Railroad Wife, Railroad Life

On January 4th, I had just come back to the hospital from having dinner at RMH when Kennedy's nurse received a call.  The Sleep Lab had an opening for her to do the sleep study that night.  Knowing it meant we could come home sooner, I told them we'd be happy to take the spot.  Around 8:30pm we headed over to the sleep lab.  About an hour later she had all of the electrodes hooked up and she was ready to go.  I was able to sleep in the room with her, which was a little strange.  This was the first time I'd ever been in the same room with her overnight. Kennedy kept with her every 3 hour schedule for eating.  I was able to feed her with her still being in the crib.  The nurses were amazing and allowed me to help them move her and soothe her when she began to cry.  Around 5:30AM the study was over and we headed back to Kennedy's bed spot.  I headed back to RMH to sleep for awhile. The results for the sleep study finally came back o...

Kennedy had her Swallow Study on New Years Eve.  As predicted she doesn't have anything going down her trachea while she's eating.  On Sunday they put her back on oxygen.  She's at a 1/4 liter flow, but 100% oxygen.  She one episode requiring stimulation 3 hours after they turned it on, but none since then.  I truly believe they tried so hard to get her off the oxygen so quickly that it simply tired her out.  Because her sleep study is the only thing keeping her here at this point, she was placed on the cancellation list.  Basically if anyone cancelled she would be able to take their place.  Thankfully a spot opened up for Sunday night and she will be having her sleep study then.

I know that I've been relying on Facebook more than the blog to update everyone on Kennedy's progress.  Here is the latest update for right now. Two weeks ago we were told that they had hoped Kennedy would be discharged by December 22nd.  Unfortunately on December 21st, Kennedy had an episode that required stimulation.  When this happens it's an automatic 5 days from that point for a discharge.  The Doctor overseeing Kennedy's care wanted to make it 7 days though, just to be safe.  On Christmas Day, Jonathon surprised us and came up for the day.  Kennedy was very excited to see her Daddy.  We spent most of the day at her bedside and enjoyed a wonderful dinner at the Ronald McDonald House.  Shortly before Jonathon left, Kennedy had a short episode where a Nurse not familiar with Kennedy or her situation stimulated her prematurely, starting the 5 day process over. When I arrived at the hospital on the 26th, I was told that Kennedy had two episod...

October 20th, my Grandma Mary came to stay with me at the Ronald McDonald House.  Aunt Bobbie had to go back home to Atlanta.  On the 21st of October I mentioned some changes I'd had in my pregnancy to my Doctor and he confirmed I had a slow high leak of Amniotic Fluid.  He didn't seem alarmed, but said we'd monitor it.  I was a little concerned that the situation was more serious than the Doctor had made it out to be.  On the 23rd, I went to Labor and Delivery Triage and was told that yes I did have a slow high leak, but my membranes hadn't ruptured/my water hadn't broken. The Doctor I saw in L&D did an ultrasound and confirmed my fluid level went from an 11 on Monday to a 9 that day.  She did say it could be something as simple as Kennedy having a full bladder during the ultrasound.  I was told to take it easy and to rest as much as possible. I did just as the Doctors had suggested, taking most of my meals in my room at RMH.  On Monday, Oc...

I'm sorry it's taken me so long to get to a computer to type this all out.  I will try to break it down day by day so I don't forget anything. Wednesday, September 18, 2013 Around 8AM Jonathon, my Mother-In-Law, and Jonathon's Granny, and I reported to Cincinnati Children's Hospital for the surgery.  We were informed that the person who was scheduled to have their surgery in the morning was still going to have it, so I wouldn't be heading back to the OR until around noon.  The Fetal Care Center went ahead and admitted me, and gave me a room to wait in.  I was put on an IV, and prepped as much as I could be ready when the OR was open.  Around 11:30 one of the nurses told me I wouldn't be going down before 1PM because the first surgery was taking longer than expected.  However, around 12:30 the nurses came up and said they were ready to take me downstairs. Once downstairs, Jonathon's Mom and Granny were asked to wait in the OR waiting room, while Jona...

This week has been a very long week.  On Tuesday we met Jonathon's Mom and sent Savannah to stay with her and my Father In Law.  We then proceeded to Cincinnati where we met with a High Risk OB and NICU Doctor who basically tried to talk us out of having the surgery.  All of my reasons for wanting to have the surgery were met with "This surgery won't guarantee any of that will happen."  When we left the meeting I was starting to question whether or not the surgery was even necessary.  Luckily Jonathon and my Mom helped me to see that with everything comes risk.  There is no guarantee that the surgery will prevent her from needing a shunt or allowing her to walk without the assistance of crutches or one day needing a wheelchair.  However, having the surgery definitely reduces the chances for all of these. Today we met with the High Risk Doctor and Pediatric Surgeon's who will be performing the surgery.  It was comforting because two of the three ...

Normally I wouldn't use my blog to post such personal things, but I feel like this might be the best way to keep everyone informed on what's going on with our latest addition.  For those of you who are just finding out about what's going on, I will start from the beginning. While Savannah and I were in Colorado I received a phone call from my OB stating that the results from our Quad Screen blood test came back with high numbers for a Neural Tube Defect.  We moved up our anatomy scan from August 21st to August 12th so he could confirm or excuse the results.  His office also made an appointment with a High Risk Doctor in Huntington for the 15th as well.  On August 12th I went in for the ultra sound and my OB could not find the defect, but could tell there was pressure on the baby's brain and her ventricles were dilated.  He was concerned the defect could be brain based, but wouldn't commit to that prognosis until after I went to the High Risk Doctor. On the 1...