By nature of no new posts for the past 3 days I'm sure you've already guessed it.......we were moved to the floor late Saturday afternoon. Beyond our better judgement of course, but nontheless, they sent us to the floor. Sunday evening Little Bug started having some difficult episodes and by 3:30 this morning he was beside himself. He and I rocked most of the night and we waited for doctors to come talk with us this morning. You can imagine my frustration as I have already admitted, "I'm tired of talking"!!! The Cardiologist on service this week echoed my own frustration and upon his examination of him around noon today, he agreed that Connor is definately in congestive heart failure. His liver is enlarged, his lungs are hyperinflated, he is retaining fluid, his oxygen is low and he is struggling for his breaths. He sent us down to the GI lab for a test to determine his reflux status, but the radiologist didn't believe that it would lend any helpful information so she didn't do it. She instead checked the placement of his GJ feeding tube and established that the Nissen (that was done in March to fix his reflux) had definately slipped and it wasn't working properly. Really, no new info. We knew all of that. The radiologist suggested to the docs that Connor undergo a Gastric Emptying study so they are going to proceed with that on Wednesday. Basically this particular cardiologist wants to rule out any other thing, like aspiration pnemonia, so they can target the surgeons with the urgency to getting Connor's heart repaired. In the mean time, we sit here waiting. Little Bug struggling, Daddy and Mama tired and frustrated.
Thanks for your always faithful prayers and support. We love you all!!
Lovebug Hugs,
Lori
17 comments:
My heart goes out to you guys and what you are going through. I pray that they will do something soon so yourlittle bug can breathe better. He is a darling baby and we enjoy your pictures so much. I feel so bad for him and know how scary it is to not be able to catch your breath. I am praying for all three of you (or should I say four?) and believe that God will answer our prayers at just the right time. Hang in there. We love you! I have friends who are following along and they are so proud of you Lori. You are a witness to many many people during this time!
Love you, Shirley
Hi Lori,
I was told once that God may not show up when we want Him to but He always shows up on time. If the docs think Lil Bug is in congestive heart failure, I'm sure they won't dally long it will just seem that way. Understand fully your frustration, have witnessed family frustion many times. In the meantime prayers will wing their way upward in Connors name. God bless
Mo's Mom and Dad
Dear Randy, Lori and Little Bug,
I am praying for the three of you as always. But, I will add that the study on Wednesday reveals what it needs to reveal. Oh, how I pray that the doctors don't keep putting you off for his heart surgery. However, if Little Bug is too weak or too sick, I will trust that they would see this clearly and not operate under these circumstances.
Lori, how I pray that you can get some sleep. I imagine the pregnancy pains are exhausting you on top of not getting the quality sleep you so deserve. Oh, Lord, help Lori and Connor to sleep sound in you tonight.
Randy, I am glad that you are home safely. See you soon.
Love,
Auntie Heather Milliren
lori if you need anything just call. we are all praying for you and your family! we will be there next week for heart clinic and for othro so we will stop by and say hello and hope that connor is doing better! hope your morning sickness is a little better too!
wyndi steven and izabell
I will add you all to my prayers. God is a Mighty God and he hears you.
Peace Be With You
Kim
Oh you guy's my heart hurts for you. What a difficult thing to be waiting & waiting. But we will dwell on positive. The doc's MUST be sensing urgency by now. We will pray for exactly the right timing for Connor's surgery to be scheduled & that the Lord gives you an abundance of strength. Lori, my prayer is also that in the midst of all this that you will be able to find rest & solace while you sleep & have peaceful slumber. Jesus, calm Lori's heart to get the rest she needs.
Sending you hope, love & above all prayer's. Hope you feel them.
Give Connor lot's of hugs & kisses from us, o.k?! Love you Little Bug.
Auntie Teresa
Ok Lord, we need a MIRACLE here. Lori and Randy I am so sorry to hear this, I know you must be sooo discouraged and broken for Connor. It amazes me how that little guy keeps fighting and fighting and plugging along. It does not seem right at all to have to watch your child go through this and I do not understand but thank the Lord that His promises are TRUE and they are the one and only thing that you can hold onto right now. I know I am not telling you anything that you do not already know but please know that there are many praying for you and your family and we will NOT STOP!
Love
Tammy
I AM SOOOOO IN AGREEMENT WITH "TAMMY" AND HER COMMENTS UP ABOVE!!
LOVE YOU GIRL AND WE WILL NOT STOP PRAYING FOR CONNOR!!
LOVE YOU GIRL!!
DAWNITA
How absolutely frustrating! I feel so bad that little Connor is going through so much and there seems to be no concrete answers except immediate heart surgery. Praying the doctor's will realize this urgency and get him on the schedule ASAP...always in my prayers.
Hello my friedns! Oh how my heart feels with yours. We are praying praying praying! Also, one of the ladies from my church asked me to tell you "hello" from your family here in VA who you don't know, but who loves you and is praying diligently for your family. God has been so faithful to your family. He continues his faithfulness and his tender love towards you is never ending. How awesome is that to know. I know you know that and I know that it sustains you through every difficult moment. His thoughts are not our thoughts and his ways are not our ways and his timing and purposes are always perfect according to his tender love towards us. We have placed Connor in His hands and He cares for him every second of every day. Thank you Lord!
I love you all. Please give little Bug huge hugs and kisses from his Auntie Heather #2.
LOL
Heather
Hello my friedns! Oh how my heart feels with yours. We are praying praying praying! Also, one of the ladies from my church asked me to tell you "hello" from your family here in VA who you don't know, but who loves you and is praying diligently for your family. God has been so faithful to your family. He continues his faithfulness and his tender love towards you is never ending. How awesome is that to know. I know you know that and I know that it sustains you through every difficult moment. His thoughts are not our thoughts and his ways are not our ways and his timing and purposes are always perfect according to his tender love towards us. We have placed Connor in His hands and He cares for him every second of every day. Thank you Lord!
I love you all. Please give little Bug huge hugs and kisses from his Auntie Heather #2.
LOL
Heather
Jesus, touch Connor's body we pray. We pray for a miracle Lord. We know you are a miracle working God. Jesus, give Randy, Lori & Connor rest today and let them see the light at the end of the tunnel and Lord continue to direct the hands and minds of the doctors as they care for little Connor. AMEN!!
Lori, in the midst of your very justified frustration, you have touched my life and I'm sure the lives of many others. The other day when you blogged of how frustrated and exhausted you were and tire of telling the story over & over to the doc's, you concluded in saying you went to bed and opened your bible and at that very moment the Lord spoke to you so clearly in the first book of the bible. You are such a Godly example to all of us. Yes, in the midst of your frustration when so many would turn their backs on God or simply be just too tired to read the word, instead you go directly to the Lord for your comfort. Thank you for being that example and touching my life today!!!
We love you three!
Sue & family
Lori I should of asked and I hope this is ok, I linked Connors blog to Skylars. We have alot of family and friends who are always asking about him. So I hope that is ok. Try and get some sleep tonight, k. Love Ya Big Hugs Sheila
Our hearts go out to you and your family, I can't imagine but God knows and sometimes we have no idea why??? but he has the ultimate plan for our lives, these trials only bring us closer together. All of this will be used for him, hang in there stay strong for connor and for that precious one inside of you. We love you and will continue to pray for a miracle for connor.
Love your family Amber Aaron Caleb and Isaac
Lord, I ask that your hand be upon Connor tomorrow during the gastric emptying study the doctor's will perform. May you show them what is going on inside precious Little Bug & give insight into his situation. Surround Connor with your heavenly angels & provide relief I pray. Litterally lift up Lori & Randy with your peace & comfort that only you can give. We know you are the God of all HOPE & we trust in you. Lord, give Randy & Lori "the peace that passeth all understanding". Amen.
Love & Prayers, Teresa
Connor, You keep on fighting & trusting in the Lord & those doctor's of yours. I am hoping to come down soon so I can hold You & plant lot's of kisses all over your adorable face. xoxoxoxo Auntie Teresa
Lord,
We praise you for Connor's life and we pray that you will give him the strength required to fight through this ordeal. You know what is best and at this point they only have you to trust in. Please steady their hearts, minds and souls. Bring resolve to this issue and peace. We know you are a God of miracles and we know that you care about each and every one of us. Help them to continue trusting you. Wrap your big arms around Randy, Lori and Connor and hung them tight. They really could use some snuggle time with you.
We will continue to pray with you.
We love you!
LeeAnn Webb
Keeping Connor in our prayers! He is such a fighter! Praying that the Lord will guide the decisions of the doctors and that Connor will get what he needs and be able to come home healthy and strong!!!
Hugs!
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