Our little man continues to make progress. He is now up to 8cc per hour of breast milk, he is continuously gaining weight, and is weighing in at 4lbs 10 oz. today. The docs have been giving him his feeds directly to his intestines up to this point which has worked out nicely as he has not had much spit up etc. and he has been able to gain weight. Today they introduced 9 cc's to his tummy and he had some major spit-ups, so they backed the feeds down to 8cc's an hour in hopes that his tummy will be able to digest that much and that he will not spit up too much.
The feeding into the tummy will also help his liver to begin to function and have to work on real food, instead of the man made nutrition he has been getting up to this point. The docs were quite worried about his liver a couple of days ago and now it seems that they think it should correct itself over time wothout any surgery etc. Yippeee! We are keeping our fingers crossed!
Another concern has been the development of the vessels in his eyes. His prematurity has the potential to affect his vessel development, and there is potential to have detaching of the retina which would affect his vision- so we are praying that his vessels will develop normally and that there will not have to be any intervention there.
Other than that we see the cardiologists daily in the hospital and they say his heart condition is stable at the moment. They informed us yesterday and today that he is in a heart failure condition and they are just tweaking everything with medications until he can get his full repair and then he should be out of the heart failure mode.
It is VERY hard to hear that your baby is in heart failure when he looks so good, and seems to be acting and looking more like a healthy baby finally. As I sit and hold him and we have our little talks and he makes these cute faces at me I sometimes forget that he has so much going on in his little body, and that he still is a sick little guy with such a long road ahead of him. When it is just me and him and I rock him and can smell him and sing to him I forget everything else, and for those few moments it is just heaven. I know he knows me and that we are designed to be together- he as my son and me as his mommy forever.
He has already taught me so much. I have NEVER prayed this much in my entire life. I have spent hours talking with Heavenly Father- pleading with Him, that if He will allow me to raise my son on this earth that I would do anything and everything in my power to teach him and love him and help him to be the man God wants him to be. Lincoln has taught me what it means to love someone more than anything in the whole world. He has taught me that there is nothing more important in the whole world than family and your health and spending the time we do have together. He has taught me more than any experience in my life has that God is in charge and that prayer works. I have never had the feeling until now- like your heart is beating out of your chest because you love someone so much, and want so much for them to be happy and have a healthy life.
Each day as I look at him, and touch his head and talk to him I just soak up his goodness and his strength. I used to wish that this was all just a bad dream, and that I would wake up and we would be having a healthy baby at the end of the month and I wished he was still baking nicely inside. However, recently I have come to realize and even have become thankful that all this is a very special journey designed just for us, and that we need to rejoice in the small things that happen daily. The triumphs of him eating a cc of milk an hour, or being ecstatic that he farted or had a poop. I rejoice everyday that his heart continues to beat and that I can kiss his face and he wrinkles up his nose. I rejoice when I look at the monitors by his bedside and his respiratory rate reads that he can breathe on his own. These are the BIG things that if I had a healthy baby I may have taken for granted, because I would have never known it could be otherwise.
Lincoln's story is a story of strength and hope and rejoicing in the small, yet miraculous things that take place daily. Each day seems to bring a new set of challenges to work through, but it also affords us the time to stop, and soak up the beauty of this little life that has brought a whole new meaning to the word LOVE!



1 comment:
Congrats on his baby steps! What a little cutie! I hope you are all being blessed with what you need!
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