I'm hearing all the talk of snow and hoping the weather will cooperate with our big doctor's appointment tomorrow.
Max is set to see the developmental pediatrician which is a big deal. It's probably our most important appointment since he left the NICU. This doctor will tell us about his vision, hearing, brain development, physical development, etc... I could be a good look at what lies ahead for Max in his long term care to try to catch him up with other children his age.
I'm excited because everything seems good so far, but also nervous. So many things about Max and his condition have surprised us along the way.
I'm saying prayers that we'll be able to get to this late afternoon appointment, and that Max will get another glowing report!
I was so surprised today to find a comment from a random NICU mom who read this blog. Her child is also in a NICU and was recently diagnosed with NEC. (the bowel disease which almost killed Max and still influences the way he eats.) I've always written for several reasons:
1.) to keep our friends and family up to date and avoid dozens of phone calls
2.) to keep a journal of sorts that I can look back at, share with Max and remember all that we've been through (perhaps even for a book someday)
3.) to share with others. I hope this mom will be able to learn something, anything from what we've been through that might help (we benefited so much from other former NICU families that I wanted to return the favor)
So I'll keep posting...
Monday, January 31, 2011
Thursday, January 27, 2011
Max @ 9 months...
We saw the pediatrician today and he had another RSV shot and his Hep B shot. He weighs 19 lbs 6.6 ozs (25th percentile) He is 27 inches long (7th percentile) and his head circumference is 48.3 cm (97th percentile BIG HAMBLIN HEAD!!)
All good things! So good in fact, that we can quit boosting his formula to 22 calories and just mix it per the instructions on the canister. We can move him to level 2 baby foods and start pureeing more of what we eat. We can add yogurt and veggie puffs, and cottage cheese and eggs and really increase the variety in his diet!!! Max will LOVE all of this, because he's been watching us eat and salivating at every bite. He's ready for more! Still no cereals, because of the iron fortification. That leads to constipation and Max can't handle that.
We will increase his physical therapy to once a week starting next week. The goal is to get him sitting independently, and get him up on all fours. He does not like to be on his belly, probably because of the scar tissue, bowels, etc... but he has VERY strong arms and legs, his core or trunk strength is just weak, so getting him up on all fours will help to get him moving.
He sees the developmental pediatrician next week and the pediatric ophthalmologist at the end of the month.
I was so excited by all of this today, and then I read of another preemie mom who lost her little girl, Lauren today, at 17 months. I was suddenly reduced to tears. When does the fear go away? When is he safe? When can we stop worrying that we're still going to lose him?
The pediatrician gave me a copy of his discharge paperwork from the hospital today to take to his other appointments. It outlines everything that I remember and some that I'd forgotten. The neonatologist talks about him being resuscitated at 7 minutes of life, about discussing with us the likelihood of his death from severe prematurity, and the counseling recommended for us, about his sepsis (blood infection), my infection, and his many, many health problems during that 123 day NICU stay.
I'm just reminded of how crazy it has all been. How fragile he was. How amazing it is that he's even alive today, and how much I love him. I can't put him down today. I want to hold him and kiss him and snuggle him and know that he'll be with me for the rest of my life... but sometimes, you just don't know... and it's days like this where faith is what keeps us going.
All good things! So good in fact, that we can quit boosting his formula to 22 calories and just mix it per the instructions on the canister. We can move him to level 2 baby foods and start pureeing more of what we eat. We can add yogurt and veggie puffs, and cottage cheese and eggs and really increase the variety in his diet!!! Max will LOVE all of this, because he's been watching us eat and salivating at every bite. He's ready for more! Still no cereals, because of the iron fortification. That leads to constipation and Max can't handle that.
We will increase his physical therapy to once a week starting next week. The goal is to get him sitting independently, and get him up on all fours. He does not like to be on his belly, probably because of the scar tissue, bowels, etc... but he has VERY strong arms and legs, his core or trunk strength is just weak, so getting him up on all fours will help to get him moving.
He sees the developmental pediatrician next week and the pediatric ophthalmologist at the end of the month.
I was so excited by all of this today, and then I read of another preemie mom who lost her little girl, Lauren today, at 17 months. I was suddenly reduced to tears. When does the fear go away? When is he safe? When can we stop worrying that we're still going to lose him?
The pediatrician gave me a copy of his discharge paperwork from the hospital today to take to his other appointments. It outlines everything that I remember and some that I'd forgotten. The neonatologist talks about him being resuscitated at 7 minutes of life, about discussing with us the likelihood of his death from severe prematurity, and the counseling recommended for us, about his sepsis (blood infection), my infection, and his many, many health problems during that 123 day NICU stay.
I'm just reminded of how crazy it has all been. How fragile he was. How amazing it is that he's even alive today, and how much I love him. I can't put him down today. I want to hold him and kiss him and snuggle him and know that he'll be with me for the rest of my life... but sometimes, you just don't know... and it's days like this where faith is what keeps us going.
Wednesday, January 19, 2011
Marching for Max
We've just signed up for the 2011 March of Dimes, Walk for Babies. Our goal is lofty... $1230. Max was in the NICU for 123 days, so I'm shooting for $10 per day.
So many people have supported us along the way. If each of you gave just $5 or $10, I know we'd reach our goal!
This cause is so important us!!! March of Dimes really provided us with the first information about having a preemie. They told us about all the peaks and dips on the roller coaster
ride in the NICU. They explained all the terms we'd hear, what would be done to him and for him, and what we could to to help bond with him and help in his care along the way.Perhaps most importantly, March of Dimes funds a LOT of research on premature births. Much of the cutting edge technology and treatment used to help Max, is due in part to the March of Dimes. They did the research on the importance of breast milk for babies with NEC. They funded research on the penrose drain that allowed Max's body to heal until he was strong enough for bowel surgery. They are funding even more research now on NEC, which we hope will help pinpoint the cause of this horrible disease, so someday, no parent will have to live through what we did, and no baby will struggle like Max did in those first weeks and months.
We are not normally a family of fundraisers. We make our own donations and I don't like asking friends or family to contribute. (Girl Scout cookies was a first for us) But this is something different and much more special. Troy and I are committed to this
cause. The research and family support from the March of Dimes played a BIG role in Max's treatment and survival and we take that very seriously.We are the lucky ones. Max is alive and bringing joy to our lives everyday. But thousands of babies just like him are born prematurely everyday. They are small and sick and some cannot survive.
I hope that you'll consider donating, even just a few dollars to our team. I'd rather have you donate to the March of Dimes than buy Max a birthday gift. He has everything he needs, and the work the March of Dimes does is truly saving the lives of babies everyday.
Thanks for reading! and listening to my pitch! We'd also LOVE it if any of you would consider joining us to walk with "Team Max" on April 30th. We'll be celebrating Max's first birthday by walking to save other babies lives!!!
Wednesday, January 12, 2011
Sad for the siblings...
I realize some days... just how much Alex and Ella suffered and lost while Max was sick.
Alex and I always read and snuggle at bedtime. We were reading a kids book about Noah's Ark last night and he started asking lots of questions. I answered them and told him he'd learn more about Noah and lots of other Bible stories when he starts school. And he reminded me that he'll also play soccer, and make friends, etc... after he's potty trained. It's been a domino effect for poor Alex. He should have potty trained this past spring, but Max came early. We tried to make it happen before Max came home, but Alex had already been thrown into a tailspin and it was just too much. We wanted him in preschool in the fall, but he didn't make it. He wasn't potty trained, he needed his tonsil surgery, and he flat out told us he wanted to stay home and not go. Alex has regressed this year, and it makes me sad.
He doesn't have any friends his age. None. I want to take him to the babysitter or playgroup, or somewhere... but the germs are rampant and we are still in full on germ warfare here, so again, because of Max's special needs, Alex has to concede. Alex is lonely with Ella in school, and it makes me sad to think that he's not getting the best out of life right now, and I'm powerless to help.
Ella is also still feeling the effects. She became more independent, self-sufficient while Max was in the hospital and she was passed around from friend to friend. Now we're working to keep her attitude in check, she's very dramatic, and she's having trouble in school.
She only makes the cut-off age for kindergarten by 11 days, so she's one of the youngest in her class. She's having trouble with her speech, her writing, her concentration, and she's very frustrated. Last week, she came home in tears because she couldn't make the letter "Q" perfectly and she was ashamed to show Troy her report card. Honestly, it wasn't that bad, but she knows something is wrong and that hurts me to think she's not doing okay. I'd hold her back and give her another year to work on things... , but I think the trauma of starting again next year, in a different class from the friends she has already made would be even worse.
Some days, I feel like I spent so much time at the hospital, trying to keep Max alive, and now, so much time caring for him, that I've let these other two babies down. I'm sad that they are still feeling the effects of Max's early arrival... we all are... but they are little and it's wrong that it hurts them. I wish I could make it all better. Because I'm their mommy and that's what I'm supposed to do.
I'm thankful for everyone who has supported the kids, and continues to do so. To Mrs. Spreckles, Mrs. Pence and Miss Michelle who would welcome Ella back to transitional kindergarten, thank you for loving her so much. To Miss Jessica, who raved about Ella's dancing on Sunday, thank you for building her self- esteem so much! We told her how proud we were of her report card... but doing something well, when school is so tough and feeling that sense of accomplishment is priceless for her. To Laura and Miss Sarah, who have taken Alex under their wings and love him even with his poopy diapers. Thank you for not making him feel like he's failing at this.
We're gonna make it through all this eventually... this is just one week where we're still feeling the effects on several fronts.
Alex and I always read and snuggle at bedtime. We were reading a kids book about Noah's Ark last night and he started asking lots of questions. I answered them and told him he'd learn more about Noah and lots of other Bible stories when he starts school. And he reminded me that he'll also play soccer, and make friends, etc... after he's potty trained. It's been a domino effect for poor Alex. He should have potty trained this past spring, but Max came early. We tried to make it happen before Max came home, but Alex had already been thrown into a tailspin and it was just too much. We wanted him in preschool in the fall, but he didn't make it. He wasn't potty trained, he needed his tonsil surgery, and he flat out told us he wanted to stay home and not go. Alex has regressed this year, and it makes me sad.
He doesn't have any friends his age. None. I want to take him to the babysitter or playgroup, or somewhere... but the germs are rampant and we are still in full on germ warfare here, so again, because of Max's special needs, Alex has to concede. Alex is lonely with Ella in school, and it makes me sad to think that he's not getting the best out of life right now, and I'm powerless to help.
Ella is also still feeling the effects. She became more independent, self-sufficient while Max was in the hospital and she was passed around from friend to friend. Now we're working to keep her attitude in check, she's very dramatic, and she's having trouble in school.
She only makes the cut-off age for kindergarten by 11 days, so she's one of the youngest in her class. She's having trouble with her speech, her writing, her concentration, and she's very frustrated. Last week, she came home in tears because she couldn't make the letter "Q" perfectly and she was ashamed to show Troy her report card. Honestly, it wasn't that bad, but she knows something is wrong and that hurts me to think she's not doing okay. I'd hold her back and give her another year to work on things... , but I think the trauma of starting again next year, in a different class from the friends she has already made would be even worse.
Some days, I feel like I spent so much time at the hospital, trying to keep Max alive, and now, so much time caring for him, that I've let these other two babies down. I'm sad that they are still feeling the effects of Max's early arrival... we all are... but they are little and it's wrong that it hurts them. I wish I could make it all better. Because I'm their mommy and that's what I'm supposed to do.
I'm thankful for everyone who has supported the kids, and continues to do so. To Mrs. Spreckles, Mrs. Pence and Miss Michelle who would welcome Ella back to transitional kindergarten, thank you for loving her so much. To Miss Jessica, who raved about Ella's dancing on Sunday, thank you for building her self- esteem so much! We told her how proud we were of her report card... but doing something well, when school is so tough and feeling that sense of accomplishment is priceless for her. To Laura and Miss Sarah, who have taken Alex under their wings and love him even with his poopy diapers. Thank you for not making him feel like he's failing at this.
We're gonna make it through all this eventually... this is just one week where we're still feeling the effects on several fronts.
Monday, January 10, 2011
Just a couple more...
Because he finally hit his groove this afternoon... when Daddy was shoveling. He made his first real snow angels.. on the driveway... which Troy was trying to shovel... like an Alex speed bump!
And he LOVED the slide Troy made out of the snow he scooped away... he went down, head first and ate more snow that he brought inside I think.
We have another snow day tomorrow. School is cancelled and I'm sure we'll be outside.
Oh, and in this last pictures... that's Max, sitting inside in the warmth of his highchair. At least one of us stayed warm and dry!
And he LOVED the slide Troy made out of the snow he scooped away... he went down, head first and ate more snow that he brought inside I think.
We have another snow day tomorrow. School is cancelled and I'm sure we'll be outside.
Oh, and in this last pictures... that's Max, sitting inside in the warmth of his highchair. At least one of us stayed warm and dry!
Snow Day 2011
Our first real snow this winter. We have about 5 inches now and are expected to get several more inches before it ends sometime tomorrow.
The kids played outside this morning for almost an hour, until I lured them in with trail mix and hot cocoa!
What a great day!!!
The kids played outside this morning for almost an hour, until I lured them in with trail mix and hot cocoa!
What a great day!!!
First "snow angel" of 2011.
Snowball fight!!!!
Snowball fight!!!!
catching snowflakes on her tongue...
Love the trail mix Mommy!
and hot cocoa...
Of course, poor Max was stuck inside. We ventured out during his morning nap time. He's still battling pneumonia and is on his 4th round of antibiotics. More on him in another post...
Ella Rocks!
Ella shook her little booty yesterday, and literally brought us to tears. She had her "Parent 
Show" which is a chance for all the competitive groups to show parents how things are going with the numbers they're working on for competitions this spring. Ella is dancing at Starstruck Performing Arts Center for her third year and this is her second year in the "Mini Company." She's in two dance this year... "Bieber Babies" and "Jesus Loves Me."
Bieber babies is funky, fun and really cute! But don't ask about the costumes for their performance... Daddy is still in denial that she's wearing a halter top and jeggings.
(he doesn't even know what jeggings are)
Jesus Loves Me is her lyrical number and it's so sweet, I literally cry every time I watch her dance.
Both pieces are coming along REALLY well! Especially considering we're just back from Christmas Break and they still have months until competitions start.
Ella danced better yesterday than I have ever seen her. In practice sometimes, I swear she's three beats behind... but from the moment they took the stage yesterday, she was "game on!" She hit her marks, had BEAUTIFUL lines, (just look at the arabesque) and even moved to the next position when some of the other girls were lost.
She's started taking private lessons each week with her teacher,
Miss Jessica. This has really helped Ella to focus on her specific counts, timing and lines and it's built her self esteem so much! Miss Jessica was in the booth, emceeing the performance yesterday, but she caught up with Ella right outside the auditorium during intermission to give her a high five and tell her how GREAT she had done on keeping everyone moving to the correct spots. Ella was beaming and smiled from ear to ear. I think the only thing that made her happier, was seeing Daddy.
Troy had gone to the Chiefs' playoff game with my Dad and they
finished in time for Troy to swing by the high school and see Ella's "Jesus Loves Me." It was such a wonderful finish to a great day for her.
(the videos of her dances are just too large for the blog... but you can see them on my Facebook page.)
Show" which is a chance for all the competitive groups to show parents how things are going with the numbers they're working on for competitions this spring. Ella is dancing at Starstruck Performing Arts Center for her third year and this is her second year in the "Mini Company." She's in two dance this year... "Bieber Babies" and "Jesus Loves Me."Bieber babies is funky, fun and really cute! But don't ask about the costumes for their performance... Daddy is still in denial that she's wearing a halter top and jeggings.
(he doesn't even know what jeggings are)Jesus Loves Me is her lyrical number and it's so sweet, I literally cry every time I watch her dance.
Both pieces are coming along REALLY well! Especially considering we're just back from Christmas Break and they still have months until competitions start.
Ella danced better yesterday than I have ever seen her. In practice sometimes, I swear she's three beats behind... but from the moment they took the stage yesterday, she was "game on!" She hit her marks, had BEAUTIFUL lines, (just look at the arabesque) and even moved to the next position when some of the other girls were lost.
She's started taking private lessons each week with her teacher,
Miss Jessica. This has really helped Ella to focus on her specific counts, timing and lines and it's built her self esteem so much! Miss Jessica was in the booth, emceeing the performance yesterday, but she caught up with Ella right outside the auditorium during intermission to give her a high five and tell her how GREAT she had done on keeping everyone moving to the correct spots. Ella was beaming and smiled from ear to ear. I think the only thing that made her happier, was seeing Daddy.Troy had gone to the Chiefs' playoff game with my Dad and they
finished in time for Troy to swing by the high school and see Ella's "Jesus Loves Me." It was such a wonderful finish to a great day for her.(the videos of her dances are just too large for the blog... but you can see them on my Facebook page.)
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