This one's for Ari! Sorry I haven't been
posting any pics of me with baby...I'm usually taking the pictures!
Thanks for the reminder to put myself in them, too, Ari. Well, we just hit another milestone with little sister...3 months! That's right...92 glorious, love-filled days with this precious miracle! It is almost still unbelievable in a sense that I sit here typing this because as I know I've said many times already, there was no expectation that we would be loving on her all these days, weeks and months after she was born. Being sent home from the NICU to offer "love and comfort at home" doesn't necessarily give you hope for an extended future. However, I have trust in God's sovereign plan and though we don't know when He will call her back to her heavenly home, we remain grateful for each moment we are blessed with this baby girl.
Things are smooth sailing for us right now and we just couldn't be more content. She continues to be in "good" health...gaining weight on a nice steady curve, keeping safe from yucky germs, and working hard to strengthen her muscle tone. Our last cardiology appointment a couple of weeks ago showed no change in her heart or pulmonary hypertension. This continues to be a blessing because the PH offsets the effects of the large VSD (hole in her heart). Without either one, things would not be going as well. She also saw Dr. Graham, our pediatrician, this week and got a good report from her as well. Weight increase is overall sufficient for her needs and is growing longer as well...20 3/4 inches up from 17 inches at birth! We'll head back in a month for another check up to both doctors.
She also had a GI doctor appointment a couple of weeks ago to discuss her feeds and a possible GTube surgery. We were very intent on doing the surgery based on all the pros that it would offer Everly. However, when we met with our cardiologist, she gave us the downside. As much as we would like to look at Everly and say that she looks like any other baby, the harsh reality is that she is not. In relation to this procedure, it presents rather severe risks for a baby with Trisomy 18. We were actually under the impression that it was a simple endoscopic procedure, overnight stay and then home. Unfortunately, that does not appear to be the case with her. It would require intubation which makes us nervous because it is entirely possible she would not be able to be extubated after surgery. Second, the stay is closer to a week and certainly not overnight. It would require a special cardio anesthesiologist and would be done in a separate area where higher risk procedures are done. Not that the last reason is completely awful but it certainly raises concern for us. All this to say, that we have at this point opted to hold off on the procedure and revisit it at a later time. Since the NG tube was inserted about a month and a half ago, she's only pulled it out twice which isn't too bad the GI told us. I wish we could snap our fingers and have the surgery done and over. But we'll reexamine as she gets older or if we encounter problems with the NG tube.
So, believe it or not, we are still in newborn clothes and diapers! Boy, if I had known that, I would have stocked up on the newborn sizes months ago. Since we've worn and reworn and then reworn again all her clothes, my mom just "sacrificed" and went shopping online for some fresh NB sized clothes. I can't wait to get them because they are so incredibly cute! As if she needs an outfit to make her cute, right?? However, there are some new dresses coming with new colors, new patterns, new designs. Oh, so exciting! AND, mom ordered the most adorable new swimsuit for Everly and is going to make her look even more scrumptious! I'll be posting some of her new things as soon as I get them in my hands for sure! Poor Everly may be have to give up physical therapy for a day to model outfits...haha!
So now for a few updates on the rest of the family...
The boys (and I) are so lucky to have some friends who have either invited them over for some playdates (or "hang outs" as my 15 year old insists I say instead) or have taken them on outings. How fantastic is that? Thankfully, the boys are well-behaved and respectful so hopefully that makes the extra company all the more pleasant. It has been a relief to know the kiddos get some fun days out! So, here's a shout out to our friends!! Love you guys!
We as a family are still doing P90X3 every day; although Kendan and my dad get their exercise in the pool instead, poor guys. It's tough but we are each getting stronger daily. It is a perfect stress reliever and hopefully is setting a good model for the boys. We actually really like the program and while we must modify the modifications, it's still worth it! Hoping for some "after" pictures at some point, too! I'll keep you posted.
Tomorrow we plan to make a big trip out to Ft. Desoto for some fishing and beach fun with my parents. Mom and I plan to chill on the beach with sweet pea while the "men folk" take some kayaks out and fish in the freshwater. While it will be a fair amount of planning and work to get there, it should prove to be a fun-filled day and worth the effort! We are all looking forward to the day!
Oh, by the way, we are still adding and checking things off Everly's bucket list. Fishing was one of them and while we went to a local fishing hole last Sunday evening, this will be her first official fishing excursion. Her list is so numerous and continues to change as the days go by. It's fun to see all the experiences, some big and some small that she gets to have.
Speaking of...this past week she was visited by her Nany from Kansas. She had a good time being snuggled and talked to by her while she was with us. Nany helped put her to sleep, bathed her and even changed her. Everly's grandmother even made her a turtle and a Christmas tree both adorned in pink! Thanks, Nany!
So, I must confess that I am breaking every "mom" rule in the book on a daily basis with Everly. With five of us in the house on any given day, Everly's body rarely touches a flat surface except for therapy time. Yes, she does nap in my arms a majority of the time. She is so melancholy that she rarely fusses about anything. She definitely does not like to be moved around more than a couple of times, though, and really dislikes being taken from the bathtub. Other than that, she's as cool as a cucumber.
She also has taken a sincere interest in staring into our eyes and at our faces. If you have never been stared at intently by a baby or it's been a while, it is certainly a special experience. Our rule here is never to break her stare. Smile back at her for as long as she keeps her gaze upon you. She is studying every feature, every detail of your face. She scans your eyes for the longest time before allowing her glance to flow over the remainder of your face. When she hadn't seen Papa in a few days, she scanned him for a good while when she first saw him again. And just today, we were blessed by a visit from my friend, Gwynn, who taught me how to sew all the essentials in her room. When she cradled Everly, she spent a good 10 minutes studying her because it was a new face, new voice. That baby is truly remarkable!
She began her work with Mary Ann, our neighbor and her Interventionist, last week! Yeah! It is so much fun for me to watch someone else work with Everly. Mary Ann is working with Everly on much the same thing as the therapist is...developing upper body strength, opening her fingers, holding her head up, etc. She is also great because I can ask her tons of questions (poor Mary Ann!!!) and due to her training and experience, she's got the answers! Plus, she comes to our house so it's one less trip out we need to make a week.
That brings me to my final thought for today. There is NOTHING incompatible with life about her or any other baby I know with T18. She communicates with us, enjoys things, dislikes other things and is thriving in her environment. She is a miracle and a blessing from God. God did not make a mistake. She was created exactly as He intended and how lucky are we that we get to raise her? I know that the more awareness that is raised by babies who are LIVING with Trisomy 18, the better the future will be for other babies to come. Please help us to share the fact that having this diagnosis, as life-threatening and life-limiting as it may be, is not reason to throw your hands up and give up on these sweet, precious children. They are compatible with life, joy and happiness! Please share her website and her Facebook page.
I would like to extend my sympathy to the Adams family of Jacksonville, FL who lost their sweet Elizabeth Joy recently. She was so loved and so well-cared for by her family. Her presence will be missed but her memories remembered. Enjoy your new home with Jesus, baby girl.
Everly's friend, Elisabeth Maxine (sorry for my incorrect spelling last time on her name) is growing and is now six weeks old! Her family is grateful still be holding their baby girl and making the most of every minute with her. Her brothers dote on her and spend quality time with her daily. Continued prayers for her good health please. She has a Caring Bridge site as well.
Our other friend, Melanie Rachel, is still in the hospital and is recovering from a serious surgery. She is looking good and even had a smile on her cherub face the other day! I know her mama was so touched when she finally got to hold her again! Please continue to pray for Melanie's recovery.
We are blessed to be a part of a new Trisomy family via Facebook and have met many new baby friends. Please keep these new friends in your prayers as well.
Okay, for my prayer warriors out there...our specific prayer requests right now are that Everly will continue to remain in good health and free from yucky germs that may cause her illness which would be serious for her. Please pray that she does not aspirate on milk or saliva which could cause pneumonia...bad all around. Thank you all!
Also, we really, truly and honestly love hearing from everyone. If you have time and can leave a guestbook entry, a Facebook message, an email, a text, please do and thank you! I might not be able to respond but it is so special for us (even the boys read them!) to have encouragement. We read and read all the messages. I have saved all emails I've received since before even her birth and go through them when I feel less than positive about our situation. Please know how valuable your messages are to us!!
By the way, still working (or rather starting) on getting my thank you notes out. I promise it'll get done!!!
I've attached some favorite recent photos and even a video where we captured Everly responding to her name! She's so amazing this little girl!
Ephesians 5:20
Giving thanks always and for everything to God the Father in the name of our Lord Jesus Christ,
With love and appreciation,
Crystal
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