Up until now Josi has made all the Jacobs blog posts with some of my interjection and minor edits, but truly the words and feelings were for the most part hers. I'd like to try and convey some of my thoughts and feelings through this pregnancy and the heartfelt and truly emotional rollercoaster I've faced too. Josi's words are a true joy to read and I so look forward to reading her posts as her sweet personality and heartfelt feelings offer encouragement and warmth to me. It is a tribute to her love and strength as a wife and mother.
I've thought of writing my own post in the past but each time I actually thought about what to write, my mind raced in different directions and emotions welled up to the point of frustration and I gave up. I'm trying to overcome that and share what is on my heart though words cannot convey it seems what I'm truly experiencing and feeling.
Earlier in the pregnancy before we knew anything about Samuel's problems I fed off Josi's happy emotions as I got daily updates on what was happening with her and the baby. I looked forward to her daily reports of how she felt and how she thought the baby was progressing.
Once news from the tests started revealing "potential" issues (week 12's tests), I kept reassuring her (and myself) that everything was going to be fine and I truly thought so. I deal with things differently than Josi does - until I have the information, I don't deal with the whatifs until it's time to do so. Once receiving the news that our son has Trisomy 13 I was simply in shock. This lasted for a while and I have to admit it was hard to be strong for my family; all I wanted to do was crawl into a small hole and stay there and not have to deal with this! How could this have happened to us and our family? Why could this have happened to us and our family? I quickly found out that this occurrence is totally "random" from a medical perspective but I couldn't help but think of "everything happens for a reason". Which means I and my family have to endure this series of experiences. Earlier the medical professionals recommended terminating the pregnancy but our beliefs and our conscious simply would not allow that to happen. I have to admit this isn't easy (but I hate to think of the alternative guilt and repercussions that aborting Samuel would bring) when I take a few moments in my mind to fast forward the next few months it seems that I deal with the grief and likelihood that our son is going to die - just the fact is horrifying and this continues again the next time I play things out in my mind and the grief sets in. In the fast pace of life this catches me a bit by surprise and when it does, it cuts like a knife straight through to my heart and it makes me stop in my tracks. Inside it seems I die a little bit and it happens over and over again. At times I wish the grief could come once already and then be done with, but I realize that is not going to happen and that is not my plight right now and I will stay the course until it's time to do so.
I would consider it a privilege and honor to be able to meet my son Samuel for a first time (as it is and was for my so beloved son Luke) and experience the love and bond only parents can know. To share the event with Josi and Luke would truly be a blessing even if short lived and with sorrow. If this could happen it would be such a blessing if even for a very short while.
If Samuel's time is destined to be short and I cannot meet my son, I will take my refuge in God's reply to Paul in 2 Corinthians 12:9 '... "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me.' and the assurance I know Samuel is in a much better place (Matthew 19:1 'v14Jesus said, "Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these."')
Finally, when I slow down from every day life and reflect upon what matters in this world and consider God's great gift to us: Ultimate Love through his son Jesus and is echoed in many ways (e.g. loved ones, family, spouses). Understanding that love is not a feeling we get to experience that makes us feel good inside but in truth is actually dedication to serve others. To "love someone" means to truly commit to serve them. The joy of serving them generates the wonderful feelings but are "byproducts" we get to experience. This is hard work, but the results are tremendous and incredible and only a glimpse of God's love for us. The world tie us up in the hustle and bustle of getting ahead and personal gain but this promise of self gain is actually self defeating and leaves us empty. I am thankful for the love of my family and extended family and friends. I am so very thankful for my beautiful, compassionate wife. Her strength is a true blessing and inspiration and I'm so very thankful for her and her committment to me and my family. I'm so very thankful for Luke. If we did not have Luke already this experience would seem unbearable. He is a joy and a light to us during these times. I'm also thankful for Samuel. Even though it seems a tragedy for his condition, this is an experience that God has for me to endure. I will be thankful and try to glean what it is I'm supposed to glean from all of this. Most of all I'm thankful for God's promise in that He does not forget his children and takes care of them all.
Tuesday, December 15, 2009
Monday, December 14, 2009
Diet Update + Birth Plan Preparation
Adjusting to the new and healthier diet catered to lowering my blood sugar + testing my blood has not been without its complications last week. Menu planning for the week is now all protein and vegetable focused. This has been so hard for me since I love carbs and sweets (in the evenings). It’s getting easier though. I am finding new recipes and things to keep me sustained without having those uncontrollable urges. I also had some issues with my blood testing last week that caused my numbers to be a lot higher (over 150) than what should be expected with my condition. I left the cap off on my test strips one night which is a big no-no! This contaminated the whole container of 25 very expensive test strips, the same ones I used last week with all the number spikes. I also did not know I had to wash my hands every time prior to blood testing. Hand sanitizer and lotion on my hands can impact the test scores I get too. It’s all been trial and error so far and I have learned so much. This weeks numbers are much better so far thanks to the adjustment to my diet and all the new blood testing education I received last Friday from a Diabetic RN. Later this week I meet with a Diabetic RD for more education on diet.
Dan and I had our second visit with SD Hospice last Thursday to start developing our birth plan. We got through the first part of the birth plan fairly easily (who we want in the delivery room, non-continuous fetal heart monitoring, natural labor with no drugs)… but then had a really hard time what to specify after Samuel’s birth because there are still so many variables. I know so well from my last experience with having Luke that everything can change in the blink of an eye. Our last birth plan basically went right out the window when we discovered Luke had some complications a couple hours after his birth that needed tending to immediately. (he had an infection in his blood and just needed more hydration and antibiotics for ~28 hours then was fine to take home)
Our Hospice support team has been so incredible. They offer up so much information and resources we never considered. For instance, we originally planned to go on a public tour of the hospital this week so we can get a feel for the hospital layout, see the delivery and post-partum rooms, ask questions, etc. Hospice recommended to us and is now working with Mary Birch to set up our own private tour. This will give us the ability to ask specific questions to our situation, questions we wouldn’t have been comfortable asking on a public tour. We also consented for Hospice to work with ‘Now I Lay Me Down to Sleep’ foundation which is an organization that will come out and do free photography of our Samuel after he is born. See their work on You Tube: http://www.youtube.com/watch?v=-QJF0Cs4f9s This is a very emotional slide show but so beautifully done. I can’t watch it without completely losing it still.
Dan and I had our second visit with SD Hospice last Thursday to start developing our birth plan. We got through the first part of the birth plan fairly easily (who we want in the delivery room, non-continuous fetal heart monitoring, natural labor with no drugs)… but then had a really hard time what to specify after Samuel’s birth because there are still so many variables. I know so well from my last experience with having Luke that everything can change in the blink of an eye. Our last birth plan basically went right out the window when we discovered Luke had some complications a couple hours after his birth that needed tending to immediately. (he had an infection in his blood and just needed more hydration and antibiotics for ~28 hours then was fine to take home)
Our Hospice support team has been so incredible. They offer up so much information and resources we never considered. For instance, we originally planned to go on a public tour of the hospital this week so we can get a feel for the hospital layout, see the delivery and post-partum rooms, ask questions, etc. Hospice recommended to us and is now working with Mary Birch to set up our own private tour. This will give us the ability to ask specific questions to our situation, questions we wouldn’t have been comfortable asking on a public tour. We also consented for Hospice to work with ‘Now I Lay Me Down to Sleep’ foundation which is an organization that will come out and do free photography of our Samuel after he is born. See their work on You Tube: http://www.youtube.com/watch?v=-QJF0Cs4f9s This is a very emotional slide show but so beautifully done. I can’t watch it without completely losing it still.
Wednesday, December 2, 2009
New Routines - Week 30
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.
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.
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!
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