Feeding was a little stressful today. One of the issues we have had to deal with is that because of Levi's low muscle tone in his neck area he is having trouble drinking "thin liquids" (breastmilk, formula, etc.) The trouble is that we all have a flap that automatically snaps closed over our air passage way when we swallow to prevent liquids and food from getting into our lungs. Levi's moves at a slower pace and plain breastmilk is penetrating into his airway. Also, because of low tone, he is showing no outward signs (coughing, gagging, etc.) that would clear his lungs or indicate to us what is happening. Therefore we have to thicken his milk so that it moves more slowly, allowing more time to pass before it reaches his air passage. However, the thicker milk is much like drinking a milkshake...it's very hard work for Levi! The doctors want him to drink a certain amount at each feeding (every 3 hours) and he only has 30 minutes to drink it before the rest is given by feeding tube. He hasn't had to be fed by feeding tube since Friday, but each feeding is slow going and the poor baby is just so tired and full by the end of the feeding. One nurse mentioned that he may have the feeding tube removed tonight and I'm praying that happens. It will be so nice to not have the threat of the feeding tube anymore. Also, he coughed tonight when we gave him some medicine orally and it went down the wrong way which is a huge improvement. I've also noticed him moving his head and neck well.
We are very hopeful that we may be able to bring Levi home this week...maybe even as soon as Wednesday!
We had another reason to celebrate this week...our Eli turned 6 on Friday! With the help of friends we were able to pull off a surprise birthday party...
The kids were at a friend's house while we were at the hospital, but we left a little early Friday night. Eli walked in to a Star Wars themed surprise party thanks to our friend Meagan who spent the afternoon decorating for us.
Another sweet friend, Cheri and her son baked and decorated this too-cool R2D2 cake.
Those sweet dimples are one of my favorite things to look at! I can't believe how big he is.
On Saturday, the kids spent a much-needed day with Daddy at the zoo. (That's my lovely sister-in-law who was kind enough to help out her big brother for the day while I was at the hospital.) The kids have been spending every day with a different friend or family member and they have all been holding up so well despite this two-week interruption to their routine. Now that things are going better with Levi, Chad will be staying at home with them while I am at the hospital.
Please continue to pray for our little one ... especially for strength and endurance and continued improvements in feeding. Please pray that his feeding tube would be removed and that his temperature would continue to remain at the right level. Please pray that God would heal his brain completely with no long-term effects. And please pray that we would be able to reunite our family at home this week!
One more thing...if you are so inclined to lift up a prayer for Levi, would you also pray for another little one in the NICU. I don't know his name, but I met his mother briefly a couple of nights ago in the waiting room. Her baby boy was born at just 24 weeks and is still less than 2 lbs. They are just hoping to bring him home by Thanksgiving. She was crying as we both left the hospital this evening and said that her baby had a bad day ... This has truly been the longest week of my life. Hours in the NICU move so slowly, especially the hours when your baby is not improving but seems to be getting worse. I cannot imagine what it must be like for this mother...her "longest week" is weeks and weeks.
"I consider that our present sufferings are not worth comparing with the glory that will be revealed in us." -Romans 8:18