin while submerged in amniotic fluid, is building up.
Your baby's adrenal glands are producing more steroid hormone, the androgen-like hormone that indirectly aids your milk production. Your baby is currently producing ten times more of this hormone than a normal adult and the adrenal glands are currently the same size as those of an adolescent. They will shrink after birth.
Your baby is laying down bone. To do this, she will draw calcium from you.
Your baby has taste buds and it has been suggested that she can taste and develop tastes for flavors found in the amniotic fluid, particularly flavors that you eat on a regular basis.
Your Body This Coming Week
Your baby is beginning to drop in your pelvis and you may have noticed that the shape of your abdomen has changed because of this. This may also cause increased pressure in your pelvic region. While Braxton Hicks contractions are probably becoming more regular, you may also experience false labor. This is different from Braxton Hicks contractions because false labor, unlike Braxton Hicks, can be very painful. These contractions are irregular and usually last under 45 seconds and are not sustained. If you are unsure if you are experiencing false labor, you should contact your care provider.
If your water breaks, you should contact your doctor immediately.
You may have bloody show that occurs as the cervix stretches and dilates, especially right after a vaginal exam. You may also pass a mucus plug. Neither bloody show or passing the mucus plug necessarily indicates that labor will commence right away, but it will not be far away.
33 Week Journal
How far along? 33 weeks
Total weight gain/loss: Up 2 pounds from 2 weeks ago, when the battery died in the scale.
Stretch Marks: Just noticed a couple more little ones this morning. Overall, not bad at all though.
Sleep: Decent enough.
Best moment this week: Hearing that the baby's heart hasn't gotten any worse than it was a week ago.
Worst moment this week: Knowing that the chances of survival post-delivery aren't that great. Lots of unknowns for the future.
Movement: I thought movement was pretty good, but apparently not good enough yesterday afternoon.
Belly Button in or out? Slightly out.
Wedding rings on or off? On.
What I'm going to miss/What I can't wait for: I'm ready to be done going to the doctor!
Weekly Wisdom: Don't dwell on the negative.
Milestones/Fun Moments: I think this was the first week they told us how much the baby weighs. Too bad they had such conflicting numbers.
What we need to do: Have this baby!
Don't forget, you can try to guess when Baby will be here... Click here to enter a guess in our baby pool.
Total weight gain/loss: Up 2 pounds from 2 weeks ago, when the battery died in the scale.
Stretch Marks: Just noticed a couple more little ones this morning. Overall, not bad at all though.
Sleep: Decent enough.
Best moment this week: Hearing that the baby's heart hasn't gotten any worse than it was a week ago.
Worst moment this week: Knowing that the chances of survival post-delivery aren't that great. Lots of unknowns for the future.
Movement: I thought movement was pretty good, but apparently not good enough yesterday afternoon.
Belly Button in or out? Slightly out.
Wedding rings on or off? On.
What I'm going to miss/What I can't wait for: I'm ready to be done going to the doctor!
Weekly Wisdom: Don't dwell on the negative.
Milestones/Fun Moments: I think this was the first week they told us how much the baby weighs. Too bad they had such conflicting numbers.
What we need to do: Have this baby!
Don't forget, you can try to guess when Baby will be here... Click here to enter a guess in our baby pool.
Wednesday, September 15, 2010
Today was a LONG day!
Here's how the schedule was supposed to look.
7:45 (try to arrive at 7:30) Ultrasound
9:30 MRI
11:00 Fetal ECHO
1:00 OB appointment
2:15 Ultrasound and BPP
Yeah. I think the theme of the day was that we (or the doctors) were always running behind schedule. We didn't finish up until 5:00. And we didn't really get a break at all except for about half an hour between the MRI and the ECHO. We got a couple of cute ultrasound pictures, which I'll have to scan and post later.
So how did it go?
Ultrasound went well. Last week at my BPPs it was sometimes hard to get a good look at some things because Baby wasn't really moving around that much. So in preparation, I had lots of OJ on our way to the hospital so that Baby would wake up. It worked. Baby was moving around a lot, doing lots of practice breathing, etc. I'm not sure if she actually did an official BPP or just quickly looked at those items, but she said we got an 8 out of 8. Also, based on measurements that she took, she estimated that Baby currently weighs about 3 pounds, 14 ounces. And I think in general, everything looked good (other than the heart).
Next up was the MRI. Very weird experience. I've never thought of myself as being one who is claustrophobic. I had closed my eyes on my way into the MRI machine and opened them briefly once I was in. I had to close them immediately. Very tight space. So I kept my eyes shut and tried to focus on my breathing. I would start to doze off a bit, and then there would be loud noises and I'd wake up. Not really sure how long it took- I think about 20 minutes.
We didn't get a chance to speak with the doctor who performed the MRI, but the cardiologist spoke with her and said everything looked ok. After the MRI, we had a little bit of a break so we went and got a snack. We thought we would have enough time to grab lunch before the OB appointment, so we kept it light.
So next up was the ECHO. Overall not too bad. Not sure what the difference was, but he seemed much more personable today. He didn't feel that things had worsened at all since last week, which is good. And we had plenty of time to go over the list of questions that we had.
Since they couldn't get Baby to do a practice breath, they sent me for a Non Stress Test (NST). What this measures is Baby's heart rate. They try to compare a normal rate vs any change in rate when Baby moves around. But again, we had the issue where Baby didn't want to move. By now it's 3:30/4:00ish. I still haven't eaten. So I failed this test as well.
After the NST it was back to meet with the OB. First there was some confusion re where one piece of my paperwork went. Then they wondered if there had been any weights given at earlier ultrasounds. You would think, with as much as I've been going in for one test or another this would have been frequently measured, but apparently that wasn't the case. They found one ultrasound from back in July that had a weight. But it's hard to tell if the low weight estimate is because the baby is just generally growing at a slower rate, or if the heart problems are impeding the weight gain. And then there's also the 10 ounce discrepancy between the measurements taken at Children's and those taken at the Brigham. So what's next?
I get to go back tomorrow (Thursday) for another BPP and NST. But since it was now 5:00, they couldn't schedule it as everyone has gone home. So I get to call in the morning and have them tell me when to come in. Hopefully it's not at a really inconvenient time. At least I should be able to eat before hand. Hopefully that will help things.
As to other follow-up. Back in a week to meet with the OB again (still needs to be scheduled) and also back on Wednesday for another ECHO. Don't know yet if there will need to be other BPPs and NSTs scheduled in there as well. I hope not!
When we finally left, we grabbed some dinner at a local Bertucci's (Chris really wanted their rolls and oil) and then we headed home. In the end of rush hour traffic. Blech! I think we were both very glad to finally get home- about 13 hours after we left this morning.
7:45 (try to arrive at 7:30) Ultrasound
9:30 MRI
11:00 Fetal ECHO
1:00 OB appointment
2:15 Ultrasound and BPP
Yeah. I think the theme of the day was that we (or the doctors) were always running behind schedule. We didn't finish up until 5:00. And we didn't really get a break at all except for about half an hour between the MRI and the ECHO. We got a couple of cute ultrasound pictures, which I'll have to scan and post later.
So how did it go?
Ultrasound went well. Last week at my BPPs it was sometimes hard to get a good look at some things because Baby wasn't really moving around that much. So in preparation, I had lots of OJ on our way to the hospital so that Baby would wake up. It worked. Baby was moving around a lot, doing lots of practice breathing, etc. I'm not sure if she actually did an official BPP or just quickly looked at those items, but she said we got an 8 out of 8. Also, based on measurements that she took, she estimated that Baby currently weighs about 3 pounds, 14 ounces. And I think in general, everything looked good (other than the heart).
Next up was the MRI. Very weird experience. I've never thought of myself as being one who is claustrophobic. I had closed my eyes on my way into the MRI machine and opened them briefly once I was in. I had to close them immediately. Very tight space. So I kept my eyes shut and tried to focus on my breathing. I would start to doze off a bit, and then there would be loud noises and I'd wake up. Not really sure how long it took- I think about 20 minutes.
We didn't get a chance to speak with the doctor who performed the MRI, but the cardiologist spoke with her and said everything looked ok. After the MRI, we had a little bit of a break so we went and got a snack. We thought we would have enough time to grab lunch before the OB appointment, so we kept it light.
So next up was the ECHO. Overall not too bad. Not sure what the difference was, but he seemed much more personable today. He didn't feel that things had worsened at all since last week, which is good. And we had plenty of time to go over the list of questions that we had.
- After delivery, how much time would we get with the baby before he/she has to go off to Children's? Essentially none.
- What are the odds like? Last week he mentioned the baby may not survive the pregnancy or delivery. Really no concern from him at this point re pregnancy or delivery, but he'd estimate that post-delivery, there's a 70-80% chance the baby may not make it. There are multiple options for things they can try once the baby is born, and probably won't be able to really decide what to do until after Baby is born.
- Any reason to deliver early? How would that be determined? At this point he felt the only reason to deliver early would be if there were a benefit to immediate surgery. He did not feel that there would be a benefit.
- C-section vs vaginal delivery? Going into this I was kind of assuming I would have to have a section. We kind of figured that a normal birth would stress the baby out too much and be bad for the heart. Although he said it's ultimately up to my OB, he didn't feel there was a need to go with a section based on Baby's heart.
- After the baby is born, would Boy Chris be able to go with Baby to Cardiac ICU? Yes! I know it's probably completely unfounded, but I had this fear of him not being able to go with the baby, and then me not being able to find him/her.
- I forget exactly what we asked, but it came up re inducing. Basically, without a medical reason, not before 39 weeks. And it could be up to me. If I want to wait and see what happens, they can do that. There are some benefits of being induced in that the medical support team that we'll need for the baby will know when it's happening, but if I were to go when be baby's ready, it wouldn't be a problem to get the necessary people to the delivery room.
- Another interesting comment, was that she said the baby would go first to the NICU at the Brigham. This was surprising, because our sense from the cardiologist was that that the baby would pretty much be going straight to the Cardiac ICU at Children's.
Since they couldn't get Baby to do a practice breath, they sent me for a Non Stress Test (NST). What this measures is Baby's heart rate. They try to compare a normal rate vs any change in rate when Baby moves around. But again, we had the issue where Baby didn't want to move. By now it's 3:30/4:00ish. I still haven't eaten. So I failed this test as well.
After the NST it was back to meet with the OB. First there was some confusion re where one piece of my paperwork went. Then they wondered if there had been any weights given at earlier ultrasounds. You would think, with as much as I've been going in for one test or another this would have been frequently measured, but apparently that wasn't the case. They found one ultrasound from back in July that had a weight. But it's hard to tell if the low weight estimate is because the baby is just generally growing at a slower rate, or if the heart problems are impeding the weight gain. And then there's also the 10 ounce discrepancy between the measurements taken at Children's and those taken at the Brigham. So what's next?
I get to go back tomorrow (Thursday) for another BPP and NST. But since it was now 5:00, they couldn't schedule it as everyone has gone home. So I get to call in the morning and have them tell me when to come in. Hopefully it's not at a really inconvenient time. At least I should be able to eat before hand. Hopefully that will help things.
As to other follow-up. Back in a week to meet with the OB again (still needs to be scheduled) and also back on Wednesday for another ECHO. Don't know yet if there will need to be other BPPs and NSTs scheduled in there as well. I hope not!
When we finally left, we grabbed some dinner at a local Bertucci's (Chris really wanted their rolls and oil) and then we headed home. In the end of rush hour traffic. Blech! I think we were both very glad to finally get home- about 13 hours after we left this morning.
Thursday, September 9, 2010
32 Weeks
Your baby is taking up more and more space in your uterus and weighs as much as a large jicama -- about 3 3/4 pounds. (Length: about 16 3/4 inches, head to heel.)
32 Weeks- Development
Your Baby This Coming Week
Your baby now weighs about 4.4 lbs (2000g) and measures about 12 inches (30cm) from crown to rump and about 19.4 inches (43cm) in total.
Now that your baby is running out of room in your womb, you can probably see your belly moving as your baby kicks.
Your baby may dream as he sleeps and when awake he may be alert, listening, feeling and even seeing dim shapes.
Though your baby is still inside the womb, he is learning all the time as billions of neurons are making connections.
Your baby is probably in his birth position by now.
Your baby's lungs may be sufficiently developed by now, though if he were born now, he would probably still need an incubator to stay warm.
Your blood volume has increased 40% to meet your baby's needs and your uterus has grown 500 times since before you were pregnant.
You may be feeling uncomfortable and feel the need to urinate frequently.
You may be experiencing vivid dreams.
Your baby now weighs about 4.4 lbs (2000g) and measures about 12 inches (30cm) from crown to rump and about 19.4 inches (43cm) in total.
Now that your baby is running out of room in your womb, you can probably see your belly moving as your baby kicks.
Your baby may dream as he sleeps and when awake he may be alert, listening, feeling and even seeing dim shapes.
Though your baby is still inside the womb, he is learning all the time as billions of neurons are making connections.
Your baby is probably in his birth position by now.
Your baby's lungs may be sufficiently developed by now, though if he were born now, he would probably still need an incubator to stay warm.
Your Body This Coming Week
Your weight gain by now may be as much as 28 lbs and you are gaining weight faster than at any other time in your pregnancy. This is because your baby is growing rapidly right now.Your blood volume has increased 40% to meet your baby's needs and your uterus has grown 500 times since before you were pregnant.
You may be feeling uncomfortable and feel the need to urinate frequently.
You may be experiencing vivid dreams.
32 Week Journal
How far along? 32 weeks
Total weight gain/loss: No idea. The battery in my scale died, so I can't see if there was any change this week.
Stretch Marks: Nothing new
Sleep: Decent. Some crazy dreams the past couple of nights, which of course I don't remember.
Best moment this week: Did some shopping over the weekend and picked up a few clothes. Think I may have found the going home outfit.
Worst moment this week:Um, yesterday's visit to the doctor.
Movement: Yup. Plenty of it.
Belly Button in or out? Same as last week.
Wedding rings on or off? They're on still.
What I'm going to miss/What I can't wait for: Ready for all the heart issues to be fixed. Wish we could be done with doctors.
Weekly Wisdom:Take it one day at a time.
Milestones/Fun Moments: Getting the nursery put together and pretty much ready to bring a baby home.
What we need to do: Fix Baby's heart!
Don't forget, you can try to guess when Baby will be here... Click here to enter a guess in our baby pool.
Total weight gain/loss: No idea. The battery in my scale died, so I can't see if there was any change this week.
Stretch Marks: Nothing new
Sleep: Decent. Some crazy dreams the past couple of nights, which of course I don't remember.
Best moment this week: Did some shopping over the weekend and picked up a few clothes. Think I may have found the going home outfit.
Worst moment this week:Um, yesterday's visit to the doctor.
Movement: Yup. Plenty of it.
Belly Button in or out? Same as last week.
Wedding rings on or off? They're on still.
What I'm going to miss/What I can't wait for: Ready for all the heart issues to be fixed. Wish we could be done with doctors.
Weekly Wisdom:Take it one day at a time.
Milestones/Fun Moments: Getting the nursery put together and pretty much ready to bring a baby home.
What we need to do: Fix Baby's heart!
Don't forget, you can try to guess when Baby will be here... Click here to enter a guess in our baby pool.
Wednesday, September 8, 2010
Ugh
No lie. Today was a tough one. I tried going to work after the appointment and just seeing a friend brought me to tears. And a little while later Chris called and I could barely talk to him. So I went home, with a bit of crying in the car. Unfortunately my coping mechanism at the moment is to just want to ignore everyone. Not exactly all that practical. So why are things so bad?
Yesterday I got a call from Children's Hospital in Boston. They could schedule me for an ECHO today, or next week. Um, we'll take today, please. So we go in this morning. Ugh! 9:30 appointment, which meant we were sitting in rush hour traffic for 2 hours. Got there a little bit late. Finally get into the exam room around 10ish.
First one doctor takes a look, and then another one (the one we were scheduled to see) comes in and does his ECHO. Many times I was finding myself dozing off. This actually frequently happens for me- it's a dark room, you're lying on a bed. Plus it was hard to see anything because they only had the one monitor for them to see (at UMass they have a second monitor positioned so that the patient can watch what's going on). So not only were there the two of them, but then there was also someone who I presume was a student. And they were then all speaking in hushed mumble-y tones, not to mention they were speaking doctor-ese, so it was hard to know what was going on.
After they were done we go into another room to discuss the findings. At this point they also had a nurse join us. First they ask what we have been told from previous visits- what brought us to Children's. Then the doctor starts explaining the situation. To begin with, it's nothing new. Which is actually ok. Nice to know he was in agreement on the other findings.
- Tricuspid valve not working properly, causing the right ventricle to become enlarged
- Also an enlarged right atrium
- Small amount of blood going forward to pulmonary artery showing that there may not be an actual problem with the pulmonary valve (in earlier visits it was working fine- only on Tuesday did he notice it wasn't working, probably due to the enlarged ventricle and the messed up tricuspid valve)
- Left ventricle and right ventricle function mildly depressed. (this is a note from the nurse- I'm not entirely certain what this means. I know the doctor did mention that the left side also was not properly functioning.)
- Very concerning heart defect (in fact, he said that on a scale of mild, medium, severe our baby has a very severe heart defect)
- Baby may not survive pregnancy or delivery
I think we were more or less holding it together until that last one. What? Where did this come from? However, no mention of wanting to deliver early. The plan for now is to come back next week for another ECHO and an MRI. Also mentioned was that I should meet the NICU team, but that hasn't been scheduled yet. I'm also supposed to keep my BPP appointments at UMass. This doesn't quite make sense to me. Wouldn't they want me to just have everything done all in one place?
Chris and I both agree that we liked the old cardiologist better. He had a much better way of letting us know what was going on, but not freaking us out. However, maybe he didn't realize how bad things were. I don't know. We also agree that we liked the hand-holding that we got at UMass- they took care of all the scheduling, etc. I guess it helps that everything is in one place. With the current situation we're dealing with two different hospitals. Although luckily they are adjoining.
So what's the plan? Surgery is in Baby's future. The goal will be to repair the tricuspid valve and the pulmonary valve if needed. Depending on how those go, other surgical options may be needed. I'll deliver at Brigham & Women's with the baby being immediately transferred to Children's to go to the cardiac ICU. In fact, I believe the plan is to have some cardiac doctors on hand when I deliver. Although there is no way to know exactly how things will play out, we can expect Baby to have to spend about 4-6 weeks in the hospital.
Another thing that is interesting to note. Given the problems that they are seeing, they would usually see messed up circulation in other parts of the body, blood flowing the wrong way through the umbilical cord, etc. However, this isn't the case with our baby. That's all looking normal. He said he was very surprised by it.
Yesterday I got a call from Children's Hospital in Boston. They could schedule me for an ECHO today, or next week. Um, we'll take today, please. So we go in this morning. Ugh! 9:30 appointment, which meant we were sitting in rush hour traffic for 2 hours. Got there a little bit late. Finally get into the exam room around 10ish.
First one doctor takes a look, and then another one (the one we were scheduled to see) comes in and does his ECHO. Many times I was finding myself dozing off. This actually frequently happens for me- it's a dark room, you're lying on a bed. Plus it was hard to see anything because they only had the one monitor for them to see (at UMass they have a second monitor positioned so that the patient can watch what's going on). So not only were there the two of them, but then there was also someone who I presume was a student. And they were then all speaking in hushed mumble-y tones, not to mention they were speaking doctor-ese, so it was hard to know what was going on.
After they were done we go into another room to discuss the findings. At this point they also had a nurse join us. First they ask what we have been told from previous visits- what brought us to Children's. Then the doctor starts explaining the situation. To begin with, it's nothing new. Which is actually ok. Nice to know he was in agreement on the other findings.
- Tricuspid valve not working properly, causing the right ventricle to become enlarged
- Also an enlarged right atrium
- Small amount of blood going forward to pulmonary artery showing that there may not be an actual problem with the pulmonary valve (in earlier visits it was working fine- only on Tuesday did he notice it wasn't working, probably due to the enlarged ventricle and the messed up tricuspid valve)
- Left ventricle and right ventricle function mildly depressed. (this is a note from the nurse- I'm not entirely certain what this means. I know the doctor did mention that the left side also was not properly functioning.)
- Very concerning heart defect (in fact, he said that on a scale of mild, medium, severe our baby has a very severe heart defect)
- Baby may not survive pregnancy or delivery
I think we were more or less holding it together until that last one. What? Where did this come from? However, no mention of wanting to deliver early. The plan for now is to come back next week for another ECHO and an MRI. Also mentioned was that I should meet the NICU team, but that hasn't been scheduled yet. I'm also supposed to keep my BPP appointments at UMass. This doesn't quite make sense to me. Wouldn't they want me to just have everything done all in one place?
Chris and I both agree that we liked the old cardiologist better. He had a much better way of letting us know what was going on, but not freaking us out. However, maybe he didn't realize how bad things were. I don't know. We also agree that we liked the hand-holding that we got at UMass- they took care of all the scheduling, etc. I guess it helps that everything is in one place. With the current situation we're dealing with two different hospitals. Although luckily they are adjoining.
So what's the plan? Surgery is in Baby's future. The goal will be to repair the tricuspid valve and the pulmonary valve if needed. Depending on how those go, other surgical options may be needed. I'll deliver at Brigham & Women's with the baby being immediately transferred to Children's to go to the cardiac ICU. In fact, I believe the plan is to have some cardiac doctors on hand when I deliver. Although there is no way to know exactly how things will play out, we can expect Baby to have to spend about 4-6 weeks in the hospital.
Another thing that is interesting to note. Given the problems that they are seeing, they would usually see messed up circulation in other parts of the body, blood flowing the wrong way through the umbilical cord, etc. However, this isn't the case with our baby. That's all looking normal. He said he was very surprised by it.
Tuesday, September 7, 2010
Mini update
Today was the first of my twice weekly appointments. As annoying as I'm sure this will prove to be, in some ways I hope I have to go through with this for a while, as that means that Baby gets a chance to grow more before being born.
On Tuesdays and Fridays I am scheduled to have a BPP (Biophysical Profile) and on Tuesdays I also meet with the pediatric cardiologist for follow-up Fetal ECHOs. The goal is that with more frequent monitoring, they will be able to better decide what steps to take. Next week I am scheduled to meet with the High Risk OB team and the NICU doctors.
Luckily both Chris and I have very understanding bosses who are being very accommodating to our new schedules.
Having said all that, things have a way of changing.
So, based on today's findings, I am once again being transferred. It now looks like I will be delivering at Brigham & Women's, which has the benefit of having Children's right across the street. If I were to stay in Worcester, then the baby would more than likely have to be taken by ambulance to Boston, so it makes more sense for us to be there already with the more experienced team in place.
At this point I don't really know what this will mean in terms of appointment schedules. Everything mentioned above is what was in place at UMass. I assume it will continue to be twice a week. I'm awaiting a call with more details.
On Tuesdays and Fridays I am scheduled to have a BPP (Biophysical Profile) and on Tuesdays I also meet with the pediatric cardiologist for follow-up Fetal ECHOs. The goal is that with more frequent monitoring, they will be able to better decide what steps to take. Next week I am scheduled to meet with the High Risk OB team and the NICU doctors.
Luckily both Chris and I have very understanding bosses who are being very accommodating to our new schedules.
Having said all that, things have a way of changing.
- We've been following the degree of baby's tricuspid regurgitation and the effects it has had on the overall circulation. Today the overall heart function still appears to be good, althuogh there is still a severe degree of TR.
- There is enough TR that now the right ventricle is having difficulty opening the pulmonary valve. This means that the blood going out to the lungs has to flow from the aorta to the ductus arrteriosus and then unto the pulmonary arteries.
- This means that after birth, the baby will need a medicine called prostaglandin E (akak "prostin") to keep the ductus arteriosus open.
- It is possible that the baby could require a surgery to create a stable source of pulmonary blood flow. This is called a modifies Blalck-Taussig sunt (BT shunt), and it is very much like an artificial ductus arteriosus that does not require Prostin.
- I think the goal will be to get the baby to an adequate weight to try and repair the tricuspid valve. The possibility exists that for technical reasons this may be impossible. If this is the case, the baby may need a few surgical procedures over the first few years of life to re-route blood to the lungs.
So, based on today's findings, I am once again being transferred. It now looks like I will be delivering at Brigham & Women's, which has the benefit of having Children's right across the street. If I were to stay in Worcester, then the baby would more than likely have to be taken by ambulance to Boston, so it makes more sense for us to be there already with the more experienced team in place.
At this point I don't really know what this will mean in terms of appointment schedules. Everything mentioned above is what was in place at UMass. I assume it will continue to be twice a week. I'm awaiting a call with more details.
Thursday, September 2, 2010
31 Weeks
Your baby now weighs as much as four navel oranges. (Length: over 16 inches, head to heel.)
31 Weeks- Development
Your Baby This Coming Week
Your baby's total length is 18.9 inches (42cm) and she is perfectly formed! She measures about 11.6 inches (29cm) from crown to rump. All she has to do is fill out more. Your baby weighs almost 4 pounds (1800g). If she were to be born now, she would still need to be incubated as she has insufficient fat stores to keep it warm.
Your baby can distinguish between light and dark.
Your baby can hear the outside world quite well now, and can also hear the sounds of your heartbeat, your digestion and the blood rushing in the umbilical cord. The pitch of women's voices are in the range babies are most able to hear over all the internal background noise. Your baby is already familiar with your voice and will be able to recognize it after birth.
Your Body This Coming Week
Your uterus now extends to about 5 inches (12cm) above your belly button. You probably continue to feel tired and may sometimes feel dizzy. You feel your baby's kicking regularly. Your baby is probably in the head down position by now and is long enough that his legs can reach your ribs. The pressure of your baby's legs can make your ribcage sore. Taking care to sit or stand straight may alleviate this discomfort somewhat. You may feel short of breath, have heartburn, round ligament pain, a stuffy nose and other pregnancy symptoms. Your pelvic joints may have expanded for the birth and this may cause some discomfort. You may feel a desire to "nest" which may make you want to bake, clean and get things in order around your home.
31 Week Journal
How far along? 31 weeks
Total weight gain/loss: Up 2 more pounds. If things continue at this rate, I'll be huge!
Stretch Marks: No change.
Sleep: Decent. The warm weather returned, which of course makes it a bit more uncomfortable.
Best moment this week: As uncomfortable as they sometimes can be, I like feeling the extra jabs as Baby moves around.
Worst moment this week: Well, if you've read last night's post, you'll know how the week ended. Other than that news, it's been a pretty good week.
Movement: Remember the pressure that I was commenting on last week? Well it has now sometimes morphed into a game of "guess what body part that is". Normally I can't really tell, but there is a difference between hands/feet and head/butt.
Belly Button in or out? I think I'm officially going to say that it's flat now. With maybe a tiny little bit being an outie.
Wedding rings on or off? On.
What I'm going to miss/What I can't wait for: Eager to meet Baby, but also a bit anxious and certainly willing to wait as long as necessary.
Weekly Wisdom: Try not to stress about things that are out of your control.
Milestones/Fun Moments: Got to see Baby again- just hate the circumstances.
What we need to do: The nursery is now all freshly painted and things are more or less back in place. We still need to paint the doors and the dresser, but at least we can move around a little better. Otherwise I feel like we're in a pretty good place. Need to get the carseat, I could use some more cloth dipes, but otherwise more or less all set. Oh, and a breast pump.
And now for a game... Click here to enter a guess in our baby pool.
Total weight gain/loss: Up 2 more pounds. If things continue at this rate, I'll be huge!
Stretch Marks: No change.
Sleep: Decent. The warm weather returned, which of course makes it a bit more uncomfortable.
Best moment this week: As uncomfortable as they sometimes can be, I like feeling the extra jabs as Baby moves around.
Worst moment this week: Well, if you've read last night's post, you'll know how the week ended. Other than that news, it's been a pretty good week.
Movement: Remember the pressure that I was commenting on last week? Well it has now sometimes morphed into a game of "guess what body part that is". Normally I can't really tell, but there is a difference between hands/feet and head/butt.
Belly Button in or out? I think I'm officially going to say that it's flat now. With maybe a tiny little bit being an outie.
Wedding rings on or off? On.
What I'm going to miss/What I can't wait for: Eager to meet Baby, but also a bit anxious and certainly willing to wait as long as necessary.
Weekly Wisdom: Try not to stress about things that are out of your control.
Milestones/Fun Moments: Got to see Baby again- just hate the circumstances.
What we need to do: The nursery is now all freshly painted and things are more or less back in place. We still need to paint the doors and the dresser, but at least we can move around a little better. Otherwise I feel like we're in a pretty good place. Need to get the carseat, I could use some more cloth dipes, but otherwise more or less all set. Oh, and a breast pump.
And now for a game... Click here to enter a guess in our baby pool.
Wednesday, September 1, 2010
Triscuspid Regurgitation, and what it means for our baby
So this is a diagram of a heart that the doctor drew for us. (If you click on it, you'll be able to see it larger.) He is a pediatric cardiologist who also specializes in prenatal heart development. What this shows is a view of the heart, as if you are facing the baby, so the right side of the heart is actually shown on the left. The arrows show blood flow. He also wrote out a bunch of info for us, which is rather helpful as it helps us to remember what was said. So, here are his notes.
Tricuspid Regurgitation (TR)
- leakiness of the main valve on the right side of the heart
- Your baby's TR has gotten worse over time. It appears that one leaflet does not move normally, causing the leaflets to not close normally --> this leads to valve leakiness.
- The TR is causing the right side of the heart to stretch out. This has become significant enough that the heart is competing with the developing lungs for space in the chest.
- For now, the blood flow patterns in the various arteries and veins in the body appear normal. This might change if the TR gets worse. We know that changes in the blood flow patterns can herald fetal distress and may be an indication to deliver the child early.
- Any decision to deliver the infant needs to be thought through carefully. Delivering an infant prematurely has the main downside of having immature lungs- this is complicated by the fact that the lungs appear to be squeezed by the dilated heart. We will be able to do things for the child, however, that we would not be able to otherwise.
- Risks of keeping the baby in mom longer include: (1) worsening of the TR to the point that the pulmonary valve fails to open (the right ventricle can't guarantee enough pressure to open the valve). This could cause the infant to be critically ill at birth. (2) congestive heart failure- the blood "backs up" in the right side to the point that it interferes with normal circulation, resulting in fluid accumulating and the potentially damaging side-effects (this is called "hydrops"). (3) if the heart continues to dilate, it will continue to compress the lungs, interfering with normal development.
I have arranged for you to meet with several other doctors to take a team approach to this problem. We will keep in close contact and monitor the baby carefully.
Another thing to note, is that in fetal development, the right side of the heart does about 2/3 of the work, while after delivery it does 1/2 the work. However, due to the various issues, the right side is currently doing more than 2/3 the work.
The other appointments he mentions haven't been set up yet (we were there at the end of the day) but it looks like I'll be going in twice a week for various tests- once a week with him, and other visits with other people. Also, I was planning to deliver at a different hospital, but this one has a better NICU, so I will be transferring my care to a doctor at this hospital.
And as to when we'll be meeting Baby Bredford? Well, in a perfect world, the heart problems don't worsen, the lungs develop enough, and I go to 37 weeks. But of course we don't live in a perfect world. So Baby will be here at some point in the next 6 weeks. By going in twice a week they'll be able to keep a close eye on things and determine if Baby will be better cooking longer or coming out, knowing that he/she isn't fully developed.
Subscribe to:
Posts (Atom)
