On Monday, my OB confirmed I tested positive for gestational diabetes. I didn't have this condition with my first pregnancy so this was a big shock to me! But now thinking back last month, I don't think my gestational health stood a chance. I had unhealthy eating habits due to 4 back-to-back November birthdays in my immediate family, Halloween candy is still in great supply at our house, and of course Thanksgiving to top it all off. I know… excuses, excuses, right? I should have been smarter. Now I am paying the price and must greatly change my diet for the remainder of my pregnancy... monitor all my food intake and do a finger pricking test daily to ensure my blood sugar levels stay low. I am sure I will be just fine and am ready to take on these new challenges. :)
Additionally during my OB visit on Monday, my doc asked how my kick counting was going. I told her I haven’t really done this yet and believe that Samuel’s kicks are still so light and erratic that it would be hard to know if there is something wrong. She replied back, “you absolutely need to start and if you don’t see 10 kicks in a 1 hour (active) period, I need to go to the Mary Birch Triage center immediately to get my baby checked out.” I left that visit feeling a bit frustrated and thought to myself… I guess I will be going to that Triage a lot for a bunch of false alarms.
I started counting kicks that same night (Monday). This was probably the first time I paid special attention to them and actually made myself sit down after dinner (or) while I did Luke’s bath and consciously counted Samuel’s kicks. To my surprise, the 10 kicks/moves/rolls are there for the past 2 days and even before the hour was up! When I compare this to my last pregnancy- yes, Samuel is a little less active than Luke, but he’s still there fighting so hard to remind me he is still OK! I also didn’t have to keep up with a VERY active 2 year old when I had to count kicks with Luke in my tummy. I do feel so much more relieved now that all is how it should be at least at the present time.
Wednesday, December 2, 2009
Saturday, November 21, 2009
Blessed with New Support
Some great things happened to us this week and we couldn’t be more thankful. God has been good to us with giving us just what we need at the right time and not a minute too soon!
I met with our new OB/Perinatologist at Sharp Mary Birch earlier this week, the doctor who will deliver our beautiful Samuel. She is considered a high risk doctor and has dealt with many other cases like ours. The entire 2 hour office visit was so efficient, yet comfortable. First, I had another ultrasound done to establish a baseline for Samuel’s conditions at this doctor’s office. This sonographer was just as amazing as the one at Scripps and talked me through all the screen captures… although I am now starting to feel like an expert ‘ultrasound viewer’ in my own right due to all the ultrasounds we have had done in the past 11 weeks. She handed me pictures of Samuel at the end and I hadn’t even asked for them! I quickly was moved into another room where a nurse practitioner examined me. My new OB came in immediately after. Her tone was so warm and comforting. I felt like she was a mother figure in some weird way. She explained how our follow-up visits will go for the remainder of my pregnancy and discussed the possibility for induction when I am full term to guarantee she would be the delivering OB.
Yesterday we met with a San Diego Children’s Hospice Team consisting of a Social Worker, a Spiritual Counselor and a Nurse. These three women have been specifically assigned to our family to provide aid during the remaining term of the pregnancy, the birth itself and post-term (for as long as we have with little Samuel). We have the option to use them as much or as little as we need them for things like: creating a birth plan and ensuring it is upheld, facilitating communications with the hospital, obtaining any resources we need, and providing quality and comfort care to our son either at an in-patient care facility (like a nice hotel with 24/7 medical care) -or- directly at our home if Samuel is more stabilized. During the 1 hour visit, each one spoke with great compassion addressing their role in the process. We also found out they are all believers in the faith! We prayed together at the end of the visit and will be seeing them again in a few weeks.
Here are some of the latest ultrasound pictures captured of our sweet Samuel:
Umbilical cord in front of Samuel's face
Profile
Hand in front of Samuel's face
I met with our new OB/Perinatologist at Sharp Mary Birch earlier this week, the doctor who will deliver our beautiful Samuel. She is considered a high risk doctor and has dealt with many other cases like ours. The entire 2 hour office visit was so efficient, yet comfortable. First, I had another ultrasound done to establish a baseline for Samuel’s conditions at this doctor’s office. This sonographer was just as amazing as the one at Scripps and talked me through all the screen captures… although I am now starting to feel like an expert ‘ultrasound viewer’ in my own right due to all the ultrasounds we have had done in the past 11 weeks. She handed me pictures of Samuel at the end and I hadn’t even asked for them! I quickly was moved into another room where a nurse practitioner examined me. My new OB came in immediately after. Her tone was so warm and comforting. I felt like she was a mother figure in some weird way. She explained how our follow-up visits will go for the remainder of my pregnancy and discussed the possibility for induction when I am full term to guarantee she would be the delivering OB.
Yesterday we met with a San Diego Children’s Hospice Team consisting of a Social Worker, a Spiritual Counselor and a Nurse. These three women have been specifically assigned to our family to provide aid during the remaining term of the pregnancy, the birth itself and post-term (for as long as we have with little Samuel). We have the option to use them as much or as little as we need them for things like: creating a birth plan and ensuring it is upheld, facilitating communications with the hospital, obtaining any resources we need, and providing quality and comfort care to our son either at an in-patient care facility (like a nice hotel with 24/7 medical care) -or- directly at our home if Samuel is more stabilized. During the 1 hour visit, each one spoke with great compassion addressing their role in the process. We also found out they are all believers in the faith! We prayed together at the end of the visit and will be seeing them again in a few weeks.
Here are some of the latest ultrasound pictures captured of our sweet Samuel:
Umbilical cord in front of Samuel's face
Profile
Hand in front of Samuel's face
Thursday, November 12, 2009
Heart Defect Confirmed
We are now 27 weeks along in the pregnancy. We met with the sonographer and a pediatric cardiologist this week. They looked at Samuel’s heart in great depth and listened to the heart’s sound waves. They ruled out ASD or VSD pretty quickly which is one of the more common heart defects in Trisomy13/18. ASD or VSD was suggested by our last perinatologist but it was never concluded. Something different was discovered and is considered only a minor heart defect. The right side of the heart is more ‘generous’ than the left side. On this larger right side, there is a tricuspid valve prolapse -or- in laymen’s terms, there is a regurgitation of blood from the lower chamber back into the upper chamber. The blood is supposed to be pushed down and stay down, but this is not happening. There is no way of knowing at this point if this heart defect could be of any real danger to him. Additional examination will be needed after he is born.
We have our first appointment at Sharp Mary Birch next week. I am looking forward to meeting our new OB who will deliver little Samuel.
Also, we have a new picture to share! Our other son turned 2 years old this week and during the photography shoot we asked to have some pregnancy photos done. Here is our favorite!
We have our first appointment at Sharp Mary Birch next week. I am looking forward to meeting our new OB who will deliver little Samuel.
Also, we have a new picture to share! Our other son turned 2 years old this week and during the photography shoot we asked to have some pregnancy photos done. Here is our favorite!
Thursday, November 5, 2009
Plans Are Beginning to Take Shape
I am happy to report that this week’s doctor’s visits were both very positive!
We went to our 26-week ultrasound on Tuesday. The sonographer talked us through the entire scan, unlike my last two ultrasound visits at UCSD.
My two largest concerns I addressed with her were: 1) low amniotic fluid 2) growth of the cyst found on the umbilical cord. She educated me that the amniotic fluid was perfectly normal and the cyst growth is still inconclusive while we still do not know if there is any real danger to Samuel yet. Even though the cyst is quite large (8cm x 5cm in one angle), there are more things to consider such as number of cysts within the cyst and exact angle the baseline cyst measurements were taken at UCSD. Two new things that were discovered 1) a possible absence of a stomach 2) a possible a greater complication to the heart than what was reported at UCSD.
She is recommending a follow-up visit at the UCSD Hilcrest facility where we will now finally perform a fetal cardio echo exam to check Samuel’s heart. She works at this facility too and will do the evaluation for us next week!
The sonographer took great interest and compassion to our situation. We asked for one picture of Samuel and she printed ten! We discussed with her the possible ‘scenarios’ that could take place at Samuel’s birth and our feelings about when we would want to take corrective action to fix our precious Samuel and when we would not. We also told her we would like to deliver at a hospital that is capable to medically care for our son if we chose to take this route at the time of his birth. We do NOT want to be in a position to have to transport our son to another hospital while I am still recovering myself.
The following day we had a general check-up with my OB. I prepared myself to go over these ‘scenarios’ and build my case for the hospital I would like to deliver. Recap- at my last OB visit, she stated that she wanted me to deliver at Scripps which doesn’t have the neonatal staff or surgeons to care for a baby like little Samuel. When she finally came into the room to perform our standard biweekly check-up, she immediately gave me a big hug and told me I was so brave. To my surprise, she started the discussion stating “I am going to recommend you deliver at a different hospital because of the nature of your son’s complications”. What?? I didn’t have to say anything or plea my case to her. Before I knew it she was writing the name of a perinatologist/OB referral over at Mary Birch Sharp hospital and handed me the order for the cardio echo exam to take place next week. This cardio exam couldn’t be done without her blessing. Had the sonographer talked to my OB about our feelings on both of these things? I may never know…
We are so happy that things are starting to come together for us regarding at least a few of these really big and difficult decisions. Thank you to all who are following our blog and praying for us! Your prayers are already paying off greatly and we are feeling much stronger now with what lies ahead of us.
We went to our 26-week ultrasound on Tuesday. The sonographer talked us through the entire scan, unlike my last two ultrasound visits at UCSD.
My two largest concerns I addressed with her were: 1) low amniotic fluid 2) growth of the cyst found on the umbilical cord. She educated me that the amniotic fluid was perfectly normal and the cyst growth is still inconclusive while we still do not know if there is any real danger to Samuel yet. Even though the cyst is quite large (8cm x 5cm in one angle), there are more things to consider such as number of cysts within the cyst and exact angle the baseline cyst measurements were taken at UCSD. Two new things that were discovered 1) a possible absence of a stomach 2) a possible a greater complication to the heart than what was reported at UCSD.
She is recommending a follow-up visit at the UCSD Hilcrest facility where we will now finally perform a fetal cardio echo exam to check Samuel’s heart. She works at this facility too and will do the evaluation for us next week!
The sonographer took great interest and compassion to our situation. We asked for one picture of Samuel and she printed ten! We discussed with her the possible ‘scenarios’ that could take place at Samuel’s birth and our feelings about when we would want to take corrective action to fix our precious Samuel and when we would not. We also told her we would like to deliver at a hospital that is capable to medically care for our son if we chose to take this route at the time of his birth. We do NOT want to be in a position to have to transport our son to another hospital while I am still recovering myself.
The following day we had a general check-up with my OB. I prepared myself to go over these ‘scenarios’ and build my case for the hospital I would like to deliver. Recap- at my last OB visit, she stated that she wanted me to deliver at Scripps which doesn’t have the neonatal staff or surgeons to care for a baby like little Samuel. When she finally came into the room to perform our standard biweekly check-up, she immediately gave me a big hug and told me I was so brave. To my surprise, she started the discussion stating “I am going to recommend you deliver at a different hospital because of the nature of your son’s complications”. What?? I didn’t have to say anything or plea my case to her. Before I knew it she was writing the name of a perinatologist/OB referral over at Mary Birch Sharp hospital and handed me the order for the cardio echo exam to take place next week. This cardio exam couldn’t be done without her blessing. Had the sonographer talked to my OB about our feelings on both of these things? I may never know…
We are so happy that things are starting to come together for us regarding at least a few of these really big and difficult decisions. Thank you to all who are following our blog and praying for us! Your prayers are already paying off greatly and we are feeling much stronger now with what lies ahead of us.
Saturday, October 24, 2009
Viability
I consider this week a major milestone for little Samuel. It is week 24 and is the first week in the pregnancy for “viability” as my OB points out, meaning it is the earliest recorded week a baby can be born and actually live outside the womb! Of course, this possibility more than likely applies to normal, healthy babies. It is still reassuring to know this fact just in case I was to go into preterm labor at any point.
I also believe because of this “viability” factor, it is probably the same reason why most states will not allow abortions after week 24. I didn’t know this time table until recently (week 18 when Samuel was diagnosed). The doctors have made Dan and I very much aware, and several times. Initially, we felt they were pushing us in that direction, but the moment we took the firm stance and said there is no possibility, they all eased up. My OB has even asked me if I chose a name. When I told her it was Samuel she said it she loved it and it was absolutely perfect. She has referred to him on several occasions as my “dear sweet boy”. I sense she does have compassion in her heart for our situation and I do feel much more comfortable now talking to her.
Dan and I decided our next steps are to determine the hospital we will deliver. We have a set of questions and scenarios we want to run by our OB then make the decision. We also want to speak to a neonatologist about some of Samuel’s complications, namely the major one so far found- his meningomyelocele or neural tube defect located around his sacrum / lower portion of his spinal cord.
On a separate and happy note, Dan was finally able to feel Samuel kick for the first time! It took place sometime last week. He was so happy to finally have the opportunity to feel our baby’s movements. The frequency of little Samuel’s movements have been still erratic and a lot of them are still very soft. But I have no doubt that as he grows bigger, his dad will have many more opportunities!
I also believe because of this “viability” factor, it is probably the same reason why most states will not allow abortions after week 24. I didn’t know this time table until recently (week 18 when Samuel was diagnosed). The doctors have made Dan and I very much aware, and several times. Initially, we felt they were pushing us in that direction, but the moment we took the firm stance and said there is no possibility, they all eased up. My OB has even asked me if I chose a name. When I told her it was Samuel she said it she loved it and it was absolutely perfect. She has referred to him on several occasions as my “dear sweet boy”. I sense she does have compassion in her heart for our situation and I do feel much more comfortable now talking to her.
Dan and I decided our next steps are to determine the hospital we will deliver. We have a set of questions and scenarios we want to run by our OB then make the decision. We also want to speak to a neonatologist about some of Samuel’s complications, namely the major one so far found- his meningomyelocele or neural tube defect located around his sacrum / lower portion of his spinal cord.
On a separate and happy note, Dan was finally able to feel Samuel kick for the first time! It took place sometime last week. He was so happy to finally have the opportunity to feel our baby’s movements. The frequency of little Samuel’s movements have been still erratic and a lot of them are still very soft. But I have no doubt that as he grows bigger, his dad will have many more opportunities!
Wednesday, October 14, 2009
Struggling with Upcoming Decisions
Today I have been given even more information to consider, some from my OB and some from a Christian lady (friend of a friend) who had a baby with Trisomy 13 almost 10 years ago who lives right here in San Diego.
At my OB visit today, no problems were found with the baby or my own health. However, certain recommendations my OB gave me only several weeks ago have been now overridden because of reasons given to her by the UCSD Genetic Specialist (the one with the poor bedside manner I mentioned in my past post). Originally, my OB recommended me to deliver at a specialized hospital with a level 3 neonatal intensive care unit (NICU). Today, she says I should deliver at Scripps which only has a level 2 neonatal unit which isn’t really prepared to care for a baby with Samuel’s condition. She also acknowledged the UCSD doctor’s recommendation to not wear a fetal heart monitor or do more follow up exams on Samuel’s heart. But I did sense that if I wanted to push things to go back to the original plan, we could. I left the visit today feeling somewhat angry and more confused than ever.
Tonight my husband and I decided to make a phone call to a woman we learned had a baby girl with Trisomy 13 almost 10 years ago and talk to her about her general experience with doctors and labor & delivery decisions their family made. We got the referral from Dan’s sister Shiela and had a good feeling she would give us some well needed perspective from a Christian standpoint on some of these big upcoming decisions we are about to face. In summary, she left everything in God’s hands and had a remarkable testimony of faith. Her and her husband chose not to take any heroic, aggressive means (surgery-wise) and let God’s will be done however it was to play out. It was also their hope their daughter would be born alive and they were fortunate to have this happen! Their little girl survived longer than any other Trisomy 13 case in that hospital and went home with the family 1 week later. She lived for 7.5 weeks (much longer than the median age) and finally went home to Jesus. Her story left me feeling hopeful again. I was able to remember again that I am not in control (this has been a huge struggle for me) and that alone is giving me back the peace I need to allow the remaining of my pregnancy to take place as it should and not be so worked up over every little minor detail of Samuel’s condition. In some ways (I told my husband this tonight) I feel like I am my own worst enemy. I have a constant battle in my head wanting to know every single little detail, researching the severity, wanting to know all my options, wanting to do the right thing…. yet there is no peace about any of this! I seem to be making myself stir crazy when all I probably need is a lot of prayer and ability to focus that everything will be just as it should in God’s timing.
At my OB visit today, no problems were found with the baby or my own health. However, certain recommendations my OB gave me only several weeks ago have been now overridden because of reasons given to her by the UCSD Genetic Specialist (the one with the poor bedside manner I mentioned in my past post). Originally, my OB recommended me to deliver at a specialized hospital with a level 3 neonatal intensive care unit (NICU). Today, she says I should deliver at Scripps which only has a level 2 neonatal unit which isn’t really prepared to care for a baby with Samuel’s condition. She also acknowledged the UCSD doctor’s recommendation to not wear a fetal heart monitor or do more follow up exams on Samuel’s heart. But I did sense that if I wanted to push things to go back to the original plan, we could. I left the visit today feeling somewhat angry and more confused than ever.
Tonight my husband and I decided to make a phone call to a woman we learned had a baby girl with Trisomy 13 almost 10 years ago and talk to her about her general experience with doctors and labor & delivery decisions their family made. We got the referral from Dan’s sister Shiela and had a good feeling she would give us some well needed perspective from a Christian standpoint on some of these big upcoming decisions we are about to face. In summary, she left everything in God’s hands and had a remarkable testimony of faith. Her and her husband chose not to take any heroic, aggressive means (surgery-wise) and let God’s will be done however it was to play out. It was also their hope their daughter would be born alive and they were fortunate to have this happen! Their little girl survived longer than any other Trisomy 13 case in that hospital and went home with the family 1 week later. She lived for 7.5 weeks (much longer than the median age) and finally went home to Jesus. Her story left me feeling hopeful again. I was able to remember again that I am not in control (this has been a huge struggle for me) and that alone is giving me back the peace I need to allow the remaining of my pregnancy to take place as it should and not be so worked up over every little minor detail of Samuel’s condition. In some ways (I told my husband this tonight) I feel like I am my own worst enemy. I have a constant battle in my head wanting to know every single little detail, researching the severity, wanting to know all my options, wanting to do the right thing…. yet there is no peace about any of this! I seem to be making myself stir crazy when all I probably need is a lot of prayer and ability to focus that everything will be just as it should in God’s timing.
Wednesday, October 7, 2009
22-Week Ultrasound Follow-up
Today we had another ultrasound with the UCSD Genetic Specialist so we could check the status of Samuel's internal organs. It took about 45 minutes and this visit was definitely not as uncomfortable as the last one. Both Dan and I were much more at ease now that we have digested the information of his condition over the past 4 weeks, but there is still not a day that goes by that we don’t hope and pray for some tiny, perfect miracle to transpire that can fix our little boy. Today’s findings in the ultrasound were similar to what was found 4 weeks ago. His heart is still strong but there may be an AV canal defect or a hole in his heart (still not conclusive), his kidneys and bladder are still enlarged and his neural tube defect is still pretty extreme but not life threatening. Samuel seems to have stabilized for the most part but his growth seems to be slowing. 4 weeks ago he was about 2 weeks smaller than his real gestational age. Today, he is almost 3 weeks smaller then his real gestational age. They determine this by taking measurements of the cranium, humerus and femur. From my research, this is pretty common for Trisomy 13 babies.
The biggest thing that came out of today’s session was our follow-up discussion with the doctor. Of course, she was very frank about his grim chance for survival. But the shocker for me occurred after I asked when we'd have another follow-up visit to verify his true heart condition or severity of his other organs. Her response, “No more follow-ups are recommended at this point because we essentially know the outcome of his life and what would truly be the point?” Not the best bed-side manner I felt. She said if having follow-up visits and further in-depth ultrasound scans would put our minds at ease then we could continue, but it would not based on the doctor's recommendation. I was shocked because I thought doctors would be all over this type of thing, wanting to watch him closely week by week since he is so high risk to pass at any time, but it’s quite the contrary! This hit me pretty hard. She did recommend follow-up visits to monitor my health (there is a risk I may develop preclampsia) and to check Samuel’s heart beat every two weeks. And now its seems the rest of my pregnancy becomes a waiting game and it is not sitting right with me.
Next week I will have another check-up with my regular OB and I have decided to talk to her about my options. I think I will ask for more ultrasounds of my sweet Samuel since there are so few chances I have to see him. I have always looked forward to these types of check-ups in the past and just because we now know he has a chromosomal defect does not change my longing to see him and know his current condition.
Another major discussion topic that came out of today's session was the doctors recommendation to not monitor the baby if/when I go into labor. Basically, if there are any complications during labor and the baby goes into fetal distress, we would let nature take its course and not put me through an emergency C-section. I hadn't even consider this. It really was too much for us to think about at that moment and we are not anywhere close to making this decision yet. I thought monitoring the baby for any labor was such a typical thing but I learned today it is definitely a mother's and father's choice.
The biggest thing that came out of today’s session was our follow-up discussion with the doctor. Of course, she was very frank about his grim chance for survival. But the shocker for me occurred after I asked when we'd have another follow-up visit to verify his true heart condition or severity of his other organs. Her response, “No more follow-ups are recommended at this point because we essentially know the outcome of his life and what would truly be the point?” Not the best bed-side manner I felt. She said if having follow-up visits and further in-depth ultrasound scans would put our minds at ease then we could continue, but it would not based on the doctor's recommendation. I was shocked because I thought doctors would be all over this type of thing, wanting to watch him closely week by week since he is so high risk to pass at any time, but it’s quite the contrary! This hit me pretty hard. She did recommend follow-up visits to monitor my health (there is a risk I may develop preclampsia) and to check Samuel’s heart beat every two weeks. And now its seems the rest of my pregnancy becomes a waiting game and it is not sitting right with me.
Next week I will have another check-up with my regular OB and I have decided to talk to her about my options. I think I will ask for more ultrasounds of my sweet Samuel since there are so few chances I have to see him. I have always looked forward to these types of check-ups in the past and just because we now know he has a chromosomal defect does not change my longing to see him and know his current condition.
Another major discussion topic that came out of today's session was the doctors recommendation to not monitor the baby if/when I go into labor. Basically, if there are any complications during labor and the baby goes into fetal distress, we would let nature take its course and not put me through an emergency C-section. I hadn't even consider this. It really was too much for us to think about at that moment and we are not anywhere close to making this decision yet. I thought monitoring the baby for any labor was such a typical thing but I learned today it is definitely a mother's and father's choice.
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