Thursday, August 17, 2006
Pray For My Tummy!
Before we get into the update we just wanted everyone to know that we will be having an open house baby shower this Saturday. If you are in the area we would love for you to drop by and say "Hi" to Lincoln. It will be held at Campus Bible Church from 2:00-4:00 PM this Saturday, Aug. 19. OK....the update. Lincoln is growing and growing. He weighed in at 8 pounds this week at his Dr's apt. Everything is very stable with his heart and lungs right now, however, we have a huge prayer request. For about three weeks now we have been noticing blood in Lincoln's stools. At first we thought it was from being constipated which is sometimes normal to see, but when he started to become more regular and there was still more blood we had to rule that out. Then they thought it could be an infection, but when they tested the blood and the stools and they turned out negative that too was ruled out. Basically, what they are now saying is that Lincoln is experiencing what they call Colitis which is an inflammation of the colon. There are many things that can bring about Colitis. What they are thinking with Lincoln is that it is a malabsorption or an allergic reaction to his formula. This happens when the colon can not break down the proteins and nutrients in his formula to absorb them and the colon becomes inflamed and sheds off the inner lining of cells and we see blood. Well if you remember...Lincoln had a Chylothorax issue so they put him on a special formula that was already broken down. The ironic part of this whole thing is that the formula that he is on is what they give to babies when they have Colitis or a malabsorption issue. So the plan is to change his diet to a formula that is even more broken down. Hopefully this works because this new formula is basically the most broken down and pre-digested you can get...and if we still see more blood and he is still experiencing pain and a loss of appetite we will have to go to a gastroenterologist (a tummy Dr.) and they will have to take a look at his colon and see what's going on in there. Because of all this, he has lost some of his appetite and is not finishing all of his meal. Because of this we had to reinsert his NG tube. Lincoln is also experiencing an infection on his bum and some conjuctivitis (pink eye) in his eyes which does not help with the over all comfort. It's kinda weird thinking that here we have a baby that has a major heart problem and here we are dealing with all these other issues....praise God that his heart and lungs are strong and stable right now. Well besides all of that, Lincoln is really doing great! He is growing, smiling, sleeping well and is just too handsome. Sorry for the lack of pictures on this update...I guess that's just incentive to come see him yourself at the shower. And for those who live far away...we will post new pics soon! Please pray that: 1 - This new formula works and he can digest it without any problems. 2 - His colon gets better and we do not see any more blood in his poops. 3 - He doesn't experience any more pain. 4 - That he regains his appetite and we can take his NG tube out. 5 - His Conjuctivitis and bottom infection goes away. Talk to you soon...We love you all! J&K
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A friend from Stanford posted this on her Carepage.
Being a "heart parent".
What does it mean to be the parent of a child with a heart defect?
It means going into your baby’s room a dozen times a night just to check to see if she’s still breathing. It means standing over the crib to watch the chest rise and fall and when you don’t see it move, you begin to panic and put your head down close to your baby’s face to try and hear her breathe. It means that when you don’t see the chest move and you don’t hear her breathing (because your own heart’s beating is drowning out any other sound in the room), you put your finger under the baby’s nose to feel the air on your finger – until you wake the baby and it stirs – and you’re thankful, so thankful that she’s still with you. It means feeling a huge sense of relief when she hears you and opens her eyes and smiles. It means saying a prayer of thanks for another day. It means measuring out her medication and panicking if she spits some of it out. How much did she spit out? One cc? Two or three? Then wondering if you should guesstimate how much more she should have and if you’d overmedicate her. It means checking her nail beds against your own to determine how blue she is today. It means asking your husband, your mother, or your sister, “Do her lips look blue to you?” It means snuggling her in an extra blanket for fear she won’t be warm enough. It means worrying that even a sniffle could cause an infection that could harm her heart. It means taking your baby to the doctor and worrying that she will catch something in the waiting room, so you walk back and forth in the corridor until the nurse calls her name and takes you straight back to the examination room. It means knowing that everyday is a blessing and a gift. It means knowing that you are the luckiest person in the world, just to be a parent. It means cherishing every moment, every breath with such intensity that you feel tears come to your eyes for no apparent reason. It means praying for a miracle to save your baby’s life. It means praying your marriage is strong enough to endure the hospitalizations, separations, and grief. It means praying for the will to live, even if your baby doesn’t. It means your own heart knows a pain, no parent should know. It means feeling weak, helpless, angry, and depressed because your child’s fate is out of your hands. It means feeling strong, determined, and brave because you know you have to be. It means your love knows new unlimited boundaries. It means your pride in your child’s accomplishments is unparalleled. It means your pain has taught you a deeper sense of compassion than you ever imagined. It means we are all united by the same feelings. It means that we all know the mixed up emotions of dealing with death – but more importantly of living with life. It means that even though we are strangers, we are more to each other than friends could ever be.
1996, by Anna Jaworski
Thought you might like it.
From,
Terri & Mike...parents of another baby w/ a heart defect & a host of other issues.
We are continuing to pray and those of us too far away would love to see pics :) I am sure he is a handsome one!
He will be in our prayers for sure.
Hi Josh and Kristen,
Just a quick note to let you know I continue to pray for Lincoln and his tummy/colon problem. I trust that by now he is doing much better. Anxious to see some recent pics of him and see how much he has grown.
Love the "being a heart parent" story. How precious for you to have the opportunity to share in something so special. I am sure you have gone through each of those steps and emotions.
I continue to pray for the 2 of you with all you are dealing with and trust that you are getting more rest by now.
Will check in later. It was a very busy week at work so I am really trying to rest this weekend in preparation for Monday when my boss returns from vacation. God's blessings to each of you. Hugs to you, Lincoln and family.
Love ya much,
aunt donna :-) Isa. 40:31
Wanting you to know we continue to pray for you two and for Lincoln, that God will continue to heal his precious little body. Also that you will continually sense His presence in amazing ways. We love you guys!
So appreciated the post from Stanford. I'm sure it strikes a chord with anyone who has a child with special medical needs. I know it does for me. God's blessings!
Hi Guys! Just wanted to say we are thinking of you, though we haven't been there to visit you yet! We got Katie moved back in at Biola the day of your shower at church. Then last week was Loren's first week of teachers and students at the new school in Modesto. We thought we might come see you this past weekend, but ended up just resting up after the busy first week. Daniel said it was great to see you all at church, and that Lincoln looked really great! Since we're going to stay put in Chowchilla now that Loren has the job up north, we are thinking we should find a church here again, so we tried one out on Sunday -- Wow, did we miss Campus!!! We'll talk to you soon. Love, Loren & Wendy.
I am dying for another update on little Lincoln Carter :-) .... I hope all is well... I check the blog everyday! Yep, I'm a blogster!!
Terri, Michael & Matthew King ~ Las Vegas NV
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