Todays MRI in the radiology clinic.
Believe it or not, Little Bug is acutally the little bump on the table getting ready to go into the MRI machine.
Little Bug getting manual pumps of oxygen before his MRI.
Waiting for MRI
Just before going into the MRI....sleeping peacefully on the ventulator!!!
Yesterday just after coming back from the OR....I just hate to see that breathing tube on him so tight.
Yesterday on the way to the Upper GI test......Little Bug is so tired of going place to place and having different procedures!!! I don't blame you Little Bug, Mama's tired of it too!!!!
Yesterday morning before the procedures.......Little Bug on the C-pap machine with a few of his fuzzy bug friends.
Mama and Little Bug on Mother's Day night....He's pretty drugged up, but at least I got to hold him for an hour!
Snuggle time is my favorite time of day!!!
Go to sleep my little one
Go to sleep my baby
For the Lord watches over you tonight
Go to sleep my little one
Go to sleep my baby
You’re in the palm of His hand
You’re the apple of His eyes
Close your eyes, close your eyes
Mommy loves you
Close your eyes, close your eyes
I love you!!!!!
I am sitting in Connor’s room watching him sleeping and the above lullaby is what is playing in his crib. He looks so small when I glance up and see him in his big foam wedge that helps him with his reflux. His head is resting on his blankie and the breathing tube is securely tightened around his lips. His little legs are sprawled out because of his IV line in his groin and I realize in this moment how “not normal” life is for Little Bug. I realized it earlier today too when we sent him into the big tunnel for his MRI. I started to cry when I thought about other babies at home in their cribs or having tummy time or just plain snuggling with dad or mom. I understand in more of a clear way each day that we are no where near the end of our journey. There is still so much territory to cover and many more mountains to climb. Oh Lord, give me strength. Strength for each new road. Strength for every unanswered question. Strength for every new decision that must be made on Little Bug’s behalf.
Today Connor went in for his MRI. Praise the Lord, everything was “normal”. They found nothing abnormal in his brain nor did they find anything of significance with his clavicle bone (an issue that was prominent a few weeks ago). So……where do we go from here you ask? Tomorrow the GI docs will be making a decision regarding Connor’s G-tube. They feel that maybe he would benefit from it advancing to the small intestine so that he would reflux stomach contents, but they’re not convinced this will help. They may decide to take him off of his acid blockers for 3 days and then do a PH Scope to test the reflux and see if they can catch how bad it really is. All the while he remains on the ventilator and sedated. The dietician came in with more unsettling news today about Little Bug’s growth. Apparently, he has a malabsorbtion problem. He continues to poop out all the good fats. This may mean that he will have to be on predigested formula to grow. I am discouraged that this may mean he will not get back to mama’s milk. I spend so much of my time in the small pump room and each time I’m there I tell myself, “It’s ok Lori, at least you’re giving Connor a part of yourself that he really needs.” And now to think that this may be taken away too……Oh Lord, what’s next. Can’t you please let him be nourished by his mama????? We will know more on this within the week as they do more tests on his digestive tract. Today was also the first time I actually heard the ICU docs refer to Little Bug as "critically ill". WOW, that was a stop-in-your-tracks moment for me.
I must be honest; I am discouraged that we have not seen the answers that we are looking for. But, I am reminded that when Joshua fought the battle of Jericho, they had to march around the walls of the city 7 times. So, we will continue to march, we will continue to blow the trumpet and beg of the Lord to move on our behalf.
Lovebug Hugs,
Lori
13 comments:
Just stumbled across this blog while surfing, and wanted to tell you that it is an inspiration out of the blue -- I will add my prayers for Connor and his heroic parents.
Why??????? they ask, and rightly: no one should pretend to know the mind of God -- suffering is an evil, the mystery of which will only be disclosed on the last day. Only this much are we given to know, that He draws greater good from existing evil than would have been the case without that evil to begin with.
Connor's purpose in life, whether he lives one year or one hundred, is to be a saint and to help all his caregivers become saints . . .
God thus delights in manifesting his power in little bugs!
Hello Connor! I love you. I saw you on the computer. I like you little bedroom you was in and even your little bugs. It was cute. Bye Connor.
Love Brennan
Hi Lori,
We are so happy to hear the results of the MRI. We thank God for every piece of good news and await more!
I just want to encourage you about the predigested formula. My middle daughter had terrible colic and I was only able to nurse for 8 weeks. That was probably way too long considering the terrible abdominal pain she was in. The formula allowed her tummy to settle down and she finally stopped all the crying and was in peace and able to grow. It was a tremendous "loss" not being able to nurse though. I will be praying for you specifically about this.
Love and prayers,
JoAnn Andro and family
Hi Lori: We praise the Lord for each piece of good news and the MRI results are very good news. I know the fact that he's not getting the "good" out of mama's milk is discouraging. One of ours wasn't growing like she should and slept too much because she wasn't getting the proper nourishment from the breast milk. But after they put her on the proper formula she thrived. Another son was allergic to the milk and had to be put on soy. The main thing is your love is there and the times when you can hold him are so special and he will feel your love. Hopefully they will still be able to use your milk but the important thing is to get him stronger. We had special prayer at Women's Ministries last night as I've told you we do each time any group meets for worship or Bible study or small groups or anything. Connor is our #1 concern these days. We will continue to hold all of you up in prayer. We love you guys so much and as much as we hated to lose you when you left, we know that God in His wisdom knew you needed to be close to your families to get that extra measure of support. And now you have bloggers all over the country praying for you. Isn't God good to provide such strong prayer support for all of you? Hold strong to His unchanging hand. JoAnn & Rip
Lori,
What good news about the MRI! Now we concentrate on the GI today. I pray all goes well and the doctors see the answers they need to help Little Connor.
I'm sorry about the news that he may have to go on a formula. It must seem as just one more thing taken from you. I hope the formula helps if that is the choice, he needs all the nutrients he can get.
I am amazed everyday at your strength through all this. You are an inspiration.
As always you are in our constant thoughts and prayers.
Christine,Randy and Family
Lori so glad that the MRI is ok...Praise God....I hope the doctors have some answers for you and your family this week...I am sure they would like that too..
I have sent a email to all my bible study table gals we will all be praying .....we need to Praise God everyday and some days it can be difficult...I know....
I got this and thought you might like to read it...you may have seen it before however sometimes it is nice to read it again...
If God brings you to it, He will bring you through it...
Happy Moments, Praise God
Difficult Moments, Seek God
Quiet Moments, Worship God
Painful Moments, Trust God
Every Moment, Thank God.....
Little Bug is sooooo blessed and loved by sooooo many...please remember that....we are all attached to your family in blogger land!!!!!
Peace and Blessings....
Debi
Lori, I was reading about Connor's nutrition issue. We found a good compromise for Brent and he gets part hypoallergenic predigested formula and part breastmilk (about 50/50 but any ratio could work.) This gives him any antibodies and other good stuff present in mother's milk but he also has the fortifying stuff in the formula. Seems like there should be some ratio that would be acceptable for your sweet little bug! I had the dietitian tell me that even as little as an ounce of mother's milk added with baby's formula has beneficial antibodies. At first one of the staff rejected the idea of milk and formula but we pursued it and it is working well. I personally think that when Brent had the flu some weeks ago, perhaps the antibodies in his milk helped him get well faster, especially since he is immunocompromised with chemo he needed all the help he could get.
I think about you and Randy and little bug every day! I wish little bug didn't have to go through so much!
Thinking of you and praying,
Susan
Besides continued prayer, Lori, what else do you need? What can I do for you?
You and Connor and Randy are always on my mind and heart. If there is something else I can possibly do, please don't hesitate to holler.
Love,
Ruthie
Lori,
So glad to hear of the MRI results. Praise God everything came out good. We are pressing on with our prayers for many miracle's to come Connor's way. We are praying for a fresh wind of hope, faith & some answer's for Little bug.
I want to say "THANK YOU" too to all those out in bloggerland for all your prayer's going up for "Little bug", Lori & Randy. Sometime's it seems like...."when Lord, when are they going to be completely answered" but We know God does things in his timing for whatever reason...He will reveal all the answers in due time.So we press on & Pray , Pray, Pray!!! Thank You!
God is Good, Always!
P.S. Lori, Now thinking of coming on Sunday??!! I'll call you first. Hey, sister I Love You & if there is anything I can do for you PLEASE let me know!!!
Love & Prayers, Teresa
Lori,
I am sooo glad to hear that at least one thing is ruled out! I know that doesn't make anything else easy and how you long to have a normal life with Connor right now. We are praying with desperation and fervent hearts. I am doing a study about prayer right now for a ladies bible study and I am learning sooo much and I have to admitt that a lot of what I am learning about prayer right now is through Connor's journey. I do not think that many Christians get the full impact or importance of prayer. We can learn sooo much from Pauls fervancy, Daniel's willing to give up other things in place of prayer and David's long and involved prayers. We do not know how much time they actually spent praying as far as hours but we do know that the scrips indicate that they were truly devoted to prayer. David's heart was hard after God. Through studying this today I thought about how you are like these men. Do not give up and continue to press in as we are too!
Love
Tammy
Lori,
Praise God for the MRI results! We know there is still a battle that must be won! Remember the army of people that are marching and praying with you and Randy until we see those walls come down. We are in this thing for how ever long it may take. We will never forget the power of prayer and we do not take it lightly. We are praying desperatly for encouraging reports to come soon.
We love you!
Sue & Randy & family
Lori,
I am soo glad that there was nothing on the MRI. We continue to keep you all in our prayers.
I have a suggestion for the formula...You might ask the dietician if they have a centerfuge to spin the breast milk. This would allow them to skim off the fat and mix it with formula. That way, he could still get those good antibodies. We had a "neighbor" when Christopher was in the hospital who had to do something similar. Although, his issue was that he produced too much fat. Anyway, this would be way better than just formula.
We will continue to keep you all in our prayers. Connor is such a strong boy. Take care of yourself as well.
Steph from Illinois
Glad to hear the MRI results were negative, but sorry there aren't any answers to anything else that is going on right now. And then to throw the malabsorption issue in to the mix! I pray that they will be able to find some way that he'll still be able to receive your breast milk. As always Connor continues to be in my prayers, the docs are in my prayers for answers, and you are in my prayers for strength for each day that passes.
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