Caroline is doing great off oxygen! We basically take her off when she is awake; back on when she's sleeping. Each day her sats have been higher and higher. She seems to enjoy the freedom as much as we do. We ate dinner tonight on the back patio; wireless baby and all!
I took Caroline off oxygen tonight to try eating some solid foods (not that one has to do with the other; just makes it easier). She didn't do so great at the solids but she is doing great at being off oxygen. So far she has been off for about an hour and is keeping her sats up! Boy is she cute :)!
By the way, at Ronald McDonald House, each room is sponsored by a family or organization. This is who sponsored ours . . .
How is she different? In every way possible! You can't even imagine.
She is hungrier, more alert, more engaging! She even burps, toots, and poops better! Literally, every part of her that requires blood flow (every part of her) is better! Her smile is bigger and her laugh is louder. She now gulps when she eats - didn't even realize that she didn't do that before. Her coloring is a little more pink but the poor baby isn't going to be able to overcome getting her mothers coloring. She is stuck being fair complected.
She's still a good sleeper but I'm not sure we are going to be blessed with that much longer. With her increased appetite, she is wanting to eat earlier and earlier in the morning. Pretty much every morning so far she has wanted to eat an hour earlier than the morning before.
She is on a new medication called Sildenafil. I am proud to say that this is Viagra! This is significant because it is very hard to get. We had to wait 3 days to get insurance to approve it and therefore had to pay cash for a 5 day supply - Viagra isn't cheap!! This is supposed to do the same thing as being on oxygen so she shouldn't need it much longer. She is on a very low setting so hopefully she will be off within the week. I have been weaning her everyday but she is still showing that she needs it; especially at night.
It's hard to believe that just a week ago we were sitting with her in the Cardiac ICU. Can't wait for the incision to completely heal and the steri-strips to come off! She is still pretty bruised from all of her IV's. She had one in each hand, one in each foot, and one in her neck. We go tomorrow morning to get her sutures out where her chest tubes were. Hopefully, this won't be a big deal. We see her cardiologist next week for an Eco to make sure everything is as it should be.
One last picture of her chest without the big scar. You can barely see her scar from the hernia repair. Hopefully her heart repair scar will be this light soon.
In the car on the way to Dallas. She loved getting to play with her brothers.
In Ronald McDonald House before our long day of tests Monday. She just discovered her feet a couple weeks ago.
She wanted so badly to grad her feet while she was getting her blood drawn on Monday. We had to hold her arms down though so the tech could get a good draw. No problem for this baby, she just brought her feet to her hand.
We arrived at admissions at 5:20 am, got registered shortly after 5:30 am, and were taken back to pre-op by 6:30. The anesthesiologist took a little longer to get ready than they anticipated and our 7:30 start time got a little delayed.
In Pre-op just before they took her back. Just as happy as ever!
Caroline fell asleep in my arms (after playing sweetly in my lap) as we waited for her to get taken back. Because she was asleep, they allowed me to carry her back to the Operating Room (or as close to it as a parent can get). What a horrible feeling it was to let her go . . . sleeping peacefully, without a care in the world.
We were told that the surgery would take 4 to 5 hours.
We got a call around 9 (I think - all running together now!) saying that all preop was done and the doctor was ready to begin. We got a call around 10:00 that she successfully went on bypass at 9:53 and the surgeon had started to repair the hole in her heart. We got the last call at 11:15 saying the surgery was complete and the surgeon was coming to talk to us. Beginning to end - less than three hours. Yet again, our expectations are exceeded!
We were able to see Caroline as she was carted from the OR to her recovery room just for a brief second. It took about an hour and a half to get her settled in her room.
A sight I am way too familiar with
They thought she might need nitric oxide to keep her oxygenation levels up but she didn't. They told us that she would be sedated and intubated for 24 hours. The plan is to extubate her in about an hour - she has been breathing on her own for an hour now.
If the extubation goes well, we should be able to start feeding her sometime tonight. If she continues to do as well as she is now, she should get most of her IVs out within the next day and will be moved off of the Cardiac ICU. Please pray that she continues to do well.
Our sweet Caroline and my family have had an army by our sides today. What a blessing it is to be surrounded by such faithful people who will take the time to pray for us. After we left Dell, I wished I had compiled all of the scripture that was sent our way. I couldn't let the moment pass this time.
Here is some of the scripture and prayer that were sent to me today:
"Know that the God that SPOKE the universe into existence is going to sustain you today!"
"Have you not known? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He does not faint or grow weary; his understanding is unsearchable. He gives power to the faint, and to him who has no might he increases strength." Isaiah 40: 28-29
"Do not be in dread or afraid. The Lord your God who goes before you himself will fight for you . . ." Deuteronomy 1:29-30
"Jesus Christ is the same yesterday and today and forever." Hebrews 13
"Then your light shall break forth like the morning. Your healing shall spring forth speedily, and your righteousness shall go before you; The glory of the LORD shall be your rear guard." Isaiah 58:8
"Praying for Caroline today for a successful surgery and a quick recovery and for God's peace to be on you and Jesse, James, and Jack and Family. For God is able to do exceedingly abundantly above all that we can ask or think according to the power that works in us."
"Why are you downcast, O my soul? Why so disturbed within me? Put your hope in God, for I will yet praise him, my Savior and my God." Psalm 43:5
"Those who wait in the Lord will not grow weary, they will mount up like eagles!" Isaiah 40:31
"I will say to the Lord, He is my refuge and my fortress, my God in whom I trust." Psalm 91:2
"Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your request to God. And the peace of God, which transcends all understanding, will guard your hearts and minds in Christ Jesus." Phil 4:6, 7
"Cast your cares on me." 1 Peter 5:7
"For where two or three are assembled in My name, I am there among them." Matthew 18:20 "We are assembled here lifting your family up in prayer. As the bible says, God is among us." (love that one!)
"For God has not given us a spirit of fear, but of power and of love and of sound mind." 2 Timothy 1:7
"The Lord is my shepherd, I lack nothing. He makes me lie down in green pastures. He leads me beside quiet waters, He refreshes my soul. He guides me along the right paths for His name's sake. Even though I walk through the darkest valley, I will fear no evil, for you are with me; your rod and your staff, they comfort me. You prepare a table before me in the presence of my enemies. You anoint my head with oil; my cup overflows. Surely your goodness and love will follow me all the days of my life, and I will dwell in the house of the Lord forever." Psalm 23
"My grace is sufficient for you. My strength is made perfect in weakness." 2 Cor 12:9
"Do not fear, for I am with you; do not anxiously look about you, for I am your God. I will strengthen you, surely I will help you with My righteous right hand." Isaiah 41:10
"Stand still and consider the wondrous works of God." Job 37 :14
"Lord, you give true peace to people who depend on you, to people who trust you."
"For with God nothing will be impossible." Luke 1:37 "The things that are impossible with men are possible with God." Luke 18:27
"Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you nor forsake you." Deuteronomy 31:6
"Cast your cares on the Lord and He will sustain you; He will never let the righteous be shaken." Psalm 55:22
"Every word of God is flawless; He is a shield to those who take refuge in Him." Proverbs 30:5
"15-18We look at this Son and see the God who cannot be seen. We look at this Son and see God's original purpose in everything created. For everything, absolutely everything, above and below, visible and invisible, rank after rank after rank of angels—everything got started in him and finds its purpose in Him. He was there before any of it came into existence and holds it all together right up to this moment. And when it comes to the church, He organizes and holds it together, like a head does a body.
18-20He was supreme in the beginning and—leading the resurrection parade—He is supreme in the end. From beginning to end He's there, towering far above everything, everyone. So spacious is He, so roomy, that everything of God finds its proper place in Him without crowding. Not only that, but all the broken and dislocated pieces of the universe—people and things, animals and atoms—get properly fixed and fit together in vibrant harmonies, all because of His death, His blood that poured down from the cross.
"Right now, while you are just focused on your daughter, take time to rest at the feet of Jesus and rest in Him. Nothing special...He knows what is going on and desires a great deal to carry your worries. He is absolutely in control of all things going on around you right now, so just rest in Him. Kind of like Mary...Luke 10:38-42...just rest."
"Sarah - I have been in prayer for you and baby Caroline for a long time but today I got down and dirty with heaven. Know that you are lifted up often. HE is good and HE is loving and HE will answer our prayers. "
"Caroline - tomorrow is your big day and I am praying for your little heart. I know God has been with you all along and He will never leave your side. I pray that He continues to hold you in His arms as you go through this surgery and that He heals your heart through the surgeons hands tomorrow without any complications. You are such a beautiful, giggly girl and I know you will wake from surgery with a smile for your Mommy and Daddy. You are also such a strong baby and I know that strength will carry you far. I will also be praying for your Mommy, Daddy, James and Jack; that they can be at peace as you are placed in the surgeons arms tomorrow. God is good and while He protects you, He will protect them also. I can't wait to hear the good news tomorrow Miss Caroline. Get your baby rest today because tomorrow, well tomorrow is going to be an amazing day and I thank God for all He is doing."
" Dear Jesus - We lift baby Caroline up to you now. I pray that you will keep the Surgeon's hand steady and sure, as he is the one chosen to fix her little heart. God, thank you that you have such big wonderful plans for Caroline and you have already used her to touch so many. Thank you that she has no idea what is going on and that you will protect her and keep her safe during this four hour period. She is in your hands. Bless Jesse and Sarah tonight as they anticipate this big day. I pray that they will be able to rest in you and that their sleep will be sound and uninterrupted. Be with their spirit, Lord. Help them to completely rest in you, knowing that you are in control of everything. Thank you that just as Sarah has stated that she loves having a confident doctor, Lord, we have complete confidence in you. You are amazing and we thank you in advance that we can trust you completely. Thank you JESUS. We love you!
“I thought of your sweet Caroline. I said a prayer for her, her medical team, and the rest of the family. You all have gone through so much but a reassurance came over me that the Master has a plan. I offered a prayer of thanksgiving for blessings already given and asked that He would continue to give you strength and peace. I eagerly await the news that all has gone well and you all will be back home soon! I send you my prayers and my love!
Wednesday marks the beginning of Lent...a time to focus on the suffering of Christ; but with this remembrance also comes the anticipation of the resurrection. A miracle at the end of great tribulation. I promise to pray earnestly during this holy season that the Lord of Easter will send special blessings on His and your sweet baby.”
"How precious to me are your thoughts, God. How vast is the sum of them! Were I to count them they would outnumber the grains of sand" Psalm 139:17-18
"You, Lord, give perfect peace to those who keep their purpose firm and put their trust in you." Isaiah 26:3
"The Lord is my helper; I will not be afraid." Hebrews 13:6
"Praise the Lord, O my soul, and forget not all His benefits -- who forgives your sins and heals all your diseases! He will heal Caroline!"
Thank you to everyone who has lifted up our family and Caroline. In the words of one of my sweet friends, "You've got lots of people covering those docs in prayer and petitioning for protection for your baby. I bet it'll be hard for them to move around in that room because it will be so full of the Spirit and of angels!"
One of the amazing things - I don't think I got a duplicate scripture all day! So powerful! Thank you Jesus, for allowing us to rest in You!
Caroline's surgery is tomorrow morning at 7:30. We would greatly appreciate your prayers. While we know it is necessary for her to have this done, it breaks my heart to see her go through it. It is hard to wrap my mind around the thought that someone will be looking at my daughter's heart - hearts aren't meant to be seen!
We met the surgeon today. He is clearly one of the best. I told Jesse, "I like confident doctors!" although I'm not sure they come in another variation :)!
They told us that the surgery would last about 4 hours and they will probably keep her sedated as long as she is intubated which will be about 24 hours. If she extubates successfuly, she should be able to be home within 7 days.
Will you pray for our sweet Caroline? Pray that the surgery is a success, that her lungs will tolerate the stress and that she will extubate successfully. Pray for the surgeons and all persons dealing with her. Pray that she will be a light to them as she is to everyone that meets her.
"The Lord will fight for you. You need ONLY be still."