Pitiful! This is how we all felt when we discovered more blood in Martin's stool. He's actually been having some really bad tummy aches lately and he's been struggling with it. Really feel bad for him -- poor guy.
Mommy and Martin bonding time.
We love our little Baby Martin. He's had it rough. Already 5 weeks old and hasn't been outside the PCICU room yet. Pray he gets home soon.
More blood was found in his stool (dirty diaper) yesterday morning. His feeds were stopped as a result. Ugh! More x-rays were taken and they have still ruled out necrotizing enterocolitis -- although we understand that the surgeon has ordered another x-ray and blood gas for this morning to be 100% sure. So, we'll post an update in the morning.
The re-appearance of blood is dreadfully discouraging but in some ways it isn't too surprising because for the last few days since the last blood scare Martin has been much more fussy than normal. It seemed obvious to us that he must be having some pretty bad tummy aches. And yes, this time the lab confirmed it was indeed blood. He just didn't seem himself the last few days. There were times where it would be very difficult to console him and get him to rest. Yesterday he was awake just about the entire day -- very unusual. Any parent of very young children will know how stressful this can be. But in Martin's case, all the cables and lines still attached to him makes it impossible for us to just sweep him up and walk around with him like a normal baby. Martin is pretty much "chained" to the bed all day and we remain stooped over it most of the time to do what we can to comfort him. It makes for long days and we just know Martin is miserable during those episodes. Oh, how Martin will so enjoy the fresh air, the sunshine, and just being outside!
So the bottom line is that they have decided to change his formula to something that should be even easier on his stomach. He was on Pregestimil, but now they have him on 10mL (half dose) of something called Elecare. This new stuff is supposedly pretty bad tasting and smelling but they say the babies don't care because they don't know any better (or so they say). But apparently it's the best formula to give babies that may have any kind of food allergies and it's the easiest thing for the gut to digest. They don't know if Martin is lactose-intolerant, but many other "heart moms" have found this Elecare formula to work for them when nothing else would. The cardiologist said that these blood-scares are giving him gray hairs! We are running out of things to try so we really need for this to work for Martin.
We have been in Charleston now for over 7 weeks and it's looking like it will easily be over 8 weeks because of these setbacks. Wow! We never would have dreamed that we would be away from home for 2 months. Greenville hardly even feels like home anymore but as much as we have grown to love Charleston, we're REALLY ready to get off this roller coaster ride now. On a brighter note, our children will be visiting us again tomorrow for a few days so we may not post again until after they leave.
If you remember to pray for Martin, please pray that he would not have any more blood showing in his diaper and that he would tolerate this new formula without any fussy, tummy aches. Please pray that we would migrate out of the PCICU and into a regular hospital room (soon!) where we can stay and sleep with Martin 24x7. Because it will be from there that we can finally get back home. Thank you.
All of this up and down is getting tough. And unfortunately, our frustration is beginning to show at times. We need a fresh injection of grace -- again. Some time ago, a friend once shared with us a precious verse in Psalm 27, "I had fainted, unless I had believed to see the goodness of the LORD ... Wait on the LORD: be of good courage, and he shall strengthen thine heart: wait, I say, on the LORD." -- Lord, help us not to faint. Help us to be of good courage. And, Lord, teach us to wait. Give us grace, wisdom, and please show us the way forward.
Update 11:30am: He is back on full feeds (21mL/hour) with the new Elecare formula. We just spoke with the doctor and he is happy with the x-ray results and with how Martin looks. He said that sometimes the best gauge for the baby's health is just how he looks. So, once again, full steam ahead!
Praying with all my heart- you are not alone. Jesus is a healer n I believe your baby Martin is healed completely in Jesus Name. We shall see this happen ! I know that I am far away but please tell me if I can help besides prayer
Thanks for posting the update, Steven. I'm glad to hear that it is "full steam ahead, again!" In the pictures that you have shared of little Martin, he does not appear to be a sickly baby. I agree with your doctor that Martin's healthy appearance is a good indicator.
Hi. I saw your post on facebook through a friend of a friend. I wanted you to know I'm praying for you. Our daughter was born at 24 1/2 weeks and I know all to well the roller coaster that is your life right now. Hang in there. God is good all the time and will walk with you through this, even when you're mad at him. By the way, Nadia is almost 3 and doing fine.