Toby doesn't think ornaments belong on the tree. They are obviously new toys for him.

Toby enters into the holiday spirit by staring intently at dessert. No fear - he didn't bother eating it.

The past two weeks have been busy ones for our small boy. Every day he is learning new things. One of his most significant achievements is that he can now crawl! The therapist had told us that he would most likely go straight to walking and then learn to crawl later, but Toby chose to continue his route of unpredictability and learn to crawl and walk at the same time. He still is not walking completely on his own, but we often see him letting go and walking unaided from one piece of furniture to the next. He also enjoys breaking free from his tether and hauling himself up the stairs. He grows stronger every day.

Saturday was a day stuffed with adventure. Toby pulled the button out of his stomach and earned himself a trip to the emergency room where the medical staff rigged up a temporary tubing system (constructed mainly of a catheter). Today, he returned to the hospital and got a brand new button.

The rest of the week will continue to be busy. Two more trips to Ann Arbor are on the books - one for his assessment and one for his speech therapy.

Hearing Test

Toby had his hearing test today and did well! He has some fluid in his ears- maybe from the cold he's had. The pediatrician will check it out and see if it is a temporary problem or ongoing and he will have a follow up test in March. But no cause for concern now.
Smiles all around!

MRI Results

White matter changes in MRI are evidence of injury in utero or early days and correspond to parts of the brain related to motor development. This is a possible explanation for the gross motor delays we are seeing. Toby will see the developmental doctor again at the end of January at which time she will judge the progression of his gross motor skills and consider additional diagnoses. This finding means that he is at risk for more problems in the future.

Meanwhile, Toby has begun seeing a physical therapist and speech therapist in Hillsdale. Neither of them are the pediatric specialists he would have in Ann Arbor but do seem like they are good local sources. We are thankful to have found them and pray that Toby makes progress under their tutelage.

The MRI report is not the one we were hoping for. But we still know that God is good. Has been, is, and will be. And Toby is still the same sweet, little boy- just wearing a new label.

Toby saw a physical therapist this week. She explained to me that muscle problems can present as either high tone or low tone. Low tone is the better problem to deal with and that is what Toby has. It explains his extra flexibility. She plans to equip us with some strength building exercises.

Yesterday, Toby visited the U of M again for his MRI. We got out of there faster than expected. I think they wanted some peace and quiet. Toby was miserable in recovery and persistent in his communication. He calmed down quickly when we left, so the trauma was evidently more emotional than physical. Results are expected next week.

First Steps

Toby has been working hard this week. He has been very intent on walking along the furniture at every opportunity and creating opportunity where there is none. He has also been standing on my bed (where he knows it's a soft landing) and practicing his release. "Look, no hands!" Today, he put it all together and walked a few steps to his sisters and father.
(Insert clapping and cheering here. Toby likes applause and will cue us if he thinks we're slacking.)

I'm not sure what this means for the physical therapy the doctor thought might be needed. He is scheduled to meet with a therapist on Monday. Maybe this will be enough to reassure the doctors that, even though he is "behind schedule", he is making proper progress.

Developmental Clinic

Today was Toby's first visit to the developmental clinic at the U of M. It is for NICU graduates, similar to the Special Care Clinic in Toledo which he visited a few times. A special team headed by a neonatologist follows up with the babies after discharge to screen for and deal with the problems for which they have an increased risk.

A brief summary of today's judgements might read as follows:
(I will have to do this from memory since I do not have my copy yet)

Toby is 20 months old. His adjusted age is 16 months. His growth (height, weight, head circumference) are in the proper curve and trajectory for an extremely low birthweight child when adjusted for his gestational age.

Development levels:

gross motor skills: 10 months (He has just begun walking while holding on to furniture but does not yet stand or walk alone. )

fine motor skills: 17 months

receptive language skills: 11 months

expressive language skills: 14 months (Scoring higher here because of his sign language skills. Does not vocalize at as high a level.)


Recommendations:

Hearing test. Toby passed one before he left the NICU, but they would like to be sure this is not a factor in the speech delays.

MRI- You may remember that God mercifully spared Toby from brain bleeds during his early days after birth. But his continued pulmonary problems place him in a high risk group for neurological problems. This would look for possible reasons for the gross motor delays.

Physical therapy twice a week.

Speech therapy once a week.

A more extensive assessment in December or January.

Toby was fairly cooperative during today's assessment despite his understandable apprehension of medical people. He was not very impressed with agenda. It seemed to consist of engaging him with a toy or activity for a brief moment and then snatching it away. I do think they made a fairly accurate assessment of his developmental progress, excepting perhaps his receptive language skills. Sometimes I thought he understood but just didn't want to do what they asked.

The MRI has been scheduled for the 24th. We will be working on getting the rest of the stuff set up. I would like to see if it is possible to get therapy closer to home since twice a week to Ann Arbor would be logistically difficult.

The session both began and ended with reminders that Toby is a "miracle" child whose health and progress have been truly blessed by God. The doctor said he is living up to the meaning of his name- "The Lord is Good". So despite some of the news not being what we would like to hear, today is a good day for thanksgiving and praise.

Some weeks seem longer than others . . .

The weight check on Wednesday showed a positive gain of 6 ounces in the past two weeks. Choo choo- Chugging in the right direction again.

On Friday, Toby reported to the U of M bright and early for the CT scan and bronchoscopy. His pulmonologist was looking to find out why he continues to breathe faster than would be expected for his age. She found airways which are narrow and "floppy". Normal airways would be wider, allowing more air flow, and less flexible, not expanding and collapsing with each breath. So the answer to the question is that Toby breathes faster because Toby is still working harder. The solution is (drumroll please)- continue to let him grow out of it. She also did some deep cleaning while she was down there, removing some pockets of mucous. She says the lung tissue is quite fragile and it is also important to continue with the inhaled steroid treatments. She is no longer planning to try to wean him off the supplemental oxygen this winter.

An unexpected finding was a small cyst at the top of his airway. Now it sounds like a bit of a party was going on in the exam room as the reported number of people in there was in the teens. Included was an ear, nose and throat specialist who had joined the merry band after becoming interested in the case as it was discussed in the hallway en route to the procedure. He was able to deal with it immediately while Toby was already under anesthesia so the cyst has already been drained and sent for analysis. How perfect is God's timing?

The unexpected procedure did mean an overnight stay for observation. Toby got a chance to become reacquainted with some of the wonderful staff on Mott 5west and Grandma got an surprise slumber party.

Toby has had no problems. He is home again and thrilled to be released from all the additional restraints. (In addition to the oxygen tubing, he had an iv in his arm, four wires to his chest and one to his foot. Plus, from time to time, his tube feeding. Movement was difficult- but just try to keep a 1 1/2 year old still!) I think we are all glad to have this grand adventure behind us and are ready for a few monotonous days at home.

Toby saw the eye doctor yesterday. She wanted to see how he was doing without the patching. And he is doing quite well! Hooray for two steps forward that were not followed by one step back. So no more eye doctor until December. (She will continue to check on his eyes as long as he is on the oxygen.)

Today it was off to the pediatrician with an ear infection. And, while we were there, a quick weight check which showed him up an ounce in six days. Not great, but not bad.

Toby is sleeping peacefully now. And after the last 24 hours of dealing with Mr. Needy, we're all resting a bit easier- and very thankful for pain meds.

And up again!

Toby gained 4 ounces in 8 days so is headed back in the right direction. Good news! The downside is that he is eating less by mouth since the increased volume of feeds leaves him with little appetite. I am hoping to be able to play with the amounts again soon to try to find a balancing point that will enable him to get the nutrition he needs and still have enough appetite to experience a normal hunger cycle sometime during his day. But it looks like a process that can't be rushed. His next weight check is in 2 weeks.

His sats have also continued to improve. His supplemental oxygen level had been bumped up to its previous high level when we hit the latest bump in the road. I have been able to cut that back down the last two nights and he has still maintained near perfect high 90's. All this despite fighting his first cold of the season.

Toby was rewarded for his progress with- as usual- another shot. (Someday he's going to decide he doesn't like that doctor's office.) This was the first of his monthly winter RSV vaccines which are given for 5 or 6 months. This shot cost over $3700 each dose. Yes, that'll be times 5 at least this year. Yet even the insurance company agrees with the doctors that Toby's health is vulnerable enough to make this a good investment. A good reminder to us that winter time is praying time. We get the shots knowing that God is his true protection. "Praise the Lord and pass the ammunition."

His bronchoscopy has been scheduled for the 30th. His pulmonologist has decided it's time she physically examined his lungs and is planning to stick a camera or something down in there and look around. Hmmm.

On the home front, Toby continues to explore to the limit of his "leash" (oxygen tubing). His favorite toys are his blocks. He even has a word for them. You can say it, too. Just clear your throat as loudly as you can.

Weight Check

Toby's weight check this week showed no loss and no gain. We have increased his g-tube feedings back up to their original level to try to re-establish a pattern of weight gain and a solid place to start from again. He continues to nibble at some solids and to add a few new foods to his diet.

His lungs are doing well now that he is back on the diuretics. And the last couple nights have seen better numbers on the sat monitor than any in the last couple months. It is encouraging to make progress in sorting that out. I do have some questions for the pulmonologist but am unsure when his next appointment will be scheduled.

Toby is also continuing to get stronger. He can now get up on his hands and knees quite well for brief periods as well as pull himself up on the side of the crib. And he is quite happy to perform for applause. When he does something he considers noteworthy, he claps to cue us. And, I admit, we do our part with cheers. But our hearts continue to sing with gratitude to God.

Another doctor visit . . .

Toby continues to sat better now that he is back on the diuretics. Plus the pediatrician said he sounded great when he checked him on Friday. Good news in the lung department.

The weight check showed Toby down another 8 ounces since Monday, despite the increased feedings this week. That's a total of 18 ounces lost and puts him at an even 20 lbs. The doctor assures his shocked mother that the last half pound is fluid loss from the diuretics and nothing to worry about. He will have another weigh-in next week.

Rewind

Toby had a rocky weekend. He is still on a monitor at night which tracks his heart rate and the oxygen level (saturation or "sats") in his blood. 95 - 100 % is good. Under 92 is not good. His alarm is set at 89. Saturday and Sunday nights, his sats were consistently low, sitting in the 90 - 92 range with many alarms. Monday was taken up with phone consults with doctors, a chest x-ray, and visit to the pediatrician. Having ruled out illness, it seemed likely that the problem was caused by the recent stoppage of his diuretics. His damaged lung tissue has a tendency to hold fluid and not work as well; the diuretics are used to counteract that. After a dose of a strong diuretic Monday evening, his sats were back up to 94 and above with far fewer alarms. No illness is good news. But it means we have had to restart his regular diuretic dosing twice daily. I am happy that it can be dealt with so simply but unsure what this means for the plans that were in place to start weaning him off oxygen. More wait and see, I imagine.

Toby also weighed in Monday and -uh, oh- he had lost 10 ounces. We had reduced his tube feedings again last week. He seemed to be eating more, but evidently it was not enough. So we have had to add that back into the schedule also. It feels a bit like the reduced schedule was a nice vacation, but it's over now and time to get back to work. Friday, he will see the pediatrician for another weight check and once over.

None of this has slowed Toby down at all during the day. He likes to stay busy and scoots all over on his rear as far as his tether will let him. When he wants to go further, he turns around and pulls on the cord with both hands to stretch it to its limits.

He has also started to get up on his hands and knees a little. So progress there! Plus he has managed to pull himself to standing on the side of his crib a couple times. He's getting quite strong.

We are also giving him credit for his first sentence last week. He signed to Naomi: "up", "please", "book".
This boy loves to be read to and God has blessed him with many sisters who very kindly indulge him.

And yes, we found something he likes to eat besides crackers. Chocolate chips. There's hope for the boy yet.

Eighteen months and counting

Toby's 18 month checkup showed continued good health and progress. He gained enough weight to keep his nutritionist happy and continues to edge up toward "normal" on the chart. This lets us continue the process of decreasing the tube feedings and letting him learn about hunger and how to make it go away. He also saw his occupational therapist for a final consult about his feeding issues. She has given us some helpful hints about how to expand his horizons. Putting both together (hunger and hints), we have already had some small successes. Enough to give us hope for the future; maybe someday soon Toby will graduate from non-eater to just another picky eater.

Toby has also had success in the pulmonary catagory. He completed coming off the diuretics without any major problems. Praise God; he now has a much reduced daily drug routine. A breathing treatment morning and night, one medication morning and night, and one just in the evening. This is another one of those areas where progress has been so gradual, we only see how far we've come by looking back. Not too long ago, it took a chart to plan, organize, and track all that was required. Now it is simple enough to be almost thought-less. Just perfect for advancing maternal age . . .

The plan to wean off the oxygen has not gone any further. His pulmonary team decided to delay and do another test first since he continues to have episodes of "fast breathing" for which they don't have an explanation. Some time in October, he should be scheduled for a bronchoscopy. They will put a scope down into his lungs to see if there's any thing going on down there they don't know about. After that, we will be back on track.

Meanwhile, we thank God every day we look at this big, healthy child. The wonder never goes away.

A Patchy Story

Once upon a time, there was a small boy who needed to wear an eye patch.

He was not very pleased to hear this news.

This small boy was determined to rid himself of this eyepatch.

Eventually, he was able to convince his doctor that the patch was unnecessary, and there was much rejoicing.

The End.
(by Kathryn)

The baby is gone; the little boy is here.

Toby continues to grow and change. Sometimes the changes are slow and imperceptible. Sometimes they seem to come at top speed. But all of them have definitely added up to a little boy in whom it is difficult to see the baby we prayed over.

The latest good changes include:

More mobility- He has been perfecting his scooch across the floor. We need a video to do it justice but it involves a combination of up and down and side to side motions which propel him forward in the sitting position. At top speed across a hardwood floor, he looks a bit like a belly dancer. He has also learned to use the walker to 'walk" wherever he wants to go. Put him in his crib and he is likely to bounce energetically or try to pull himself to a standing position. Aaaaalmost there, but he still needs a little help.

He is not yet back to physical therapy, but is obviously stronger in so many ways. His energy level also seems to be up. I suspect it is a combination of breathing easier and not being weighed down so much by constant feedings.

The nutritionist did make some changes to allow hunger to kick in and motivate some eating. He has three tube feedings: morning, evening, and midnight snack. That seemed to help for about a week, but he is eating and drinking less again. His weight this week was down from a previous high of 20# 15 to 20# 7. But the decision was made to allow him a couple more weeks during which he needs to gain or we will have to increase the tube feedings again. He HAS tried a few more and new foods but nibbles them in such small quantities. Plus he continues to have issues with gagging and retching. So the feeding issues remain as one of the biggest concerns.

The news at the eye doctor this week was all good. The patching of his right eye for the past couple months has helped a lot. His left eye was tracking fine and she told us to stop patching for the next couple months to see if his brain has made the needed adjustment. Toby will not miss the patch! A half hour to an hour a day seemed way too long to him, even though it came with one on one attention and books and toys.

The pulmonologist gave us good news as well. Tobias was monitored on room air for more than half an hour and did fine. His oxygen saturation level remained up and his heart rate remained down. She thinks it is time to move towards weaning him off the oxygen. Cordless may not be far away! First, Toby needs to finish coming off the diuretics he has been taking all this time to keep his lungs "dry". That should take place during the next two weeks if all goes well. Then should come periods off the oxygen during the day with the night time supplements the last to go.

Dr. T did caution that fall and winter are coming with the inevitable viruses. The journey may involve some "detours, but we will stay on track."

That good news is huge news. News for which we have been waiting nearly a year and a half. It is indescribably amazing and joyous to watch Toby breathing on his own without, well, just without. I remember the transition from ventilator to no ventilator. That was a top speed change and this is one of the slower speed ones but an equally big step. Gratitude to God overflows. He gives each breath to each of us but now we have lived with this reminder of what a mercy and gift that is.

"Let everything that has breath praise the Lord."

Toby also continues to communicate more and more. Mostly with signs, but he does try to talk a little bit. He also loves books, both reading and being read to. His sisters and brothers and his dad are his favorite toys. He is always excited to see them, especially if they are wearing hats. And yes, he will wear his own hat now.

17 months and counting . . .

Two more weeks have flown by.

Toby has finally begun to get around a little bit on his own. He's not crawling or walking; when he's sitting on the floor, he wiggles and twists and bounces a bit and manages to move from one spot to another. He is VERY happy not to be stuck in one spot any more.

He was scheduled for physical therapy this week but because of insurance issues was not able to go. He did see the occupational therapist who has been working with him on eating. She was thrilled with the progress he has made towards drinking more and eating a few more foods. He is also on a more normal schedule with three meals and a midnight snack which should help him develop a normal hunger cycle. His therapist continues to feel that the biggest obstacle to getting him to eat more is simply a lack of hunger. His tube feedings are enough that he just doesn't feel the need for more even though we are careful to offer him the real stuff before hooking him up each time. I have contacted his nutritionist to see if she can come up with a plan that will satisfy both the doctors- who want him eating and growing- and the therapist- who wants him hungry and doing more orally.

Last week, Toby received the all clear from the pediatrician for his staph infection and was able to stop the antibiotics. There are a couple spots of hard tissue remaining which we are to watch, along with any other spots, for possible recurrence. They should clear up in a few weeks. However, this week his sister, Caeli, developed two sores on her arm and cultured positive for the same infection. So the household is definitely not in the clear yet and continued vigilance is needed.

He's talking! Toby has added a spoken word to his growing sign language vocabulary. "Hat." He signs it and says it and wants to talk about hats all the time. His dad wears one and his brother and so, we have learned, do a lot of other people we see when we are out and about. Toby himself is NOT wearing his yet, although he has a new bucket hat he likes a bit. Otherwise, hats are for taking off as quickly as possible and for putting on other people's heads.

Two weeks and nothing but good news and normal baby development! How good God continues to be and how thankful we are!

Dodging bullets

Only a small area of Toby's belly still shows signs of last week's infection. His doctor says he dodged a bullet with this one and is pleased with the recovery so far. He extended the antibiotic treatment for another week and we are praying that is enough to clear the problem completely out of his system.

Toby himself seems to be feeling quite peppy. He is full of energy and looks ready to be up and moving. We're still waiting for that day, though. For now, he continues to use his siblings and parents as a taxi service.

The discovery of the week in the food department is Club Crackers. He likes them as much as cheese curls, his former favorite. With most foods, he only nibbles or remains stolidly indifferent. He has chowed down some crackers the last few days. This small milestone is incredibly exciting, knowing that in order for normal eating patterns to develop, he needs to experience the positive feedback of pleasurable tastes plus learn about appetite and how to satisfy hunger himself. Who knew that hunger and taste were such good gifts from our good God?

Heading home!

Toby was released today after a visit to the ER in Ann Arbor. The doctors are pleased with how the infection has responded to the antibiotic. There are different strains of mrsa and the culture report tells them which antibiotics it is resistant to as well as which should work against it. This particular strain has a lot of drugs which should work against it and is thus relatively easy to fight. Hurray! There was a pocket of infection which they lanced and drained. He should be sore for a few days but, God willing, will continue the good recovery he has begun.

Yes, it's mrsa

The culture came back positive so we are off to Ann Arbor again. The antibiotic has helped a lot but there is a pocket of infection remaining. We are not yet sure what treatment will involve but it may include surgically opening it and draining it and/or antibiotics, possibly iv. We will let you know what they think over there.

First, the good news:

Toby saw the eye doctor yesterday. He has been wearing his glasses about 6 weeks and they have helped him a lot. When he has them on, his eyes pretty much stay in their proper orbit though they definitely wander when we take them off. His doctor has decided to add some patching for half an hour each day, just to get his left eye working more.

( Actually, we're not usually the ones taking them off. Toby continues to find removing his glasses to be the most effective way to get someone to come running and the perfect antidote to boredom. He slides one finger up the side of his face under the frames and FLICK- they're forward and off. He likes to make eye contact when he does it to be sure we're getting the message. He also already has new lenses. I thought they were cracking but am assured the problem was tooth marks. )

There have been no major changes in the food department. Toby decided he doesn't like his new pediasure. He drinks regular milk from a cup and whatever nibbles of food his siblings can interest him in. Then we tube feed his allotment of pediasure to keep his caloric intake up where it should be. The biggest challenge is taping the tubing together well enough to deal with his increased activity. Too often at the end of a feeding we find Toby in the milk instead of the milk in Toby. Milk baths are good for your skin, though, right?

He has added more words to his signing vocabulary, the most important being "please". He knows it's some kind of magic and will usually get him what he's wanting so he uses it a lot. Milk, water, more, swing, up: he makes two word phrases with all of them. (Yesterday, he sat in that doctor's office and signed "go, please" over and over. ) His latest word is "hat". His dad and brother both wear one and he thinks they're cool.

Are you still waiting for the bad news? Here it is. Toby was back at the pediatrician's today. What started is a small pimple has developed into a largish area of infection on his belly. It may be a staph infection and the doctor is culturing to see if it is MRSA, a particularly nasty, anti-biotic resistant strain. We should know in a couple days. I put this in the 'bad news" column when it more properly belongs in the "reminders that God is sovereign" column. I am praying that God will continue to protect Toby from further complications and me from my imagination.

It has seemed like a long week here. Toby developed a major cough. (We are so thankful for God's mercy and perfect timing which let the doctor catch the infection Thursday when he was there for his regular check up and before it had progressed any further. We are also thankful for the good and thorough care his medical team provides. They continue to be magnificent.) Toby was understandably unhappy for a few days and ended up with steroids stacked on top of the antibiotics, but he is feeling MUCH better now.

Despite skipping his therapy appointments this week and not exercising much because of his illness, Toby has made some exciting progress. Yesterday and today, he began rolling onto his stomach voluntarily and without complaining. He has HATED to be on his stomach and was not strong enough to do much when forced to try. Now he is pushing up well and quite pleased with his new ability. Already, it is making his tube feedings more difficult plus he coiled his O2 tubing twice around his middle tonight. But we are happy to deal with it.

And while still not drinking much, Toby has been showing a lot of interest in solids since he started feeling better. Yesterday, he had his first animal cracker and gnawed on it pretty well. Today: graham cracker. Part of it seems to be the new teeth and a desire to bite and chew more than hunger. But as he has more positive experiences with food, it should help him learn that eating is a good thing.

A long week? Yes. But if all's well that ends well, a good one, too.

Yesterday, Toby saw the pulmonologist for a checkup. A lot of good news came out of that visit. They downloaded the data from his O2 monitor plus gave him a trial on room air. Both showed that he is doing significantly better. We are going to try him on a reduced flow with the stated goal (Yes! The doctor said it out loud!) of officially beginning the weaning process at his next visit. He is outgrowing his dosages of diuretics and as long as he continues to do well, they are going to let that process continue until he can come off them completely. Additionally, one of his breathing treatments is being reduced from 3X daily to an "as needed" basis.

Toby officially reached the 20 pound mark, weighing in at 20 lbs 1 ounce. His nutritionist was also quite pleased with his progress. He is going to transition now from fortified breast milk to pediasure and continue to work with the therapist on his oral feedings. This will make life a whole lot easier.

But

These changes are on hold for a few days. Toby showed up for his appointment with a fever and was breathing pretty fast again. A chest x-ray showed "something going on". He started an antibiotic today which hopefully will zap it out.

This minor setback does not diminish the thrill of all the good news. We are happy, happy, happy- and thanking the good Lord for the continued healing he has given Toby.

Happy Father's Day

Sometimes . . .

I left you wondering, with us, if Toby would keep his glasses on. Most of the time, he will. But at least once a day, he decides it would really be fun to pull them off 5 or 10 times in a row. This usually happens when the rest of us are busy with other things so is doubtless just a call for attention. All in all, Toby seems pretty satisfied with his new, improved sight.

This weekend is another milestone. Tobias was "due" June 21st of last year so his adjusted age is now 1 year. He saw the pediatrician last week for his 15 month checkup. He is 27 inches tall and 19 pounds 12 ounces. He's done pretty well with the catch up growth. This puts him at about the 10th percentile for weight (adjusted age) although he is still below the expected range for height. We've known since he was in the NICU that the steroids could cause him to be shorter but also that with the family gene pool he's been swimming in, we'll never really know the cause of any "shortfalls".

His general health is good. Problem spots are the same: lungs, feeding issues, motor skills, and eyes.

Toby will see the pulmonologist next week and the possibility that he will begin to wean off the oxygen continues to dangle there. Any improvement in the past month or so has been slight, but may be just enough to let him take that step. We shall see. Meanwhile, he continues with meds and breathing treatments.

Feeding will be an issue for a long time to come. He continues to have some signs of his reflux. (The surgery helps manage it not cures it). But he is off all his reflux medicines. He has also worked up to larger meals which let us cut back to 4 feedings a day. This, in turn, lets the feedings be spaced out enough to stimulate a more normal hunger cycle. Hunger, not surprisingly, increases his interest in eating. Toby now drinks about 20% of his milk each day and the rest we pump through his g-tube. Transitioning to solids continues to be troublesome. Baby foods produce gagging and retching. He does better with carefully selected table foods shared with him in a non-threatening manner. Translation: Toby won't eat for me but he likes to share with his siblings (especially Lydia). A high point this week was when he ate (bit, chewed, swallowed) several cheese puffs with minimal gagging. So progress is slow but enough to keep us hopeful.

Toby's physical therapist has given him a variety of exercises to help strengthen neck, arm, trunk, and hip muscles. He's improved some but is still basically immobile. We are thankful he enjoys sitting and playing so much. Toby also likes it when his siblings help him stand and is starting to figure out how to take a few assisted steps.

What he likes most of all is to be outside and he puts a lot of time and energy into persuading someone to take him there. Once out, the goal is the swing.

He doesn't talk much, but Toby does know several signs. He can sign "milk", "more", and "up" plus he's working on "swing", "outside", and a few others.


Unbelievably blessed. That's how we feel every time Toby progresses a bit or flashes his funny little grin or even just whines. (He's a whiner, not a crier.) Fifteen and a half months make an extra-long year but every minute has been a gift from a God who is both sovereign and good- and we thank Him for them.

Will he leave them on?

To be continued...

Bee Mine!

The fun first-
Thanks to the Hubbsies for the new swing.
It is being enjoyed by all, though Toby is the only one who gets to fly.



Toby saw the eye doctor last week. He has glasses on order (!!!) and will soon be sporting a new look. He is farsighted (how can they tell?) plus has been crossing his eyes. It is hoped that the glasses will solve both problems.

Friday, he met the occupational therapist again about his feeding skills. She continues to be encouraging even though he is at present less than enthused about most foods. He has had a few days where he tasted a little bit. And I think he's learning to rely on Lydia for the "good" stuff as she likes to share. He has also done better the past few days with the bottle; instead of drinking an ounce or two and calling it quits, he has been drinking most of the allotted 5 ounces.

He had his third session of physical therapy with the third therapist to tackle the job. This one says she'll stick around a while. The plan is to go every couple weeks this summer. She is helping with exercises to get him moving.

He also had a weight check and has gained half a pound in two weeks, topping out at 18 lbs 11 oz. This should please both his pulmonologist and nutritionist and should allow us to continue with the latest protocol they set up for him.


We have much to be thankful for as summer arrives and are anticipating a lot of sunny, fun-filled days- flying with the bees.

We finally have some new photos for you after resolving the latest technical problems. We were trying to get him to show off his new teeth. Our success- or lack of it- is self-evident. They came in with an interesting pattern: the two middle on the bottom and then two more on the top but on either side of where the two front ones belong. The "fangs" have been an interesting look which is soon to pass as the front teeth are now coming in.

The scheduled visit to the therapist was cancelled this week. Toby has kept us busy with the usual. It has been a nice, uneventful week.

The apple blossoms are blooming,

the new bees are in their hives, and spring is definitely here. Toby loves to be outside and manages to communicate this without words. It's amazing how effective body language can be and how quickly babies learn to use it to full advantage.

As hoped, his fever was gone with the weekend and he is doing pretty well. Today has been a day to sleep a lot and recover from his trip to Ann Arbor yesterday. It was a long day and wore him out.

He has been doing so well with his oxygen level that I fully expected the weaning process to start. But yesterday his numbers were not quite as good. His pulmonary team decided he is not ready for that and also to try a few medication adjustments. Maybe at his next visit, in 6 - 8 weeks, it will turn out differently. But for now, he remains on his tether.

The physical therapist he saw last week left unexpectedly for a new job. Another therapist and the student he saw last week stepped into the gap temporarily. They were able to get us started with some exercises and goals we can work on at home that are very helpful. Already today he has made progress with rolling from his stomach to back. Another thing we are working on is his pelvic muscles. He lets his legs flop out and needs to learn to bring them in and tuck them up where he can use them. It is great to have a better understanding of how we can help him.

We also spent some time with the nutritionist discussing feeding plans and goals. His weight is now 18 lbs 3 ounces which makes a nice upward curve on the growth chart. DID I FORGET TO MENTION? We increased the volume of his other feedings and cut out the 3 am feeding about a week ago. He's adjusted well, as have I. The thump, thump, thump you hear is my dance of joy about the extra sleep!

Toby is also doing a little better about tasting some different foods. We just have to come at it sideways. He did not see the occupational therapist (whose job it is to help with the feeding issues) this week but is scheduled for another visit with her next week. He still gets most of his nutrition through his g-tube. He drinks an ounce or two from the bottle quite enthusiastically, but then seems to think he's full.

All in all, progress is slow but steady. And we like where this path seems to be heading. God is faithful and good.

Toby saw 2 therapists this week. One is helping us figure out his reluctance to eat. She was quite encouraging since he now takes a bottle and shows other positive signs. He also saw a physical therapist about his large motor skills. We are returning next week for more specifics about how we can help him. It sounds like we'll get him crawling or he may go straight to walking. Either way, we'll get this kid moving- and probably regret it!

Today Toby has not been his usual happy self. I'm not sure what's going on other than that he obviously does not feel well and spiked a fever at one point. Hopefully, it will be short lived and gone when the new week rolls around.

Toby did make it out this past week to services on both Good Friday and Easter morning. (NOT sunrise!) He found the people a bit overwhelming on Friday but by Sunday was adjusting somewhat to the new interactions. The rest of the week has been spent at home. Toby is fighting a slight cold, again. But he is also enjoying spring and seems to be growing stronger. He is still not moving around, but I think the thought is at least starting to cross his mind. He will sit and play for long periods now, but is never more delighted than when he can get others to join him. His feedings continue at about the same level: a bit by mouth and most down the tube. I did stop his last remaining reflux medication and he has not had any problem getting along without it. Hooray! His schedule is a lot simpler now, just morning and evening meds plus breathing treatments 4 times a day. And, of course, he has the 6 feedings. It is so much more manageable than his past regimens and it is exciting to see the progress towards the need for fewer and fewer medical interventions.

Paroled

Toby visited the pediatrician today and was told it's time he got out and about.

I think I need to let that one sink in. 13 months later, we get to try to rejoin the world. It may be slow going for a while as his schedule is still restrictive, but here we come!

Toby weighed in today at an amazing 17 lbs 8 oz. Yes, that places him on the growth chart at last, at least for his adjusted age. He's still a little short at 26 inches. But what he lacks in height, he is attempting to make up in girth.

And his elbows have dimples.

He continues to show improvement also in his willingness to eat. When he's awake, he usually accepts the bottle and drinks at least part of it. We continue to tube feed the remainder. On the 21st, he will revisit the occupational therapist who worked with him previously on his feeding skills. He is also scheduled to meet with a physical therapist to address the large motor skills and get this kid moving.

I guess I better clean and baby-proof this house.

Toby made the switch at the beginning of the week to a more normal feeding schedule: 6 feedings, 1 every 4 hours. He no longer has long hours of continuous feeds on the pump at night. We do still use the pump, however, for whatever he does not take by mouth. This means that during the day, he gets a chance at the bottle first and then we tube feed whatever he doesn't take. He still gets to sleep through his night feedings. The main difficulty has been working towards the proper volume for the calories he needs since his stomach size is small. He does have problems if we fill him up too full. The good news- Toby is doing great with this schedule. He's having a lot fewer problems than with the continuous feeds. It has also helped restore a more normal appetite. He accepts the bottle now (!!!) and has actually drained it a few times. Hooray! It is a wonderful feeling to hold him in my arms while he drinks a bottle like a "normal" baby.
Praise God from whom all mercies come.

Armed and dangerous . . .

The biggest news this week is the arrival of two teeth. It's possible we have an explanation for the whiney, difficult child we've been dealing with the past couple weeks. Somehow, I did not see this coming despite the signals Toby was sending out. It was a surprise to feel them fully erupted. Warning: be careful where you put your finger.

We did make the trip to Toledo yesterday. We revisited a few of our old hang-outs. The good people there are still busy saving babies and taking good care of parents. It was a strange but good feeling to be on the outside looking in this time.

The clinic's evaluation of Toby was overall positive. The only new recommendation is that he begin physical therapy to help with his large motor development. I have been concerned that he is starting to fall behind in this area. He does not crawl or even move around much. His therapist (the same exceptional one who worked with him in the NICU) says it is because of weakness in his trunk. This may be partly because of his surgery and partly because of the lack of proper exercise during his winter illnesses and, again, the surgery. We now have some ways to work with him and hopefully will get something set up through the therapists at the U of M.
She did say that he is doing well with his fine motor skills, which was good to hear.

His weight gain the past two weeks was a modest three ounces. That's a much lower rate than the almost ounce a day he was doing previously. The new feeding plan we were trying has not gone well. Toby takes very little from the bottle. He has been refusing solids. And he continues to have retching problems sometimes during his pump feedings. When that happens, I have to stop the feeding for a while. And loss of time equals less intake. The good news is that he has continued to gain. We will continue to work towards getting him on a plan that works better for him.

Toby's visit to Ann Arbor on Thursday went well. His initial style of g-tube has been replaced with a lower profile "button" with detachable tubing so that he can be free from some extra baggage when he's not using it. We're not enjoying the full benefit yet; he has been doing so much coughing and retching that I try to keep him vented as much as possible.

The nutritionist gave us a plan to try to get a more normal cycle of hunger and meals going. He is spending less time "on the pump" doing continuous feeds and trying more bottles. So far, he is doing great and happy with the change. He also needs to try more foods. Right now, he has an on-again off-again relationship with his cereal. The rhyme and reason of it are not apparent.

Weight was 16 lb 5 oz.
3 days, 3 more ounces- a good pattern for him to be on for catch-up growth.

And last, but certainly not least, his lungs are doing great. They turned off his oxygen for a few minutes and he maintained good sats. That's a definite improvement from past attempts which showed immediate and significant drops. There is some concern over his continued high heart rate. For now, though, the only changes made were some tweaks in medicine dosages to account for his new size.

Toby should get to enjoy another break now from doctor visits. Nothing more is scheduled until the 26th when he is to return to Toledo for evaluations by assorted nurses and therapists. Meanwhile, we will focus on feeding and growing- and enjoying any warm weather that comes our way.

Today was the visit to the pediatrician for his one year checkup. (And 5 shots- ouch!)
Toby weighed in at 16 lbs 2 oz and was 25 inches long. Not quite ready for the heavyweight division yet, but well on his way.

The last couple weeks have been the healthiest for Toby since last fall. For the past 4 - 5 months, even when he wasn't in the hospital or visiting the doctor, he's been fighting off something. Now he seems much healthier. His doctor says this, along with the weight gain, may tell us that his nutritional status is much improved. Another cause for thanksgiving.

Happy Birthday!!!!!!

Our hearts are full today of joy and thanksgiving. We can hardly believe the contrast between now and a year ago. Every day of the past year has been a gift and they have added up to a chestful of treasure. "My cup runneth over."




Next week, Toby has 3 doctor appointments and will be the time for all the medical updates. For now, we are enjoying the gift of today. What an extra-special treat to get outside and breathe the fresh air with the promise of spring and new life in it.

Happy Birthday, Toby! The Lord is good. We praise Him because you are fearfully and wonderfully made. All the days ordained for you were written in His book before one of them came to be and we praise Him for these first 365!
We thank Him also for the many, many people who joined the team of caregivers who made this year possible- doctoring and nursing and cleaning and caring for siblings and praying and giving and encouraging and so much more. You are appreciated and loved.
Hugs to all- hopefully soon in person.

(and Happy Birthday also to big brother, Zeke - - -24!)

By request

We've heard that some of you would like to see Toby's new look now that he's gained so much. So here he is, starting with his super-baby look.











He has had a nice uneventful week. He had been refusing bottles when he was ill and on steroids but has started taking 2 or 3 a day again. So, hooray!

Thursday, Toby saw the eye doctor. As long as he is on oxygen, there is a chance of irregular blood vessel growth. So she continues to monitor him. But he's doing great.

He is still battling his cough, but we like to think there's improvement. His lungs are handling it ok, which is the important part. The steroid he's been on this week definitely made an immediate difference. Meanwhile, more of his siblings have joined in so that we have a cacophony of coughs.

I know it's snowing out, but I feel spring in my bones. It's coming. We are eager for it and to get Toby out in the bigger world again.

Is the scale broke?

15 pounds is what Tobias weighed in at today at the surgeon's office. 11 days ago, he was weighed at 13 pounds 5 ounces which is 27 ounces less. That would make his weight gain more than 2 ounces a day. I don't know. My mind is having trouble believing that's possible. But he IS looking big and plump and giving the doctors the "catch up" growth they wanted. So good news. He is recovering well from the surgery and is a lot more comfortable since the swelling has had time to go down. He is also completely off reglan (O, happy day) and has received permission to try stopping the other 2 reflux drugs one by one. We are thanking God for the good results from the surgery.

Toby also saw his pulmonologist. He has been battling a cough and cold for the last week and it has started to move into his lungs a little bit. She is giving him another course of steroids and extra breathing treatments and sounds hopeful that he can get past this without anything more serious developing. More good news.

In the true confessions category, I will mention that Toby DID have a trip to the emergency room Friday evening. There was absolutely nothing wrong him, however. I just grabbed a pair of scissors in a moment of frustration and struggle with a piece of tape- and snipped a hole in his g-tube. 5 seconds to make the mistake, 5 hours to fix it. He had to have a new tube put in. The surgical site is not yet healed so even the ER doctors could not replace it but had to call the surgeons in. How do YOU spell embarrassment? Toby's pulmonary nurse walked into the room today, looked at me and said, "measure twice, cut once". Yes, that little incident is part of his medical record now and there for all to enjoy. So smile along with us- and thank God with us that He continues to protect Toby from serious illness . . . and from his mother.

g-tube

Here is a look at Toby's new g-tube for those who are not sure what I've been talking about. One end is located inside his stomach and held in place by a water-filled balloon. The other end can be hooked up to more tubing so his milk can be run directly in. We are using a pump to control the rate. Right now, he is on the pump (i.e. eating continuously) for about 14 hours a day with time off for good behavior. Good behavior equals willingness to take a few ounces from the bottle and is rewarded with freedom to get up and play.



Free from his oxygen tubing for a few minutes today after his bath:


All hooked up again and back to sweet dreams. His last visit to the hospital, one of his doctors used him to explain to her students that you can spot a preemie by his "toaster head", the flattened sides from laying on them and being flipped like a pancake when he should have been floating and growing in the womb. An accurate assessment, perhaps, but one cute piece of toast.

11 months

Toby has had a fairly good week. He is still being fed by a continuous drip through his new g-tube, but we have begun turning it off during the day and trying to reintroduce the bottle. He has not been very interested in it yet, but is taking a little bit more each day. He saw the pediatrician yesterday (for his monthly shot) and has gained 4 ounces this week.

He seems to be recovering well from the surgery. For a while afterwards, he seemed unwilling to use his stomach muscles and sit up. Now he is back to the vertical, playing, and a lot of fun.

He does still seem to have reflux-like discomfort at times. So no verdict yet on how successful the surgery was.

I know it has been a while since any photos went up. The camera took a vacation, but has returned. Here's a look at him without the ng tube (hooray!) and enjoying a good book.

Home again

We made it home last night and have the new equipment up and running. Toby has had a good day today and seems to be feeling pretty good. He is still on continuous feeds but we plan to try some bottles in the next few days. We are eager to see how he feels about them now that the ng tube is out of the way but want to give his stomach time to heal. His stomach is also smaller now that some of it was used to form the wrap so he may not be able to handle as much. Meanwhile, we are very thankful for the smooth sailing so far since surgery.

Toby is fairly comfortable today, playing and resting. It was amazing yesterday to watch him improve hour by hour. He was just up a couple times during the night with discomfort and it is manageable with Tylenol and Motrin. He is being fed by a continuous slow drip and is now receiving the full volume he needs, so the iv is off. He will be fed this way for the next couple weeks at home while the stomach heals and adjusts. Then we will be able to try a more normal feeding pattern. It sounds like we will be here today. His pulmonary doctor wants a chest x-ray. We will have training tomorrow with the new feeding equipment and then we should be home!

The surgeon says that the procedure went very well. Everything just added up to a long day: a late start, a little longer than planned in surgery, longer in recovery, and then a wait for a room back up here on 5 west where they have been and are full up. They squeezed us in though, and we are glad to be here.
Toby was- not surprisingly- very uncomfortable yesterday and during the night. They have been using morphine and Tylenol to let him rest and he has wanted them both. He is starting to feel a little bit better this morning. They are going to try feeding him a slow drip through his new tube. I have seen it used for medicines already and it looks great. No more checking for tube placement or worries about accidentally putting fluids into the lungs. And I know he will be glad to have the irritant of the ng tube gone.
So we are back to the waiting game. Wait and see how he does with the feeds and recovery from surgery and then wait and see how effective the changes are at relieving the reflux problems - and what, if any, new problems they bring.
We will keep you posted!

The surgery is over and Toby is recovering uncomfortably. Now we will wait and see how recovery goes.

 1 lb 13 oz (his birth weight) to 13 lb 1 oz (Toby's weight today):  That's a reversal we're thrilled to see.

The call came this afternoon with the schedule for tomorrow.  Surgery will be at nine and should last about three hours.  After an hour or so in recovery, he will be admitted.  

It will be "laproscopic" surgery.  Instead of a single, large incision, there will be four or five small ones.  The surgeon will use robotic arms and a camera which he operates remotely while another surgeon assists.  This procedure is supposed to have a much shorter and easier recovery period. 

The results of the fundoplication surgery can be quite variable in terms of effectiveness and complications.  Obviously, we want Toby to have the most positive outcomes and are praying to that end.  Thanks to all of you for your continued concern and prayers for us.  You give us strength and encouragement. 

Toby continues to do well as we count down to surgery- only 3 more days. Thursday, he will return to the pediatrician for a check of the previously infected ear. The surgeon's office will call that afternoon with a scheduled time for the surgery on Friday. I am assuming it will be in the morning, so am going to Ann Arbor on Thursday. He will be in the hospital for 3 - 5 days.

He is learning and changing so quickly now. He prefers to sit up and doesn't like to be alone in bed as much any more, preferring the action and fun his siblings provide. Today, he surprised us with fits of laughter as he watched his sister's silliness. If he likes that kind of stuff, he will be very happy here. One of them is nearly always being silly.

But when he's had enough, he pulls a blanket over his head and shuts the world out. Nap time!

It was back to the pediatrician today after a night in which Toby exercised his lungs and I exercised my legs- walking the floor. He has another ear infection; I am always glad to hear that it is nothing worse.
He did gain a few ounces over the weekend after I put the ng tube back in. He has refused to take any more bottles, though. So it is evident that the ng tube is a deterrent to his eating. This is a vote in favor of at least a g-tube so that he can work on his oral skills.
The attempt to wean Toby off reglan was also informative. After two days of reduced dosage, his vomiting was back and costing him significant amounts of each feeding. He is not able to do without the reglan in his current condition.
So having had a chance to do more reading and review both the big picture and some of the many details, I am satisfied that the plan in place- surgery for both a g-tube and fundoplication on the 30th- is the best choice for now.

Toby is sitting up some, as long as we stand by to catch that precious head when he invariably wobbles over. A weeble he is not. He is also starting to experiment with a few consonants. The proud dada now has a reason to come running; it does sound like he's being called.

Things we are thankful for today:
getting to go out in sunshine (very cheering)
faithful doctors
answers to our prayers for help in making the necessary decisions.

Happy 5oth Birthday, Uncle Arthur

We had the scheduled visit with the surgeon on Tuesday. Yesterday, we were back at U of M for a pre-op consult with a nurse who works with the anesthesiologist. Today, it was back to the pediatrician for a recheck of the previously infected ear. (Yes, that problem at least is all cleared up.)

The surgeon felt that given the past month of positive weight gain and lack of pulmonary problems, we have a choice about whether or not to proceed with the surgery. Actually, there are three choices: continue as we are, have just a g-tube put in, or both a g-tube and fundoplication. I do not want to continue as we are because one of the drugs Toby has been taking (reglan) is not one he should be on long-term, if at all. The surgeon suggested I try taking him off it now and, with my pediatrician's agreement, I am weaning him off to see how he does now without it. Meanwhile, surgery (both g-tube and fundo) has been scheduled for Friday the 30th. This can be cancelled or postponed if Toby does unexpectedly well without the reglan.

The fundoplication is a treatment for his GERD (acid reflux disease). The upper part of the stomach is wrapped around the lower part of the esophagus to strengthen/create the valve that should be there to prevent stomach contents from moving back up. In theory, this prevents the reflux from occuring.

A g-tube is a port through the belly into the stomach- direct access, if you will. It is another way to give tube feedings. (Toby has been having his tube feedings through an ng tube. Ng means naso-gastric and is inserted through the nose and down into the stomach.) A g-tube can be used when tube feedings are need long term and would also be necessary with the fundo because the surgical site (stomach and esophagus) would be swollen for a time.

We continue to beg God for wisdom as we make decisions in the next few weeks.

The good news this week was that Toby began taking his bottle again. He has been refusing it the past few weeks except for an ounce or two every few days. I allowed him a short break from the ng tube to see what he could do. Evidently, he found hunger to be motivating. I think discomfort from the ng tube has also been a factor. When I put it back in today, he immediately became more fussy and less willing to eat. I did have to put it back, though, because he lost weight the last day or two without it.

We are thankful for all of you who are continuing to follow Toby's progress and for your prayers. It is a comfort to know that God's plans are good and cannot be thwarted even by "mistakes" his parents may make. It is a good time to remind ourselves both of God's goodness and his power.

12 pounds 2 ounces and looks every bit of it! The nurse suggested we may have to stop calling him Toby and start calling him Tubby. He's probably not really to that point, but the contrast to his former lean look is enjoyable.

We are not doing as well at avoiding illness. Along with getting his monthly synergist shot today (for protection against RSV during this winter season), Toby was diagnosed with an ear infection. We were glad to hear it as we had plenty of time to imagine worse possibilities during the hours he cried inconsolably yesterday. Tylenol was his only true love- which gave us hope that it was something simple like a good old-fashioned ear infection.

I also made a visit to the doctor and am now being treated for bronchitis. I felt the invasion into my chest a few days ago and am so thankful that Toby's latest illness has not gone in that direction. His lungs continue to do well. His siblings also are managing to stay pretty healthy. Somehow, Toby seems to catch every germ that blows by, despite the precautions and industrial size bottle of sanitizer. He's been practically in isolation, only leaving the house to go to doctors and hospitals (admittedly not the healthiest of places), so I'm not sure if he is picking up the germs there or just letting the rest of us bring them to him.

But the new year brings new hope, and the knowledge that we are marching towards spring. Half-way there and thanking God for upholding us so far.