Happy Birthday, Everly

Saturday, March 1, 2014

Happy One Week Birthday!!

Our sweet pea just celebrated her one week birthday a few days ago and today is 10 days old. We are cherishing every moment and enjoying each day. It seems odd to say the word "enjoy" in conjunction with what we know is to come but that is what we are doing. The word "enjoy" by definition is to "take delight or pleasure in" and that is exactly what we are doing. We enjoy changing her diaper...even the stinky poopy ones. We enjoy giving her feedings and all the necessary steps needed to do so through her tube. We enjoy watching her sleep and make frowny faces as she does. We enjoy doing her "hands on" care at 8, 11, 2, 5 around the clock and wouldn't miss it for the world. We enjoy doing what the nurses normally would like taking her temperature, measuring her belly, weighing her and the like. I even enjoy the round the clock, every 2-3 hours, pumping sessions.

See, this time is about enjoying her now...in the present...in the here and now. That's where we are and we are enjoying her.
She has such a soft personality. It is fun to see how she reacts in different situations. For example, yesterday we gave her a sponge bath and she literally slept through the whole thing! Granted, her bed was heated but still it was funny to see that it didn't bother her in the least. She especially loves her little head of hair washed and arches upwards as you stroke the hair with the comb. She rarely fusses and cries and is content in whatever position you put her in mostly. We would love to remove the tubes and wires and all the connections, but we make do since through it all, we get to hold her. That is the sweetest joy.

 Sleep kangaroo style...can't beat it!

I love bedtime the most because that's my personal kangaroo time with her. Thanks to my kangaroo shirt, I can safely sleep with her through the night. Albeit sitting upright all night in a chair, I'm holding my daughter as close as I can and for that I'm grateful. She doesn't make a peep and we are both in a state of contentment. For these moments, I am thankful. What a blessed momma I am!

 Jimmy learning to measure and insert her ng feeding tube

We aren't home yet but hope to be by mid-end of next week. Lots of arrangements have to be made for machines and equipment she'll need. Training sessions will need to be had by myself and Jimmy so we know how to use said machines and equipment. Jimmy actually learned how to insert her ng tube yesterday and we both know how to check for proper placement and residual from it. We know how to stimulate her when she forgets to breathe. All this to say, that it will take a bit in order to get us home. She is completely off IV feedings as of Friday night and is on full breastmilk now. That was also a requirement before bringing her home since we didn't feel comfortable bringing her home on IV fluids. She is slowly gaining weight which isn't necessary to get her home but is great overall. She weighed in tonight at a whopping 3 lbs 15 oz...hoping for 4 lbs tomorrow!

Silly boys photobombing little sweet pea's after bath photo!

And finally...Last week from Tuesday, the day we found out the diagnosis, through Friday have been filled with meetings. And when I say filled, I mean jam packed. I'm sorry I haven't responded to some direct questions, texts, emails, and calls as during and in between these necessary meetings, I attend to Everly and her needs. Thank you to everyone who has sent supportive messages and reached out. Please know that we have received and read each and every one. Due to the situation, we haven't been able to respond personally but please keep them coming as they are incredibly important to us. I plan to print all the messages and put them in a special book at a certain point. Knowing that we have that love is healing and therapeutic for us all. Thank you!

And now finally...I would be remiss if I didn't take a moment to acknowledge the extraordinary situation my parents are in and thank them publicly for their sacrifice. Initially as you know from my post on 2/24, Jimmy and I planned to go home for dinner each night and even Jimmy was to stay overnight every other night so my parents could take the night off. However, we received the diagnosis the day after so neither of us felt comfortable leaving her so we ditched the idea of going home for dinner. In our absence, my parents have completely stayed at our home and stepped in to take care of the boys. They bring them to the hospital each day to spend time with Everly and with us. They bring us supplies, clothes and whatever else we need. The hardest thing was the day we found out, we opted to tell the boys the following day as we were still digesting the news. However, both my parents had to return home to the boys that very night and feign normalcy even though they knew and were devastated themselves. My heart broke for the position they were in for over 24 hours. They are saints and the most stoic people I know. Mom and Dad, you will never know the importance of the role you have played during this time for all of us. While I know they would prefer to just stay at the hospital and spend countless hours with Everly, they allow us to and they attend to the boys. Thank you for your sacrifice!
"Give thanks in all circumstances; for this is God's will for you in Jesus Christ." 1 Thessalonians 5:18

With love and appreciation,

Crystal & Jimmy

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