So this post is horribly overdue.
To be honest, the last week has been kind of rough and I just didn’t have the strength to do it!
The Happy Baby has been home with us for almost 5 weeks now. 5 glorious weeks!
He is so precious, people.
Always happy. Always smiling. Always content.
But, man! He has a tough time eating.
Every time I go to give him a bottle, I feel like I have to gear up for battle.
But I am a weary soldier, my friends! I get so discouraged when he doesn’t eat.
The whole feeding process usually takes about an hour and a half- an hour of trying to give the Happy Baby opportunity to eat on his own and then a half hour of failed attempts getting put through his feeding tube.
By the time the whole ordeal is said and done, it’s time for me to pump and then start the whole process all over again.
We have tried different types of bottles and played around with his schedule to see if there is a better way, but we still face the same battles at every feed.
We think he might have some reflux (more than likely caused by the tube that had been down the back of his throat for most of his life in the NICU) and his suck is still quite weak.
I suppose I wouldn’t be so frustrated if every once in awhile he will surprise us by chugging a whole bottle (or a decent amount) in a timely manner. It makes me wonder why he has such a difficult time on all the other bottles when I have seen him be successful before.
I have, on more than one occasion, sat with the Happy Baby in my arms, tears streaming down my face, completely overwhelmed.
Overwhelmed by his struggles, the whole feeding tube thing, and a general discontent that things have to be this way.
And overwhelmed by the fact that he can probably sense my overwhelmed spirit – adding insult to injury!
In the midst of all this, we received a call on Monday from the surgeon telling us that the Happy Baby’s muscle biopsy results were in and that I was to call the genetic office immediately.
Those darn genetic tests!
I phoned the doctor and they scheduled for us to come in on Tuesday next week.
When they said Tuesday, I was like, “ARE YOU KIDDING?! I have to wait seven more days to find out about our baby’s future?!”
*I hope I was a bit more gracious than that looks all typed up.* 🙂
Getting off the phone I fell to my knees and just cried out, “Abba! Father!” several times before pulling out the Bible and pouring over some Scriptures.
It was all I could think to do and say as the Happy Baby’s tomorrows loomed ominously ahead.
The next day I called the office every ten minutes – trying to get a hold of the doctor to see if he would just speak with me about the details over the phone.
A whole day passed and no one got back to me.
So the next day I decided to email the geneticist.
(This is where it gets good.) 🙂
I got busy typing up this email telling him how anxious I am and how desperate I am for him to tell me what our boy’s diagnosis is.
As I was typing, the Happy Baby was lying next to me on a blanket. I was so caught up in my worry-filled email that I didn’t even realize that the Happy Baby was busy doing something, too.
He was busy rolling over for the first time.
For someone who is being tested for muscular dystrophies, I think that is pretty amazing.
And in that moment I shut down the computer. I didn’t send the email.
Because the Happy Baby’s rolling over was just one more confirmation from the Lord that our boy is going to be just fiiiiine.
It was as if the Lord was saying to me, “Julie, stop being anxious. Look at what I am doing in your son.”
A friend texted me and said, “It is God’s report that matters – not the doctor’s.”
So that is what we are resting in until Tuesday’s appointment.
🙂
Thank you for your continued prayers.
-Julie
“As for God, His way is perfect; the word of the Lord is flawless. He is a shield for all who take refuge in Him.” Psalm 18:30
What a sweet mommy you are. Thank you for being so transparent in your day to day struggles. I am so encouraged as I read about the depth of your faith.
My daughter was a premie and 2 pounds at birth, when she was 4 years old she saw a picture of Jesus and then told us that he was with her in the hospital holding her hand when she was in the plastic box (incubator). I believe that too! You keep on keeping on the journey that is yours and just be thankful for the ride! Because the Lord is with you and your family let him take the wheel!
Praying!
Hang in there, Julie. Many of us in cyberspace are praying for you and your family.
Awww, he is precious!! You are a wonderful Mama, and I’m glad you got to enjoy seeing him roll over for the 1st time. What a sweet, sweet boy. I pray that his feedings get easier for both of you.
xo,
Laurie
Still in my thoughts and prayers…esp on Tues!!!
This post puts my life into prespective today. Just what I needed! Thank you for your honest and open postings. God Bless.
It does put everything into perspective doesn’t it…what a milestone for the little guy!!
We are praying for God to give you supernatural strength and patience for Tuesday’s report…We love you guys!
Your boys are both beautiful. Your faith and spirit are celestial! I KNOW God has great plans for all of you….He is faithful, as we have all seen with your sweet baby’s progress….Waiting to hear the GREAT news, praying always for strength, joy, and love!!
God Bless you and your family. We never know God’s plans. We just have to have faith. You have it. Everything will be fine. He is here with you. I had many dark days dealing with pregnancy losses. I turned to my church and faith. It got us through. I have my boys and they are a gift from God. Not perfect and no one is. Your post reminded me to keep my faith when I am struggling with parenting. Stay strong.
I just subscribed to your feeds and was so touched to read this post. Is’nt it wonderful to feel God’s love through those little miricals that remind us he is there and that he loves us and knows each of us and our situations. You are an inspiration…and your son…he is SOoooo CUTE! remember also: when your struggling…many people are now praying for you and your family to. Have a GREAT day!
Your struggle to get him fed brought tears to my eyes. Then I read about the rolling over and am rejoicing with you. As we are reminded in our Children’s Church “I can trust God no matter what”. It is so good to be reminded even in the hard times, He is faithful. Thank you for sharing with us. We love you Happy Fairy and your Happy Family. You are so special to us.
I love reading your blog, and I will be praying for you and that precious baby. God bless!
U kno what a great mother u are..U ought to know ! We’re all praying for the little one for sure and with a lot of faith. I have always believed that faith in God is bigger than anything else in the world and thats when miracles have happened. When I have left things upto him after telling him what I want. Jus believe. As I read sumwhere ” My lifeguard walks on water”… 🙂 So Gods gonna take care of the little happy baby in this world. And soon we’ll be reading happier and happier posts of urs about him takin his 1st independent sip of milk , his 1st crawl, his 1st step and his 1st bump on his little bum. 🙂 Hang on and smile with him. Best of luck.
So happy to hear this news, and praying that Tuesday’s news will be likewise good. Incidentally, your little boy has the most adorable smile.
AWESOME — that is wonderful news and hopefully he will continue down that path. I am still praying for you that the news you receive will be good. He is the most adorable little boy! What a sweet, sweet smile! :o)
Thanks for being so transparent. I believe God is truly honored by your humility. We had a baby that took forever to feed also. It was two and a half years of that, and God was a lamp on our feet and and light on our path. We know Him more from those dark hours. I will continue to pray that you continue to follow God’s wisdom, not man’s and that the Happy Baby would be healed. The Lord is not finished with the work He is doing in your lives.
God has such big plans for the happy baby, can’t wait to see as it all unfolds! Know that you are in our prayers and our God is a Mighty Deliverer!!
I’m so blessed by you and Ryan everyday. I’m looking forward to hopefully seeing you sing this weekend!
I am so blessed by your posts and your faithfulness. Our whole family prays for you and your Happy Family. I even had to give my daughter updates on the Happy Baby while she was away visiting with her grandparents. I called just to tell her “The Happy Baby came home today!” May the Lord bless and keep you and sustain you through this journey. He has wonderful plans for you and is using you in a mighty way as you blog to all of us. You are more than the Happy Home Fairy in God’s eyes, I am sure. Thank you for sharing your journey with all of us!
Yaaaay!! Go baby go! God is so good. Continued prayers for you all!
Your post brought back a multitude of emotions from 31 years ago. We dealt with geneticist and other doctors also. I remember the days of feeling overwhelmed by the whole thing. We were blessed to have wonderful support from family, friends, church and even our physical therapist. God is in control as He is reminding you. (As an update, our son is 31 years old, married with 2 sons. He uses a wheelchair and has found his calling working for a center for indepdent living advocating for the disabled community.) We continue to remember you and your family as you walk through this life experience.
As a special educator, I can tell you this. Whatever names or words the medical field may use to define your child, it will never change the words you use to define him, like happy, precious, etc. It will also not change the way you treat him, with love, love and more love. It will not change the way you feel when he shows you he can roll over or when he gives you that first beautiful smile ofnthe day. You will still want him to be the best, strongest, happiest human he can be no matter what words you hear! You are blessed 🙂
Dave and I continue to lift up you and Ryan and your precious family! God is going to do great things through all 4 of you – just think – He has it all planned out, you just have to trust Him and walk it out – which you are doing! Do not fear, precious friend! And keep persevering with that beautiful countenance that you always wear!:) Much love to you!!
Becky
Julie,
I can remember the days of sitting in a chair trying desperately to feed my little girls. It took an hour to feed her and many tears. Later in seeing doctors and specialists ect. I now have a beautiful 15 year old daughter who is serving the Lord with all her heart. She does deal with some medical things but just presses on it does not let it hold her back. This year she and her best friend ran the music for VBS. Teaching the kids all the hand motions and to dance for the Lord! I have never been so full of joy.
Psalms 126:3 For he has done great things for us and we are filled with joy!
When ever things bring me down I sing that song ” The joy of the Lord is my strength” over and over and over.
Praying for you daily
Lisa
I discovered your page last halloween when another sister in Christ recommended reading your perspective and the way your family chooses to acknowledge the holiday. I have been hooked ever seen and always appreciate the great ideas you share.
However, I have been truly blessed and encouraged by your sharing your heart with us as you are facing what the Lord has willed for you in these days. Your unwavering faith has been so encouraging. You know exactly what to do when you face your challenges – call on the name of the Lord!
Thank you so much for sharing.
You and your family still are in our daily prayers! Keeping moving forward! We know you can do because you are amazing and Heavenly Father is showing your example to us!
Oh precious Julie, God truly is good…all the time!
We simply need to water…wait…you’ll see.
The words ring true of this wonderful hymn:
Great is Thy faithfulness O God my Father
There is no shadow of turning of turning with Thee
Thou changest not, Thy compassions they fail not
As Thou hast been Thou forever wilt be.
Many are holding your arms up as you go forth in battle
He is Jehovah Nissi, God is my Banner who goes before me in battle.
from the heart,
Vickie
That little boy is one of the most beautiful children I think I have ever seen! His big beautiful smile and eyes are so sweet and precious. He knows how much love and support he is getting from you, your family, all of us…what a joy it must have been to see the little guy roll over! What a milestone and what a message to receive just when you needed it most!!!! He is strong and so are you!! Hang in there until Tuesday!!
Julie, How I wish I knew you personally so I could give you a big hug!! Happy Baby is so precious and God knew just who to send him to! Feel a big hug coming through the airwaves to you! “God is good, all the time. All the time, God is good!” A quote from my pastor! Keep the faith, God is an on-time God!!
You are such a strong person and your posts inspire me everyday! I will be praying for good news for you and your family for Tuesday. (and thank you for all the great craft ideas… My 4 year old appreciates it!)
I just wanted to encourage you in the form of commiserating. On a totally different level, but my 16 month old daughter is the WORST eater! Thankfully, milk is her go to. But, around that 6 month solid food starting age, she just wanted nothing to do with it! No baby food at all. She would literally bat the spoon away from her mouth. We kept trying, and began discussing it with the pediatrician. He said, go straight to table food, maybe she just doesn’t like the texture. So, we started that, and had a little success. But, pretty much, she eats bread, any junk food, and milk or milk products – yogurt, ice cream! We keep trying, and if I were to “starve” her from her favored foods, I’m sure she would eat, but…it’s all about keeping perspective.
My amazing mother keeps reminding me that my brother and I basically grew up on peanut butter and jelly and chicken nuggets, and we’re fine! So, I just rest in the fact that she won’t solely be eating bread and milk when she’s in elementary school, and keep plugging away. Hang in there fellow mommy! As everyone else has mentioned, as have you, God’s timing is perfect and He is obviously at work in your family. Keep up the fantastic work!
prayed for your little man this afternoon
hugs
oh sweet girl, i pray things get easier for you…and i know that God is there working in and through your sweet happy baby! love you and hugs to you!
You are doing a Great job! Rest in the Lord.
Wow I felt e Spirit so strongly while reading this, I had goosebumps! You are an incredible mommy, I have no doubt your sweet baby, and happy buddy too, know how much you love them and lucky they are to have been placed in your care.
Julie,
You simply have no idea how God is using what you are going through to speak peace and reassurance into my life. I stand with you believing that our Father is a keeper of His Word and promises and I rejoice in knowing that His plan for you all is filled with healing, love, joy and all good and perfect gifts from above!!!
Oh dear Julie, still praying — for you and Happy Hubby and for those sweet sons of yours. You have had an incredible testimony dropped in your lap, girl, and you are wasting nothing. What the Lord is doing through you and yours is a wonder to watch. Love you.
Hi Julie!
I can’t begin to imagine all that you’re going through. I worked in early intervention for 8 years, and was wondering if you are getting support for your little man’s feeding through speech therapy. It looks like (from FB) that y’all are in FL, and here’s the info for your state’s program. I hope things improve quickly! http://www.centraldirectory.org/index.cfm
Julie, your posts are so honest in your postings that I can feel what you are going through. We need to be specific in our prayers and this helps me, because I know more to pray about for you and the happy family. He is so beautiful. My love and prayers for you all.
You and your precious baby sooooooo have my admiration. Wish everyone could have a fraction of your faith. You set a beautiful example. Give that gorgeous son of yours a little hug for me. I’m praying for all of you.
How exciting to hear that your darling little guy rolled over! And how like our Heavenly Father to have him roll over for the first time exactly when you needed it the most. 🙂 Babies with reflux will sometimes become very hard to feed, because they start connecting the food with pain as it increases their reflux each time they eat. And your little guy has the sucking issue too. Do you think it would help to discuss the feeding issues with one of his doctors? Maybe they could offer some hint that would make it easier for you. As always, I’m praying for all of you every day. Blessings and hugs!!!
Julie & Ryan, your family is always in my heart and in my prayers. How my heart aches for you as you strive to feed Jet and want so much for him to just be well. As many people have said to my family that God placed Aiden in just the right family, so has God placed Jet with yours. Whatever the news on Tuesday, Jet is precious, beautiful, a fighter, a survivor, and a blessing straight from the hand of God. The Lord will give you and Ryan all that you need and more for whatever His plan requires. I love you all and I am praying for the best news possible!! Love, Marla
i am lds and love the phrase ‘tender mercies of the lord’ – i believe you were sent a beautiful tender mercy reminding you just when you needed it of just how aware the lord is of each of us and how much he loves us. thanks so much for sharing and my heart and prayers are with you.
Praying for your Happy Family, sweet Julie…knowing full well that our Lord is sovereign and has you all wrapped in His mighty arms.
What an amazing story… and your sweet friend was right, it is God’s report that matters! Looking forward to your next praise report!