At the beginning of the month, I ran/walked the Savannah Komen race for the cure 5k. It felt good and I was glad I did, though I dropped my phone, shattering the screen, and there was no race clock so I don't know what my time was. The two other ladies in this picture are from Stroller Strong Moms, they're two of the strongest athletes in the classes so they probably could have run a 10k in the time it took me to run my 5k but whatever :)
80 turned 3 months adjusted! I celebrated by making this board, and taking this picture!
My mom and I had planned a trip to visit my Granny again in Alabama on the 17th. I was supposed to pick my mom up at the airport in Jacksonville FL, then we'd drive on to AL. I was feeding 80 in the car in the airport cell lot when I looked down and noticed that his hair was wet. I looked and the same place he had the white spot back in February was open and leaking. I called the neurosurgeon, picked my mom up from the airport, and we drove right back to Savannah. We took him to the neurosurgeons office, then were admitted to Memorial PICU. He had the shunt removed, a PICC line placed in his chest, and started a round of antibiotics the next day.
Because he has hydrocephalus, they couldn't just take the shunt out, they had to put a temporary drain in place. You can see it here as the yellow tube stitched to his scalp.
It reaches down into the ventricle and when the pressure builds it empties via gravity and pressure into a measurement beaker. They measure how much is emptied over an hour, or several hours, keep track of it. If he doesn't put out very much, they will reconsider replacing the shunt.
80 backslid on his development. He stopped cooing, and developed a torticollis. He has always appeared to have crossed eyes, but in the hospital he developed a very evident Strabismus.
It was determined that he should not see an ophthalmologist until his torticollis had been resolved. He saw a in hospital physical therapist instead. She gave us a laundry list of stretches for his arms, neck, and back, with a few leg and trunk stretches thrown in for good measure.
I mentioned before that 80 backslid a bit developmentally, well that is not entirely true. He did learn a new trick, he found his hands for the first time! It was nice to see him doing something new during his time at the hospital. He was all smiles and lovey the whole time he was there, but it is depressing for me!
The most important development during 80s 3 week hospital stay was that his temporary tubing slid up and out of the ventricle it was supposed to be draining, and into the plural space. It started draining the wrong fluids, and caused a minor hemorrhage. The short story is that Dr Thompson decided he wasn't comfortable replacing the shunt. The temporary tubing was removed, his head plugged, and everything stitched up. A week or so days later he was out of the hospital, getting CT and MRI scans to monitor the progression of his hydrocephalus.. of which there has been none! Again, I'm writing this in June and he still has no shunt. It's amazing! He was discharged on the 4th of May.
Back to me: My mother was in town for all of this, so I took the opportunity to have her go to the hospital in the mornings while I went to SSM to work out. One of the days, while running the trail, I turned my ankle. I thought I had broken it initially, I could put no weight on it and my toes were numb, but it seemed to feel better very quickly and I was able to put weight on it and finish the workout. I have turned my ankle like this before and it had never been an issue so I, thinking I was still 20 years old, thought that I was fine. I had forgotten that I was almost 30 and can't just walk alway anymore. The next day, when I took my shoes off after coming home from the hospital, I was greeted with my very own cankle!
Even now in June it's still very sensitive, but I have finally been able to work out without a brace so it is getting better.
The final chapter of the whirlwind of April was that we had all the carpet pulled out of the living/parlor/hallway/closets, and the linoleum pulled out from the entryway/dining/kitchen. Replaced it all with wood-look tiles. This was supposed to be a huge thing that I was so excited about, and now it's barely an afterthought! Sheesh.
before (well before, you can see we still had Sumo and the parlor was still unpainted)
I spent Thanksgiving holiday alone. Andrew had left to visit his family in "The Valley" (Edinburg TX) and I had made the decision that it was too risky for me to travel that far. At the time it seemed overcautious, but I didn't feel 80 kick all of Thanskgiving day, and had mentally decided that if he didn't kick at all that night I would go to the hospital first thing in the morning. Now, Tricare is very specific that military wives with the type of insurance we use, must deliver at the hospital on base. So I woke up, called the hospital to let them know I was coming and why (they said fine come on down) took a quick shower, packed a light bag just in case, and drove 45 minutes to the Winn Army Hospital. While I was driving I had a vision blackout. Not a true blackout but my vision went all spinny and I couldn't focus on anything. It lasted about 20 seconds and then was fine.
When I got to the hospital, they put me on monitors, had me drink juice, buzzed 80 with a vibrator, etc trying to get him to "wake up" except for a few very mild spikes he remained inactive. I had called my parents and was telling Andrew that I was in the hospital when the nurses came in, had me quickly sign some papers and change into hospital robes. I had just enough time to text my two sisters to tell them they were getting ready to be aunts before they walked me down into the OR.
Now, up until now I had been as cool as a cucumber. Even as they gave me the epidural that didn't work, and the doctors poked my legs and watched me wiggle my toes over and over before deciding that I needed general anesthesia, my heart was calm. When one of the nurses, as I was laying on the table and they were strapping me down, said in a very urgent voice that Adrians heartrate had been 70.. when they took me off the monitor 10 minutes ago, I started to panic and cry. It hadn't struck me until that point that 80 could be in danger and might not live. 70 is a VERY low heart rate for a fetus, it normally hangs in the 150s. So I sobbed on the table despite their urging me that I needed to stay still. It's such a blessing that they put me under, because I would not have been able to suppress the racking sobs had I been awake. 80 was born at 12:08pm Nov 23, Black Friday. He weighed 3lbs 15oz or 1808g. His APGAR at 1 min was 3, at 5 min 5, and 10 min 7. He required immediate resuscitation at birth I was told.
They waited until I was awake to "see" him (I had to have a nurse take pictures on my phone because the anesthesia wouldn't let me focus my eyes) before whisking him 3 hours away to MCG in Augusta GA. The doctors determined that I had had a placental abruption on the interior of the placenta, so a pool of blood was collecting between my uterine wall and the placenta but I never experienced bleeding because the perimeter of the placenta was still attached.
80 in the transport incubator, the photo a nurse took for me on my cellphone
Now, my experience from here on out was pretty trivial. Normal C-section post-partum momma stuff so I'll skip it.
Andrew had his flight moved up a day and flew into Savannah the next day (Saturday) My mom picked him up and they drove to Augusta while my dad stayed at Winn with me.
Andrews first time meeting 80, love at first sight!
poor little guy! he was writhing the whole time
I was released from the hospital 2 days later. It was probably a little early for me to be released but the staff at Winn didn't think 80 would live and were anxious to get me up there so I could spend time with him.
Our first family portrait
80 had suffered a grade 3 and grade 4 IVH, he had DIC, his blood pH was 6.77 which is incompatible with life, only a few nurses had ever seen such Acidosis, and none had heard of a baby who had survived it, he also had Hypotension, a partially collapsed lung, and Sepsis to name a few things.
Our first times holding 80, about a week and a half after he was born. Still in Augusta
We were told after 48 hours that 80 would probably survive. We were also told to *expect* such things as ROP, Cerebral Palsy, developmental delays, and other heartbreaking diagnosis that I can't recall at the moment. I spent an entire day crying in the snack room at MCG after a particularly grim meeting with the doctor we nicknamed "Dr House".
His first preemie outfit.
His last night before the shunt was installed. He didn't like being held facing forward, he still prefers to be snuggled.
It was later discovered that he had hydrocephalus, we were transferred back to Savannah, at Memorial hospital and had a VP shunt placed on his 3 week birthday by Dr Thompson (whom we adore).
80 snuggles with his daddy. You can see the shunt and shunt tubing very well in this picture.
We rode the NICU roller coaster, Intubation, cannulas, room air, gradual feed increases, then cutoffs, bottle feeding, PICC lines, plasma infusion, pain management... We were fortunate that he never had any serious issues with As and Bs (apnea and bradycardia) and after they sucked all the gunk out of his collapsed lung, he never had an issue breathing or with oxygen saturation. He did battle abnormally high heart rates until his shunt was installed. He also went anemic towards the end of his NICU stay. His hematocrit level was 20.9 to anyone know knows what that means. The nurses told us that it was pretty damn low and that he should have had a transfusion way before he actually got one. Andrew and I thought his shunt had failed because his behavior had changed so drastically.
I made this video of the first week of his life
Even as a preemie it was obvious which of us he was going to favor!
Someone looks like his daddy!
We stayed in the NICU about a week longer than we probably had to because of his poor feeding. The policy with discharging babies is that they must either be breastfeeding (which he was not, though I was pumping) or be able to drink 40mL in 20 minutes.
milk drunk
When I think back to how much 40mLs is now, its such a small amount! And in 20 minutes? It feels like it can evaporate faster than that! But the truth is we struggled to get him to drink even 10mLs some days. In fact he never actually made that milestone, we were fortunate to get a nurse who thought we had been there too long and put us in a different program called "Rooming In" where we basically stay for 2 days in a room at hospital with 80, pretending we are at home. We are the only caregivers for 2 days, they weigh him on the first night, and if he has gained weight we go to the second night, if he has gained weight the second night... we get to go home! Everything went swimmingly (except he was circumcised the second night.. that is a whole other story) and we went home on the 7th of January. 37 days in the NICU 6 weeks and 3 days.
Going home! Just barely 5 lbs
He was due on the 13th so we were very lucky to take him home before his due date! Even more lucky because Andew left for Afghanistan at 3am on the 9th, so we had a little over 24 hours home as a family before he shipped off. Better one day home than none!
