Do you remember when your mom told you the phrase, “You can’t always get what you want”?
At the time, that kind of response probably felt like nothing but a giant irritation and road block to happiness.
When you get something in your head that you want, it’s pretty hard to let go.
I mean, it’s obvious that you know what’s best for you, right?
This week I feel like I have been in a wrestling match with the Lord.
And with the Happy Baby, for that matter!
We have tried different kinds of bottles, we have changed positions and nipples a million times, we have prayed over and sang to and even tickled, but my precious boy just doesn’t seem interested in eating.
Would you believe that I have even gotten frustrated with that little bundle of cuteness? I want to cry at him, “Do you realize that if you just drink your milk then you can come HOME?!”
But, there’s something bigger going on.
Something I haven’t shared because, to be honest, I thought it was just an unimportant side thing that would improve over time.
It hasn’t.
Aside from the virus and the rapid breathing, the Happy Baby has presented with low tone – also known in the medical world as hypotonia.
I figured that his floppy neck was because he has pretty much been lying in a bed since he was born.
It’s not so simple, however.
Although he has decent strength in his legs, the upper part of his body is weak. This includes his face, which includes his mouth, which includes his suck (which is why bottle feeding is hard and nursing is pretty much impossible). This could also be what is causing his rapid breathing – his diaphragm muscles are weak, so they cannot take in and push out sufficient amounts of air.
The GI doctor suspects that his low tone is effecting his digestive system as well. The muscles in his stomach are weak, so they can’t push out the food very quickly. This would explain why he doesn’t ever seem hungry.
It is devastating news because the hypotonia is unexplained. The Happy Baby’s MRI of his brain came back normal – which is great (his brain is healthy), but it means that the hypotonia is probably the symptom of a larger problem.
Like a genetic disease.
You’re probably wondering WHAT? I thought the genetic test came back negative??
Well… one genetic test did.
Last week the geneticist paid us another visit, explaining that he wanted to run more tests for a few other genetic diseases.
I cannot even tell you the pain that visit caused. I thought we were out of the woods on that one. I thought we had been delivered from that disaster.
The knowledge that there still could be a lifelong disability in our sweet baby boy’s future is so hard to work through… especially the second time around.
In the mean time, our Happy Home is suffering the longer the Happy Baby is in the hospital.
Constantly driving back and forth to visit, coordinating schedules, and trying to preserve some sense of normalcy for the Happy Buddy is getting more and more difficult. Not to mention the constant anxiety I feel when I am not with my baby (I mean, seriously, people. That kind of adorable should never be left alone!).
We have made a decision.
We are getting the feeding tube.
Tuesday morning the Happy Baby will have his surgery and hopefully, if all goes well, he will be able to come home by the weekend.
I am not going to lie.
I am disappointed.
At the beginning of this whole mess, I truly believed that everything was going to be just fine. I thought that we’d be able to wrap up this season in a little present and tie the bow off with a complete healing. I envisioned the nurses wheeling us out to our car on the day of our discharge with our church family lining the halls of the hospital, cheering for the Happy Baby and all that the Lord had done to make our boy 100% well.
As this week brought the geneticist back and the bottle wars did not improve, however, I found myself before the Lord once again, begging for answers.
And He has said, “Surrender.“
No, things are not turning out the way I wanted.
But they are turning out the way God wants.
And, as much as it grieves me to type this, that is okay.
That is good, even.
He clearly knows what is best. For right now and for the future.
Even though I totally do not understand.
I have to remind myself constantly (and be reminded by friends and family constantly) it is not for me to look beyond the now. I can work myself into a frenzy (and a horrible case of mastitis) when contemplating all of the what-ifs.
Because at this point we are looking at a lot of doctor appointments, a lot of physical therapy, a lot of hospital bills, a lot of medical equipment and medicines, a lot of wait as we are patient for further testing.
To cope, the Happy Hubby and I have been joking lately about the concept of Baby Steps from the movie What About Bob.
And a lady in my church is always saying, “Just do the next thing.”
So that is what we are doing, friends. Doing the next thing. Which is surgery for a feeding tube.
Then the next thing after that is recovery.
Then the next thing after that is home.
Then the next thing after that is to trust the Lord for all the next things.
Isn’t it interesting that this is the Bible verse the Lord had me memorize back in February while I was still pregnant?? It has been hanging on my bathroom mirror ever since.
I think it will stay there indefinitely.
*We covet your prayers for Tuesday’s surgery. Check out Happy Home Fairy’s Facebook Page for updates.*
Praying for you today! God holds you and your little one so gently and lovingly. I am reminded of a lovely hymn:
I am not skilled to understand
What God hath willed, what God hath planned;
I only know that at His right hand
Is One Who is my Savior!
I take Him at His word indeed;
“Christ died for sinners”—this I read;
For in my heart I find a need
Of Him to be my Savior!
That He should leave His place on high
And come for sinful man to die,
You count it strange? So once did I,
Before I knew my Savior!
And oh, that He fulfilled may see
The travail of His soul in me,
And with His work contented be,
As I with my dear Savior!
Yea, living, dying, let me bring
My strength, my solace from this Spring;
That He Who lives to be my King
Once died to be my Savior!
Hugs from across the miles.
Mary
Will continue praying
great verse – I use that very often as I’m waiting to know what steps He wants me to take each day. Many days, I don’t understand the path He has me on, and I don’t have to & neither do you!! Surrender really is sweet on the other side – initially painful, but sweet because our God loves us and HE knows what’s best for us!! xo
Oh Julie! I too was waiting expectantly for that sweet picture you painted to come to pass. We’re praying constantly for strength for Jethro, and you and Ryan as well! So glad he will be coming home this week, even with all his extra paraphernalia!
what an adorable Happy baby. Also too, during times like these I try to remind myself that the Lord never gives you more than you can handle. Prayers to your Happy family.
Music always helps me when I’m hurting. It just brings you closer to Our Father. I have Pandora Radio set up with my favorite Christian Music. Jaci Velasquez is one, hope this helps. http://youtu.be/fx10drNM3gc
In my prayers for complete healing in His time.
So sorry for your disappointment, Julie, and continuing to pray for you all. “The steps of a good man are ordered by the LORD, and He delights in his way. Though he fall, he will not be cast down, for the LORD upholds him with His hand.”
I wish I could explain how your life story affects so many of us…tears, smiles, frustration, acceptance and hope. My heart is with you.
I agree with Angie wholeheartedly… you are an encouragement to all of us. I’ll be praying for your sweet family and for your little Jethro on Tuesday as he goes through surgery. Thank you for your faithfulness and your testimony to trust God even in the hard times.
Oh Julie, I have tears for you all once again. My heart just aches for how difficult this must be. Thank you so very very much for keeping us all updated–your story has touched and inspired me so very much. I love you sweet friend. We are praying. We are sending you and Ryan great big hugs and we are cheering on that precious little boy so he can COME HOME where he belongs. Xoxoxo
Covering your happy family in prayer on this side of the world. Sending you love and prayers from Japan.
Love and prayers coming your way!
Prayers and hugs during such a difficult time.
Oh, Julie, how brave you are to lay your heart open and share this with us. Of course, you will have prayers tomorrow and we will continue to pray for your family. You have a sweet little boy; his eyes are so beautiful. We have had situations in our live where we have had to “surrender” and are facing another one right now. The only thing we can really “give” the Lord is our will. When we surrender that He opens ways that we would never have imagined. Our love and prayers to each of you.
Julie, that precious child is marked by God for something very special. He has a definite mission that the Lord sent him to do. You are blessed to have him as a son. Our prayers are with you!
I am sorry that you did not get want you were praying for, but isn’t it great that we have a great big God whom we can turn to and know that he knows what is best for us! Praying for you and love you all so very much.
Happy Baby looks like a…Happy Baby! There is a time to pray for healing, pray for a miracle…and a time to pray for strength and courage; to Surrender to His will. You get the life you get because HE knows you can live it.
Julie, I am praying for Tuesday’s surgery and for every “next day” after that. Such a wise way to look at things — just do the next thing. I’m ever so glad Jethro is coming home, and I know you’ll truly be a Happy Home with him with you. Praying, praying…and rejoicing that he’s coming home!
My baby has had a gtube for 2 years now. One of the hardest choices to make, but I got to bring my baby home after a 5 months hospital stay. The support groups out there (feeding tube awareness specifically on FB) are amazing. I’m praying for Happy Baby and his surgery. The Lord will be with you all.
Our second-born also had hypotonia as a result of a genetic syndrome. Don’t worry if you don’t get results – some people do get a diagnosis, but many (like us) are just left with a “unknown genetic syndrome” diagnosis after all the tests come back clean. I thought it would be quick and easy to figure out what was wrong, but it wasn’t. However, it hasn’t mattered because the treatment is the same – therapy and treating the symptoms. Best of luck to you – I can only imagine what you guys are going through.
Praying!!
Julie & Ryan,
How my heart aches for you…thank you for sharing your heartache, fears, pain and struggles with all of us. Your journey speaks to so many others. I know there is so much uncertainty ahead but our great God is much bigger than whatever is ahead. It has passed through His hands first! Our sweet Aiden’s struggles to hold his head up, eat, learn to sit up, crawl, walk and so much more made our family stronger and our faith deeper. Your dreams and plans for Jet have changed…they aren’t sad, they’re just different. It is enough to take one day at a time and thank God for each improvement. For setbacks…to cling tighter to Him. Keep singing! Jet and all of you are in my heart and always in my prayers…Love & hugs, Marla
Tonight, my soul, be still and sleep;
The storms are raging on God’s deep–
God’s deep, not yours; be still and sleep.
Tonight, my soul, be still and sleep;
God’s hands will still the Temptor’s sweep–
God’s hands, not yours; be still and sleep.
Tonight, my soul, be still and sleep;
God’s love is strong while night hours creep–
God’s love, not yours; be still and sleep.
Tonight, my soul, be still and sleep;
God’s heaven will comfort those who weep–
God’s heaven, not yours; be still and sleep.
I’m passing this on to my mom so she can pray with us. Hugs and prayers
Julia.
I feel your pain,God does it his way & you have nothing to do with it.Just trust in him…Surrender for your own well being.Praying until our knees feel as much pain as you are feeling….
Praying, praying, praying! Love you and your smiling Happy Baby. Perfect love casts out fear. Surrender allows us to stop fearing and starting working with what we have. Let us keep running the race set before us, my friend.
I just want to thank you so much for sharing your heart, your journey, you have no idea what your testimony is doing for me and I am sure many others. As I walk through a trial myself, I am strengthened just seeing God’s faithfulness in your circumstances and your faithfulness to Trust in Him. I totally get your heart when you spoke of how things haven’t gone as planned and tied up in a neat little box. I have realized God is limited when we try to put life in a neat, little box! Stay strong sweet sister in Christ, there is so much beauty in your story and that baby is so precious! God is good and His mercies endure FOREVER! Hugs to you! His healing power will restore and strengthen your family as well and your journey continues. People won’t be able to help but look upon your situation and be drawn towards Christ!
Your Happy Baby is just so beautiful, it breaks my heart to read what you are going through. God is always good though. Praying for you & yours.
praying for you and your little one today. May God give you grace for each moment. Hugs
I have been following your blog for awhile and have been praying for you and your precious family. Your faith in our Awesome God encourages me daily and strengthens my faith. You all are being covered in prayer and our God never leaves us. I know that nothing He does is for nothing. It is ALL for your good. Press on, one step at a time. One minute at a time. You can do all things through Christ Jesus. Just lean on Him. One minute at a time.
I have stumbled across your blog through Pintrest. Strange how the Lord directs us using the most common things to bring our attention where He will have it. Know that for everyone that leaves a comment for you there are others that will not, yet they will keep your Happy Family in their prayers without you ever knowing it. You don’t need to, because God knows it. “For where two or three gather in my name, there am I with them.” Matthew 18:20. You have that 2 or 3 multiplied here. He asked you to surrender and you did here for everyone to see and through that surrender He has brought you the power of the prayers of people that you will never know. He has surrounded you with strength through the Spirit. He does not want your heart to break. As His child He only wants the best for you, just as you do for your Happy Baby. He will never leave you and will hold you up just as He has promised. I pray for His will for you and your family, and for His peace to cover you always. May God continue to Bless you throughout this journey, my prayers are with you.
Julie,I wrote a song back when my mom-in-law was struggling with her cancer and then went to be with Jesus. The chorus says: Where is faith, when the storms of life, make us shake, with a holy fear? is it found in what I want most, or does it say, ‘Thy will be done’?
It is always most difficult to surrender to the Lord when His will is potentially different than OUR will, but that is where faith and trust come in.
The bridge of the same song says: We need to remember that You’re in control. You captain the vessel;where you say it goes. We are not forgotten; we’re never alone. The center of trouble is where we can know You sing over us.
He is surely with you and His precious baby boy, my friend. XXOO
Praying, praying, praying. God has a plan for the Happy Baby and God’s plan is always perfect, but it’s hard to just rest & trust in His plan when it is so different from what we expected. I know, because I’ve been there with my own child. I pray that God will give you peace as you walk through these difficult days with the Happy Baby.
Thank you for sharing Isaish 55:8-9. I needed that reminder in my own life today. Hugs and blessings!!!
I have read your blog for awhile now but never commented. I have an 11 year old son with special needs who has a G-tube. He had an NG for a YEAR and we tried and tried to get him to eat, the harder we tried the more he resisted. One of his issues I have come to understand can cause feeding issues. Well when he was nine months old and just a normal procedure for ear tubes and in the OR they had removed that bond stuff over the tube and put regular old tape, and in recovery his poor little cheek was bleeding. I was livid and so upset. Another mother quietly came over and told me that experiences like this is what made them get a G-tube for her child. Right then and there I new we needed to start the process for a g-tube and he had one by his first birthday. He too was in the NICU for four months waiting for him to eat and it didn’t happen, therefore came home with the NG. But it was just another example of the Lord working through other people to help us out on our journey. I didn’t want my son to have G-tube and would I change that if I could? Of course and hopefully some day in the future he won’t need it but it came down to the fact that I want my son healthy and strong and because he is able to be fed through the tube. He started out as an early 30 weeker at 2 1/2 pounds and is now a big 75 pound 11 year old. Stronger than an ox actually
But I just wanted to write and know how you feel of wanting to wrap up the whole situation and go home happy and healthy, and you will be, just with a little more hardware! 
As I have learned, God can use all things for His good. Enough said. Praise God and blessings to you as you grow stronger and wiser through trial.
Oh Julie. What a precious precious little boy. My heart is aching for you. I have to admit I don’t understand what God’s plans are. But I look at your baby’s face and I see happiness and contentment. For all the problems in feeding him, he looks well nourished. I remember how he couldn’t breathe on his own, and now he is. I just don’t know. I have seen people who have been told they will never walk again, not only walking, but running. I have seen people on their deathbeds get up and live out the rest of their surprisingly long lives. So we don’t know what God has in mind for Jethro, but we can see He is with him right now. And He has placed this precious child into the arms of two people who couldn’t be more perfect for looking after His little creation. Maybe Jet will grow into a person who is an inspiration for countless numbers of people. Maybe he is there to show that God loves us with all our imperfections, and that He has eternal plans for us where we will rise above all of our human frailties. I am going to have a long talk with God tonight. And I am going to pray for the best outcome for your little boy. He may find me annoying, but I am not going to stop. Know that I hold you and your whole family in my prayers. Love you.
Dear Julie and Ryan Please know you and your sweet Jet (and Noah) are in our prayers . May you feel His presence.
Julie, Jet is a beautiful baby. Maurie and I have praying for all of you since the beginning. I cannot even imagine what you’ve been through …the roller coaster of emotions. Our love and prayers go out to you, Ryan and your whole family. We will be praying extra hard tomorrow that Jet’s surgery goes well tomorrow and you get what you’ve been waiting for over the last 3 months… to be able to take that precious baby home. Your faith during this difficult time is an inspiration to everyone. Keep believing that God has this situation under control . We love you!!!
Julie and Ryan. Our prayers are with you. I remember when my daughter had a trauma to her head and we had to go to the hospital facing the unknown. Thank God she was fine and her body healed. I know by reading that you have been to all kinds of specialist and have tried everything possible to help with Jets symptoms. I know that those doctors are trying their very best. I read all the prayer requests for healing and it is awesome to see so many people come together. I also have been praying to the Lord on how to reach out and help and He led me to this posting. I don’t know if Jet has been checked for neurological stress to his brainstem, something that can happen by way of the birth process thereby causing what’s called a Subluxation to the delicate part of his upper neck the Atlas vertebra. It is a misalignment of the neck that can happen during delivery and pulling of the neck pinching and choking off nerve supply to the rest of the body. This of course is not intentional to harm anyone, but often times it can cause subluxation. It’s called traumatic birth syndrome and not many people are aware of it. This can only be detected by a Doctor of Chiropractic, because we are the only one’s licensed to check for this condition. This can interfere with vital messages that leave the brain to every part of the body. The spine is like a fuse box and if a switch is thrown off, power is lost. What if this is what Jet has and it has not been detected as of yet? What if it can be corrected by a simple procedure that is non invasive and only takes seconds to possibly release life flow back to his body? My heart right now is aching. I do not like to see the little one’s suffer. I am making myself available to your family if you wish. Time is of the essence. I am not looking to gain anything whatsoever from this relationship, only that to give you hope in what may be possible that life and health can be restored to Jet. I pray that you receive this post today. I would be wiling to make myself available tonight and go to the hospital or wherever to check Jet for Subluxation. I know this is a stretch and you may be thinking, who is this Guy, we have tried all the best Doctors and Neurologists and tests the hospitals have to offer and I honor that. But please consider my help. My name is Jose Orta, Chiropractor and can be reached at 954-489-4790 off or 954-655-7400 cell. Visit my website at http://www.mbschiropractic.com to learn more. God bless your family.
Hello Doctor! I just wrote you an email! I hope you got it! Thank you so much for contacting me.
Baby steps are all we have, love that movie.
There are no words but lots of prayers going your way.
I can’t pretend to understand but I do hear the disappointment of our will not happening. My daughter gave birth to my first granddaughter almost a year ago & she all of a sudden wouldn’t talk to me & is VERY angry with me. It’s been a horrible year b/c I desperately wanted to be a GM. BUT God has worked this all for His good b/c I have learned so much about God & myself through all of this.
Hang in there, trust God, which is all you can do in these circumstances and He will show you things you would have never known without this trial. No we never want to go through these trials but… “Trust in the Lord with ALL your heart…” Prov. 3:5-6.
I am amazed that you still have energy to keep up with this blog, you are AMAZING!!!!!
Love & prayers, Mair
Hi Julie,
I haven’t seen you for many months… but have not forgotten you. I will keep praying for you! I know you are going through a tough time right now. Thinking about you! Love from Lulu, Aidan, Nadia and Lyndan! Jet is soooo cute, btw!
I’ve been praying for your family. Laura and Sam have kept me posted on your baby’s progressl. I so admire the faith you have and I think your acceptance of God’s will is amazing, given the circumstances. Your son is beautiful, innocent and sweet as can be. Hang in there. Marty Kastensmidt (Sam’s mom)
God bless you and your family. I am praying for you and the doctors/medical staff. You have a beautiful family.
I’m praying for you and your precious family, especially Happy Baby! I pray that God will continue to work things out for your good and for His glory, because you are definitely His! God bless you all!
First off, I am praying for you all- your beautiful baby and your family. I almost can not read your post, because I can feel your frustration and fear about having your baby still in the hospital. While my situation was never as long as yours, when my baby was in the NICU for a few weeks, it really pulled at my soul. There is not any pain harder to bare for a mom than not having your baby at home with you and when they won’t eat and can’t come home, it is incredibly frustrating. May God hold you all in his hands for this surgery and may your baby be able to come home soon, and like you said just do the next thing. With little babies who need special help, it always has to be just you and God, because there is nothing you can do, while they grow and heal and do things on His schedule. I really think He blessed us in hindsight when our child was in the NICU, because if you can handle that you can handle anything. Keep your spirit up and it will all happen in God’s time.
I suffered from postpartum depression/anxiety after both of my babies were born, and my grandmother frequently said the same thing to me. “Just do the next thing.” It’s good advice, and has helped me so much. Really, it’s how God expects us to live, anyway. Just do what needs to be done next, and trust Him for whatever may come after that. Easy to say…very hard to do…
I will definitely keep your family in my prayers.
You have been chosen, specifically selected by the Creator of the Universe to bring glory to Him through this very difficult challenge. He knows you so well.
I will be praying for your little boy today.
You all are in our thoughts and prayers everyday. Especially today for “this next thing”. May The Comforter’s peace that passes understanding reign in your hearts. Our love, The Beams
Julie, Ryan this is my first time on this blog, it hit me really hard, here at work. Jeannie and i have had you guys, especially Noah, in our prayers, but for reasons our God will only know, i was hit hard with your words and the outpouring of support for Jethro.
I can relate very much to your feelings. I have a son that was born with slow motility to his gut. I also expected to go home when he was born and begin a normal life as a family. “Not” the case !! He has a g tube, an Ileistomy, and a broviac. He’s on partial TPN cause he’s not in full feeds yet. Hopefully you will only need a gtube. We go to speech, physical, and occupation therapy 3x a week. All I can tell you is to stay strong. Its very stressful and it dies affect my marriage but stay encouraged !! Hospital stays, medical equipment, therapy, g tube feeds and venting will become a normal part of life !! There are so many kids with issues like your angel and mine. Your not alone !!! Stay strong un your faith I promise you God is faithful and will pull you thru this time. My story is much more complicated but I stay hopeful in our God!!
Don’t despair my dear mother, I’m a pediatric nurse practitioner and have seen many toddlers leave hypotonia behind and catch up developing just fine, your family is in my prayers!
I just read this on Facebook: “I have learned to kiss the wave that throws me at the Rock of Ages.” Spurgeon
I just read about your little one!!! I have so been in your shoes and I guess still am but my precious love is now 14 and going to be a freshman in high school!! She is in resource classes and yes developmentally delayed but they don’t come any sweeter or social than her. Hang in there, pray a lot and be the voice he needs, and I promise the ride will be bumpy but wonderful. Hope this helps:)
Dear Friend, I understand a little bit about your disappointment in needing to choose the feeding tube surgery. It was one of the hardest decisions of our parental lives. And, then we saw the dramtic improvement in our little one’s quality of life. She went from adorable to happy and full of life. All the energy spent on trying to eat was totally re-routed to living and and learning. I pray the outcome is equally wonderful for you and the happy baby.
Our little one was also hypotonic (due to three months prematurity), after coming home we began to carefully hold her upright 3 out of 4 hours a day. And after a bit, we used an exersaucer. While these are no longer recommended for stronger babies, they are perfect for supporting core strength development.
Once again, I pray your outcome is equally wonderful though the journey may be long.
Julie:
You are on our minds at our home and praying that everyone in the Happy Home gets back to normal. I have been doing some reading on the Internet and found that John Hopkins has a center dedicated to children with Hypotonia and the underlying causes. Just a suggestion for them to take a look at Jet since you done all the test. Here is the contact info in case you want to reach out.
The Johns Hopkins Center for Hypotonia
To schedule and appointment contact:
Maria Johnson, MS, CGC
410-955-3071
Would love to help in any way.
Ileana