Ninety One

Luke and Lincoln could be twins as babies!!

It's been ninety one days since we were first intimately introduced to the NICU. At times the beginning feels like a distant dream. Like we couldn't have possibly lived through those first couple of days/weeks. The excrutiating ups and downs seemed so unbearable, but somehow we got through them. We still have a few bumps here and there, but they're in no way comparable to the mountains in the beginning.

At night, I often find myself pleading to Heavenly Father for my baby boy even after I've layed my head on my pillow and closed my eyes. I've always made it a point to recognize my blessings and show my gratitude, but in the last couple of months I have been much more aware and much more sincere.

The one big thing that lingers in my mind is......how will I ever re-pay all of those who have helped us through this trial??? I am so humbled to think of all of the selflessness on our behalf. The meals, concern, hours of babysitting, encouragement, medical care, advice, prayers....so many acts of kindness.

To give you a little insight on exactly how miraculous it was to get Lincoln back to UVRMC- My insurance denied the request to have him back-transported. Without them paying for it, that meant we were stuck up at Primary's until he was discharged for good. After hearing wind of this, the doctor's, a few nurses, and the care manager in the NICU at UVRMC, were trying to figure out how to make it work. We got a call the morning after the request was denied to tell us he was now being transferred. After Lincoln's arrival to UVRMC, Scott and I went in to visit him. We ran into the main doctor in the NICU in the hall, Dr. Steve Minton. He greeted us with a smile and a hug then informed us Lincoln made it "back home." He said "you know, the insurance wouldn't pay, so we're covering the fee for the back-transport." We were in awe. I responded "Oh my goodness..we are so grateful and forever indebted to you." Dr. Minton just smiled and replied "I know." Can you BELIEVE that?? He is very family oriented and that emulates within his whole staff. They saw the importance of us being five minutes away rather than sixty. Not only was the round trip drive two plus hours, but the whole ordeal would be at least five hours a day.

So, many of you may be wondering what Lincoln acts like. Afterall, he is three months old. Well, he is actually just like a newborn still. Yes, he was born three months ago, but he has spent these last three months growing, fighting off major issues, and developing as a fetus would be...just outside of the womb. So, his "adjusted" age would be calculated from his due date. That would make him six days old. It will always be somewhat confusing.

Lincoln has drastically changed our lives. I call him my Little Bear. He loves to growl and it reminds me of a cute baby bear trying to communicate with his own foreign language. He continues to get better and better everyday. His blood pressure has been high since his return from Primary's. They're not quite sure what the cause is, that's something they're still working on. He is also still on room air, no nasal cannula, and is doing extremely well. No longer are our eyes glued to the monitors watching his heart-rate, respiratory rate, and oxygen saturation for any slight change. We're still working on eating. He shows all the healthy cues and will even breast/bottle feed for awhile.

Home is calling us. Home is where our heart is and where we want Lincoln to be. It's only a matter of time. His room is almost already. The bassinet is empty, waiting by the side of my bed. .....His family is ready and waiting.

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.....this heart wrenching story with me:

Bronson

...it happened...

The clouds parted, the HEAVENS opened, and we got the approval for the 2ND time, for Lincoln to be transferred back down to our hospital!! I can't believe this is really happening. After speaking with my insurance company MANY times I was under the impression it would be covered. On my last phone call to them they informed me it actually wouldn't be approved. I was super upset, but knew that it was what it was and I had to deal with it. I cried, then I got over it. Just when I had begun to adjust to the thoughts of what my new "hospital life" would be like, I got spun in a different direction again and found out the transfer WOULD be able to happen!

Good news on a good day :) Today is Lincoln's due date. Does it make me sad? No, but if I were in the same frame of mind when he was first born it would make me super sad. I am a little disappointed that Lincoln hasn't made it home by his due date, but as a friend once told me "This is Lincoln's story and it's going to be a beautiful one." [yes M, you said it....HUGE impact on me:)]. He's his own person and he will make it happen in his own time. Lincoln had a ROUGH start and TWO surgeries. When we had been working on breastfeeding for a week, I was starting to get a little frustrated that there wasn't a ton of progress. When he was wide awake he was definitely interested and actually did pretty well. But it didn't take very long until he was asleep again. I had a talk with one of the nurse practitioners and mentioned maybe there was more things we could be doing to make him be more awake, this was when he was around 36 weeks gestation. She kindly reminded me that "maybe we should cut Lincoln a little slack. He technically wasn't supposed to be born for another 4 weeks or so and he was a very sick little boy at birth. Also, with his condition with his head, he probably didn't feel very well and didn't feel like eating." I quickly came back down to earth and realized all of that was very true. With Hydrocephalus, there is a lot of pressure on your head because of the extra fluid. In turn, that would definitely make anyone not want to eat:headaches, nauseau and sleepiness??? Ummmm ya...I wouldn't want to do ANYTHING but sleep!



So, here we are today....waiting for Lincoln to be transported back by us. He is off of the nasal cannula and doing well with that! The most important step to be accomplished in order for him to come home is upon us. He has to take his feeds 100% orally. No more feeding tube for my boy! We can do this....we're so close I can taste it!!!

Settled In

Lincoln's surgery is accomplished. It's quite amazing what technology can do. The first surgery he had was to place the reservoir which was a temporary fix to his problem. They were trying to give his body time to hopefully heal on its own. Sometimes it happens, most of the time it doesn't. They removed the reservoir on his left side and placed the shunt on his right.

Reservoir

Shunt

We were able to speak with the neurosurgeons first-hand and found out that as long as there is no mal-function or infection there would only have to be one surgery to replace it. He could grow to be 6 feet 6 inches and it would function with his size. We also found out that about 50% of shunts fail within the first year. BOO...I hope we're the 50% with it being successful.

The neurosurgeons signed off on him to either be discharged or transported back to Utah Valley. Since he's not ready to be discharged quite yet, we are waiting on info from insurance to find out if he's going to be able to go back to our local hospital or not. HOPEFULLY they will allow it. It could take him a good two weeks or so to bounce back from the surgery and get eating down. I think he's feeling pretty well for the most part though.

He got in some good cuddle time with Grandma Skeem this weekend

And he got all settled in his new crib

Big boys cry!

Sounds mean, but we LOVED to hear him cry. Didn't love that he was in pain though. To us that means he is getting bigger and doingthings babies do. This video was taken right after his surgery. He wasn't very happy. I'm thinking his head was hurting a little bit, but they got him some pain medication right away.

...poor girl...

Scottie, Savana, and Luke all bowl in a league on Saturday mornings. This last Saturday we were just getting ready to start practice. Savana went to get her own ball, but when she returned a man turned in front of her. She tripped over his feet, dropped the ball and landed on the ball. She cracked her chin right open. The guy felt horrible. At first I didn't see anything, but knew something had to have happened because she looked like she was in pain. I lifted her chin and saw the big open wound. I knew right away she would need stitches. We ran her over to the instacare in Provo, but there were about ten people ahead of us. Instead we decided to go to the one in Springville where there was only about three ahead of us. They examined it and determined she was definitely in need of stitches.



She was quite nervous. She only shed one little tear when he stuck the needle in to numb her chin. After that, she actually took a little nap. We were so very proud of her



We only got the after pictures. Trust me, I thought about before pictures, but couldn't handle it.
The doc actually suggested we get out the camera and take some photos so I could put it on my blog. At the time, I only had my camera phone and it did the job! He did a good job repairing it. Because he did the finer thread, she ended up getting 7 stitches. We felt so bad for her, but were so proud of how brave she was.

Teddy & Me

We were given a suggestion to take the kids to the store and pick out a toy for Lincoln. We found a little teddy bear and thought he would LOVE it.

....I'm thinking he really liked it!

Poor little guy.....he finally was scheduled to be transported back up to Primary's for his surgery. It's final, he needs the shunt. I wish it weren't so, but if it means relief and a resolution to his problem, I'm fine with it. He'll travel up there on Wednesday and have the surgery Thursday. The reason they determined he needed it was because his ventricles aren't decreasing in size. He's producing the fluid like he needs to, but the fluid isn't draining normally like it is with you or me.
We're not quite sure how the whole discharge process is going to work. I'm hoping he will only have to stay up there for a few days and then can come back to our hospital and work on feedings. Once we have the feedings down......home sweet home for Lincoln.... *hopefully*