Josiah woke at 1am for a weight check and feeding. He's weighing in at 3.14k (down from 3.15 the night before). Then he slept until 7am. We woke to confirmation of today's planned discharge. Carl is coming at 3pm to take us home.
Josiah had several feedings this morning, as well as a bath. His final labs came back perfect. He is healthy. He is strong.
I've returned a borrowed movie. I will return this borrowed computer soon. Our bags are packed. We are ready to go home. Josiah is enjoying his last nap here.
I reflect on the last week and I am amazed at where we stand now. I am amazed at Josiah's strength. I am in awe of our little heart hero. I am star-struck over his determination and bravery. What has transpired is nothing more than a miracle (and a whole lot of skill). They have given us back our son. I am thankful for everything the doctors have done. I am thankful for broken hearts made whole. I am thankful for a wonderful family, support network, and friends.
All the while, I can't ignore what we were not faced with. My heart breaks for the children who don't go home. I shed tears for the car seats that leave empty. I am saddened by the empty cribs unable to embrace the children they were assembled for. For so many, it is not the happy ending we are living. For those, my prayers are with you.
I will never forget how precious life is. I shall never take for granted the miracles we have been blessed with.
Climbing Up the Down Staircase is an incredible journey! For that, we are so fortunate.
Showing posts with label journey. Show all posts
Showing posts with label journey. Show all posts
Sunday, January 29, 2012
Friday, January 27, 2012
Late Night Update
Josiah has continued to progress in, what seems like, an unprecedented fashion :)
After his afternoon nap, he was allowed to nurse for the first time since prior to surgery. He did GREAT! He's back to his every four hours feeding routine. The arterial line has been removed as well as several IVs. He continues to receive medication to prevent blood-clots and a diuretic. He's also receiving high blood pressure medication. The surgeon explained that Josiah's heart has been essentially bench pressing 150lbs (due to the holes). The holes are gone, yet the heart hasn't learned that it no longer needs to pump with such aggression. The discrepancy causes his blood pressure to be high....this will improve with time. Although he may be sent home on medication, the belief is that it will all be short-term medication. That is such good news.
Tomorrow, Josiah's central line will be removed and he will be moved OUT OF ICU. It's amazing how well he is doing.
While feeding him this evening, a 'code blue' was called on the unit. The dichotomy of emotion was strange. On the one hand, my heart poured out to the child/family who was being affected; the other half of me was thankful that it wasn't my child/family. Some time later, I was leaving the unit to take a walk. I used the same hallway I'd used so many times before. I quickly came across a swarm of staff members who redirected me to a different exit. They were in front of a room who was housed by a little boy. I remember (previously) thinking that this child had been here awhile as the window to his room was decorated with large posters, his name, cut out snowflakes, etc. I will simply refer to him as "W." As I exited the unit, I walked by a small consult room. There were two staff members talking to a young woman (who was crying). I heard one staff member say, "We'll take everything off, clean him up, and you can spend as much time as you need." I inwardly gasped for air. She had just lost her little man. How absolutely terrifying and tragic. I keep thinking of that little boy and hope he is resting peacefully with the angels in Heaven. Sweet eternal dreams little W.
Tonight, I learned that a dear friend had a heart attack. He's young. Thank God, he's ok. It shows you that you just never know. Always remember to hold your loved ones close & tell them you love them, often. Hold on to the good; let go of the bad. Harbor forgiveness, not resentment. Be thankful, not bitter. Enjoy every minute you're given.
It's late and I should nap. Tomorrow, we continue our own amazing journey. I can't wait!!!
Until then, my friends.....
After his afternoon nap, he was allowed to nurse for the first time since prior to surgery. He did GREAT! He's back to his every four hours feeding routine. The arterial line has been removed as well as several IVs. He continues to receive medication to prevent blood-clots and a diuretic. He's also receiving high blood pressure medication. The surgeon explained that Josiah's heart has been essentially bench pressing 150lbs (due to the holes). The holes are gone, yet the heart hasn't learned that it no longer needs to pump with such aggression. The discrepancy causes his blood pressure to be high....this will improve with time. Although he may be sent home on medication, the belief is that it will all be short-term medication. That is such good news.
Tomorrow, Josiah's central line will be removed and he will be moved OUT OF ICU. It's amazing how well he is doing.
While feeding him this evening, a 'code blue' was called on the unit. The dichotomy of emotion was strange. On the one hand, my heart poured out to the child/family who was being affected; the other half of me was thankful that it wasn't my child/family. Some time later, I was leaving the unit to take a walk. I used the same hallway I'd used so many times before. I quickly came across a swarm of staff members who redirected me to a different exit. They were in front of a room who was housed by a little boy. I remember (previously) thinking that this child had been here awhile as the window to his room was decorated with large posters, his name, cut out snowflakes, etc. I will simply refer to him as "W." As I exited the unit, I walked by a small consult room. There were two staff members talking to a young woman (who was crying). I heard one staff member say, "We'll take everything off, clean him up, and you can spend as much time as you need." I inwardly gasped for air. She had just lost her little man. How absolutely terrifying and tragic. I keep thinking of that little boy and hope he is resting peacefully with the angels in Heaven. Sweet eternal dreams little W.
Tonight, I learned that a dear friend had a heart attack. He's young. Thank God, he's ok. It shows you that you just never know. Always remember to hold your loved ones close & tell them you love them, often. Hold on to the good; let go of the bad. Harbor forgiveness, not resentment. Be thankful, not bitter. Enjoy every minute you're given.
It's late and I should nap. Tomorrow, we continue our own amazing journey. I can't wait!!!
Until then, my friends.....
Tuesday, December 13, 2011
2-months old
Has it really been 2 months since Josiah was born??? This is an amazing journey we are on. I'm loving every minute of it.
Josiah had his first EI visit and he did very well. He is a social little boy and likes the EI worker. At this point, they simply monitor his movements, etc. He's turning his head in both directions (favoring the right, slightly). He tolerates laying on both sides. He brings his hands up to his mouth. Even on his side, he is able to bring his hands to mid-line and then to his mouth. He is alert and enjoys looking around his environment. He recognizes voices and searches for those he knows. His eyes are big and bright :) No delays evident, as of yet. The EI professional has requested a PT and RN consult. This is not due to any concerns, per se. Rather, they want to assure that a whole team is in place in the event they are needed.
I enjoy facebook very much but am very selective with whom I'm friends with (I have to actually know you, for example lol). Carl & I were recently introduced to a local group of parents. They have a page on FB & we recently joined. What an amazing group of people. There are approximately 130 members. They are all local and they are all raising a child with DS. They have get-togethers once per month & special annual events. We look forward to attending our first get-together & getting to know our new friends.
With the Holidays rapidly approaching, I have not yet made an appt for Josiah's "new baby" visit to Boston Children's DS clinic. We'll likely schedule that for January. His first clinic appt is scheduled for June. At that time, he'll meet with their team of specialists. They will monitor him approx. every 8 months until the age of 18. What an amazing time & place we live in. I thank God everyday that Josiah has such wonderful supports. I know he will truly blossom into an incredible young man, just like his two brothers.
Josiah's older brothers are great. James just turned two & cherishes every moment he is afforded to kiss his baby brother. James will say, "Hi, baby!" We have to keep reminding James that Josiah is not like his Elmo doll but rather a real baby. James would love to fling him on the floor and play with him....hence the constant supervision :) Jesse will be turning 5 in a few weeks.....I don't know where those 5 years went. He's doing very well in preschool & adores his baby brother(s). Jesse knows that Josiah has DS but it matters not. Josiah is his brother - nothing more, nothing less.
Oh yeah, I almost forgot to mention the best thing. Yesterday, Josiah turned 2 months old & he smiled at me. I mean a real ear-to-ear smile. My heart melted! As my friend said, "he turned 2 months old but you got the best present." She's absolutely right!
God knew what he was doing when he sent us Jesse, James, and Josiah. They are wonderful children & we couldn't ask for more. If I had to go back and do it all over again.....I wouldn't change a thing <3
Josiah had his first EI visit and he did very well. He is a social little boy and likes the EI worker. At this point, they simply monitor his movements, etc. He's turning his head in both directions (favoring the right, slightly). He tolerates laying on both sides. He brings his hands up to his mouth. Even on his side, he is able to bring his hands to mid-line and then to his mouth. He is alert and enjoys looking around his environment. He recognizes voices and searches for those he knows. His eyes are big and bright :) No delays evident, as of yet. The EI professional has requested a PT and RN consult. This is not due to any concerns, per se. Rather, they want to assure that a whole team is in place in the event they are needed.
I enjoy facebook very much but am very selective with whom I'm friends with (I have to actually know you, for example lol). Carl & I were recently introduced to a local group of parents. They have a page on FB & we recently joined. What an amazing group of people. There are approximately 130 members. They are all local and they are all raising a child with DS. They have get-togethers once per month & special annual events. We look forward to attending our first get-together & getting to know our new friends.
With the Holidays rapidly approaching, I have not yet made an appt for Josiah's "new baby" visit to Boston Children's DS clinic. We'll likely schedule that for January. His first clinic appt is scheduled for June. At that time, he'll meet with their team of specialists. They will monitor him approx. every 8 months until the age of 18. What an amazing time & place we live in. I thank God everyday that Josiah has such wonderful supports. I know he will truly blossom into an incredible young man, just like his two brothers.
Josiah's older brothers are great. James just turned two & cherishes every moment he is afforded to kiss his baby brother. James will say, "Hi, baby!" We have to keep reminding James that Josiah is not like his Elmo doll but rather a real baby. James would love to fling him on the floor and play with him....hence the constant supervision :) Jesse will be turning 5 in a few weeks.....I don't know where those 5 years went. He's doing very well in preschool & adores his baby brother(s). Jesse knows that Josiah has DS but it matters not. Josiah is his brother - nothing more, nothing less.
Oh yeah, I almost forgot to mention the best thing. Yesterday, Josiah turned 2 months old & he smiled at me. I mean a real ear-to-ear smile. My heart melted! As my friend said, "he turned 2 months old but you got the best present." She's absolutely right!
God knew what he was doing when he sent us Jesse, James, and Josiah. They are wonderful children & we couldn't ask for more. If I had to go back and do it all over again.....I wouldn't change a thing <3
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