We saw the eye doctor on Tuesday. Toby's eyes are still immature but developing normally with no sign of abnormal blood vessel development. This is a potentialy serious complication for which Tobias has all the risk factors but which God has mercifully allowed him to avoid. We are also thankful to have one of the five pediatric opthamologists in the state of Michigan located here in Hillsdale (I have no idea what she's doing here!) and so have not had to drive to Toledo for the check-ups he has had so far nor the ones yet to come. This is an enormous savings in time and gas money. Thank you, Lord!
Yesterday was the pediatrician's turn. He found nothing to be concerned about and says Toby is doing well, all 6 pounds 9 ounces of him!
Thursday, June 26, 2008
Sunday, June 22, 2008
Age: Zero
The days are hastening by in what I can only describe as a typical newborn fog. You know the one- resulting from lack of sleep and the endless cycle of feedings and diaper changes and fussiness. How we are enjoying even this part of normalcy!
Yesterday was Tobias' due date. He is 15 1/2 weeks old and has progressed from a gestational age at birth of 24 1/2 weeks to the full 40 of a typical newborn. For the next 2 years, we will be dealing with two ages for him. He has his age dated from his birth on March 6, but he also has an adjusted age which will date from now, when he should have been born. It is the adjusted age which tells us where he is- or should be- developmentally. For example, a baby normally can sit by the age of 6 months. Since Toby was born 3 1/2 months early, we should expect him to be able to do so by about 9 1/2 months, which is his adjusted age of 6 months. After about 2 years, though, his developmental age and his birth age should equalize.
So we are now enjoying life with a "newborn". Toby is eating and sleeping and growing- with a bit of crying thrown in. We continue to thank God daily for the progress he has made from an untouchable baby with no voice to one who can wail and is cuddly, too. He does has one trick a normal newborn doesn't; when he gets really mad, his heart rate goes up enough to sound the alarm on his monitor. Then we have both a screaming baby and a shrill monitor alarm to deal with. He gets the attention he wants!
Some of you who live in the vicinity have been wondering when Toby will be out and about. First, consider his adjusted age and realise that he is still quite young. He does also have some medical issues even though he is doing great. His doctors have advised me to consider him as "fragile". It can be difficult to remember when he looks so good to me. But he is much more vulnerable to illnesses and more likely to end up hospitalized in this first year. We need to avoid crowds and "large family gatherings". That last makes me laugh, because his home IS a large family gathering. I guess we will deal with that the best we can. His pediatrician here in Hillsdale has said he needs at least a couple of months to adjust to his home environment and also that extra precautions will be needed as we enter the fall and winter seasons with their accompanying health hazards. So please be patient with us as we feel our way forward through the coming months and pray with us that we make wise decisions. Additionally, the other children are already realising that some of their activities are also restricted by Toby's limitations. It is going to be a challenging year as we all adjust.
Medical appointments do get us out and about more than I would like. I am practicing my mule imitation as I pick up Toby in his car seat, my purse, the diaper bag, the monitor, and an oxygen tank just to walk out the door. Set everything down, open the van door, put everything in. Drive. Repeat. You get the picture. And let me tell you, it's impossible to even FAKE looking together and organized when you have so many pieces to hold together. Another thing to be thankful for: it's not winter and we don't have to deal with snow and cold also.
Toby is due back to the eye doctor on Tuesday and the pediatrician on Wednesday. I will let you know how much he has grown and how well he is doing. Judging by the second chin he is adding, I'm sure the news will be good.
Yesterday was Tobias' due date. He is 15 1/2 weeks old and has progressed from a gestational age at birth of 24 1/2 weeks to the full 40 of a typical newborn. For the next 2 years, we will be dealing with two ages for him. He has his age dated from his birth on March 6, but he also has an adjusted age which will date from now, when he should have been born. It is the adjusted age which tells us where he is- or should be- developmentally. For example, a baby normally can sit by the age of 6 months. Since Toby was born 3 1/2 months early, we should expect him to be able to do so by about 9 1/2 months, which is his adjusted age of 6 months. After about 2 years, though, his developmental age and his birth age should equalize.
So we are now enjoying life with a "newborn". Toby is eating and sleeping and growing- with a bit of crying thrown in. We continue to thank God daily for the progress he has made from an untouchable baby with no voice to one who can wail and is cuddly, too. He does has one trick a normal newborn doesn't; when he gets really mad, his heart rate goes up enough to sound the alarm on his monitor. Then we have both a screaming baby and a shrill monitor alarm to deal with. He gets the attention he wants!
Some of you who live in the vicinity have been wondering when Toby will be out and about. First, consider his adjusted age and realise that he is still quite young. He does also have some medical issues even though he is doing great. His doctors have advised me to consider him as "fragile". It can be difficult to remember when he looks so good to me. But he is much more vulnerable to illnesses and more likely to end up hospitalized in this first year. We need to avoid crowds and "large family gatherings". That last makes me laugh, because his home IS a large family gathering. I guess we will deal with that the best we can. His pediatrician here in Hillsdale has said he needs at least a couple of months to adjust to his home environment and also that extra precautions will be needed as we enter the fall and winter seasons with their accompanying health hazards. So please be patient with us as we feel our way forward through the coming months and pray with us that we make wise decisions. Additionally, the other children are already realising that some of their activities are also restricted by Toby's limitations. It is going to be a challenging year as we all adjust.
Medical appointments do get us out and about more than I would like. I am practicing my mule imitation as I pick up Toby in his car seat, my purse, the diaper bag, the monitor, and an oxygen tank just to walk out the door. Set everything down, open the van door, put everything in. Drive. Repeat. You get the picture. And let me tell you, it's impossible to even FAKE looking together and organized when you have so many pieces to hold together. Another thing to be thankful for: it's not winter and we don't have to deal with snow and cold also.
Toby is due back to the eye doctor on Tuesday and the pediatrician on Wednesday. I will let you know how much he has grown and how well he is doing. Judging by the second chin he is adding, I'm sure the news will be good.
Tuesday, June 17, 2008
At Last
As you can see, we are all quite happy to have Toby with us at last. It has been a very hectic week and a half, trying to get Mom and Toby moved into the house. Toby visited the eye doctor today. So far, all is well. He will go back in one week to have them examined once more. It is critical at this stage to track the developing cells in order to ensure that they develop correctly - we really want him to see!
The rest of the week is filled with more doctor's visits. Both Tobias and Mom have doctors to see. Mom did develop an infection this weekend, but is now recovering nicely. Sorry for the infrequent updates, but there's so much to do!
Friday, June 13, 2008
Toby makes tiny humming noises when he sleeps. Currently he is curled up on my chest, oblivious to the chaos around him. He visited his pediatrician yesterday, and has gained six ounces in the three days since returning home. He now weighs in at a hefty 5 pounds and 11 ounces.
Toby firmly believes himself to be the center of the world, happily setting off alarms (mainly by pulling the patches off of his chest)and enjoying the ensuing attention. The girls are all quite happy to give him attention, competing for the chance to hold him.
Pictures are still on their way . . . we will post some eventually.
- K
Toby firmly believes himself to be the center of the world, happily setting off alarms (mainly by pulling the patches off of his chest)and enjoying the ensuing attention. The girls are all quite happy to give him attention, competing for the chance to hold him.
Pictures are still on their way . . . we will post some eventually.
- K
Tuesday, June 10, 2008
To God be the glory . . .
I was perhaps a bit brief last night, so thought I would add a little more.
Tobias was released yesterday after 3 months and 3 days. 94 days. One fourth of a year. It puts me in mind of the verse, "If the Lord wills, we will live and also do this or that." ( James 4:15) How little we control and how great must be the One who does.
Toby came home weighing 5 pounds 5 ounces, a big improvement from his start of 1 pound 13.
A couple more ounces, and he will have tripled his birth weight. It is truly amazing. I reviewed a lot of his chart the last week in the hospital. There were no sudden changes or giant leaps forward but just (how carelessly I use that word) the daily sustaining grace of God and new mercy every day. Tobias is a miracle but not so very different from each of us. We were privileged to see part of his journey to this point, which most babies make in secret; and some of us had the further privilege to participate with God in the process. ( I can't help noticing how effortlessly He usually does it and how apparently tenuous it is with us involved.)
Many of you participated through your prayers on Toby's behalf. We are deeply grateful to you and for you, knowing that in some way not fully understood God chooses to use our prayers. Many also helped us with cards, visits, encouraging words, and generous gifts. God used you to give us hugs when we needed hugs, laughter when we needed laughter, and even tears when we needed tears. Thank you. A special group of you were hand-chosen by the Lord of the universe to be His hands here and give the physical care that Toby needed. (And you did it with such humility and kindness.) You have a special place in our hearts and no, we will not forget the NICU.
Toby brought some paraphenalia home with him. He is on oxygen and expected to be so for three or four months. He is on a monitor, probably for a month longer than the oxygen. We are also giving breathing treatments twice a day. And that's about it. Not bad for a baby who started out on the "critical" list. His heart surgery is a thing of the past. He has some minor hernias for which he will need surgery by about September. The eye doctor continues to monitor for possible problems, but does not expect anything major at this point. The major ongoing issue is expected to be his lungs. A ventilator can do quite a bit of damage while it's saving you. But even that should become much less of a problem in the next 5 - 7 years as new lung tissue grows. It is easy to believe as he seems louder every day.
Who wants to praise the Lord with me?
(Set your alarm to go off every three hours because that's how often he needs to eat.)
I will try to get to some at-home pictures in the next few days. We've been busy here!
Tobias was released yesterday after 3 months and 3 days. 94 days. One fourth of a year. It puts me in mind of the verse, "If the Lord wills, we will live and also do this or that." ( James 4:15) How little we control and how great must be the One who does.
Toby came home weighing 5 pounds 5 ounces, a big improvement from his start of 1 pound 13.
A couple more ounces, and he will have tripled his birth weight. It is truly amazing. I reviewed a lot of his chart the last week in the hospital. There were no sudden changes or giant leaps forward but just (how carelessly I use that word) the daily sustaining grace of God and new mercy every day. Tobias is a miracle but not so very different from each of us. We were privileged to see part of his journey to this point, which most babies make in secret; and some of us had the further privilege to participate with God in the process. ( I can't help noticing how effortlessly He usually does it and how apparently tenuous it is with us involved.)
Many of you participated through your prayers on Toby's behalf. We are deeply grateful to you and for you, knowing that in some way not fully understood God chooses to use our prayers. Many also helped us with cards, visits, encouraging words, and generous gifts. God used you to give us hugs when we needed hugs, laughter when we needed laughter, and even tears when we needed tears. Thank you. A special group of you were hand-chosen by the Lord of the universe to be His hands here and give the physical care that Toby needed. (And you did it with such humility and kindness.) You have a special place in our hearts and no, we will not forget the NICU.
Toby brought some paraphenalia home with him. He is on oxygen and expected to be so for three or four months. He is on a monitor, probably for a month longer than the oxygen. We are also giving breathing treatments twice a day. And that's about it. Not bad for a baby who started out on the "critical" list. His heart surgery is a thing of the past. He has some minor hernias for which he will need surgery by about September. The eye doctor continues to monitor for possible problems, but does not expect anything major at this point. The major ongoing issue is expected to be his lungs. A ventilator can do quite a bit of damage while it's saving you. But even that should become much less of a problem in the next 5 - 7 years as new lung tissue grows. It is easy to believe as he seems louder every day.
Who wants to praise the Lord with me?
(Set your alarm to go off every three hours because that's how often he needs to eat.)
I will try to get to some at-home pictures in the next few days. We've been busy here!
Monday, June 9, 2008
Sunday, June 8, 2008
Saturday, June 7, 2008
Preparations for Toby's triumphant homecoming continue moving steadily forward. Yesterday, Carelink came, bringing oxygen tanks and the necessary equipment for Toby's breathing treatments. I now am able to administer breathing treatments, change oxygen equipment, and be generally useful. Lydia and I spend our evenings sewing small diapers and doing various other little things.
All of the kids are eagerly anticipating the return of their mother . . . and the arrival of Toby. For now, we wait.
- Kathryn
All of the kids are eagerly anticipating the return of their mother . . . and the arrival of Toby. For now, we wait.
- Kathryn
Friday, June 6, 2008
Happy 3 Month Birthday, Tobias!
Toby has had a couple of good days. Mostly, he is eating and sleeping and growing. He did begin to gain weight again and, yes, he is back to five pounds. Plus an ounce. He is handling the bottle much more competently so that the feedings are not such a struggle for him; he has a new skill set of coping strategies to draw on when dealing with choking or too fast a flow or the need to breathe. Most of them include sound effects. (He has enjoyed the ability to vocalize for a whole vent-free month, now.) He had just one alarm yesterday in the evening and none since. I think that qualifies him as half-way through the required waiting period. Maybe home on Sunday? We shall wait and see . . .
Meanwhile, a milestone like three months just begs for more photos. So here's a peek at today's activities:
Sucking his arm,
thinking,
bathing,
adjusting his cannula,
yawning,
and some quiet time.
Wednesday, June 4, 2008
To be or not to be
5 pounds- that is the question Toby is deciding. Yesterday, he reached that milestone and generated much rejoicing. Yesterday was also the first time he went an entire day with only nipple feedings and nothing through the tube. By this morning, he had lost an ounce and could no longer lay claim to 5 pounds of greatness.
He continues to improve with his feeding abilities, but it is hard work for him. The weight loss basically means that he expended more energy eating than he took in. He also had a number of alarms yesterday and today while eating. That is a sign of fatigue and the amount of effort it is costing him to eat. I think he did manage to take in a greater volume today, though. So we will WAIT -have you heard that word from us before?- and see how his weight is tomorrow morning.
My understanding of the criteria for release is that he must nipple all his feeds for 48 hours while gaining weight and having no alarms. Any problems restart the clock, so it is impossible to know when you will actually leave. In my time here, I've seen many parents disappointed by delays caused by an alarm late in the game.
So here we are.
He continues to improve with his feeding abilities, but it is hard work for him. The weight loss basically means that he expended more energy eating than he took in. He also had a number of alarms yesterday and today while eating. That is a sign of fatigue and the amount of effort it is costing him to eat. I think he did manage to take in a greater volume today, though. So we will WAIT -have you heard that word from us before?- and see how his weight is tomorrow morning.
My understanding of the criteria for release is that he must nipple all his feeds for 48 hours while gaining weight and having no alarms. Any problems restart the clock, so it is impossible to know when you will actually leave. In my time here, I've seen many parents disappointed by delays caused by an alarm late in the game.
So here we are.
Monday, June 2, 2008
Today has been busy with paperwork and phone calls and details that need to be in place before Toby can go home. There are a lot of pieces that need to come together but bit by bit they are. The key to getting out of here continues to be Toby's ability to feed. They decided yesterday to let him eat what they call "ad lib" and what I would call "on demand". He is no longer tied to a set schedule and set amounts, though there are still some minimum requirements in both departments. This gives them a pretty good idea of how he would do at home. He is doing ok, but not great. He has yet to nipple feed successfully for an entire day. He did fairly well yesterday but was more fatigued today. So he has to improve quite a bit yet. Still, compared to where he was a week ago, he is doing fantastic. It is difficult to be discouraged when we have seen so many good things happen. We will just have to wait and see if he meets the goal of home this week- praying and trusting God for some more of His perfect timing.
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