The room was filled with doc’s, nurses, anesthesiologists etc. etc., due to Charlie’s current struggles this morning it was fairly unanimous that we hold off on the procedure. We will be working today to try to get Charlie breathing better and doing better overall. They will aim at doing the procedure this week sometime. Patience. Patience…
In His Grip,
The procedure will now be at 10am. Thank you to so many for praying during this time. I went home to give hugs and kisses and get a good snooze. As that often goes, he had a rough night and morning. They increased his oxygen support and pain Meds. We have had several new nurses that do not know him which makes our situation difficult. We are hoping for some good progress in the OR today! God is Charlie’s strength and mine too…thankful for his wings where our hearts are kept safe. May you enjoy the safety of the only place that will give you real safety- under His wings through the blood of JESUS!
I will post updates as I get them…
Recently I was in the presence of a friend who was in the middle of a big trial. The kind of trial that could rattle a man. A few of us were discussing with him how obvious it was that God had gone before he and his wife and prepared the way, down to little details. He mentioned that God is always at work and we need to have the eyes and heart to see it! His situation could have made him weak and frightened, but instead He was very strong and courageous. He could have been afraid and discouraged, but instead he was at peace and encouraged. He knew that God was with them. He knew that God had gone before them. He knew that God was even going behind them. We must have the eyes and the heart to see what God is doing…even in the littlest of things. Or maybe especially in the littlest of things.
A sweet little gift from the Lord. Charlie has two little baby pillows that we use in his crib. We had not had cases for them in a long time. This morning I asked my nurse if she would check the supply room for cases while she was gathering supplies. She came back with cases, but not just any cases. I chuckled at the fabric the cases were made of…Homerun! Nothin’ but Net! Homerun! Goal! Touchdown! Homerun! I giggled with God and his sense of humor. If you haven’t read the previous post, we have been praying for a “Homerun” with Charlie’s procedure tomorrow. I don’t know what kind of “Homerun” the Lord will grant us tomorrow, but I trust it will be the perfect “Homerun” in HIS eyes. Thank you Lord for showing your love, kindness, and sense of humor…even in the littlest of things.
By the way, this is a sweet ministry that anyone could take part in- sewing little pillow cases for the babies in the NICU. You could even pray for the babies that will be resting their precious heads on them. It seems there is always a shortage and I know there are other babies who need a “Homerun” while here. If anyone desires to do this, let me know and I can give you dimensions.
Please join us in praying for a HOMERUN for Charlie tomorrow!
One of Charlie’s favorite people…big sister Savannah.
Wow! We have come SO far! Charlie has climbed some serious mountains. We are grateful for your prayers and support in helping him climb! He continues to seem stronger and healthier since his heart repair. We are grateful for the success in that surgery.
Monday the surgeon will be doing a procedure that could (best case scenario) be what his fellow called a “Homerun!” The first of two goals will be to try some things that could allow food and gastric juices to travel from the stomach into the intestines the way they should. If successful, this would resolve our biggest hurdle. The second goal will be to replace the clogged feeding tube with a new one. If both of these goals are accomplished we will be in a MUCH MUCH better place and would begin to see HOME for Charlie in our nearer future!
The procedure is scheduled (hospital time) for 11:45 am on Monday. Unfortunately, it will require anesthesia and reintubation. This step is necessary in trying to get milk in his belly again. If both goals are unsuccessful, it could be 6-12 months before we can operate to get him on food. SO, please pray for Charlie again as he goes back into the battle.
1) For success in helping the stomach and intestines to communicate and for the feeding tube to be easily replaced.
2) For protection and safety for Charlie. Protection from sedation, intubation, and procedures.
3) That Charlie would be able to be fed and successfully transitioned home soon.
4) For comfort and strength as the pain Meds and O2 support continue to be weaned.
5) That Charlie’s little body would continue to adapt to a fully functioning heart so that he can manage fluids and oxygen properly.
6) That if Charlie is able to get milk, that he would tolerate and digest breastmilk so as not to have to use a predigested type formula.
This is a photo of Charlie just a few minutes ago in my arms.
1 Whoever dwells in the shelter of the Most High
will rest in the shadow of the Almighty.[a]
2 I will say of the Lord, “He is my refuge and my fortress,
my God, in whom I trust.”
3 Surely he will save you
from the fowler’s snare
and from the deadly pestilence.
4 He will cover you with his feathers,
and under his wings you will find refuge;
his faithfulness will be your shield and rampart.
5 You will not fear the terror of night,
nor the arrow that flies by day,
6 nor the pestilence that stalks in the darkness,
nor the plague that destroys at midday.
7 A thousand may fall at your side,
ten thousand at your right hand,
but it will not come near you.
8 You will only observe with your eyes
and see the punishment of the wicked.
9 If you say, “The Lord is my refuge,”
and you make the Most High your dwelling,
10 no harm will overtake you,
no disaster will come near your tent.
11 For he will command his angels concerning you
to guard you in all your ways;
12 they will lift you up in their hands,
so that you will not strike your foot against a stone.
13 You will tread on the lion and the cobra;
you will trample the great lion and the serpent.
14 “Because he[b] loves me,” says the Lord, “I will rescue him;
I will protect him, for he acknowledges my name.
15 He will call on me, and I will answer him;
I will be with him in trouble,
I will deliver him and honor him.
16 With long life I will satisfy him
and show him my salvation.”
I have been meditating on this Psalm since last week. I was with a friend here in the emergency room and as I searched for this Psalm to read to her, she and her mother began reciting it from memory! Then it was balm to a friend in difficulty later that day. Then my sweet niece expressed her ponderings on the same Psalm that day. After we shared our ponderings she sent me these photos from her family farm that are a delicate and powerful picture of our safety under the feathers and wings of God Almighty. Though the winds and waves can “seem” too big, too overwhelming, and too scary, HE will cover us with his feathers, his wings, and in HIM we find refuge and comfort. His faithfulness is our shield! Isn’t that amazing! Picture yourself being this tiny little bird cozied up in the warmth and safety of a Mighty and Powerful, yet Tender and Merciful God.
I hope this visual deepens your desire and longing to abide or dwell in the safety of the Most High… As it does me. Oh how the last few months have deepened that knowledge and understanding and desire for me. To know that there is no safety in anything, anyone, or anywhere else like the One who will command his angels concerning me – to guard me and lift me up.
An echocardiogram (also called an echo) is a type of ultrasound test that uses high-pitched sound waves that are sent through a device called a transducer. The device picks up echoes of the sound waves as they bounce off the different parts of your heart. Monday this was done on Charlie to see how well the repair went. It was beautiful! Where there was no septum/wall down the center, there is a nice strong wall. Where there was only one valve, there are now two. It was good to see his heart working and pumping blood properly. All indications are that the surgery was flawless. This surgery was a very big boost for Charlie. He came out of surgery looking pink. He healed well. His incision site looks great and is mostly healed over.
They had planned to hold our room in the NICU for Charlie while he was down in the cardiac unit but as the hospital began to bust at the seams with flu season they decided to have us move out completely. I cleared out the room expecting that we would get a different room when we came back. However, we were blessed to find out that our nurses and cleaning lady had advocated for us to be put back in our old room-thank you Lord for our sunny room!
Charlie is doing pretty good. There have been hiccups and lots of things happening since heart surgery, but that is life in the NICU. It is a challenge as a mom to discern what is necessary as different Meds or treatments are recommended. I definitely want what will help Charlie but don’t want things that are frivolous or over the top. I have learned a lot about what questions to ask and to really run something down if it doesn’t sit right with me. I have learned that even though I do not have a medical degree, I am a mom, and that counts for a lot. God gives moms wisdom and instincts in regard to their babies- that is a valuable gift and we as mothers have to see it as that and respond to how the Lord is leading. These are foreign waters but navigating them for the sake of Charlie is a delight.
Another good night for Charlie. I feel like I am getting another degree with this little dorm room and the high amount of information intake! It has been very interesting and a blessing to learn all about the heart. The sticker probe on his forehead measures the amount of O2 being used by the brain. That number has always been really good. The bandaid down the middle of his chest is the incision from the surgery. Today we have been getting rid of lines and meds. He takes good naps and then has happy alert times as well.
Above is a picture of a typical heart rhythm. It was a risk that Charlie could come out of surgery with an irregular heart rhythm that would require a pacemaker. Thankfully, his was normal. However, I learned yesterday that he was missing the “P” wave (labeled above) for a time. This is common after surgery and sometimes it will kick in once the inflammation goes down. Soon after I learned that he was missing the “P” wave which comes from the SA node, it started firing. Wow, truly amazing!
1) For Charlie’s lungs to heal and recover from the stress they have been through with the unrepaired heart and now being post-op. We are hoping to extibate him in the next few days.
2)Smooth weaning of pain meds.
“If created things are seen and handled as gifts of God and as mirrors of His glory, they need not be occasions of idolatry – if our delight in them is always also a delight in their Maker.”
Psalm 36:5 Your love, Lord, reaches to the heavens, your faithfulness to the skies.
Happy 1st birthday to my sweet little friend, Lilly. I remember the day of your birth as a day that many beautiful things happened. It was a day that birthed a mother (your mom)of greater faith. It was a day that birthed a father (your dad)of greater courage. It was a day that birthed your sweet little twin sister (Ellen) who was privileged to be taken to glory, to be with Jesus. It was a day that birthed people all around you with more faith and courage by simply watching you and your family walk. It was a day that birthed YOU! Sweet, precious YOU! You were so beautiful! Your precious frame was such a miracle. YOU truly are created “fearfully and wonderfully”. We delighted to see you pink and healthy as you rested in your soft incubator and fought to grow, breathe, and thrive well.
What I didn’t know on your birthday at the hospital, was that the journey you and your brave mama had begun was preparing me and Charlie (who was being formed in my womb) for a NICU journey of our own. The time I spent with your mom in the hospital had begun to stretch my borders. I was forced to ponder and see God’s faithfulness -even in having a newborn in the NICU. I thank the Lord for you Lilly. I marvel at your strong and healthy body, and your bright and joyful spirit. You bring joy to so many! I loved getting to hold you and snuggle you while you slept a few weeks ago, marveling in God’s goodness and faithfulness in your life. May God continue to grow you in grace and the knowledge and understanding of our mighty God! The mighty God that knit you together and brought you forth with vigor one year ago…
Naomi holding her treasured friend, Lilly Grace.
Charlie had a really good night. His heart is functioning beautifully, like it never has before! His overall heart muscle has always been very strong and stable, but it just needed a few tweeks to be able to perform it’s proper function, for a full and long life. Charlie is moving more and starting to wake up from surgery. We can’t wait to see his eyes. We have excellent care and smart nurses. The technology and capabilities of the cardiac department are amazing. All that they have done for Charlie to correct his heart so that he can have normal function is really a gift from God. SO many people using their gifts and working together to help 1 little life. (1 very very important little life, mind you(; ). Today we will be supporting him as his body kicks back in gear and they are removing meds as soon as possible as they become unnecessary.
I am reading a book called Praying the Scriptures for your Children . This morning I read a principle in the book that says, “when prayer is your only option, you are in an excellent position to see God move.” Though prayer should be one of our first options, it sure is an excellent position to see God move. Thank you God that you allow us to see you at work!