We took Lilyann to the pediatrician this morning, we were concerned about her eating...she wasnt eating more, but just staying the same..and she looked as if her face was thinning out...they weighed her...we found out that she hadnt gained any weight since she was last weighed at the ped's office on Jan. 30th. So the ped. says she is off to call the heart doctor and for us to sit tight.... (this was the start to my long day)we finally made it home...Lily did really well with her echo again..she just stared at the guy doing the echo and then fell asleep. She weighs 9 lbs (that was at the dr's office in Dallas....at the pediatrician's office today, she weighed 9 lbs and 2 oz) We didnt see the same specialist, because she was off for today, but we met with her husband...and he feels that lily definitely needs the surgery. He told us to talk it over..we werent going to be rushed into a decision...Well, by the time we got from the room to checkout...Jed and I both decided lets just go ahead with the surgery...meet with the surgeon and set everything up. So we will be awaiting a call from the surgeon on monday. The heart specialist told us to take her off the concentrated formula...and make it alittle weaker ---which would be normal...1 scoop to 2 oz of water....and he put her on prevacid...to see if it would help with her eating ...He finds it odd that she rarely takes more than 1 oz at any feeding...he said there could be an underlying feeding problem...but since he is not a dr in the field, he cant be sure. So all in all, the dr upped her medicines...and added a medicine...changed her diet...and we have decided on the surgery....so now we are just going to play the waiting game. Oh! from the results of her echo today, the dr said that there has been no improvement with the hole in her heart...the hole hasnt gotten any bigger and it also hasnt gotten any smaller.
On the weight issue, according to the heart specialist we saw today, from her visit on Jan 24th and the visit today...Lily has gained 10 oz..they are concerned with the weight...that is why they suggested scheduling the surgery to fix the problem.
On the weight issue, according to the heart specialist we saw today, from her visit on Jan 24th and the visit today...Lily has gained 10 oz..they are concerned with the weight...that is why they suggested scheduling the surgery to fix the problem.
I know my email to everyone sounded so rushed and frazzled earlier today (this is what caused me to be all frazzled)...the pediatrician walked back in the room after calling the specialist in Dallas and said, "how fast can you pack?? Because i think they will be doing something today about all this...they might admit her and put in a feeding tube to get her eating." (all in my own words) Which all this scared me half to death..i know that the not gaining weight was definitely a problem...I just was not ready to hear what the dr was saying.
At least now, I can know exactly when and how things will be happening...and we can just take it one day at a time. We can be prepared mentally, physically, and spiritually.
Continue with your prayers...and thank you from the bottom of our hearts for your prayers and for keeping Lily in your thoughts and prayers. That rainbow should pop out of this storm sooner or later!
Continue with your prayers...and thank you from the bottom of our hearts for your prayers and for keeping Lily in your thoughts and prayers. That rainbow should pop out of this storm sooner or later!
3 comments:
Yes indeed...We are praying for ALL of you, and also the doctors and surgeon. Lily is in God's hands and we pray that He'll also give the doctor's widsom and guide their hands as well. We send our love and (((BIG HUGS))) to each of you!
Aunt Sue and Uncle Millard
Dearest Jed and Joy,
Tears swell my eyes as I read this. I wish so much to be able to take away the deep ache in your heart you must be feeling, but I cannot. I can only point you to the ONE who can take away the ache and HE alone can heal the hole. Remember that mankind are only the tools He uses for His service. Place not your trust in men, but in God..."Some trust in chariots, and some in horses, but we will remember the name of the Lord our God" Psalm 20:7.
I know many times in my life, I did not even have the strength to open God's Word to read for I was hurting so badly. I was overcome and overwhelmed. Men's words seemed to flood and conquer my mind. I could not take them all in. I was confused, but my God is not the author of confusion. Through my abundant tears, I desperately clutched the precious Bible to my heart. I felt its words piercing my heart, filling my soul, and covering me with a blanket of peace in my mind. It was then God gave me the strength to open His Word and saturate myself with the food I so greatly needed...the food and nourishment of God's Word.
His Word declares, "...The effectual fervent prayer of a righteous man availeth much" James 5:16c. Our little Marie prayed for cousin Lily tonight. We will also lift up Lily to the throne of Grace. Seek God's Word, Jed and Joy. Open its pages and let it fill your heart with hope, comfort, and strength...even when you do not feel you have the strength too.
You do not stand alone for HE will never leave you nor forsake you.
Christy for All
Philippians 4:13
Dearest Cousin,
"Great is the Lord and greatly to be praised; and His greatness is unsearchable." Psalm 145:3
I am praying for little Lily. She is so precious. The Lord is in control...He will be glorified. Rest in Him. I love you all...keep your eyes on our wonderful Savior.
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