From our family to yours...

Merry Christmas!!!

This is not our entire Christmas card, but it speaks to our exciting news! More to come about this...

Oh, and if you did not receive a Christmas card from us and you typically do, it is probably lost somewhere in the USPS system. Let me know in the comments or send me an email and I will gladly send another one.

Love to all and may all of you have a beautifully blessed holiday season!!

She cracks us up...

...and we have our hands FULL!!!

Oh, EC! Our sweet, loving, sassy, intelligent EC! Those of you who know her already know we will be on our toes until this girl is 30! Ok, so maybe not that long, but wow! I love her mind!!! It is a blessing to see little minds grow. It never ceases to amaze me with how absorbent the mind of a toddler really is. And EC is no exception. She remembers everything, but then she also puts it in her own little world and the things that come out are...

hilarious: at bedtime she usually has a preference as to who will read stories, sing songs and say prayers with her before bed. The other night Daddy offered, but she obviously had her sights set on spending that time with Mommy. Her way of letting us know... "Mommy lay with me. Daddy go wash dishes."Another frequent way she tries to redirect Mommy and/or Daddy pertains to when she  likes to have the room all to herself (who knows why, but I am guessing it usually means she is up to something or looking for a place to fill her diaper). What makes it HILARIOUS is the way she puts the phrase, "you wanna go talk Mommy?" or "you wanna go talk Daddy?" into a question. No thank you, ma'am. I would rather sit right here and see what mass destruction is about to hit our home!

funny, but shouldn't be funny: at naptime she likes to distract and attempt redirection on me as if I had no idea what she was doing. Recently I was cleaning up after lunch and said, "EC it's time to go take a nap." Her response of "I don't think so ma'am" caught me off guard. While extremely inappropriate, I had to make an exit so I could go laugh. Another similar phrase she pulled out of her thinking cap was "not a chance." Really? Where in the world did she hear that? No idea, but it has officially landed in the catalog of EC trying to pull one over us thinking she can be cute, funny and get her way. Ummmmm. NOT!!!

frustrating: "that's not fair" is a phrase I have heard numerous times recently. Again, not sure where it surfaced for her to latch on to it so tightly, but she is definitely trying that one out for size. And given the tone of voice that typically embodies the phrase, I would say it's 'size' is about the same size as her timeout spot. :)

just plain 'ole cute: "how about.... that one" comes out ALL THE TIME! What really makes it adorable are the inflections and expressions. "go to store. get groceries and get pood (food)" pretty much comes out every single time I take her out with me but leave the boys at home. "take Bubby (D's nickname at home) wit us" and "go Bubby's apoinmet (appointment)" are both phrases that I hear daily. She treasures her brother and is SUPER protective of him... except if it interferes with her playtime, ha!

And, oh, this barely scratches the surface. That girl is full of EC'isms! We are in for a wild, funny and trying ride! It's going to be a blast to look back at these years and remember how she kept our days interesting. Our sweet pea, pumpkin... we love her something fierce!!!

Hopeful despite some discouraging news

I have waited a few days to post this as it took me a few days to not become completely overwhelmed with emotion when thinking about it. Call it pregnancy hormones. Call it emotional exhaustion. Call it a mama's heart sinking a little in the wake of news less than positive regarding her baby. Call it whatever you will, but discouraging news is hard when it pertains to your kids. IT JUST IS! So, what am I referring to exactly?

After an encouraging visit at the ENT doctor, D's therapist thought it safe to move forward with trialing a faster flow nipple. This would put him on a level 2 nipple that is typically used for 3 to 6 months of age infants. He is over 7 months, thus we would be much closer to where we needed to be. The trial would allow the therapist to see if D was still able to pace himself adequately when flow increased. This would also speak to how his coordination has or has not improved overall. If things worked well with the trial, we would resume feedings with a level 1 nipple, but we would begin to thin the liquids he ingested. Once we would were able to have D swallow thin liquids (meaning water consistency, no thickening agents), we would proceed to a faster flow nipple.

Well, as you may have guessed already, the trial did not go smoothly. While D never showed signs of aspiration (which is a praise), he was not able to manage the liquids in his mouth safely AND his coordination, for lack of a better phrase, "went out the window" relative to his ability when on a slower flow nipple. Obviously that was hard to hear... very hard to hear.

What exactly does this mean? For now it means we do more of the same. We continue to monitor his pacing (amount of sucks to every breath and swallow). We continue to work on "pharyngeal awareness" (D's ability to manipulate what's in his mouth due to sensories being properly triggered), and we work on his overall strength in all areas affected by swallowing - starting from entering the mouth at his lips down to muscles in his torso.

So, while I was discouraged, I have to also remember how far we have come... and that is encouraging! Patience has not always been a strong suit (thank you, Honey, for that, hahaha), but I cannot help but be anything but grateful for how far God has brought us. I keep a picture of our little man on my screen saver of my phone of days when he had an NG tube. It's humbling to think of the things the Lord has done in this sweet little boy's body. My heart soars with gratitude and dances to the tune of praises. It's easy to get lost in how normal things look, but at this point, more of his little life has been spent with an NG tube than without it. And I elate in those tube free days. May God receive the glory for them. May any discouragement I have due to a poor trial run be overwhelmed with remembering His goodness and faithfulness.

ENT Visit

Today our little man saw an ENT specialist who specializes in pediatrics. I love the doctor, which is such a huge blessing. He offered a great deal of his time to discuss all little man has been through thus far so we could come up with some answers as to why D still struggles with the congestion. Unfortunately, there doesn't seem to be any really clear cut answer. That was not exactly what I hoped to hear, but honestly, thinking about it now, this could very much be a blessing. My nerves were somewhat on edge today as I feared they would want to revisit an NG tube. Don't get me wrong, we absolutely want what's best AND safe for D, but life with an NG tube is not ideal. We worked so hard to achieve the milestones in his feeding and swallowing therapy, so naturally we truly don't want to go backwards. And PRAISE THE LORD, an NG tube was never mentioned other than discussing D's past. The doctor seemed very surprised by the fact that little man had never experienced any respiratory illnesses, such as pneumonia, from all the aspirating in his early days. And quite frankly, we are so extremely fortunate and can only attribute that to God's hands and protection covering our sweet baby. This lack of illness helped rule out some concerns with the ENT doctor, so another huge blessing! So, all in all, the doctor did not convey too much concern regarding the congestion. He does want to see D back in a couple of months. If all is not clearing up by then, as far as D's reflux and his feeding/swallowing issues are concerned, then we may need to move forward with some invasive testing. But, for now... we are clinging to the blessings and praising God for all the progress our little man has made. Thank you for your prayers. We will continue to update! Love to all!!!

Another update!

I thought it time to rejoin the world of blogging. It's been far too long and maybe this will be a better means to provide updates to those of you who would like to read what is going on with our family. As we have conveyed in the past, we are extremely grateful and humbled by the love, encouragement and prayer support received over the last year. It truly has been an emotionally exhausting time, but your prayers undoubtedly made a difference!

Many of you know, since the last update we moved! We loved the Rockwall area and miss it tremendously, but now we are trying to settle into a new place and make it a home. It's been difficult in some ways as D's therapy schedule is quite demanding, and of course having little ones doesn't lend to productivity during their waking hours. But, you know, that is ok. I will ALWAYS have a to-do-list a mile long (that's just how I operate), but my 'littles' are only little once. I cannot deny my OCD inclinations surface at times and I wonder how in the world such chaos exists in our house, but diaper duty soon calls, and their schedules become the focus again. Being a mommy is simply the hardest, yet the most rewarding thing! I know. So cliche. Yet, so true!

As for the update on D. His physical and cognitive development seem to be on target, which has always been a concern due to not knowing everything that caused the issues in utero. However, we continue to see God's goodness and faithfulness. D's ongoing progression truly speaks to how our Heavenly Father holds, loves and nurtures. As for feeding and swallowing struggles, our 'little man' currently sees a therapist four days a week where we work on pacing (the ratio of how many sucks on a bottle to a swallow and a breath), muscle strength in his cheeks, neck, and upper torso. To be honest, when we moved and started therapy here, I was quite reticent with their approach. D did NOT care for it! I, too, held reservations about it's effectiveness. However, we are a month into therapy and D's ability to pace and swallow correctly does seem to be improving. Praise the Lord for that!!! He gradually warmed up to the therapists as well, which was a blessing. A screaming baby for therapy really is not all that productive, as you may imagine. Please continue to pray for progression though. We cling to these good things, absolutely, but we have many hurdles still in front of us. D needs to learn how to take liquids at a faster rate as we are still on a slow flow nipple. But equally important, he needs to be able to drink thin liquids. At this point, we have not been able to introduce water. If things do not progress soon, we will have to thicken water so he can drink it. Obviously this would be far from ideal. Prayers appreciated!!

Another prayer request... D has an appointment with an ENT doctor this week. He continues to sound 'congested' when taking a bottle. We, along with his therapists and his new pedi, are somewhat disconcerted by this. The congestion should have dissipated after the NG tube removal, yet this remains the same. We hope to find some answers with the appointment. Please pray for his appointment to go smoothly and for us to have something more tangible to work with as to why the congestion continues to be an issue.

As for our little EC... growing, changing, growing, changing and repeat! Watching her this year has been incredible. To see her adjust to a completely new paradigm (new sibling, new role in the family, no longer the only child/no longer a baby, new place to live, new type of bed, etc.) has been enduring, frustrating at times, a huge blessing though and a time filled with joy. EC rarely goes to bed without giving 'baby brodder' a kiss and a hug these days. That took time, folks... lots of time! It is the sweetest thing ever! Unfortunately with all of baby brother's issues since he was born, she had to grow up a little faster in the last few months than this mama cares to see, but don't get me wrong, she still has her very much 2 moments, if you know what I mean. :) I will take them though. This is a precious stage. The way her mind works amazes me!! I am sure most parents think that (and I hope they do), because truly to see a child develop and see how amazing God's creation of human life is... to watch that take shape and mature before you eyes... that is a gift. A truly beautiful gift!

I think that pretty much covers most things for now. Thank you for loving our family enough to pray. Thank you for loving our family enough to care about the updates. Thank you for loving! We love you!

With utmost gratitude and love,
N&K