Samuel is born

Samuel was born alive on Monday evening (Jan 25th) at 9:57pm weighing 4 lbs 12ozs @ 18 inches long. Samuel lived for 33 precious minutes before passing away in our arms.

My water broke at 5pm that evening which initiated nice, steady contractions fairly quickly. I knew we didn’t have much time. Dan raced home and we got our stuff together and we arrived at the triage center @ the hospital at 6pm. There, they monitored my contractions and Samuel’s heart beat for about 2 hours while I lied in a bed the whole time. Things seemed to be moving at a nice slow pace for the most part. My contractions were still about 4-5 min apart (dilated to 3cm) and Samuel’s heart rate hovered around a consistent 150-160 bpm. As soon as our delivery room was ready, I chose to walk myself there without any assistance from the staff. I had all of about 10 minutes to walk/look around the room before the ‘real’ strong labor pains kicked in. I barely could walk myself to the bed. Once I made it, the nurse confirmed I was dilated to 7 cm and paged the perinatologist to come to our room because I was progressing so rapidly. Within 5 more minutes I was at 10 cm and ready to push. The doctor was still not there yet and I had to breathe short breaths through my agonizing contractions until the doctor arrived. It probably only took a few minutes, but for me and without pain medication, it seemed like an eternity. The doctor threw on his gown and mask so quickly and got into position for delivery. In 3 pushes, Samuel was born alive!

Samuel was not strong enough to cry, open his eyes, or completely gain a full pink color through his few intermittent breaths but his heart was beating and he was breathing. The doctor placed him on my chest immediately after his birth and was then later wrapped up and handed to his dad’s arms. We loved the fact he was alive and that we got to meet him for the very first time! We took the opportunity to tell him how much we loved him and how proud we were of him because he was such a strong little fighter. He did everything he could, and fought the good fight so that he could meet his mommy and daddy if only for a very brief period. He showed no signs of discomfort and seemed completely at peace during the short beautiful minutes of his life. At 10:30 pm the nurses did a final check and confirmed that Samuel was gone. He lived for 33 very short minutes. After he passed we called for our family to join us in the delivery room as we said our good-byes and took our final pictures with our sweet little guy.

He remained with us for the next 15 ½ hours after being transferred to our post partum room. We just couldn’t let him go. We knew his perfect soul was no longer in his frail little body, but somehow this was more comforting to us to have him with us. We didn’t want to go back to the room empty handed. Sleep was overrated at that point and neither of us could take our attention from him. We got to study his wonderful little features. We got the opportunity to note how he looked so much like our son Luke. We got the time we needed to pray together, weep together and pray over him. We really enjoyed and treasured the time we had with him. Our time with him was so sweet and short that we didn’t care about anything else. It was like the outside world wasn’t even there and time itself stopped and the only thing that existed was Samuel, his Momma, his Dada and God’s presence.

We are so thankful to God letting us be Samuel’s parents and allowing us the time we did have with Samuel. We prayed so hard to have ‘some’ time with our little boy and God responded! He knew our hearts and desires. We take comfort knowing he is now in the arms of Jesus. He has blessed us with so much in life already and though this experience was very hard to endure we both would not change it for the world. God is now giving us the strength and comfort to get through this rough period and we know our lives will forever be enriched by this whole experience; in our relationship to each other, to Luke and to our friends and family around us. That knowledge and the future life experiences we are to live on and have, is gift enough.

We'll be posting pictures from Now I Lay Me Down To Sleep photography soon.

Note to friends and family: In lieu of sending flowers or gifts of which we are grateful, we’ve decided that your gifts would be best served by making a donation to one of 3 organizations:

1) San Diego Hospice (the SD Hospice folks have been so great to us in the past weeks)

2) Another personal site that we found a great help and resource (with personal stories of survivors of Trisomy 13) that is very near and dear to our heart and is funded by a family with a surviving Trisomy 13 child where you can make a donation if you wish can be found here:

http://www.livingwithtrisomy13.org

3) A final site where Trisomy 13 and 18 that funds Research/Education/Awareness accepts donations is here:

http://www.hopefortrisomy13and18.org

Thoughts and Preparation in Week 37

I am now full term in the pregnancy. 37 weeks! What a milestone for our little guy!! Only 10 days to go until our induction. We are feeling apprehensive for what the future holds for our son, but our feelings are met with a lot of hope that Samuel is going to be strong enough to survive his birth and have some time with us. We know his heart is relatively strong with only a minor defect on the right side (see former blog post for this summary). His kidneys, bladder and stomach all appear to be the correct size for his gestational age in the last ultrasound (34 weeks). There were abnormalities found with each of these organs in prior weeks. Has God corrected these things as Samuel grew inside my tummy!? We so desperately want to believe the answer is yes! We are also hopeful Samuel’s lungs are strong too. Samuel gets the hiccups almost every night. I personally think this means he is preparing to breathe air (aiding lung development), but during this practice he is ingesting in too much amniotic fluid and hence the reason for his constant hiccups. I could be wrong but this is my current belief anyway. We have a good solid OB/Perinatologist to deliver Samuel and a hospital that is geared up with surgeons and other medical professionals if we need them.

I am picking up our visitor badges for our immediate family tomorrow. The hospital’s lead social worker has been incredible with ‘bending the rules’ for our situation to ensure all of our immediate family can be with us right after the birth and all at the same time. We found out last week there is a new H1N1 outbreak hospital policy that greatly limits visitation to patients who have just delivered babies. The policy also excludes ALL children under the age of 18 from any visitation whatsoever. The social worker is getting this policy overturned too for Luke, but his visitation time has to be greatly limited. Regardless, I am so very grateful to her for this! I just cannot imagine meeting and getting to know Samuel after the delivery and they tell me Luke could not be a part of that experience. I would be crushed.

This week, we are packing the hospital bags, finalizing the birth plan and plan on doing some doing some of our own amateur pregnancy photography (I’ll post a pic on the blog if something turns out good). It is also my last week at work so there are quite a few loose ends still to tie up.

Finally, we went to the store yesterday and had Luke pick out a gift (a little plush stuffed lamb) to give Samuel. I think this will be pretty special as Luke is just now starting to understand how to give and share with others. We have been telling him that his little brother is coming for some time now since my belly grew. He seems to somewhat understand because he has pointed to my belly and say’s “baby” and gives it a big hug. It’s so sweet. I really should capture that on video before it is too late!

Latest Tours

Last Friday we had the opportunity to take a tour of an In-patient Care Facility at San Diego Hospice. This facility was spectacular to say the least. It was similar to a nice hotel but with hospital beds. I never knew such a thing was made available to patients who were terminally ill. Our Hospice social worker led Dan and I on this tour. The building was beautifully designed and perched high on a hill overlooking all of Mission and Fashion Valley (you can actually see all the way to the ocean!). It was probably one of the best views I have ever seen of San Diego. The mood within this place was so calming and serene. Beautiful local art on the walls, comfy lounge areas for families, manicured gardens and statues in the courtyard, and nice walkways out to the look-out points. There were activities going on for patients who chose to come out of their rooms. They offer every type of therapy imaginable - pet, aroma, massage, etc. But even after seeing this facility and contemplating the idea we may be there with our little Samuel just did not seem real to me. It was hard to envision our family residing there even though Samuel has been given a grim prognosis to live. And I am not sure why.

I think the reality and gravity of our situation hit both Dan and I when we took a private tour of Mary Birch Hospital yesterday. Of course, I was so happy it was a private tour because we could ask the hospital’s social worker very specific questions applicable to our needs- our need for a private postpartum room, our need to know the neonatologist working the day of our induction (1/29), our need for specialized equipment for Samuel (such as a breast pump and specialized bottles for his cleft palate), and of course our need to know the locations of the NICU and Rady Children’s Hospital in the chance he is transferred. We had the opportunity to walk through the Mary Birch level-3 NICU. I remember feeling faint as all of the memories of being in there when we had Luke came flooding back. Of course, Luke was in a level-2 NICU at Scripps and his condition was so very minor compared to Samuel’s. I couldn’t help but feel completely overwhelmed…. looking at these beautiful babies all around just trying to live and get stronger for their mommies and daddies. I could see the emotion on people’s faces who were spending time with these little ones. They had expressions of concern and hope, and probably accompanied with a lot of exhaustion. All this was so very real to me. I felt like I was already in their shoes even though little Sammy is still safe and sound tucked away inside my tummy.

Induction is Scheduled

Happy New Years! We are happily welcoming this New Year ahead of us as we know it will be the year of our precious baby boy's birth.

We had another OB visit and ultrasound yesterday and it was probably the most 'routine' feeling I've ever felt, if that is even possible. No new discoveries found in the ultrasound this time and, in fact, things were really hard to see because little Samuel is getting so big now and is pretty well pressed up against my uterine walls. Even with his larger size, the sonographer reported that he is still very small. He is in the 3%-tile for his gestational age and weighs approximately 3 lbs / 5 oz. Regardless of this aspect, he appears to be thriving and well inside my tummy and that makes me so happy!

We are ~5 weeks away from our due date. The burning question came up during our visit whether or not we wanted to induce. We told the doctor we made the decision we did want to induce so that we could ensure we had a prepared setting for when our little Samuel made his entrance into this world. We want our own OB to deliver him since she already has strong familiarity with his condition. Also, we want to have the opportunity to speak to the neonatologist on staff beforehand so we can prepare him/her about our Samuel. We haven't decided exactly when the evaluation will happen after his birth, but we know the neonatologist's expert opinion will greatly help us with some of our on-the-spot decisions.

Our induction is scheduled for Friday, January 29th (~1 week before our due date). This is only 4 weeks away. The reality of Samuel's birth is now completely starting to set in for us. We are overrun with many emotions again.... feelings of excitement, a longing to finally meet him but at the same time having a very real fear of losing him. This is something we may never be completely ready for with any amount of planning or doctor's suggested prognosis.

We have purchased 2 newborn outfits for our sweet Samuel. One is for pictures after he is born and the other is his take-home outfit. I will remain optimistic of this possibility for as long as God allows us to. We know God performs miracles and it is all in His hands at this point. I feel way more comfortable and at peace knowing this.

Dad's perspective

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.

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.

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.