Emry Update

I know these post are few and far between, but I seem to have little time to do things like this these days... as if I felt like I had much before now :)  I know it is past time for an update on Emry Braylin, so here it is...

We went to the cleft pallet specialty team on Monday the 6th where we met the team that will be working with Emry through this process. There were about 6 doctors that were there that day and 2 others that we will have a relationship with that were not present.  It was a little overwhelming, but very neat to have all of them in one place rather than trying to go six different places.  The main one, Kelley, was great and explained that with Emry's airway issue, (called Pierre Robin Syndrome where her tongue obstructs her airway due to a recessed chin) we will likely wait until she is 18 months old to repair her palate.  This will give her more time to develop out of this syndrome before anything invasive is done.  Yesterday, the ENT that is also part of the team affirmed all of this, agreeing that her syndrome, though mild, is not something to ignore and that surgery later rather than at 12 months was preferable in her case.  

We were released from the NICU with a respiratory monitor that we were to have on her at all times indefinitely with instructions to see the Pulmonary specialists 2 weeks from dismissal.  Dr. Kelley, however, decided that he wanted a sleep study to be done on her in order for him to see more accurately what was going on with her respiration.  We were admitted into Dell Children's Hospital for 24 hours where she was hooked up to all kinds of monitors.  They made her lie on her back for 6 hours of the study which meant that I was hovering over her crib holding her pacifier in for about 5 out of 6 of those hours!! She did fine, even on her back, as long as her head was turned to one side or the other.  After the results were studied, the doctors dismissed us from the at home monitor saying that there was really no need for it!  YEAH! We are so glad to have a wireless baby. I can not tell you how many times one of the older children called for me and I about ripped the monitor out of the plug outlet... forgetting that I was on a short leash!  We will get the full report of the sleep study on Monday at the Pulmonologist (her respiratory doctor).  

Basically right now, we are in a monitoring and waiting game as we allow her body to naturally grow and develop on it's own.  She will likely outgrow the Pierre Robin Syndrome within the first 3 years of life and hopefully we will see a big difference within the first year.  All of her doctors want us to report back between 6 weeks and 3 months for the first year to monitor her unless we encounter complications.  She already struggled with even the mildest of congestion, and since it is allergy season here, we've had plenty already. Her saliva gets thicker making eating, breathing and swallowing all at the same time very hard for her.  Her weight has fluctuated up and down in the 8lb range over the last 2  1/2 weeks.  We have never expeirenced a small, newborn like baby at one month old!  I always wanted a tiny baby :)  since I've had 2 that we like toddlers at 2 weeks :)  

Emry is such a good baby and is sleeping well.  I have to wake her often to feed her and she goes back down easily at night.  I am thankful for that!!  She is starting to coo a little and has given us a few precious social smiles! The other children absolutely love her and are all very good with her. We have been especially amazed at how gentle and motherly Keirah is with her.  They are all very affectionate with her.  They all seem to understand that Emry is a precious gift from God with a "special"  mouth.  With some exceptions, they have generally been very patient with me and the time spent feeding her or pumping for her.   

I feel like we are starting to adjust to life at home.  We've had some very encouraging days lately where I've felt productive at something other than pumping :)  Aubryn is doing school again at home on Mondays, Tuesdays and Wednesdays while Keirah is at her school.  Leif is LOVING the new playscape that my parents and grandparents bought for the kids' birthdays.  It has been a lifesaver for me lately!  I am still pumping 7 times a day and feeding her 8 or 9 times daily.  So far I'm still getting double the milk she needs so I'm about to have to invest in a deep freezer!  God has been good...

Really, I have to close this post to just praise Him for all of his goodness to our family. We look back and realize that, though this was all shocking and hard to absorb at first, we are so blessed! There are many of you reading this who have or are going through situations way harder than this.  I see the Lord showing me is power and strength daily and he's teaching me to laugh much more often :)  I see how beautiful of a gift Emry is and I would choose her over and over and over again.  I feel priviledged that God saw me fit to be her mother.  I know I will fail so many times in raising her and all of my kids, but I am honored that He has given them to me. I pray that I may steward them well.  We had the opportunity to dedicate Emry and ourselves to the Lord at our church already and prayed Psalm 139: 13-17 over her.  

"For you created my inmost being, you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you (maybe us... but not Him) when I was made in the secret place. When I was woven together in the depths of the earth, your eyes say my unformed body. All the days ordained for me were written in your book before one of them came to be.  How precious are your thoughts about me, O God.  They cannot be numbered!"

Thank you God for my four precious children.  I know they are yours... and these days will pass so quickly.  Help me to remember this in the hard moments.  I want to honor you as I shepherd them towards you.