Two steps forward . . .

One big step forward: Tobias has been an eager beaver with his pacifier. He has become quite demanding and insistent that he have it. Simply put, at feeding times the boy acts like a hungry baby . (And he thinks any time he is awake is feeding time.) I spoke with the doctor yesterday about when he would be able to bottle feed and was told it would probably be another week or two, but that the timing would be left up to the nurses' judgement. I mentioned that to his nurse yesterday and five minutes later, Toby had a bottle in his mouth. So much for the small talk! Obviously, Toby has been communicating well with his nurses and they have been listening. He successfully fed 10 ml (2 tsps) yesterday; it was a challenge for him and definitely wore him out, but he did it! And today he had an entire feeding (30 ml) from the bottle. Again, it was quite a challenge for him but he rose to it and completed it like a champ. Tomorrow, maybe two feedings? As long as he continues to be successful, the number of feedings by bottle per day will be increased until he is completely done with the gavage feedings. (It can't be too soon for Tobias; he has become quite skilled at pulling his tube out. Disappointingly for him, his nurses are even more skilled at putting it back in.)

Another step forward:
Toby has now doubled his birth weight. Twice 1 lb 13 is 3 lb 10, his official weight yesterday.
The small step backward:
He weighed in at 3 lb 14 today which means he went up 6 ounces in two days. This is a bit too much to be good news and means that he has been retaining fluids again. So it is back on the diuretics. It also meant a pause in the weaning from high flow. The volume of air he is on had been reduced Monday and the hope was that he would be able to go down again today. It was not to be and that is probably because of the extra fluids affecting his lung function negatively. If so, we should see some improvement again as that problem is reduced.

Pinocchio, the Velveteen Rabbit, Tobias: they all have something in common now. Toby has become a "real" baby. He can cry and even hiccough audibly. He can turn his head instead of needing to be flipped. He sleeps and wakes in definite cycles. He opens his eyes and looks around. He fusses to be fed and sucks eagerly on his pacifier. He tolerates lights and sounds and being handled, although he does make his objections known when disturbed. His alarms are few and far between. Yesterday, we removed all his monitors and floated him in an actual bath; he enjoyed it immensely. It is a completely different experience to be able to pick him up and hold him whenever we want and as much as we want. A happy, happy experience.

So where are we now and where are we going? Toby weighs three and a half pounds. He is gaining weight well and continues to do well with his feedings. They are still given through a gavage tube until he is able to coordinate the skills he needs to nipple feed and has the energy to devote to it. Right now, that energy is still going towards breathing. He needs to be weaned off the high-flo just as he was off the vent. It has controlled volumes of air and levels of oxygen. The doctors have not started the weaning process yet as his last dose of steroids was just last night and he needs time to adjust. But he does continue to get good gasses. So for the time being, the focus will continue to be on his breathing and lung development and we will look forward to being able to work on his feeding skills.

Look, Ma- No Hands!

Your child learns how to ride a bike and then while you are still thrilled over that accomplishment, he is on to bigger and better things. I walked in this morning with camera in hand, ready to capture a picture of Toby in his CPAP gear and stopped dead. The entire vent machine was gone. Not in the room. Disappeared. Vanished. It was replaced by a slender little oxygen mixer and- just like that- one of the central fixtures in the last two months was gone. I mentioned yesterday that Toby had been fighting the CPAP. He managed to free himself from it in the wee hours of the morning and did so well on his own that he was promoted to hi-flo oxygen. He has done quite well today. It was a busy day in other ways, also. I did, in fact, use that camera and here are a few things he did.

This is the little face that greeted me when I arrived; Toby now has just a nose cannula for oxygen and a gavage tube for feeding. Otherwise, he is relatively unencumbered.

One of the major tasks before him now is to learn to eat. We have begun working on his sucking skills and he did fairly well today with his pacifier.
He continues to receive inhalation therapy for his lungs. Now that it does not go through the vent tube, it is delivered by a friendly little monster.
One of Toby's new freedoms without the vent is being held. His siblings visited today and were able to enjoy his first day out. Does Joella look a little bit happy?
Toby has also been quite warm the past few days and maintaining his temperature well. So he was promoted today from his heated isolette to an open crib. Ivy was one of the first to see him in it.
Caeli peeked in at him, too. He settled in quite nicely.
And here are a couple more of him snoozing the afternoon away as he rested up from all the excitement.


And so two full and eventful days have ended. A lot of milestones remain to be reached and possibilities of setbacks remain, particularly as the course of steroids ends. But look at what great and wonderful things the Lord has done! Our hearts are full of thanksgiving and praise for His goodness and power.

Happy 2 Month Birthday, Toby!

Squeak, squeak. After weeks of waiting to hear him cry, we were rewarded today with a barely audible complaint. With practice, he is getting louder and might be able to win some honors in a Donald Duck sound alike contest.
Today was a long and exciting day for Tobias. He had an eye exam this morning, which left his eyes a bit puffy and red. The verdict was that his eyes are immature but developing properly. And then came the big excitement as his ventilator tube was removed. Elijah took the above photo with the cell phone after the tube was removed and before the next apparatus was added. He had a few brief moments to shine before his face was again obscured, this time by nasal prongs connected to CPAP. He is breathing on his own while receiving a continuous flow of oxygen under pressure to help hold his lungs open. What a happy day! He does not find it very comfortable and used a good deal of energy fighting against the process. But so far so good. He was given a sedative this evening to help him relax and hopefully get a good night's sleep. He is working hard and the hope is that he will be able to continue to progress and not go backwards.

Changes and more changes

A lot has been happening in Toby's room. They are monitoring him closely and making adjustments as they attempt to "challenge" him to make progress towards being free of the vent. And there has been some good progress. They have been able to lower the pressures about as low as they can go. They are working now at lowering the rate. (This is the minimum number of breaths the vent triggers; he is making up the difference above that to meet his needs.) A couple days ago he was on a rate of 50 and is now at 24- so significant progress there, also. He has started receiving doses of caffeine to help stimulate his breathing. I offered to simply eat more chocolate, but evidently that isn't enough. He also continues to receive other assorted drugs. And today he had another blood transfusion. He looked quite pink and healthy when I left. I didn't realise how pale he had become until I saw the contrast. It is exciting to see him making progress and to look forward. He weighed in at 3 lbs 3ounces today and is gaining nicely.

Caeli and Ivy were able to join me yesterday and stay for an overnight visit. They visited Toby last night, spent the whole morning with him today, and gave him a lot of love and attention. They are eager to take their little brother home.

The steroid is very fast acting. There have already been significant improvements in lung function. The amount of CO2 in his blood dropped about 20 points to near normal for the first time. He has also been maintaining a better level of oxygen in his blood while at the same time not needing as much supplemental oxygen through the vent. Plus, the doctor has began to slowly reduce the pressure support he is receiving. Toby seemed to have a very good day. He also had good periods of deep sleep and longer periods of alertness. Thank you, Lord!

I neglected to mention yesterday how strong he is getting. While on his stomach, he managed to lift and turn his head completely to the other direction. This would be a feat in and of itself, but he also had to drag his vent tubes and twist them around so he could land on them. I was very excited, but also quickly reversed his position and frustrated all his efforts. Tricks like that could pull his tube loose and cause a lot of excitement in the NICU; better wait a little longer, Toby!

Bigger and better . . .

rooms. That's what Toby and I both have. I am back at Ronald McDonald House and they have given me a much larger room this time. I very much appreciated the other room, but this one is a definite step up. Tobias also changed rooms. He had been in a semi-private, but has now been moved to the best in the house. Literally. He is in a private room which is designed to be used for parents to stay and practice 24 hour care before taking their baby home. So it is quite roomy, nicely furnished, and even has a private bath. We are both definitely being treated well.

Today, Toby started a new treatment for his lungs. He had continued to have set-backs the past few days: high oxygen needs, poor blood gasses, fluid retention, etc. He has now begun a week long course of steroids with the goal of weaning him at least down to a lesser dependence on the vent. The doctor did not sound hopeful that he would reach the ultimate goal of getting off it this week, though he did say it does happen with some babies. He also listed quite a few potential side effects. I will be praying for the maximum benefit and minimum harm. Otherwise, he continues to do well with his feedings and growth. The fluid retention makes it difficult to know exactly how much he has gained, but it is fairly certain that he is now past the 3 pound mark. He looks pretty good to me; I am GLAD to see him again.