What's Going On...

 Morning time on the back patio. Love her!

Since my last post, Everly has stayed pretty much on a steady course. She continues to grow and gain weight. She enjoys the therapy exercises we do together. And thankfully, she has not had any more illnesses since her pneumonia at 3 1/2 weeks. She is currently just tipping the scale at 7 lbs 3 oz and is eleven weeks today. She's celebrating day number 78 today!  

I have gotten into a daily habit of feeding her on the back patio for her first meal of the day at 8:00 a.m. The birds are singing, the weather is pleasant and I can have some quiet time with Kendan as well. It's just the three of us up at that hour so it's a good time for bonding. Kendan and I have enjoyed listening to all the various birds flocking to our trees and backyard, and we've actually gotten to hear woodpeckers on most mornings. Everly is awake for part of it but the lull of the bird songs is just too calming for her and she dozes soon after. Next to actually waking her up every morning, this would be my next favorite time of the day.  

 

Morning time on the back patio with my two youngest loves. 

Love spending time with Kendan and Everly first thing in the morning. 

Our days are a jumble of repetitive activity...feed, pump, school, repeat and repeat. Only the school part tapers off at a certain point each day but the rest continues. Due to her reflux and partly her NG tube acting like a wick, we have to feed her slowly every three hours so to keep the reflux to a minimum. She eats at 8, 11, 2, 5 and on and on. Each feed takes about an hour and 15 minutes from start to finish. She is fed via a syringe by hand during the day because we use breastmilk and the feeding pump wastes too much when you have to prime it to get the milk through the tube. So after the feeding process, I pump and then there's about an hour in between the cycle repeating. Again and again and again. I'm so thankful when my parents can come over to take one of the feedings over or when Jimmy can do one because that frees up a bit more time. Like all mothers, I've learned the fine art of balancing feeding her while simultaneously reviewing the latest vocabulary words with one of the boys. In the hour in between feedings and pumpings, I do the one on one lessons with the boys during the day and in the evening try to squeeze in my P90X3, laundry, dinner, straightening up, her evening walk, family time and such. It is an arduous schedule and uninterrupted sleep is a thing of the past. To ensure her growth, the three hour feed schedule is around the clock and will remain so. It is well worth every lost moment of sleep when we see her weight gain on the scale, though!  

 

Ala...aka Guard Dog Extraordinaire...standing watch over her baby. So sweet! Love that dog!

Those hours not being spent feeding are important in our house. Those are the times when we get to enjoy her and shower her with lavish attention. Garren loves to carry her around the house while Kendan loves to get right down with her on the playmat and read to her. My dad loves to also carry her around or rub her hands and talk to her. My mom enjoys playing piggy toes with her and talking to her about God. Jimmy is the night rocker and patiently plays the sandman role. I personally like doing her therapy exercises when she's awake. And Ala, well, she just enjoys her role as guard dog-mama, a role she has now perfected.

Kendan entertaining Everly with an airplane show. He was so sweet that he even asked me if it would be okay for him to do it. I told him I thought Everly would LOVE it and she did!

We have no real typical day here, though, because of scattered doctor appointments, hospice nurse visits to the house and therapy sessions. Each day and each outing must be planned out in advance to make sure we have her milk heated and packed in a thermos, my pumping necessities in case I need to express in the van depending on how long we are gone and all her supplies for each feeding and of course, her pulse ox machine and oxygen tank. So, there is no spur of the moment hop in the car to head out somewhere with the amount of preplanning it takes to head out.  

Speaking of feeding, prior to our current experiences, I would have had no idea how a tube fed baby is actually fed. So, for the benefit of anyone like myself 78 days ago, let me explain. We must use a stethoscope to listen to her stomach at the same time you push a small amount of air through a syringe into her tube. This ensures you are feeding her directly into her stomach. If you're not careful, the milk could end up in her lungs which would be deadly. This procedure must be done before each and every feed. Once we've ensured correct tube placement, even though we don't actually move the tube, we then check for any residual milk from the last feeding. If it's too much, we must alter the current feed so as to not overload her tummy. Then we must fortify her milk with extra calories from formula to help her gain weight so that is added to her milk. From there we heat up her milk and using the syringe the milk is slowly pushed through her tube. To help with reflux as I mentioned earlier, we must do this extremely slowly; therefore, this process is about an hour and fifteen minutes long.
 

I just wanted to explain this because unfortunately this process coupled with my need to pump certainly hinders my and our ability to be out and away from the house for any length of time. Our family trips to the beach literally took serious planning and coordination. It is a real effort to get out of the house but the reward of being able to visit friends or just get out of the house is so worth it! (FYI: Doctor's visits do NOT count as an "outing" as it pertains to enjoyment or time away...as much as I do love our doctors.) I do try to keep visits or excursions (ie. hiking) close to home so that most of the time is spent visiting with friends or the actual activity and not on the road which in and of itself is stressful with a beeping pulse ox machine. Hope that helps explain why I need to stay as close to home as possible!
 

On another note and something that has been on my mind and heart as of late is my business life. One of the things that has changed the most in the last eleven weeks, besides, of course, having an adorable baby to snuggle and love, involves my professional pursuits. For the past twenty years, I have tutored students year-round only taking a week here or there for a trip or two weeks after Kendan's birth 7 1/2 years ago. In addition, I have provided standardized testing and portfolio evaluations for fellow homeschoolers for years. I also was a leader in our cherished homeschool group and was a teacher in our co-op. However, in light of Everly's needs, I had to make the emotional decision that I would not able to continue with any of these roles at this time. That absence has created a large void for me as it was something that defined me outside of my role as mom. I do know my calling now is to devote myself to Everly and the boys and continue to homeschool and the two combined is a full time job but it doesn't make the loss of my professional status less difficult. I love what I do professionally and my homeschool involvement and take great pride in my work so to not have it is hard. So, to all of my clients (really my friends!) in any capacity, I realize you have already heard this announcement but please know that I miss working with you and your children. And to all my homeschool friends, please know that I miss my time with you and your families. I miss attending Monday co-op, teaching classes and planning activities for SHINE. I thank you for your understanding that at this time my focus must be centered on my children and doing what is best for the family. There will be a time when it is right for me to return to what I love but for now know that I wish you the best! 

Being spoiled by biggest brother

I would be remiss if I did not end this post with mentioning how insanely grateful we are for every day we have our sweet pea. We are thankful for that time we have feeding her...thankful for baths we get to give her...thankful for the walks we get to take her on...thankful for the diapers we change...thankful for the faint cries she makes...thankful for each facial expression she makes...just thankful for the time we are spending with her and how much we are getting to know her personality. No sacrifice is too big for this time we have with her nor will it EVER be. To wake her each morning and know that it is yet one more precious day we have to hold and love her is priceless! We know that we have been given a gift and we pray that we are mindful on a daily basis to honor it.


"This is the day the Lord hath made. Let us rejoice today and be glad!" Psalm 118:24


And we are.
 
With continued love and appreciation,
 
Crystal
 
P.S. Everly has made some new friends and we would like to encourage everyone to include them in prayers. Melanie is a sweet baby girl from Orlando who is currently in the hospital recovering from a procedure she had done a couple of weeks ago. Elisabeth is an almost one month old adorable baby girl from Texas who is rocking the Trisomy thing. Thanks!


One more thing...I have been running through all the thank yous I need to send out in my head for weeks now and have been working on finding the time to sit and work on them. Please know that we are thankful beyond words for all the meals, gift cards, donations, gifts, cards, notes and messages we have received over the past almost three months. It is VERY uncharacteristic of me to not be prompt with thank you notes and I believe I'm breaking out into hives just from the mere fact that the cards aren't done yet. LOL However, I wanted you all to know that I am getting there slowly but surely and that I have been keeping track but free time to write them out like I want hasn't presented itself yet. I'm confident at some point it WILL happen. In the meantime, please accept our thanks for your generosity.