So this is probably the last "Before the Blog" post since this is actually leading into when "Jacob" started blogging.
The rest of our hospital days kind of blend but they were great days spent with Jacob....we embraced his diagnosis fastened our seat belts for the journey we were on. We had to wait a couple more days before we got the official diagnosis and during those days, we did tell family of his likely condition. So many people came to the hospital it was really something.
I didn't stay in my room very much at all....I would go and visit him and fall asleep down there, many times with my head next to his cooking on the warming bed. I remember spending one night up in my room and the nurses got Jason a pull out to stay with me......I cried like I had never cried before....I wept in disbelief of the events that were happening....I sobbed in shear physical and emotional pain.....poor Jason didn't know what to do because he knew I needed to cry because I was just so broken but then he was concerned about the fact that I just had surgery and I was in so much pain....I hurt everywhere.....my heart, my tummy...everything was broken....one of those moments when it all comes crashing down.
Jacob continued to do well. He was decreased on his IVs and began feeding on fortified breast milk via the OG (feeding tube) and increased well. He stayed on the warming bed for a few days....Jacob was moved to a different bed (I forget what they called it but it had it's own thermostat so that he would begin learning to maintain his temperature). He remained on the monitors. The ICN hospital staff gave Jacob a separate room so that we could have as many visitors as we wanted without it being a problem as well as Joshua and Jonathan in there who were not allowed.....shhhh don't tell. Jacob was eventually in a crib in room air, room temperature where he did fine maintaining his temp. Dr.R came in spent time with us, nurses were amazing, Jacob's lead neonatolgist was phenomenal on so many levels, and my parents cared for Joshua and Jonathan (what a blessing!) while I stayed at the hospital and Jason came is as much as he could.
Before the official diagnosis we stopped all conversations with the doctors about how to treat him.....we just took one day at a time and did what we could that day. Thursday the 17th was the day we were to get the test back. The A.M. came and went and then we were well into the P.M. when the doctor came in and told us the Trisomy 18 was his condition. We talked about the possibility of bringing him home. A nurse said to me "If all he has is a feeding tube, you can learn how to do it and take him home." I thought about that for a few days.
I was still a patient myself at the hospital so I had a room to stay in and they kept me as long as they could and then Friday evening they discharged me. I went home to sleep that night....I stayed up late staring in Jacob's room wondering if he would ever stay in it and then I woke early in the morning panicked, called his nurse who said he was great and had a fun makeover evening and I just felt like I had to to get back to the hospital....my mother called and told me she was on her way to the hospital so I knew he wouldn't be alone.....my sister got me back there as soon as she could and I didn't leave again until Jacob was brought home.
Once back at the hospital on Saturday, I began Jacob boot camp. I learned the ins & outs of his care.....I learned about the syringes, the feeding tubes, placement, measuring how much of the tube to put in, residuals, got our own stethoscope, calculating cc's, fortifying breast milk, gravity feeding him.....I took over care of Jacob as much as I could but under the supervision of the nurses. I did have one nurse who made me skip the 3 A.M. feeding so I could sleep (thank you Amy!) but I did what I had to do every 3 hours.....plus, as a nursing/pumping mother, I was up anyways! By Monday, I had changed his tube a couple times and done the feedings around the clock. They were confident in Jacob's care and ready to get him home.....plus, they told us that if we are fearful of caring for him at all, to call or bring him back and we could take it from there. We had the home nursing all set up incase we needed it and we waited for discharge. We did what we had to do to bring him home and give him the best possible life we knew how.....with each child, you have to adjust your life and although Jacob came home with bells and tubes, it was what we had to do as his family to care and love him....it was a privilege.
They discharged Jacob Monday evening about 5:00 P.M. and the hour long drive in a ridiculous snowstorm during rush hour finally brought us to our home where Jacob celebrated his first week birthday and then spent his remaining 131 days. The rest of the story is the blog so reminisce through the old posts as we approach his first birthday on the 14th.....2 days away.
Please feel free to ask any questions....you can email us at firstname.lastname@example.org. The blog is written from Jacob's perspective and therefore my perspective as a mother being his at home nurse or Jason's as a father and head of a very special household is hidden behind Jacob.....so if you have any questions about Jacob, his story, his care, his doctors, our feelings....anything, please know that it is our honor to minister through Jacob's life and we are an open book. Thanks. God Bless.