Monday, March 10, 2014

Spring is near

It's almost Spring time! I can smell it in the air. After an extremely long winter, we are all ready to spend time outdoors. We all have cabin fever, and can't wait to take the kids out to the parks, pool, and take a mini family vacation. That's right...VACATION. We so need some fun time. I got the o.k from the doctor as long as Natalie is healthy. We don't plan to go far, but I will take whatever we can get. Maybe a trip to the Oregon Coast is around the corner.

Where to begin....Natalie is getting so big, with a whopping 17lbs. I just love her chunky cheeks, belly, and legs. If she only realized how adorable she is. She is catching up to many milestones. Although her head bobbles, and she is not totally sturdy, she can sit unassisted for a bit. She reaches for almost everything, and just adores her big brother. She smiles mostly at him, and occasionally at Michael and I. She is definitely a Mommas girl. She reaches out for me to pick her up all the time, and cries if I leave the room. Yes I hope the phase doesn't last forever, but right now I am relishing in the baby love.

Can you believe she is 8 months old? She has been home for 6 months, and so far we haven't had any major hospitalizations. Just another month and the Flu and RSV season will be done. RSV is at the height right now in Bend, so we are taking extra precautions. We're currently fighting to get her last RSV shot. It seems that our Oregon Health Plan is more of  pain than a help. Providers are very reluctant to give Natalie service. It took over a month to finally get a helmet for her. We will have it fitted next week. It's pink, and I of course we will get some cute stickers for it. 

We are only doing an Echocardiogram every other month. Yay! We are watching her heart closely. She is not showing any signs of heart failure, and is thriving. For now we are rejoicing, and are so grateful that she is getting stronger.  Please know that it can be anytime. Heart failure usually occurs quickly. It can be weeks, months, or even a year. It's still very difficult to say.  As long as Natalie continues to grow and get stronger we are in better position for her next surgery. 

We leave for Portland next week. Natalie is getting tubes placed in both ears to elevate fluid build up. I am hoping that her hearing improves in both ears, and she will feel better. Her left ear has had a constant effusion since she was one month old. She has been treated twice for ear infections as well. We are also trying to schedule an MRI. It's challenging to due multiple procedures because Natalie requires a special Anesthesiologist. Please pray that her procedure goes well, and she comes off sedation fine.

We are attempting our first g-tube weaning trial. I have no idea how successful we are going to be, but I my gut feeling is that we must try. She is not nearly as interested in food, so I want to capitalize on any remaining interest that she has. Her stamina and coordination has improved greatly, so we are going to see what she can do. The most challenging part is going to be teaching Natalie to eat when she is hungry. She has never really experienced hunger. Our plan is to reduce her nightly feed so she wake up hungry. Of course we can only push her so much, but I am confident that she can do it. If she loses more than 10% of her weight we will stop and try again the following month. I am both nervous and excited. It's going to be hard to let her be hungry, but it's the best thing for her long-term.
We also are going to be doing even more therapies. We are going to begin vision therapy, and do outpatient physical therapy at the hospital. It's going to make us even more busy, but she really needs more care. We are wanting to focus on building her core muscle strength and improve her head control.  The extent of Natalie's vision loss is still not known. She is compensating to see to her left, but we are noticing her left eye is slower to focus. I am looking forward to working with a vision therapist to see how we can improve and strengthen her left eye. Good things take time...

We are going back to church next month! I have never gone this long without being in a church community. I am grateful that we God has kept us reasonably healthy but I sure do miss the fellowship of other believers.

Please pray that we remain healthy this month, and Natalie will get her RSV shot. Also that her tube surgery goes well next week. We will be gone from 17-20th.

Love The Pierce Family

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