Charlie with Great-Grandma




Charlie watching Ambrose's mobile from his stroller

post-bath Ambrose

Well, Charlie has been doing very well at home, eating and sleeping like a champ and acting like a regular baby - like Pinnochio says, "I'm a real boy!" He has been in to visit Ambrose several times since his discharge and they both seem to enjoy it.

Ambrose has been doing a little better, he was able to wean to 1.5L high-flow oxygen down from 2. He has had some pretty impressive projectile vomit so his feedings have been changed. He gets the same amount (72cc) every four hours, but now it's continuous over the four hours instead of just one. So like his big brother, Josef, (and their mommy) he eats all day and all night long. In another week he'll repeat the barium swallow study to see if he is able to nipple-feed without aspirating the milk. Hopefully if he is able to breathe easier, that will resolve his feeding issues.

John Paul had his preschool graduation and ice cream social this Friday and immediately afterward he asked, "Do I have school tomorrow?" so I guess he didn't really get it. But he is looking forward to karate camp this summer.

Josef attended his first session at the Little Gym with Daddy this Saturday and will continue with that until August. He still repeats everything John Paul says and does. By the time I can ask John Paul to get down from the kitchen table, and he asks "why?" I can point to Josef (who has already crawled up there too) and say, "that's why!" But luckily some things he imitates are useful, he has shown an interest in using the potty and made his first successful attempt this week.

Most days the boys will be home with Mom this summer. We've got some homeschooling plans to keep them busy and there's plenty of local free activities - next week some firefighters will be at the Peter Piper Pizza.

Day 105

Current weight: 6lbs 12oz (3065 grams)

There has been a few changes with Ambrose over the last week. He was having difficulty feeding and it was determined that the nipple on the bottle was the problem. The doctor wrote an order for him to only use a cross-cut nipple, instead of a high-flow single hole nipple. Well, he didn't like it at all. In fact, he only would take 5-10cc of milk and he is supposed to take 70cc. The nurses all week would have to throw out milk and use new milk in the feeding tube. The reason the milk was thrown out is because it was mixed with Simply Thick to help Ambrose from aspirating. This weekend he was switched back to the high-flow nipple and he started to take larger amounts of milk...between 25-35cc a feed. The problem is that he began to cough, gag, and, sometimes, brady (where his heart rate would drop to the lower teens!) So the thought is that he may not be able to tolerate the honey-thick consistency either.

Today the doctor wrote an order to discharge all bottle feedings and return to the NG tube feedings. Ambrose will rest his lungs for two weeks or so and then will have another Barium Swallow test to see if he is aspirating when he is bottle-fed. We think this is good for him at this time. He needs time to rest and let his lungs grow. He's working too hard right now while he bottle feeds. Maybe in the next couple of weeks his oxygen will be weaned and he'll be in a better position to feed with the bottle again. If the feedings don't go well for him and he goes down on his O2, then he may be discharged with oxygen and a feeding pump, but with a gastric tube. We prefer he comes home with no feeding issues, but he needs to stop inhaling all his feeds first and grow his lungs.

Ambrose also had an Echocardiogram last week. After reading the results, a doctor determined that there was a mass near Ambrose's heart. He called for a lateral x-ray for clarity. After this was performed, the doctors were able to see that it was not a mass, but his thymus, which is larger in infants. We were a little scared at first, but extremely relieved with the final results.

Charlie is doing well at home. He is growing quickly! Today he made an appearance at his brother's bedside. Gina took him in to see Ambrose and for their weekend nurse, Terri, to see him. They weighed Charles and he is 7lbs 12 oz (3530 grams) and his length is 18 1/2 inches. He's a full pound bigger than Ambrose right now.

Please keep Ambrose in your prayers. The nurse today said he could really use a miracle.

Charlie visits Ambrose

Ambrose doing better

Early last week, Ambrose's nurse suspected that he may be refluxing so they did a barium swallow study. It was observed on the x-ray that he is aspirating his feeds (this is likely what caused him to develop pneumonia at Easter). He will still receive most of his nutrition through the feeding tube, but when he is willing to bottle feed, he can take breastmilk treated with simply thick. He will be able to swallow thinner liquids more successfully once his lungs are a little more mature. Babies have been discharged from the hospital on simply thick, so that won't be what keeps him in. He is still receiving breathing treatments and lot of support from the O2, but they are weaning him very cautiously.

On the homefront, everyone is a little bit healthier and a whole lot happier. Josef and Mommy have just about recovered from hand-foot-and-mouth disease and managed to keep it away from Charlie. Josef is getting more comfortable in his "big boy" bed, but still finds his way into our bed by morning. John Paul is looking forward to his summer break, which starts in a couple of weeks.

Mommy and Daddy snuck away for the weekend to a friend's wedding in Tucson. Gina spent an afternoon at the spa and in the morning we slept until almost 9:00! It was a much needed and much enjoyed getaway.

Due date!

The boys are closing in on three months and they've finally reached their due date today. This also begins our fifth consecutive month of visiting St. Joseph's Hospital.

We remember everyone in our prayers throughout this special month dedicated to Our Lady. May she obtain all the necessary graces to lead you more perfectly to her Son.

One last point of interest: The other day we received a newsletter from Fr. Euteneuer, President of Human Life International. In it he connected the "official" announcement of the swine flu epidemic in Mexico (April 24) with the two year anniversary (to the day) of the legalization of abortion in Mexico. He says, "the connection just seems too eerie to be coincidental." Our Lady of Guadalupe, pray for us.