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T-M-B's Momm…6 |
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red366 |
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TripletMommy…6 |
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THE MCTRIPLETS
McTriplet Mommy |
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| Category: Home | Sun | Mon | Tue | Wed | Thu | Fri | Sat | | | | 1 | | 3 | 4 | 5 | 6 | 7 | 8 | 9 | 10 | 11 | 12 | 13 | 14 | 15 | 16 | 17 | 18 | 19 | 20 | 21 | 22 | 23 | 24 | 25 | 26 | 27 | 28 | 29 | 30 |
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DOCTOR'S VISIT
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Dec 05, 2007 07:10pm (EST)
Well - today was Isaac's much anticipated visit with endocrinology...... okay - this has nothing to do with the rest of the post but it's too funny not to share.... today I was watching TV when my dad called. Lorne wanted to talk and said, "Hi, Grandpa Mike - I'm watching Rachel Ray!" Yeah - mom of the year right here - my kid recognizes Rachel Ray. I told my dad - at least it wasn't, "Look - it's Howard Stern!" or, "Look it's Jerry Springer!" Rachel Ray I think is okay.  Anyway - just had to share.... so Isaac's appointment was "okay". Yeah - just okay. I'm not sure what I was *hoping* to gain from it.... maybe a "Sure - he's a bit small - but smart and perfect, there is absolutely no reason for follow up!" - but I'm sure you're guessing that's not what happened.
He was SO good today - even when it is a trip to the doctor - the boys are thrilled to have one-on-one time. Makes me sad that it happens so infrequently that even a trip to the doctor is fun! The nurse and both doctors commented on how adorable he was and what a talker he is!!
The consensus today was basically that Isaac is tiny (duh). Our next step is a test (three hours - fun!) to test his growth hormone level as well as several blood draws to test for various things including food allergies and gluten intolerance. She was really preparing me for the possibility or growth hormone therapy. She really seemed like that was the route we were going to go. GHT is shots - I knew that. What I didn't know is it is shots nearly every day (6/7 days a week). Not just that - it is shots nearly every day from now - until puberty. Ten years or so of giving my kid shots. As you can imagine - that does not sound too exciting. The children's hospital is great and Scott and I are *so* pro-doctor. Neither of us have an "MD" behind our name and we really trust the doctors' opinions. But I've also learned to be an advocate for MY child and I will research this extensively before we go this route. When I started asking about waiting - she said some parents choose to do that, even put off the testing since it is hard for a 3 year old, that basically the earlier the intervention the better - but that the opportunity isn't "lost" until much closer to puberty.
What Scott and I have basically decided is that we will do the testing now. We bring him in one morning (has to be fasting) and they do several blood draws and a 3 hour growth hormone test with an IV in (not sure how it works and why it takes three hours.... anyone???). If there is a growth hormone defiency - that seems pretty cut and dry. He needs supplements. That still doesn't mean we have to start right away - even if we start at age 5 or 6 we get a big advantage over starting at age 9 or 10.
If he has a "normal" GH level - she said growth hormone therapy may still be an option because of his size, growth pattern etc. - but that seems way less cut and dry to us as parents. We'll cross that bridge if we have to.
I'm not even sure what to hope for in the testing. A significant growth hormone difiency would make the "decision" part way easier - but would mean that he would basically "definitely" need therapy. A more normal level would make the decision part harder - but may mean if we "wait it out" - he will be "okay" in the long run even withOUT intervention....
AHH!!! Please e-mail me ASAP if you have perfected that time machine you've been working on! If I knew for sure that this was the answer and the best thing for him - I'd certainly endure giving him shots six days a week and it would be easier for ME to rationalize putting him through all of that. If I KNEW that he was NOT going to grow well on his own and that the GH would help - I would do it. I just hate having to make this big of a decision without knowing what the future will bring. But, again - I think we're probably talking a few years in the future. We'll see what happens. My little brother is nearly six feet tall and totally "normal" (hate that word...) physically - pretty good looking if I do say so myself! And they discussed all of this with my parents as he was SO incredibly small in childhood. Even freshman AND sophomore year of high school he wrestled in the 89 pound weight class and ate like a total pig as he was so small that he never had to worry about cutting weight. But - of course - he didn't have the history Isaac does.... so that's different, too. But maybe not?
Help! Opinions anyone? Anyone researched this? Side effects (besides of course the horror or my poor sweet little boy receive shots for ten years)?? Is this related to his prematurity? I have a few months to research before the testing - then a few weeks after that, I'm sure, before we get the results and have to make any decisions. I'm totally lost. To make matters much more interesting - our current insurance only runs - for sure - through April when Scott graduates from school. Wonderful.
Another aside..... I picked up Isaac at 10:00 this morning from preschool so Lorne had to ride the bus home "alone". I was very nervous how he would react, made sure to "warn" his teacher and the bus driver and driver's aide.... when Scott got him off the bus the driver told him Lorne practically could have cared less! I also got to see them for a few minutes together in school - they were both in library when I got there which is right in front where you walk in. They were sitting right next to each other holding hands. I'm not even kidding you. Now - some of it was that with their visual considerations - they typically get the "up front" seats in most classes... but to see them there together was SO cute!!
Okay - enough rambling. Sullivan is screaming for me (Daddy let him nap for half an hour today so he is having a terrible bedtime!!!). Better run.
Take care,
Kara
Christmas card final
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Posted by McTriplet Mommy | Comments: (12) | Permalink
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BABY'S FIRST CHRISTMAS
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Dec 04, 2007 06:17pm (EST)
You know the one.... the bibs and ornaments and shirts you will buy for Baby... the gifts you have ready... the memories you will make... the life-long traditions you will start... the family celebrations where you pass around your newborn and everyone "Ooohs!" and "Ahhhhs!" at the sweet thing while you enjoy the time "off"..... the "Baby's first stocking" that Santa fills with pacifiers and socks and things.... the big ideas you have about how things will be *perfect*.
Of course - only some parents get to do that.
Some parents spend Baby's First Christmas mourning the child they have lost (thank God I can only imagine how painful that would be).
Some parents visit their brand new babies in the hospital and brings gifts there.
Some parents spend the evening at home with their sick, sick babies protecting them from those nasty outside germs that could wreak havoc on immature immune systems.
Our experience on "Baby's First Christmas" is certainly not what we had in mind. We had one baby in the NICU - not knowing when he may make it home - and two sick little preemies at home.
.....After we finish each recording on the camcorder - I immediately transfer it to DVD in case something happens to the tape. This time - I had to go get the old Family DVDs in order to add the recent memories to an older DVD - and we ended up watching quite a lot of old "footage" of the boys.
Isaac and Sullivan both spent 77 days in the NICU and came home two days before Christmas. They brought monitors, were on oxygen, reflux meds, supplements, breathing treatments and needing to be protected from the "outside world" in order to stay healthy... but they were HOME for the holidays. We didn't do the "family rounds" as we usually do. We spent the night at home with just the four of us (though most of the grandparents visited and brought presents in few days following). Not what we would have imagined when I got pregnant - but a very nice time.
Lorne however was still in the hospital. One thing that stuck out most in the video - and nearly made me cry - was that I brought his first stocking up to him. I told him, "Santa was going to visit you here - but your stocking was at home so I told him I'd bring it to you."
I felt horrible. I felt guilty for spending time at the hospital when I could have been at home celebrating with my other two boys - and I felt terrible when I left that Lorne was spending Christmas "alone" in the sterile hospital. We were so very thankful that we had THREE boys with whom to celebrate Christmas that year - but the situation truly seemed like a "lose/lose" situation in that we felt bad no matter what we did.
This year is going to be awesome. Those things are "just" memories and - as hard as they were - I don't think on Christmas Eve while we're making Santa's cookies or Christmas morning while we're opening gifts - we will even look back at "what was" - I am just so excited to see those adorable, ornery, mischevious little faces.
Our next LIVE CHAT is going to be on the holidays... while in the NICU, how to deal with them after losing a child, and traditions to share. Please join us! It will be December 18th at 4:00 p.m. Eastern time. (the boys have recently given up naps so I will *try* to be there - who knows if they'll "let" me!!! )
I&S_coming_home
lorne_first_Christmas
Christmas_2005
boys snowflakes 2006
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Posted by McTriplet Mommy | Comments: (11) | Permalink
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ISAAC SINGS THE A, B, SEATS
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Dec 03, 2007 05:40pm (EST)
This is my smartie little guy. My 26 weeker who we didn't know if he would survive. My teeny, tiny little bit who I am taking to endocrinology (Wednesday!!!) because of his growth. My little boy who cruised the furniture for nearly six months before being brave enough to let go. My poor little one who has had a dozen eye surgeries and is legally blind. My sweet little peanut who has been in nearly every therapy imaginable because he's been so delayed.
The giggle at the end is totally worth waiting for.
http://youtube.com/watch?v=YcsTfkq6HL4
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Posted by McTriplet Mommy | Comments: (16) | Permalink
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LOOSE ENDS
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Nov 28, 2007 07:32pm (EST)
I feel like I have a lot "out there" that I need to update.... here are a few...
Sorry for any of you I "fooled" with the bedtime post. It wasn't my intention - it was just for humor's sake. Sullivan got his staples taken out Monday and was SUPER brave. He was great through it all - I can't even imagine had it been one of the other two how they would have acted!! If anyone is keeping score - Isaac was the *perp* - my sweet, little, everyone's friend Isaac. Guess he had just had enough!! Honestly - my kids hit each other a hundred times a day with a hundred different things... this one just happened to hit *just right*.
Isaac is potty trained! Seriously - waiting until they are READY is the way to go. Both Isaac and Sullivan were basically trained within a week of starting - because they were both so ready when we started. I have no intentions of starting Lorne for quite a while - but he'll get there. ONE in diapers is a dream!!
Lorne got a new feeding pump about a month ago that he can carry around in a backpack - he is SO proud of it! Seriously -I almost wonder if it was NOT the right way to go - as he is SO excited about his pump! He can now eat while playing, walking, outside... way different than his other one where he was strapped to his booster seat five times a day. It has been a Godsend. Also - his eating is slowwwwwwwwwwly getting there. He will take a bite at almost each meal and chew and swallow it and drinks an ounce or so a day - it takes sometimes half an hour (or more!) to get that ONE bite down but what a HUGE improvement from eating NOTHING. Have to keep telling myself that. Again - he WILL get there. For now - this new Infinity pump has made a world of difference in ALL of our lives as we work towards oral feedings.
Let's see... what else.... Oh! School. They still LOVE it. Not only do they all love their schools - I think they truly love having their "own" classes. It is great. I guess Lorne and Isaac get to do some things together (PT, O&M, recess) but are SO independent. I guess Isaac used to wait for Lorne to get off the bus and they would both hold hands and walk down the hall together (their classes are across from eachother) but now - Isaac doesn't even wait! He's so excited to get to his class that he gets off the bus and makes a b-line for class. And Lorne does great getting to his class on his own. The principal walked by while I was there with Sullivan for speech the other day and she stopped to tell me how great both of my boys are. How sweet they are, how they make her smile... Isaac is a little doll. It is hard NOT to love Isaac. But Lorne is a bit more, um, extreme. To hear her stress how BOTH of my boys make her day... made MY day!!
Oh - and a few weeks ago at church the boys were asked to name their "best friend" to write on a heart for an exercise they were doing in Sunday School. Lorne's heart said "Raymond" and we don't even know anyone named Raymond. They all three have a wild imagination so I thought maybe he just made it up - I asked him about it, "Who is this? Who is your best friend?" "Mrs. Raymond!!" - his preschool teacher. I nearly cried. Guess he's liking school!
Sullivan likes having his own school "no brothers." I asked him about it and he told me it makes him happy to go to "his church school" without his brothers - though it is so clear when they "reunite" at the end of the day that they are happy to see each other. The bus is also going great. I am SO proud of them - I was so worried about how this would go. The *ideal* situation - logistically - would be all three at the same school, obviously. But second to that - this could not possibly be going any better.
Isaac sees endocrinology to discuss his growth (or lack there-of) next week. I'm very nervous!!
It's beginning to look a lot like Christmas around here! I totally get it now. I know why my parents went all out, why they were so dedicated to making everything "perfect" for us kids... I get it. My kids are SO COOL this year. They had fun decorating the tree, they can tell you that Christmas is Baby Jesus' birthday, they recognize Santa on paper and in person. As obnoxious and stressful and absolutely naughty these children can be (trust me!!!) - this is pretty cool.
Mom and I went shopping on "Black Friday". It was crazy. FUN - but totally crazy. Never would have done it "alone" - but it was fun to spend the day with my mom, even if some of that day was in lines and waiting for our crazy deals! Got ALL of my Christmas shopping done before 9:00 a.m. Friday - so THAT was certainly worth it. I'm excited for the boys to open their presents this year - just a few little things and stockings - but, again, they "get it".
Geez - that's all I can think of right now! We've been busy here - I'll admit I've been super, super stressed with these *wonderful* children - day in and day out. Scott's schedule only allows him to be home an hour - at most - of waking time during the day. So it's basically ME 24/7. But we're doing it. Wow - I'm sorry for all of you going through the "terrible twos"... but three is WAY worse. 
Take care, all! Hope everyone is staying happy and healthy! The boys' Christmas pageant at school is Sunday - I can't wait! They are so cute singing their little songs.
Kara
11-25-07 Santa
11-22-07 Thanksgiving
decorating the three 1
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Posted by McTriplet Mommy | Comments: (18) | Permalink
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WHEW!
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Nov 11, 2007 02:52pm (EST)
My goodness - busy, busy, busy here! Where to start... Sullivan's appointment with the surgeon went okay - the dr said both testicles are "timid" and do retract - but since he can manually pull them down, no treatment is needed at this time. He said since they retract so easily - it is likely he will need surgical treatment in the future - but we will just watch and cross that bridge when it comes.
We visited the Every Baby Has a Story bus last week as well. It was pretty cool! The boys had a great time playing with all of the toys and, I'll be honest - it was neat to record the boys' story on video! Anyone who has also gone (Jaclyn???) knows how long it takes me to get the link to my video? We went last Monday but I still haven't gotten it yet... anyway - it was neat to meet some other parents and the boys are always a hit. "Triplets!! Wow - I've never seen TRIPLETS in 'real life' before!!" Luckily - as annoying as these comments sometimes get - my children just think that *everyone* in the whole world is excited to see THEM. So - that's fine.
Last Thursday was the Bikers for Babies Thank You party. It was so funny, I started my speech with some thing like, "I had this great speech prepared for Bikers and didn't say anything I wanted to because the boys totally upstaged me.... so I didn't really even prepare anything to say tonight - knowing that the boys would show me up!" I'm not even kidding you that I didn't even get that entire sentence out before the boys had grabbed the mic and done just that! It was fun!! The boys got to hand out awards to all of the Grand Donors and everyone thought they were SO cute! Wild - my mom and I left literally drenched in sweat after chasing them - but adorable.
Thank you, thank you, thank you all for your responses on my last blog. You don't know (okay - some of you do know!) how much you all mean to me. How much it means to me to have so many people who *really* - really and truly - understand me and how I'm thinking. And to tell me it's okay to feel that way! You guys are great.
Here are a few pictures of our adventures of our past few weeks. That picture of the boys on the red couch was taken within minutes of arriving at the Bikers party... I mean, really.
Oh my gosh - almost forgot! Isaac has started going peepee in the big boy potty! I'm hoping he continues - he's in underwear at home and pull-ups when we go out now. I told him no more diapers - so he better learn to keep his underpants dry soon! Very exciting!
bouncing on couch
ed hale
outside bus
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Posted by McTriplet Mommy | Comments: (13) | Permalink
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THE BLAHS
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Nov 06, 2007 12:33pm (EST)
Anyone else have a case of the blahs? I'm not really sure what's wrong with me - just... blah. Stuck in a rut. I think I'm too busy - or not busy enough? Who knows. I've put on tons of weight since this summer and I'm so upset about it - yet when I'm upset, I eat, and I know that has contributed to my weight gain. Makes me very mad! Blah.
The children... oh, the children. I love and adore them - but I'm not sure I'm cut out for this stay-at-home mom gig. I don't think daycare is an option as Lorne's sensory issues are still SO appearant and I'm sure no one would take him with his feeding tube. Plus - I don't think I can "afford" to work! That is - to pay childcare so I can work. I just feel like I quit my job to stay home with the boys (which I *definitely* wanted to do when I had kids) and now I'm "stuck." I don't even know what I want to do "when I grow up" or what kind of job I'd like if I did choose to go back. Blah.
I'm trying so hard not to wish time away. These will be our only children. I will never again have a baby or a two year old child. Never. I don't want to wish their childhood away - and regret it when they're older. But they are SO wild ALL of the time. I mean - exhausting and extremely stressful and naughty. Honestly - probably just typical boys stuff - but times three. And put on top of that the medical stuff, appointments, Lorne's feeding, IEPs, therapies... I'm just worn out. Blah.
I don't know - I was talking to a friend this morning and actually aknowledged feeling this way. I feel so vulnerable! We had our first Family Teams committee meeting last night for March for Babies and one of the staffers called me "Super Mom" - it almost made me cringe because that is a lot to live up to! She meant it as a compliment - like she didn't know how I did it all - but sometimes, I feel like I'm just barely holding it together and others would totally think less of me if I "couldn't" ("didn't") do it "all"... with grace. Blah.
<sigh> Sorry to vent - but I am so thankful for this safe place where I can come share my *real* feelings and not be judged. My husband is SO absolutely wonderful and amazing - and I feel like *he* has more to be upset and stressed about than I do so I hate to sometimes "burden" him with my feelings. SO I've come to all of you. Thanks for letting me get it out!!
Also - our next live chat is Thursday, November 8th at 3:30 Eastern. We'll be talking about RSV, protecting our children during these winter months, cabin fever during lock down and.... wait for it... Dr. Berns will be our guest speaker! I will be at the dr with Sullivan so I will miss it - but look forward to reading it later!
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Posted by McTriplet Mommy | Comments: (19) | Permalink
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TERRIBLE MORNING - GREAT NEWS
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Nov 01, 2007 03:23pm (EST)
So - we had to be at the hospital this morning for the boys' retinal exams under anesthesia (EUAs). I hate these things... not only are retina exams horrible and typically yield bad news - putting your kid under anesthesia is no picnic.
Last year, I was very worried about putting the boys "under" as Lorne had only been off of O2 for less than a month. I was "completely unconcerned" (okay - less concerned) about the actual exam results. Last year - the results were okay... not great, but okay. The anesthesia (for both) went off without a hitch however.
This morning we had to be at the hospital at 7:15 (after a last minute appointment yesterday with anesthesia to make sure they were healthy enough for "surgery" - but I'm over that). We waited for what seems like years (I think it was almost two hours) and they finally came to get Lorne. We were given the information last time that we "could request" (in fact - she suggested it) that the boys have a "calming medication" (Darvocet) in order to make the separation/administration of anesthesia/intubation, etc. much less traumatic for everyone. These boys are SO "doctored out" and we thought that would be a great idea.
So - the boys had their meds and they went with the nurses with no problem. We had to wait a little longer than I would have liked for them to come get Isaac but that was fine. The retina specialist came to surgery recovery to tell us how great the boys' eyes looked. Anatomically - totally good. The pressures were "okay" (they are at increased risk for glaucoma so high pressure could be a problem) - Isaac's left eye a bit on the high side - but not cause for alarm or treatment. Both boys were already in recovery at this point and we were so relieved with the results.
Then the recovery nurse called. Said Lorne woke up absolutely hysterical, couldn't be calmed, they were worried about his safety and wanted to know about his baseline behavior at home. I told them that he was a WILD man at home. I wasn't quite sure what they were getting at. She said great, she'd call us to come up soon. Called back a few minutes later - they had to give Lorne some medication because he was SO upset (when we finally talked to them later she said he was "glassy eyed and unresponsive" and called it "emergence delirium" as per the anesthesiologist) - but the medication had caused him to be SO drowsy that his oxygenation was suffering and they had to put him on oxygen to maintain sats just above 90. I totally lost it. He had been OFF of oxygen and healthy for over a year. They said it was "no big deal" and, honestly, with Isaac - I wouldn't have really thought oxygen after anesthesia was THAT big of a deal - thinking he would come off soon. But I was SO worried about poor Lorne who had had so many respiratory problems up until this point already.
Fast forward another hour when we finally got to go up to recovery. Lorne was absolutely, totally, fast "asleep" but we got to go up and hold him. Isaac then came in and she informed us that he had to be intubated (the exam only takes 10-15 minutes so they were hoping to just use a mask) and when they extubated him - he had tons of nasty secretions and sounded terrible - so he had been given oxygen and breathing treatments as well.
I mean really - Lorne on oxygen for less than two hours and Isaac on oxygen for a few minutes and one breathing treatment... and I'm THIS upset??!! But I had totally let my guard down - I was prepared for bad reports on their retinas - I was not in ANY way prepared to face problems with the anesthesia. We are all now home and fine - Mommy is just emotionally drained!
So - the boys' eyes all look good! Retinas attached, everything looks healthy, pressures okay... and this was, by far, one of the worst eye exams ever!.
I'm off to my triplet dinner tonight. I need it!
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Posted by McTriplet Mommy | Comments: (13) | Permalink
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