Happy things . . .

Toby took 4 of his 8 feedings by bottle yesterday and is working on 6 today.
He continues to gain weight. (4 lbs 13 ounces, today)
He is doing well on his new oxygen set up and not having problems with alarms.
He passed his hearing screen today.
He has a car seat in his room ready for the test to see if he can sit in it and still breathe adequately.
Home oxygen and a monitor have been ordered by the doctor.

Does this sound like something good is about to happen?

We were told yesterday that Tobias should be able to go home by the end of next week. He needs to continue to progress (as he is) and there are some other hoops to jump through (both for him and us), but just to be this close is very exciting. There is a definite spring in my step and thankfulness in my heart.

show and tell

Today was dress up day. A class of fourth graders who have been involved with the NICU this year came for a tour; Toby was able to visit with them. In honor of the occasion, he received yet another new outfit (handmade with love) from his nurse and adorned himself from head to toe. Too cute! I think the running shoe booties are a good hint as to what we will all be doing soon to keep up with him if he continues to grow at this pace. Tobias is now 4 pounds 11 ounces and 17 1/2 inches. That's 5 inches longer than at birth! As you can see, he's looking good and plumping up well.

He also made some more steps forward today towards his release. His oxygen was switched to the type of delivery system he will use at home to test how he will do with it. He seems to be doing well with the reduction in medicines that was started a few days ago. He also did very well with the two bottle feedings I gave him today. There is a definite difference in the ease with which he handled them. He should have a third one tonight, which will be an increase and movement in the right direction.

Praise God for this confidence; He has begun a good work in Tobias and will finish it.

Tuesday

Toby continues to do well. He has reached four and a half pounds- amazingly! He is still just doing bottles about twice a day, but he does seem to be slowly improving. Most of his medications have been discontinued to test what he can do without so that he will go home with as little as possible. Yes, they do think he'll be home within the next few weeks. Even though his progress with the feedings seems slow, he is close to the gestational age when new abilities in this area are expected so improvement is expected soon. Meanwhile, he is mostly content to eat and snooze . . .

Toby has had an on-again off-again relationship with the bottle this week. He does well for a few feedings over the course of a couple days and then crashes, exhausted. Back to square one. The plan for transitioning from gavage (tube) feedings to bottle feedings seems simple: one per day until he does well, two per day until he handles that, and on up to the full eight feedings each day. I was hoping for a nice, smooth increase. The reality is more like the proverbial roller coaster. We are at the bottom of a hill now and trying to climb up again. Toby had two sessions with the bottle yesterday and neither was successful after two good ones the day before. So it's time for more resting and waiting and patience . . .

The ability to nipple feed and gain weight is the major obstacle to overcome to get home. Breathing is difficult for Tobias; he will probably go home with oxygen, a monitor, breathing treatments, medicine and I don't know what else. But the ability to feed seems to be a baseline requirement. So even while we thank God for his marvelous progress so far and know that God's timetable will not be frustrated, we are praying that Toby is able to move ahead in this area.

I am also realising more and more that when we do get home, it is not going to be life with a typical newborn but instead life with one who requires the rest of us to make a lot of adjustments and accommodations. It feels like maybe this has just been boot camp for each member of the family and the battles are still ahead. So the need for God's wisdom and God's strength continues. Thank you who are reading this for your continued interest and prayers. We are so grateful to you and thankful for you.

When I Grow Up

by Toby

I have lived in the NICU my whole life. It is a nice warm place and I like it here. There are lots of nice people. I think they are my friends. One of the best things is the schedule. First, they feed me. Then, I sleep. Then, they feed me again. Then, I sleep again. And then? We do it all over. Sometimes they do things I don't like; but when I complain, they always stop. Or I cry until they do.

They are teaching me a lot here. Mommy says I can learn about God by watching them. Already, I think I know many things about Him. He is kind. He is gentle. He smiles a lot. He always gives me what I need. He does a lot of work behind the scenes plus He is always there night or day when I need Him. He listens to me when I cry and likes to make me happy. But He does do things I don't like or understand if it will help me get better. He knows a lot more than I do. But He is always very patient. These are all things my friends here have shown me.

Someday, I will not live here anymore. I will do something called "growing up". When I do, I want to be like my friends in the NICU. Some are called nurse. Some are called R.T. Some are called doctor. And some of them I don't even know their names. But they are all beautiful; Every day, Mommy and I thank God for them and for all they are teaching us about Him.

(A special thank you to one of my nurses who made me my scrubs.)

Here Tobias is after his bath the other day. I was having trouble with the computer and wasn't able to put this up with the relevant post.

Toby is improving a bit with his feeding stamina. He has been able to try two bottles both yesterday and today. He has eight feedings a day, though, so still has a bit to go. He did finally get an increase in his rations today from 30 ml to 35 ml each time. The doctor said he is trying to keep him on the "dry side" because of the fluid retention problems; this is one reason they calorically boost the milk he receives and don't allow him to necessarily have as large a feeding as he would like. But Toby has been pretty insistent that he wants more and his nurse went to bat for him today and was quite persuasive! He has now reached the four pound mark which is an increase of half a pound in just a week. Fluid retention or no, he is definitely on an upward trend.

He has also done well the last couple days with his new oxygen setup. So it looks like it is here to stay. Plus Toby has graduated from the frequent heel pricks and blood draws that were formerly necessary to closely monitor his blood gasses. He would be so happy if only he knew.

A few things of note:

Tobias continues to work at mastering bottle feeding. He has been trying a feeding once a day with varying degrees of success. It is a lot more difficult for him than I expected. He does well with the swallowing and breathing skills, which is good, but it takes a lot of energy and wears him out quite quickly. But he is definitely progressing in the right direction.

He continues to have problems with fluid retention. I don't talk about his weight much because I'm never sure how much of his gains are here to stay and how much will end up being lost to the diuretics which are given from time to time. For example, Toby gained 3 ounces between yesterday and today. And he looked a bit puffy when I saw him this morning. The extra fluid in his lungs makes it more difficult for him to breathe and the diuretics can cause other problems. It's another one of those balancing acts they seem to specialise in here.

Despite this, he does continue to improve with his breathing. Today he was changed from the high flow oxygen to what they call a "regular cannula". The main difference seems to be that the air is no longer delivered heated and at 100% humidity. So it is another step closer to normal breathing. It is still being delivered with a set volume, though lower, and actually with a higher level of oxygen content than he was receiving on the high flow. We will have to wait now and see how he handles it. As usual, they will be monitoring his blood gasses and alarms as well as evaluating how hard he is working as he breathes.

Thank you all for your continued concern and prayers. As exciting as it has been to see Toby improve and to enjoy his progress, I have had to realise that he still has a long way to go. He looks so normal to me now- I guess I've grown accustomed to his small size- that I forgot how hard he is working on basic functions.

But I must add-
I wish you all could have had a whiff of him after his bath today. There's nothing like the smell of a clean baby. God sends His grace in both big and small ways.

Ten Weeks Old

I held Toby for the first time last night. Sometime in the past few weeks since I have seen him, he's grown up. Somehow, he's become a real baby boy.

I remember the first time I saw Toby. He was sharing a room with a baby who would go home in the next couple of weeks. The difference between the two babies smacked you across the face. Toby lay still under the sedative - it was hard to imagine him growing and being healthy. The other baby moved, wore clothes, and could cry. I looked from Toby to the other baby, pointed at the other baby, and said, "I want one of those." Now we do have one of those, and it is wonderfully amazing.

I wish I could think of more to say, but really, I'm just so amazed at how wonderful and tiny he is. It is truly marvelous.
-Kathryn

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.