His sisters have already been including him in their play-
Toby is working towards his first push-ups, but not there yet-
Sunday, July 20, 2008
Watching the grass grow
Not much of note this week. The time was devoted to eating and sleeping and growing. Every time I hold him, I am astonished by the heft of him. He may not yet be large as babies go, but the contrast is so marked as to be marvelous. I am glad I have kept a close eye on him or I would be unable to believe that this is the same baby. As it is, it boggles my mind. He does seem to be growing as quickly as the proverbial grass after the rain. And he continues to be a high maintenance baby, eating often and sleeping lightly. Lacking much news, I thought I would share a few pictures from the week.
His sisters have already been including him in their play-
Toby is working towards his first push-ups, but not there yet-
His sisters have already been including him in their play-Toby is working towards his first push-ups, but not there yet-
Saturday, July 12, 2008
The numbers
1 month at home
4 months old
18 weeks old
43 weeks gestational age
3 weeks adjusted age
19 1/4 inches long
7 pounds 5 ounces
4 times his birth weight
2 eyes developing normally
1 God to whom
All the praise is due
Tobias saw the eye doctor yesterday and the pediatrician today. They were both very encouraging in their assessment of his progress. He is evidently eating well and growing appropriately. It is good to know that his feeding issues are no longer a major concern. He's come a long way from the first milliliter of milk through a tube. He is now on a fairly typical newborn schedule; if he's not asleep, he thinks he should be eating. His eyes have blood vessel development out to the edges with no sign of problematic growth. So when he sees the opthamologist again next month, she says she will be shifting her focus to being sure of proper muscle development.
I met a mother today who has a two year old who was born at almost the same age and weight as Tobias. She told me that he has seizures and problems which will prevent him from ever being independent. It was a sobering reminder of how much mercy and grace God has poured out on us. We are so grateful.
4 months old
18 weeks old
43 weeks gestational age
3 weeks adjusted age
19 1/4 inches long
7 pounds 5 ounces
4 times his birth weight
2 eyes developing normally
1 God to whom
All the praise is due
Tobias saw the eye doctor yesterday and the pediatrician today. They were both very encouraging in their assessment of his progress. He is evidently eating well and growing appropriately. It is good to know that his feeding issues are no longer a major concern. He's come a long way from the first milliliter of milk through a tube. He is now on a fairly typical newborn schedule; if he's not asleep, he thinks he should be eating. His eyes have blood vessel development out to the edges with no sign of problematic growth. So when he sees the opthamologist again next month, she says she will be shifting her focus to being sure of proper muscle development.
I met a mother today who has a two year old who was born at almost the same age and weight as Tobias. She told me that he has seizures and problems which will prevent him from ever being independent. It was a sobering reminder of how much mercy and grace God has poured out on us. We are so grateful.
Monday, July 7, 2008
Well, ok. That overnight transition in his ability to feed turned out not to be quite so easy. It has been hard work for Toby to nurse and has required a lot of extra time and attention this past week. He is doing well, though. Yesterday and the last couple nights were back to a schedule more closely aligned with what he was doing before and a welcome relief from the every two hour schedule he had been needing. One remaining concern is if he is getting the caloric intake he needs to grow at a good rate now that his milk can no longer be boosted or measured. When he was weighed on Thursday, his weight was only two ounces more than the previous week. He will be weighed again on Friday and we will be able to tell if he is back on track.
The good news which I have been so long in telling is that his lungs have improved dramatically. The pulmonologist tested him off of the oxygen for 5 or 10 minutes and his saturation level only went down slightly to 92%; it would not have been enough to sound the alarms by the parameters they used in the NICU. She said that enough new lung tissue has grown that he is a different baby than he was a month ago. Sometime in the next month, he will be tested here at home so that the weaning process can begin and Toby can come off the oxygen.
Right now, though, he is screaming his head off.
The good news which I have been so long in telling is that his lungs have improved dramatically. The pulmonologist tested him off of the oxygen for 5 or 10 minutes and his saturation level only went down slightly to 92%; it would not have been enough to sound the alarms by the parameters they used in the NICU. She said that enough new lung tissue has grown that he is a different baby than he was a month ago. Sometime in the next month, he will be tested here at home so that the weaning process can begin and Toby can come off the oxygen.
Right now, though, he is screaming his head off.
Wednesday, July 2, 2008
It has been another good week. Toby seems to be thriving and is having fewer alarms. The big news is that he has made huge strides forward in his ability to feed normally. It was literally an overnight transition; one day he couldn't and the next day he could. This simplifies life enormously and brings much thanksgiving and rejoicing. Tobias has demanded nearly continuous care some days, but only in what is likely tyical newborn behavior.
Tomorrow we are off to Ann Arbor for his first follow-up visit with the pediatric pulmonologist (lung doctor). I am not sure what to expect but understand that this will be the person responsible for decisions regarding Toby's oxygen, monitor, and breathing treatments.
Tomorrow we are off to Ann Arbor for his first follow-up visit with the pediatric pulmonologist (lung doctor). I am not sure what to expect but understand that this will be the person responsible for decisions regarding Toby's oxygen, monitor, and breathing treatments.
Ivy pursuing her goal of teaching Toby to be nice.
Toby surprised by our attempts to take his picture right after his bath.
Toby looking vaguely worried by our picture-taking. He would much rather have stayed in the tub.
We tried to take a picture of Toby looking intelligent. He didn't cooperate.
Toby's shark fin hairdo. Thursday, June 26, 2008
Follow up-
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!
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!
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.
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