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Sunday, November 14, 2010

It's been awhile....

Wow, what a summer and fall. I've been a real slacker when it comes to posting on my blog, hoping that will change as things are starting to slow down, at least a little bit. Where do I start?


On April 21, I went in for a routine check-up only to find out that Lilian's heartbeat wasn't too easy to hear on the doppler. Dr. Wiser sent me over to the hospital to be hooked up to their monitor to see if we could get a good reading. Nothing there either. Next up was an ultrasound. While it was nice to see my little sweetie, it wasn't so great seeing that her heart rate was around 80 to 90 bpm, when it should have been up around 130 bpm. After my ultrasound, Dr. Wiser informed me that her heart rate was low and it was time for her to be delivered. He said we'd do it the following morning and that they didn't know why her heart rate was so low, but it was so they should deliver her. I was in shock and we had to rearrange some other appointments we had going on. All during this, we were dealing with John and an illness he was having.

Anyway, the next morning Lilian Grace was born via c-section at 10:51 a.m. weighing 7lbs 7oz and 20" in length.

While I would love to say all was happy and hunky dory after her delivery, I can't. Once my little angel was born, her heart rate went from 80 to 90 bpm and skyrocketed to 230-260 bpm, which is very dangerous. If this had happened in an adult.... well lets just say it would be deadly. Thankfully, she is a resilient little girl and just laid there somewhat silently and didn't complain much other than all the poking and prodding from the hospital staff.

After a split uterus (glad I didn't go into labor on my own!!!!!) and a quite a long time without getting to see my baby, they finally wheeled her in, hooked to a ton of monitors. Her heart rate stayed up and Dr. Wiser informed me that he'd had a conference call with the Neonatologist and Pediatric Cardiologist at OHSU Doernbecher Hospital in Portland. They wanted us to come up as they weren't sure what was wrong with Lilian. Thankfully, they had space for me to go as well and I wouldn't have to stay in Stayton, away from her. About an hour before the ambulance arrived to take Lilian up there, her heart rate all of the sudden dropped to normal levels. Talk about a huge relief. However, they said we still had to make the trek up to Portland.

Once we got up to Portland, her heart only had two or three more episodes. I spent alot of time in the NICU at Doernbecher, and let me tell you, the staff up there is fabulous. So caring and helpful. I was very thankful for them and all the help and support they gave us. Lilian looked like a giant next to all those tiny babies in the NICU. What an amazing place and what amazing things they do for all those babies.

Our Pediatric Cardiologist informed me that Lilian has SVT, which usually heals itself by the time they are 6 mos. to 1 year old. He gave us a prescription for medication that we were to give Lilian two times a day and we would visit him every three months or so to have her looked at and occasionally hooked up to a EKG monitor for 24 hours.

I am happy to report that at our October appointment, the Pediatric Cardiologist had us stop all medication. We then waited a couple of weeks and went back up for Lilian to be hooked up to another EKG monitor which ultimately showed that everthing is ok with her. No more medications and hopefully just one last visit to Doernbecher in January!


John had quite the summer as well. Around September '09, he started having some issues involving diarrhea. He avoided going to the doctor for several months, until finally in February '10, I told him I was making an appointment for all his various ailments because we needed to get on top of them before our new baby arrived.

He went to the doctor and they drew a bunch of blood and couldn't find any clear answers except for his body was fighting off some kind of infection. After several more tests and scheduling a colonoscopy for April 23, it seemed like we'd have some answers soon. Well the April 23rd date became a week later due to the early arrival of Lilian. Luckily, we were able to get in the next week for his appointment. After his colonoscopy, John was diagnosed with Ulcerative Colitis. They started treating it right away with steroids and other medications. Right when we thought things were taking a turn for the better, they would get worse. By June 1st he was really bad and went back into see his Gastro Doctor. They ordered him to up his meds but it just wasn't helping. Now it was June 8th and he was just deteriorating day by day, by the end of the week he was not able to keep anything down and was pretty much bedridden.

After much harassing of the doctor's office, I was finally able to get some anti-nausea medicine for him. This did help, but he was so weak and the cramping in his abdomen was so bad that it didn't make much difference. I kept bugging them all weekend, and finally on Monday morning was able to get the go ahead to get him checked into the hospital. There was nothing else I could do for him, and my stress level was really hitting a high having to take care of a newborn, a 2-1/2 year old, and him. Unfortunately, alot of the time he would get "service" last with how hectic things were.

To make this long story a little shorter, he went into the hospital on June 14th and by June 22nd I got a call that they would be removing his colon. He had one of the most agressive cases of Ulcerative Colitis the doctors had ever seen. None of them could believe it was so bad and the surgeon said his colon was toast when they removed it and if it had stayed in, there was the possibility of rupture and well, you can guess that would be BAD!

His recovery has been a long one, he was off of work all summer ... only returning in mid-September. It's been a struggle for him to adapt to his new condition but I try to remind him it can only get better from here and to remember what he was going through before this all happened. Also, as he put it... he no longer has to squat in the woods to poop! HA!


Lynsie Jean is now 3 years old and I can't believe how big she is and what a little smarty-pants is. She has had her difficult times but has mostly been the best little helper ever over these last 6-1/2 months. I feel pretty lucky to have her, as I know her daddy does as well. She proclaimed tonight that Lilian is her best friend and gave her a hug. So cute! I can't wait to see what she's saying when Lilian is mobile here soon. HA!!

So, hopefully things just keep getting better from here!! Not to sound like I'm on an awards show giving an acceptance speech, but I've got to thank all my family and friends who helped out and supported us during this past year. Everyone really stepped up and gave their support in so many different ways. You really have NO idea how much this meant to us.

I hope to post a little bit more... but we shall see. I really am going to try though. :-D

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