Tuesday, July 30, 2013

A Lifetime

This is my second go at explaining what we went through those four days at the hospital. Version number two is a bit less detailed, especially on the medical side, but my hope is that I'm still able to share our experiences with you. Id like to remind you that these are my memories as I see them today. My feelings and outlook will change as my grief grows and changes. Please be gentle with me, my rambling, and my confusions. I warn you not to read this if death makes you extremely uncomfortable. Know though there was nothing but four days of love for our boy.

 (And as always excuse the fact that I typed this with my thumbs on my phone ;) )

Our Four Day Stay:
Every day was filled with cuddles and love from visitors, especially the grandparents and aunts and uncles. Jack and I both had around the clock nurses to tend to our every whimper. Due to the special and rare nature of our Labor & Delivery unit we were the only patients and so lots of extra love was given. We can never express our gratitude for the level of care we received. 

Day One: that first day Jack was born was the best day of my life by far. My sweet boy was out and alive and cuddled in my arms. My bff photographer took so many hundreds of pictures that I will treasure forever. We just lived in every moment and didn't think of or discuss the next day. Through that first day I couldn't get out of bed after my surgery, but wasn't sore due to the Spinal medicine still being in my system. Jack had a nasal cannula on that first day that was sending forced room air (not oxygen) but we ended up taking it out because we weren't sure it was doing much anyways. Other wise he just had some sticker ports measuring his stats which stayed quiet and consistent all day. 
We decided to go ahead and bring our two older children to meet their baby brother. Our one year old loved him. He smiled and pointed and kept saying "baby" and wanted to touch Jack. Our three year old cuddled on him and even gave him his bath, but I felt in my mommy heart that she was reserved. I feel that she knew something was different. Something was to be worried over. She still loved on him, but it was a more humble quiet love. 
That night we decided to insert a feeding tube and try a very small bit of formula. I went back and forth about if I should pump. I didn't want to start my breast milk if I wasn't going to continue it, but I also had major mommy guilt, I wasn't even comfortable voicing my rationales out loud, but luckily my husband didn't ask questions and just allowed me to do as I saw fit in the moment. So I didn't pump right away. We decided to use the feeding tube and not even attempt oral feeds until we could later be sure Jack's air way was protected. I didn't want to take any chances with aspiration. Jack peed and pooped that first day and so that was wonderful. My family was so sweet with Jack and everyone just loved having him. That first night was a bit rough, but not too bad. We fed him via tube every three hours, but he also didn't sleep very solid. All I would have to do was bounce him a little when he'd wake and sing to him and he'd go right back to sleep. He slept in my arms. Jacks night nurse also came in and held him next to my bed for 45 minutes while daddy and I slept a bit. That was sweet. I didn't want to send him out and he didn't like being set down. So mommy, daddy, and Jack were spoiled rotten and she just stayed there in the dark with us for a few.

Day Two: It was much like day one. Lots of love. Lots of talks and songs and rocking. Our exhaustion levels were through the roof, but we had the rest of our lives to sleep so we did not care. That second night Nana (my step mom) stayed with us so she could take turns holding and calming Jack's fusses so we could try to sleep some. Often daddy and I would sit together in the hospital bed and hold Jack and tell him how proud we were of him. Even when he started to have troubles we just loved on him. Our fighter boy. 

Day Three: Friday morning one of Jack's nurses said maybe we'd like to take him outside. The hospital chapel is beautiful and has a court yard. We were thrilled and hadn't even considered this an option, but loved for Jack to have this opportunity. It was like a hundred degrees outside so we knew it wouldn't be a long term activity, but were ready to allow God's sunshine to poor on our baby. Jack and I were wheeled down by my nurse and his, and my husband and his family came along. Once outside we took a picture or two and daddy picked Jack out of my arms to cuddle. Jack had some trouble breathing and so daddy and I took him inside just us two and sat in the AC chapel in a pew at the foot of the alter and cuddled and prayed for our sweet boy. We wept. Jack cuddled to us so fiercely. He loved being held. We adored each other. Throughout Friday Jack continued to get his feeds and continued to pooper (which he demanded to be changed immediately) but at some point Jack stopped peeing after day one. The doctors think it could either be his kidneys shutting down or his brain not telling them to function. That was a very scary point for me. Even though all of Jack's health behaviors were not 'normal' I had somewhat been living in a dream world and then I was quickly reminded that time may very likely not be on our side. My boy was having health issues. My boy's body was... Failing, I guess. :'( Through each and every decision there were doctors and nurses discussing the options and possibilities. We had also prayed over all interventions and studied greatly before Jacks birth. Jacks post birth ultrasounds were helpful during all choices as well. Jack was constantly held and sang to and talked to by myself and my husband and our parents, our siblings, and friends as well. 
That night Mimi (Husband's mom) stayed with is in the hospital to take turns holding him. It was a harder night, but still considered a blessing. Just thinking about all this breaks me. oh :'( I love him so much. My heart bleeds with pain at the extent of my love. 

Day Four: Throughout Saturday Jack would have troubles more often. It was difficult. It was confusing. But we were with him. We loved him. His family loved him. Jack came back fighting over and over. That night, at 7:02pm, Jack had not been breathing for an especially long time. When we asked the nurse to listen with her stethoscope she said, "Im sorry. I no longer hear a heart beat. I will get his doctor." We all wept, but waited. I just held him and waited for the breathing. I waited for him to be ok again. Surely the nurse was wrong. Surely. I just said, he needs to be checked again. Again please. The doctor came and listened for the longest five seconds of my life and simply said, "Im sorry. He has passed." Daddy prayed. My heart floated up to Heaven to live there with my boy forever. We went back and forth between sobbing and hugging and staring. All of our parents and our siblings hugged and cried with us. It happened right at shift change so jacks and my day and night nurses came in and shared tears and love. Thankfully my mom was able to be there. She had been staying at my house with my two older kids and switching out with the other gparents to come see us. Not so great was that at this time my two older kids (1&3) had come to say hello and were in the waiting room with Nana. We of course didn't bring them in to the room now that Jack had grown his angel wings, but my momma still had to go home with them and attempt to hold it together. I wanted them to feel only happiness and not know of our grief until mommy and daddy could be there to stay and hold them. After Jack's spirit left we kept holding him and organized memory boxes for the grandparents. The nurses came in and did beautiful plaster molds. My dad took care of organizing with the Chaplin on having Jack picked up that night instead of me having to give him to security or the morgue. My dad, the Chaplin, and my and Jacks night nurses arranged for a better goodbye. That night, at midnight, Jack's nurse wrapped him in a warm blanket and Daddy and I loved on him once more and then I handed him to my father. A very loving and proud grandpa. My dad and Jack's very loyal night nurse (mary) then took him themselves down to where the funeral home was waiting to pick him right up. With empty arms, my husband and I showered, took some sleeping pills, and went to bed together where my amazing night nurse (stacie) had pushed two beds into the hospital room. The nurses hung a butterfly on our door so as to ask for privacy for grieving parents. We slept for eight hours, woke, packed our bag, packed Jack's overflowing bag, and together with our parents left the hospital fetal health center room 3, and went home holding two plaster molds, a butterfly, and each other. 

Friday, July 26, 2013

Jack's Birth

Jack's Birth:
After getting the kids settled we headed to the hospital in order to be there to start the induction at ten am. I was 38 weeks 3 days and worried my body may not be quite ready to have a baby, but Jack had stopped growing and my fluid was quite low and so it was best to get him out. When we arrived and were settled my nurse hooked up my belly monitors and started my IV. I have never done well starting an IV. It goes in fine, but as soon as the fluid starts running through my body I get sweaty, dizzy, blood pressure issues, and often throw up. It only lasts a couple of minutes, but isn't enjoyable. However, when this happened to me Jack's heart rate also took a significant drop. Our OB came in and introduced himself and immediately began discussing a CSection. He had concern that if jack didnt even tolerate the IV, how would he do with the induction. We took his recommendation into consideration, but asked to continue with the induction for now. However, before they even did anything Jack had yet another big drop. At that point the OB explained what would happen if we had to move too quickly towards a CS later (I would be knocked out and daddy and Briana (photographer friend) couldn't be there for the birth either). The heart rate drops and fear of no one being present for jack's birth had us agreed to the CSection at that point. (About noon) 
After telling/calling all the grandparents and getting set up the staff came to walk me down. When they stopped my poor husband at the door he was quite worried. He did not know he had to wait a while before he could join me. I look back now and see the adorable pictures of love where he waited and waited and waited for them to get him. It was a very stressful time because we ha no clue how Jack would do or be. It very likely could've been the end right then, right away. 
When I arrived in the OR they put me on a table, covered my shaking body in warm blankets, and gave me the spinal. It hit quick and I laid down. Once numb and covered they brought my honey in. This OR is connected to the Infant resuscitation area so they also had the whole baby team and my photographer on the other side prepping. I would say it took about twenty minutes of strange tuggings before we heard the most beautiful sound in the world. A sound we were not always expecting, but always hoping for. Our sweet tiny baby, Jack, came out with the tiniest kitty cat CRY. The room was thrilled. My husband rushed over to the infant side right after they showed him to me and Jack's team began checking him and helping him. It took over an hour for the doctors to sew me up, but I was not nervous or sad because I could hear my baby giving a great fuss while he was measured and poked. That day 7-17 was by far the very happiest day of my life. I knew it then laying upon that table that God had given me an angel of my very own and granted us with irreplaceable moments of love with this angel. Daddy and Jack's team kept coming over to give me updates or show him to me. He needed a bit of oxygen help at first, but was otherwise handling life outside the womb. Shortly after his birth the staff did a heart echo and head ultrasound to confirm Jack's heart and brain issues. This confirmation was vital to us because it would have a huge part in how we decided to go forward with Jack's intervention now knowing that he did in fact have inoperable or incurable troubles. Jack was born at 1:55pm weighing 5lbs 15oz and 19in. A little after three pm they escorted me to a recovery room and soon after daddy lead the team that brought Jack down too. He was greeted by a happy tearful mob of family as he was rolled down to see momma. They passed him into my arms and it was in those warm arms and in many many others that he spent his next three and a half days. He was only set down to get his poopy diaper changed (which needed done immediately otherwise a fit was sure to be throw!) He was the best cuddler and especially loved being right up against mommy's skin. 
(Specifics about those four days and the day we said goodbye to come soon...) 

Tuesday, July 16, 2013

38 Weeks: It's Time

38 Weeks:

It's Time:
Well, the time has come to hold our sweet boy in person. We already know all there is to know about him. We and many others have bonded with him more than I thought possible with a baby through the womb. His heart and soul are so deeply part of me and who I am. Who I will always be. I am his Mother. I have been for nine months and will be for the rest of forever. God gave me Jack as my birthday surprise and I will forever realize how special and amazing he is. Four months ago they said he wouldn't make it full term. They said he wasn't worth it. That is not for anyone else to decide except God and God has only begun to do Miraculous things thru his creation, Jack Andrew. 

The anxiety levels are sky high. All of Jack's grandparents, aunts, and uncles have arranged their arrival. Plans are in place for big brother and big sister. My hospital bag has been packed for months. Laundry is caught up. We are "ready". Ready to go to the hospital that is. What happens after that, Lord only knows. 

The Nitty Gritty: We go in tomorrow morning (Wednesday) to start induction. Prayers that my body will accept the early induction. My other two were born at 41 weeks and Jack is just past 38. My body isn't ready, but he is my third in just over three years so Im hopeful. I've also never had medical induction so that's new. My hospital does the process a bit slower and differently than a normal H so there's some learning there too - they won't want to do too much at once because of Jack's heart - so it may take a couple of days. CSection is still a possibility if issues arise. We are inducing because Jack's growth has stopped and my fluid is even lower - both signs that decline is happening. It's time. I feel peaceful about that. I can not speak to what happens after we show up, but I know The Lord and so many people are with us in this journey. I appreciate everything from everyone more than you'll ever know. 

Monday, July 8, 2013

37 Weeks: baby weight gain issues, uncomfortable meetings, and communion

37 weeks:

Jack was super low, head down, and still sucking on his little hand this week. His heart rate was in the normal range at 135 and his cord flow was BETTER than it has been in a month. 
He has previously registered between the 20th and 40th percentile with his weight, but today he measured in the 3rd percentile. These U/S weight measurements can be up to 15% off, but even considering that it appears as if Jack has not grown in the last few weeks. This is not good. In addition, my amniotic fluid was quite low today. Fluid gets lower as the baby grows, but the issue here is that mr baby hasn't been growing and even if, it is too low for 37 weeks. 
Lack of growth is a concern because birth weight is a huge factor for survival and this halt can also be a concern for upcoming fetal demise. Now the issue remains on WHEN to take him out. Originally I was eager to wait wait wait because I wanted a higher birth weight (but that isn't working out well) and I didn't want to attempt induction before my body was ready for concern of failure leading to CSection. I am not against CSection, but for the sake of having the most time available to be with Jack after delivery, a vaginal birth is desired. At this point we are monitoring movement throughout this week and going back on Monday to check weight, cord, fluid, and heart rate. If all seems the same we will probably schedule an induction the following week. If things get worse it may be sooner. 

The Other Meetings at 37w:

Sibling Care: 
The hospital offers all sorts of services to help kids with having  a sibling in the hospital or with grief and death. At this point we are choosing not to have our preschooler meet with them, but happily accepted their list of child friendly books and pamphlets. We have yet to discuss any possibilities with our oldest because we still have no idea what may be ahead of her, but we have resources ready. 

The hospice we met with was yet another "just incase" meeting. They listed the variety of services they offer and we left it at "we shall just see what happens" and let you know. (Of course there were a lot more details, but I am already doing my best at ignoring the majority of that conversation for now so I don't feel like reliving it.) 

Chaplin Slash Organ Donor Info: 
Again, another topic of "just incase" and another topic that is difficult to discuss... Basically we have looked into the potential of first off simply donating Jack's cord blood and then the potential of other organ and tissue donations. We wanted to make sure all basis were covered ahead of time. We needed to know details about whether or not Jack's Trisomy disqualifies him and also to know the time crunch necessity details. 

To end on a sweet note - a experience from last weekend... 

My church does communion once a month. I seem to be my most emotional at church. Last weekend as I was preparing for communion I thought to myself that this may be baby Jack's last time taking communion and that I would aim all my heart power at sending the sacredness of the experience straight to my womb towards my boy. Silly I know, but Im finding the end of my pregnancy has caused me to be super sentimental at my worry wondering if these are my last moments with my boy. As I walked up the aisle I prayed for my boy and thanked my God for His sacrifice. When I arrived at the station the server (a stranger) said to me, "the blood of Christ shed for you" then leaned down towards my belly and said, "and for YOU" Thankfully I got turned back towards my seat before I LOST IT. How random of her yet how amazing and special she made me feel. What an amazing God. Yes, the blood of Christ has been shed for me AND my boy and THAT is why I can rest assured knowing that even if my earthly moments with Jack are short that we will have eternity together very soon