"Honey," she said, tapping him on arm to wake him. "It's time."
It's finally my turn to say those words!
We're off to the hospital... our last day as commuter parents.
Max will be home within hours!
Mr. Nakedface
Now that things are moving, they're going along at the speed of... at the speed of... well, something really fast!
Our last few days have been like this:
Wednesday, July 9: Max's nurse says "If you guys are gone when I get back from vacation..." This is the first time a medical professional has made a specific mention of him coming home.
Thursday, July 10: His nuclear med scans come back clear. "Would you guys be OK with taking him home on oxygen and a monitor? Maybe he could come home end of next week."
Friday, July 11: "Let's take that feeding tube out!" and then "Let's see how he does without that O2 cannula!" (Hence the photos above, of Mr. Nakedface, for the first time ever!)
Sunday, July 12: "I've heard rumors of Tuesday for homecoming... since he's doing so good off the oxygen! Oh yeah, he doesn't need to come on oxygen, by the way!"
to today:
Monday, July 14: "He doesn't need oxygen, he doesn't need a monitor, he passed his car seat test with flying colors. How's Wednesday?"
Yup.
Our Max is coming home on WEDNESDAY!
It's official!
We're going to "room in" tonight and start our discharge training; giving him his meds and such. Rooming in is us staying in our own room, off the NICU, for the night, just our family, like a "practice run" with the nurses available if needed.
So we room in tonight, finish our training tomorrow night and then arrive 9am on Wednesday morning for final discharge stuff and then we GO HOME!
That's all there is! We'll be home with our wireless, totally portable baby, for once and for all!
Jamie and I were totally blown away by the number of comments on my previous post... I knew there were people out there reading and praying for and thinking about us and Max, but I'm speechless (and if you know me...)
Thank you so, so much for everything.
I'll try not to get too caught up in baby gazing at home and post some pics of him where he belongs!
All our love,
Jamie & Lizz
I can't decide how to title this post.
There is so much stuff swirling around in my mind and heart, I can't come up with the right words to say what I need to say, so I'll just spit it out.
Max is coming home!
We got the results of his nuclear imaging testing yesterday and he is *not* aspirating formula. That is not causing the cough. It's probably some chronic lung damage simply caused by his prematurity, and he'll most likely outgrow it eventually.
We started him on fortified feeds yesterday (22 calorie instead of 20) so hopefully the feeding tube comes out tomorrow.
We started trying to wean him off the oxygen as well. The flow was down to .5 L yesterday, and they'll keep dropping it slowly over the weekend in the hopes that we can be off it totally. We're willing and able to bring him home on oxygen, but it's obviously not the ideal set-up.
He will be coming home on a monitor to track his heartrate and such... I've heard mixed reviews of the PITA-ness of this, but again, it's worth it to have him where he belongs.. with us.
We start "discharge planning" on Monday and will room-in (spend the night with him at the hospital, in our own room, just the 3 of us, for practice) some time next week as well. We're bringing his car seat in over the weekend so the carseat test can be done as soon as it's ordered, and we're switching him to the Playtex bottles he'll get at home, so we can be sure they work for him. If all goes according to plan, he should be home by next weekend.
It's been a long 12 weeks... will be 13 if he comes home on Thursday, and I still can't believe I'm typing this! As is true for everything else in the NICU, this is all part of the rollercoaster ride we've been on. Things could change, and he might *not* come home, but I can't dwell on that. I'm looking towards next weekend, when we can finally be home as a family!
I realized something last night, as I was unable to sleep for the adrenaline coursing through me. There's nothing else I'm waiting for in my life. My whole life I waited to see Paris, I waited to marry the man of my dreams, I waited for a baby, and then I waited for that baby to come home. I tried to explain this to Jamie and he just laughed and said "Sorry for making all your dreams come true!" and really, he's right!
I still have my list of 100 things to do before I die, but really, all the big ones are done.
We've been parents for 3 months, but we still have no idea what we're in for. I guess it's a good thing that we're aware that we're clueless, but it's a thrilling place to be.
And because no post is complete without a photo, check out Max's crib mattress! It was $20 more than we had originally budgeted, but it's got his NAME on it!
And now, if you can please do me a favor (assuming you've read this far!) can you please leave a comment, even if you've never left one before? Just a first name and a location if you want... I want to document for Max all the people who have been rooting for him... family, friends and strangers. Thanks.
Max is coming home!
We got the results of his nuclear imaging testing yesterday and he is *not* aspirating formula. That is not causing the cough. It's probably some chronic lung damage simply caused by his prematurity, and he'll most likely outgrow it eventually.
We started him on fortified feeds yesterday (22 calorie instead of 20) so hopefully the feeding tube comes out tomorrow.
We started trying to wean him off the oxygen as well. The flow was down to .5 L yesterday, and they'll keep dropping it slowly over the weekend in the hopes that we can be off it totally. We're willing and able to bring him home on oxygen, but it's obviously not the ideal set-up.
He will be coming home on a monitor to track his heartrate and such... I've heard mixed reviews of the PITA-ness of this, but again, it's worth it to have him where he belongs.. with us.
We start "discharge planning" on Monday and will room-in (spend the night with him at the hospital, in our own room, just the 3 of us, for practice) some time next week as well. We're bringing his car seat in over the weekend so the carseat test can be done as soon as it's ordered, and we're switching him to the Playtex bottles he'll get at home, so we can be sure they work for him. If all goes according to plan, he should be home by next weekend.
It's been a long 12 weeks... will be 13 if he comes home on Thursday, and I still can't believe I'm typing this! As is true for everything else in the NICU, this is all part of the rollercoaster ride we've been on. Things could change, and he might *not* come home, but I can't dwell on that. I'm looking towards next weekend, when we can finally be home as a family!
I realized something last night, as I was unable to sleep for the adrenaline coursing through me. There's nothing else I'm waiting for in my life. My whole life I waited to see Paris, I waited to marry the man of my dreams, I waited for a baby, and then I waited for that baby to come home. I tried to explain this to Jamie and he just laughed and said "Sorry for making all your dreams come true!" and really, he's right!
I still have my list of 100 things to do before I die, but really, all the big ones are done.
We've been parents for 3 months, but we still have no idea what we're in for. I guess it's a good thing that we're aware that we're clueless, but it's a thrilling place to be.
And because no post is complete without a photo, check out Max's crib mattress! It was $20 more than we had originally budgeted, but it's got his NAME on it!And now, if you can please do me a favor (assuming you've read this far!) can you please leave a comment, even if you've never left one before? Just a first name and a location if you want... I want to document for Max all the people who have been rooting for him... family, friends and strangers. Thanks.
Thursday #13
The boy wasn't feeling particularly photogenic this evening... it was this or a screaming his head off picture, so I picked this one!
Breakin' the Rules!
Almost 12 weeks in the making, the first photos of the cousins together!
Faith has known about Max for a long time... she draws him pictures, his photo is in her "Who Loves Baby?" book, she talks about him a lot, but until last night, she had never met him.
Thanks to a fabulous accomplice who was willing to bend the rules for us, Faith was able to come into the NICU last night to meet Max for the very first time!
She was a little intimidated (who wouldn't be, with all those tubes and wires and weird sounds?) but she sat with him on my lap and started warming up a bit after a little time.
And since I'm on a roll with the good news updates, how about these? Max's feedings are still going great; he's been chugging along like a champ, and he now takes almost ALL of his feeds from the bottle. The doctor told me yesterday that they want to try upping his calories this week. The formula he is/has been on is 20 calories per oz, and they're going to try bumping it up to 22. If he's on a higher calorie mix, it becomes less important that he finish every drop of every feed, since he's getting more from less (make sense?) When it's less important that he finish every drop, gavage feedings are unnecessary, so... THE FEEDING TUBE CAN COME OUT! Every wire or tube that Max gets rid of is cause for celebration, and this one is no exception!
He had an eye exam yesterday, and I'm thrilled to report that his eyes are improving! Being on elevated levels of oxygen actually contributes to the ROP, and is a big part of why his being on room air (21% oxygen) is so great... it gives his eyes a chance to heal! He's still technically "Stage 2 ROP" but better overall, so we should be downgraded (upgraded?) to Stage 1 soon! Stage 1 can be outgrown, so the only thing messing with Max's vision will be genetics. (Sorry, kid)
Sort of a bitterwseet moment for us yesterday... as I was getting ready to leave after Max's 2:30 feeding, Kelly said something that immediately brought tears to my eyes. (I don't think I've talked about Kelly nearly enough on this blog... she's Max's primary nurse and has taken care of him on day shift since he was born; she's been his angel and my savior. She was the first one to ask if I wanted to hold him, who taught me how to take his temperature, she's amazing and we'll miss her tons. I offered to have her move in with us, since Max likes her so much, but she has a husband and kids and stuff, so she said no. *sigh* It was worth a shot! ;-))
So anyway, as I was getting ready to leave, Kelly said to me "Well, if you guys are gone before I come back..." (I think she said something after that, but I wasn't listening.) Kelly's on vacation until July 18th... if he's GONE before she comes BACK? This was the first time a medical person had specifically said anything even close to this almost being over. The first time that someone in scrubs had acknowledged that his homecoming day is looming ever closer. *gasp* Jamie and I will be in charge FULL TIME!
There are so many moments like that one, these days, I almost can't keep track of them all. A random nurse mentioning how good Max looks, like he's ready to go home... another one mentioning that she's happy to see him turning this final corner to get out... it's like the general consensus is that Max is now a short-timer who will be home soon!
He has his nuclear medicine testing today, actually, as I type this! They're going to feed him some sort of nuclear contrast material and then do a series of scans to see if the aspiration reflux theory is a good one. If things go the way they have been, nothing will look abnormal and they'll be stumped as to why he's coughing, and then the cough will go away and he'll be fine. It seems like the more dire the potential diagnosis, the faster Max overcomes it, so we'll see! I have to skip feeding him during work today, since with the testing his schedule is all thrown off, but I'll be there at 5:30 to give him dinner, so I'm hoping for an update then. I'll post as soon as I hear anything!
Happy Un-Birthday to Max!
Today, Max is zero.
If all had gone "according to plan" I might be in labor right now, or home with my day or so old son, or sitting at home bemoaning being past-due and uncomfortable in the heat.
Instead, I woke up early to deliver cupcakes to the nurses who have been caring for our boy for almost 3 months. I stopped by to give him a kiss and a cuddle and make sure everyone knows that today is Max's due date.
Today, the weight of the last 12 weeks is really weighing on me. Until now, I didn't realize just how early he was... so much has happened since he was born!
We're sad he isn't home with us yet, but know that he'll join us soon enough... for GOOD!
If all had gone "according to plan" I might be in labor right now, or home with my day or so old son, or sitting at home bemoaning being past-due and uncomfortable in the heat.
Instead, I woke up early to deliver cupcakes to the nurses who have been caring for our boy for almost 3 months. I stopped by to give him a kiss and a cuddle and make sure everyone knows that today is Max's due date.
Today, the weight of the last 12 weeks is really weighing on me. Until now, I didn't realize just how early he was... so much has happened since he was born!
We're sad he isn't home with us yet, but know that he'll join us soon enough... for GOOD!
Happy Birthday, Me!
As I'm pretty sure anyone who reads my blog knows, yesterday was my birthday.
It sucked that Jamie had to work (boo!) but my family stepped up to keep me entertained until he could join us in the afternoon.
We went to the parade, just like when Katie and I were kids, and then headed over to Pleasant Hill for a "Family Fun in the Park" thing... ate some BBQ, Faith and Katie went down a gigantic inflatable slide, we wandered around... it was nice!
We then headed back to Katie's to hang out and have dinner (Grilled steaks, potato salad and corn on the cob... All-American Barbecue dinner, with a special slice of tiramisu for me!) and then off to visit Max... he wasn't thrilled to have me take him out from under the lights so I could cuddle him a bit, but we made do and then we all (minus Nana and Papa... they pooped out early) headed to Concord for the fireworks.
Jason came up with a great spot at the mall to watch, and we all piled in the back of the Explorer, ate Dum Dums and Smarties and watched the show... Faith was a great sport and we had a blast (and were out of there with next to no traffic!)
Not to sound like a brat or anything, but I was totally spoiled this year... Jamie got me 2 tickets to see MADONNA in concert! It's on my list of 100 things to do before I die, so I'm way excited and Katie is equally thrilled to be my date come November. My parents gave me/us money to buy a new rug for the living room, and my dad gave me a gorgeous giraffe print wallet from Dooney and Burke.
The craziest thing (maybe) I got is from Grammy (although I haven't told her yet!)/Jamie/Max... a woodturning lathe! It's something that has fascinated me for a long, long time and I was so excited when Jamie said he'd be willing to share "his" garage with me to play! As soon as we got it set up I had to make something, so I turned this little bud vase... I gave it to my mom, but I need to remind her that I want it back if she decides she's tired of it. (*ahem*) I'm really excited to play with my new toy... I've got all sorts of ideas running rampant in my brain! My sis and Jas gave me a gift certificate for Borders, so I'll be buying a turning book to learn more about this new hobby... a word of warning to my family: Expect lots of pens and little vases for Christmas! :-)
When we went to see Max yesterday, we were thrilled to discover that he had been sustaining on room air (21% oxygen) and a regular flow canula... smaller tubes! Yay! So he's been maintaining his full 60mL feeds with very little concern. He took all but 5mL from Kelly this morning and other than a spit-up episode with me this afternoon, he has been finishing his bottles... yet another step on the road that leads home! He'll get a chest x-ray and see a pulmonologist this week to see if we can't figure out exactly what's going on with the cough.
I snapped this pic of him today (you can see the smaller canula on his face) because I love this outfit that Tania sent, and I don't know how much longer it's going to fit! It's barely able to snap over his diaper, he's growing so much! We promised Max that people wouldn't laugh, and that he looks very rugged and masculine in this ensemble, so if you happen to talk to him, please don't say otherwise! ;-)
That's all I've got for the holiday weekend... we'll be back on Thursday as always, unless something exciting happens between now and then! We love you all and thanks for thinking of us!
It sucked that Jamie had to work (boo!) but my family stepped up to keep me entertained until he could join us in the afternoon.
We went to the parade, just like when Katie and I were kids, and then headed over to Pleasant Hill for a "Family Fun in the Park" thing... ate some BBQ, Faith and Katie went down a gigantic inflatable slide, we wandered around... it was nice!
We then headed back to Katie's to hang out and have dinner (Grilled steaks, potato salad and corn on the cob... All-American Barbecue dinner, with a special slice of tiramisu for me!) and then off to visit Max... he wasn't thrilled to have me take him out from under the lights so I could cuddle him a bit, but we made do and then we all (minus Nana and Papa... they pooped out early) headed to Concord for the fireworks.
Jason came up with a great spot at the mall to watch, and we all piled in the back of the Explorer, ate Dum Dums and Smarties and watched the show... Faith was a great sport and we had a blast (and were out of there with next to no traffic!)
Not to sound like a brat or anything, but I was totally spoiled this year... Jamie got me 2 tickets to see MADONNA in concert! It's on my list of 100 things to do before I die, so I'm way excited and Katie is equally thrilled to be my date come November. My parents gave me/us money to buy a new rug for the living room, and my dad gave me a gorgeous giraffe print wallet from Dooney and Burke.The craziest thing (maybe) I got is from Grammy (although I haven't told her yet!)/Jamie/Max... a woodturning lathe! It's something that has fascinated me for a long, long time and I was so excited when Jamie said he'd be willing to share "his" garage with me to play! As soon as we got it set up I had to make something, so I turned this little bud vase... I gave it to my mom, but I need to remind her that I want it back if she decides she's tired of it. (*ahem*) I'm really excited to play with my new toy... I've got all sorts of ideas running rampant in my brain! My sis and Jas gave me a gift certificate for Borders, so I'll be buying a turning book to learn more about this new hobby... a word of warning to my family: Expect lots of pens and little vases for Christmas! :-)
When we went to see Max yesterday, we were thrilled to discover that he had been sustaining on room air (21% oxygen) and a regular flow canula... smaller tubes! Yay! So he's been maintaining his full 60mL feeds with very little concern. He took all but 5mL from Kelly this morning and other than a spit-up episode with me this afternoon, he has been finishing his bottles... yet another step on the road that leads home! He'll get a chest x-ray and see a pulmonologist this week to see if we can't figure out exactly what's going on with the cough.
I snapped this pic of him today (you can see the smaller canula on his face) because I love this outfit that Tania sent, and I don't know how much longer it's going to fit! It's barely able to snap over his diaper, he's growing so much! We promised Max that people wouldn't laugh, and that he looks very rugged and masculine in this ensemble, so if you happen to talk to him, please don't say otherwise! ;-)That's all I've got for the holiday weekend... we'll be back on Thursday as always, unless something exciting happens between now and then! We love you all and thanks for thinking of us!
Thursday #12
Jamie and I disagreed on which photo should be the official Thursday #12 pic, so I'm posting both of our choices.
I'll let you decide who preferred which one. ;-)
The booty pic is because Max has a terrible diaper rash that just wasn't getting better; he's been spending a few hours of each shift under the heat lamps like this, to help it dry out and heal... he loves mooning the world and cries when the lights go off.
I'll let you decide who preferred which one. ;-)
The booty pic is because Max has a terrible diaper rash that just wasn't getting better; he's been spending a few hours of each shift under the heat lamps like this, to help it dry out and heal... he loves mooning the world and cries when the lights go off.
Say CHEESE!
Jamie (finally!) managed to snap this pic of a smile the other night... he's been after me to post it ever since, and I apologize for the delay. So here it is!
Things are going good in Max-land... his feeds, as of 8:30 this evening, were up to 53mL. I've been saying that 50mL is the magic "full feed" number, but he's grown so much this a full feed for him is now up to 60mL! He should get there for the night shift on Friday. What a great birthday present for me! So sweet of him to oblige with the digesting and all!
So he's now eating and pooping like a champ, but he's developed some breathing issues. He's had a bit of a cough for a few weeks now, but I (we) assumed it was related to the congestion we'd been hearing in his chest... like a cold. Then the doc told us on Sunday that he thought there might be profusion pneumonia, that a chest x-ray had shown some areas of cloudiness on his lungs that was cause for concern. He was put on antibiotics for a few days while waiting for a culture to come back. No pneumonia, thank goodness!
So he's had this (I have to admit, cute) cough for a while, but I hadn't thought anything of it. Until this afternoon, when his nurse told me that "babies don't cough" We talked to the doctor again and he presented a new theory that sounds promising and would be a solution to the breathing thing... we're thinking that he may have a bit of reflux (totally common in preemies; it's odd he hasn't had it already) that is causing the cough; the "products" of the reflux are then going into his lungs instead of out as spit up... it goes in the lungs, gets things irritated, and you get breathing issues!
Dr. Anderson is going to have a pulmonologist take a look at Max and see what's going on... the good thing is that if it's reflux, it can be treated with medication and maybe a formula change. If it's not reflux, we're back to square one. *sigh*
So the truth of the matter is, Max isn't going be home before his due date. We realized it a while back, and we're OK with it. It sucks, of course, but it's what's best for Max, it's where he needs to be right now, and some day this will all be a distant memory.
So that this update isn't all doom and gloom, there was a BIG milestone this week as well! Since birth (and I've mentioned it a few times here, I know) Max has been on something called TPN (Total Parenternal Nutrition, we call it his Gatorade because that's what it looks like) That, along with a tube of lipids (fats) has been given to him through an IV since hours after he was born. It's what kept him growing through all those times that he couldn't tolerate formula, it's what kept him alive for a long time. His liver and spleen were starting to feel the effects of long-term TPN use, since it's not intended to be used for as long as Max was on it. Notice I say "was"! He is now, as of Tuesday afternoon, a formula-fed baby with no supplemental nutrition! As an added bonus to getting off the TPN, his central line was removed as well, so no more IV! One less thing hooked up to our baby, one step closer to coming home.
In non-Max news, I got my first Mom Cut! I've been unhappy with my hair for a while, letting a cut grow out since November... my sister encouraged me to do it, and I even got bangs! I'm really liking having my neck bare again, but I can still pull the front parts back to keep it out of my face. I think I'll keep this one for a while! Please excuse the MySpace style pic; I had to snap it fresh from the salon before the real world got to it!Jamie and I went on a double date with Katie, Jas and Faith last weekend, to the DRIVE-IN! It was way fun! We saw Get Smart (OK movie, wait til DVD) Jamie's car is made for summer drive-ins, and the cooler with beer and Whoppers (no, not together!) was the perfect touch! We'll definitely be taking Max to "see" a couple of movies later this summer... it's the perfect solution for new parents and awesome movies! (Disclaimer: We'll take my car. The car seat isn't secure enough on Jamie's luggage rack)
That's about all from here... thanks as always for your love and prayers!
Welcome to Holland
From somewhere on the internet...
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Camera Dump and an Update!
Still more good news!
Max's feeds are, as of this morning, up to 32mL! Yesterday, at 30mL, he reached the milestone of one ounce! He's getting a whole shot of formula at each feeding! His goal for a "full feed" is 50mL, so each step is a step closer to home! (He is still increasing 1mL per shift, so every 8 hours) He is tolerating them very well, even though he tires out and can't always finish the entire bottle. We sometimes have to gavage (tube feed) the last 8 or so mL, but we're hoping as he gets bigger and stronger, he'll be able to get everything down from the bottle.
Getting full feeds from the bottle exclusively without any help from the tube is a *huge* milestone in busting out, so nippling him is really important at this point.
More proof that I have a fantastic boss and work for a great company; this is the slow time of the year for us, when I'd be taking a vacation if I wasn't saving my time for Max's homecoming... we are basically deadline-free until late July. Normally, I work shorter days during these weeks; come in at 10 or 11, take off at 4... it's pretty lazy around here right now. Well, Nicole agreed to let me tweak the usual plan a bit and instead I'm still coming in at 9 and leaving at 5, but I take basically 2 lunches every day, at 11:30 and 2:30, so I can zip over to the hospital and feed Max! I've been able to do 3 feedings a day, and Jamie does the evening (8:30) one, so we're covering half of his feeds each day! It's very exciting for us, getting to be so involved in his day-to-day care.
His weight yesterday was 6lbs 8oz... six and a half pounds! I can hardly believe it! He's still so tiny in comparison other babies in the world, but he's huge in comparison to where he was just a month ago.
We started immunizations. *sigh* I had really wanted to do a delayed schedule, but with this huge change in situation, I've had to stay flexible and we started his shots last night. Fortunately, Max's neonatologist has his own alternate schedule that we're basically following, so I'm still comfortable with which shots he's getting and when. He isn't getting more than one at a time, so they're a little spread out, and overwhelming his little system was really my biggest concern. Besides, his nurse last night pointed out that getting his shots is yet another pointer that they're starting to think about sending him home! :) (If you're interested, the shots he's getting over the next coupld of weeks are Hep B (Because of the transfusions; otherwise I would have held off), Pneumochoccal (sp?) and the DTaP... the last 2 are against things that can and do get brought into the NICU, so I want to arm him the best we can against them when he's still so fragile.
I know, enough talking, on with the pics, right grandmas and grandpas and aunties?
So handsome in stripes... in a size 0-3 stripe, I might add!
You spend enough time in an elevator, you notice things like these... see it?
I have no witty caption for this photo... I just love it!
Surprisingly, his hair hasn't fallen out, and is actually growing in quite nicely! Considering I was bald as a cue ball until I was 3, we're thinking he got Jamie's hair genes so he's bound to be a little towheaded terror! (And I say that with nothing but love and a little bit of fear ;-)
And a message from Max, for everyone who has been following his story and keeping him (and us!) in their prayers.
If you aren't familiar with American Sign Language, this is darn close to the sign "I Love You" *sigh*
My mom came over last weekend and helped us get the nursery done... all we need now is a baby! Huge thanks to Ashleigh who is such a big girl that she is letting Max use his crib! It's good to know that it's been all broken in already! I don't think anyone would use the term "Pottery Barn" to describe the room, but it's very "us" and we love it! There is nothing but love in this room; Jamie worked his butt off to make it beautiful, and now it's filled with gifts given by those who love Max, and things that we ourselves love. There are a couple of little touches we haven't finished yet, but I can't wait to share!
Jamie's built-ins on the back wall; we got the striped boxes at Babies R Us... so handy for organizing! As a tribute to my sister, I *will* be making labels to but in the little holders on the front. :) 3-6 month clothes, bath stuff, blankets and I have yet to decide what will go in the 4th box.
My rocking chair. And by "my" rocking chair, I mean the one I'll sit in to feed and rock Max, and the one my mom sat in to feed and rock me. Another thing that's loaded with love.
His closet looks pretty much the same as it did when we first did it, but now it's only got stuff he can actually wear in it! We put away the bigger clothes and realized that while we have an amazing stash of 6-12 month, he doesn't have *that* many 0-3 or 3-6 month outfits! Oops! Guess we have some shopping to do! :)
The afremorentioned crib with the bedding! I love love love this bedding so much! (Please no crib bumper lectures! I'm aware of the horror stories and dangers and such; he isn't home yet so I'm going for looks here! :)) We just got a basic cafe rod from Target to hold the quilt on the wall; it'll only be up there until he can pull it down, and by then it'll go in his bed with him. I couldn't see myself spending a bunch of money on those fancy "quilt clips" and then taking them down in less than a year!
That's it for now! We'll be back tomorrow with Thursday #11! I can't believe it!
Max's feeds are, as of this morning, up to 32mL! Yesterday, at 30mL, he reached the milestone of one ounce! He's getting a whole shot of formula at each feeding! His goal for a "full feed" is 50mL, so each step is a step closer to home! (He is still increasing 1mL per shift, so every 8 hours) He is tolerating them very well, even though he tires out and can't always finish the entire bottle. We sometimes have to gavage (tube feed) the last 8 or so mL, but we're hoping as he gets bigger and stronger, he'll be able to get everything down from the bottle.
Getting full feeds from the bottle exclusively without any help from the tube is a *huge* milestone in busting out, so nippling him is really important at this point.
More proof that I have a fantastic boss and work for a great company; this is the slow time of the year for us, when I'd be taking a vacation if I wasn't saving my time for Max's homecoming... we are basically deadline-free until late July. Normally, I work shorter days during these weeks; come in at 10 or 11, take off at 4... it's pretty lazy around here right now. Well, Nicole agreed to let me tweak the usual plan a bit and instead I'm still coming in at 9 and leaving at 5, but I take basically 2 lunches every day, at 11:30 and 2:30, so I can zip over to the hospital and feed Max! I've been able to do 3 feedings a day, and Jamie does the evening (8:30) one, so we're covering half of his feeds each day! It's very exciting for us, getting to be so involved in his day-to-day care.
His weight yesterday was 6lbs 8oz... six and a half pounds! I can hardly believe it! He's still so tiny in comparison other babies in the world, but he's huge in comparison to where he was just a month ago.
We started immunizations. *sigh* I had really wanted to do a delayed schedule, but with this huge change in situation, I've had to stay flexible and we started his shots last night. Fortunately, Max's neonatologist has his own alternate schedule that we're basically following, so I'm still comfortable with which shots he's getting and when. He isn't getting more than one at a time, so they're a little spread out, and overwhelming his little system was really my biggest concern. Besides, his nurse last night pointed out that getting his shots is yet another pointer that they're starting to think about sending him home! :) (If you're interested, the shots he's getting over the next coupld of weeks are Hep B (Because of the transfusions; otherwise I would have held off), Pneumochoccal (sp?) and the DTaP... the last 2 are against things that can and do get brought into the NICU, so I want to arm him the best we can against them when he's still so fragile.
I know, enough talking, on with the pics, right grandmas and grandpas and aunties?
So handsome in stripes... in a size 0-3 stripe, I might add!
You spend enough time in an elevator, you notice things like these... see it?
I have no witty caption for this photo... I just love it!
Surprisingly, his hair hasn't fallen out, and is actually growing in quite nicely! Considering I was bald as a cue ball until I was 3, we're thinking he got Jamie's hair genes so he's bound to be a little towheaded terror! (And I say that with nothing but love and a little bit of fear ;-)
And a message from Max, for everyone who has been following his story and keeping him (and us!) in their prayers.
If you aren't familiar with American Sign Language, this is darn close to the sign "I Love You" *sigh*
My mom came over last weekend and helped us get the nursery done... all we need now is a baby! Huge thanks to Ashleigh who is such a big girl that she is letting Max use his crib! It's good to know that it's been all broken in already! I don't think anyone would use the term "Pottery Barn" to describe the room, but it's very "us" and we love it! There is nothing but love in this room; Jamie worked his butt off to make it beautiful, and now it's filled with gifts given by those who love Max, and things that we ourselves love. There are a couple of little touches we haven't finished yet, but I can't wait to share!
Jamie's built-ins on the back wall; we got the striped boxes at Babies R Us... so handy for organizing! As a tribute to my sister, I *will* be making labels to but in the little holders on the front. :) 3-6 month clothes, bath stuff, blankets and I have yet to decide what will go in the 4th box.
My rocking chair. And by "my" rocking chair, I mean the one I'll sit in to feed and rock Max, and the one my mom sat in to feed and rock me. Another thing that's loaded with love.
His closet looks pretty much the same as it did when we first did it, but now it's only got stuff he can actually wear in it! We put away the bigger clothes and realized that while we have an amazing stash of 6-12 month, he doesn't have *that* many 0-3 or 3-6 month outfits! Oops! Guess we have some shopping to do! :)
The afremorentioned crib with the bedding! I love love love this bedding so much! (Please no crib bumper lectures! I'm aware of the horror stories and dangers and such; he isn't home yet so I'm going for looks here! :)) We just got a basic cafe rod from Target to hold the quilt on the wall; it'll only be up there until he can pull it down, and by then it'll go in his bed with him. I couldn't see myself spending a bunch of money on those fancy "quilt clips" and then taking them down in less than a year!
That's it for now! We'll be back tomorrow with Thursday #11! I can't believe it!
We have POOP, ladies and gentlemen!
I really think Max has turned the proverbial corner on the path to coming home!
We went to visit and feed him tonight to a couple of surprises, the biggest one being that he has pooped TWICE in the last 24 hours with no assistance! (He *is* on arythromyacin (sp?) as a pro-motility agent, but he didn't need suppositories! Previous to today's 2 diapers, he had only pooped once in his life on his own!) So that's incredibly exciting...
The second is concerning his feeds; we've gotten to about this point a few times, and when he gets to 14mL, that's when things go bad... he has had 4 feedings now of 14mL with almost zero residuals! They're still taking it slow, adding only 1mL per shift (8 hours) but this might finally be the time it works! He chowed down on his entire bottle tonight in record time, only taking a few minutes to get with the program and wake up enough to do his job. He had been having some problems with choking and desatting while we def him; his nurse tonight, Carol, said that she had really good luck holding him on his side to feed. (See pic) It's a little unconventional, and we're lacking that whole "gazing into one another's eyes while I give him nourishment and bonding time" thing, but I think we'll get through it... lots of time for bonding when he comes home, and if this weird stance is what it takes to make that happen, I'm all for it!
He was 6 lbs 4 oz today, and a lanky 17.75" long... he's almost a foot and a half tall! Amazing!
And, because we all love a funny baby pic... this is what happens when you push the bottle a little further into Max's mouth then he would like:
(He has his daddy's eyebrows! LOL)
We went to visit and feed him tonight to a couple of surprises, the biggest one being that he has pooped TWICE in the last 24 hours with no assistance! (He *is* on arythromyacin (sp?) as a pro-motility agent, but he didn't need suppositories! Previous to today's 2 diapers, he had only pooped once in his life on his own!) So that's incredibly exciting...
The second is concerning his feeds; we've gotten to about this point a few times, and when he gets to 14mL, that's when things go bad... he has had 4 feedings now of 14mL with almost zero residuals! They're still taking it slow, adding only 1mL per shift (8 hours) but this might finally be the time it works! He chowed down on his entire bottle tonight in record time, only taking a few minutes to get with the program and wake up enough to do his job. He had been having some problems with choking and desatting while we def him; his nurse tonight, Carol, said that she had really good luck holding him on his side to feed. (See pic) It's a little unconventional, and we're lacking that whole "gazing into one another's eyes while I give him nourishment and bonding time" thing, but I think we'll get through it... lots of time for bonding when he comes home, and if this weird stance is what it takes to make that happen, I'm all for it!
He was 6 lbs 4 oz today, and a lanky 17.75" long... he's almost a foot and a half tall! Amazing!
And, because we all love a funny baby pic... this is what happens when you push the bottle a little further into Max's mouth then he would like:
(He has his daddy's eyebrows! LOL)
How we spent Father's Day...
Not too bad, right? :)
We actually celebrated Father's Day on Saturday, since Jamie was off work and Sunday was all booked up with Katie's big day (more on that later)
I brought in an expert (my dad) to make breakfast for Jamie; I'm totally egg-impaired, and my dad's a pro, so I asked him to come over early and make breakfast in bed for Jamie... Jamie woke up early and was already playing MarioKart when my dad got there, but he was surprised and breakfast was delish!
I then told Jamie that the day was his to do with as he pleased, so he headed out to the garage and futzed around for several hours, sharpening his planes cleaning up a bit... he so rarely gets to just hang out in the garage, he was a happy camper!
We had to be at the hospital at 4, so Jamie could get his turn to feed Max! I didn't update after my last long entry, but as soon as I posted about us getting to bottle-feed Max, they put a hold on his feedings, so Saturday was the first chance either of us got to give it a try... since it was Jamie's day, I let him go first. (I know, I'm a giver.) Max has taken to the bottle like a champ... he eats everything that's in there and would probably take more if he could. They're increasing his feeds very slowly (2mL every 12 hours) in the hopes that they'll stick better... previously, they'd been increasing them 2 or so mL every 3 hours, so it's possible part of his problem was just a matter of him system getting overwhelmed. (As I write this on Tuesday morning, he'll be going up to 14mL every 3 hours at some point today.)
Anyway, after Max polished off his afternoon snack, Jane and Austin came down to visit and get their chance to cuddle him... then all 4 of us headed to Alameda to celebrate Laney's bachelor degree and 30th birthday. We hit the road early because we had to be up so early on Sunday morning, but it was apparently quite a shindig after we left! (Congrats again, Lane! We love you!)
We had to get up early on Sunday morning... to be at my parents' house at 7:45... there at 7:45, in Concord by 8:30 for a 9am ceremony... what could possibly get us up out of bed so early on a rare day off? My sister got her Bachelor's Degree! A very exciting day for all of us... she's been working towards this for so, so long... it's going to be weird even for me, not having her in school any more! I'm so used to keeping track of her evening classes so I know not to call or try to make plans, knowing when her finals were so we didn't plan family gatherings to put demands on her valuable study time... I don't know what we'll do with ourselves and all this now "free" time!
After the graduation, we headed to Katie's house for a graduation/birthday party (Katie actually graduated *on* her 29th birthday!) which was, as always, a blast... margaritas, family, friends and a gorgeous day.... what more could we want?
So that was our not-so-relaxing but fun-filled weekend!
Now for the good stuff... Max has been having an amazing few days! I feel like he's really turned a corner and is he's getting ready to come home. (Fortunately, we picked up the crib from Dave and AM and got the bassinette from Jane and Austin, so now we have somewhere to put him!)
The doctors are very tight-lipped about a homecoming, but I really think it's more a matter of not wanting to impose deadlines that could disappoint us or anything.
We walked in on Sunday afternoon to visit to find, to our surprise and delight, the top of his isolette raise up and he was/is in an open crib! This is a great sign that he's maintaining his temps and is one more check mark in the homecoming list.
We brought in some clothes for him to wear, so he's cuter than ever, and he has even outgrown his rockstar hat (the purple and green on Victoria made... I'm partly bummed, because it's such a cute hat, but I'm also thrilled, because it means he's growing!)
He's been put on some pro-motility agents (read: poop assisting meds) that are having at least a small effect... he still isn't poopin' entirely like he should be, but there's some "action" there that wasn't there previously, so we're hoping things are moving in the right direction in that area.
He's rapidly approaching 6 lbs and will probably be there by the end of the week or soon after... the changes are amazing... he really is looking like a term baby these days, with little rolls of baby fat and he cries and fusses and it's all so amazing to see.
Every day we get closer and closer... thank you as always for keeping us in your prayers!
Thursday #9
Max with his shell chalk, made and given to him by Ashleigh, who can't wait to meet him!
He's no Bruce Campbell! (Thank Goodness! ;))
We have a chin!
We went in to see Max last night and were amazed and thrilled to see (for me, for the first time) the bottom half of his face, all naked and free of medical junk! His feeding tube has been relocated to his nose (called an NG tube; you can just barely see it on the "underside" of his face in the pic) so now there's more of his gorgeous little face available for kisses!
WHY did they move his feeding tube, you ask? Well, it's so that he can have an easier time with the BOTTLE he's getting! They're working on his "nippling" skills and feed him once per shift through a bottle... one more step closer to coming home! Another exciting aspect of that is Jamie and I can actually be the ones to feed him now, giving us that chance to bond with him on a whole new level we haven't done before. He's fed on a schedule, so if we're there at feeding time, we can do it! We're currently hoping to be present for 2 feedings a day; one midday one, when I come visit at my lunch break, and one evening one, at 7:30. I'm really excited to take this next step in "taking over" caring for Max!
In other news, his central line was removed yesterday, too! It has gotten infected THREE times in the last month, required a week of antibiotics and setting him back a few days, so we've been wanting to get rid of it for a while. He's been getting his TPN (aka: his Gatorade, a liquid nutrient mixture keeping him growing even when he isn't being fed formula) through that line since they put it in, but babies aren't supposed to *be* on TPN for this long (8 weeks on Thursday! OMG!) and his liver and spleen are slightly enlarged because of it... getting him off the TPN is now a priority as well. If we can gt his feedings up and keep them going well, the TPN will soon be a distant memory that we tell him about as we hand him lemon-lime Gatorade at the Little League Finals (where he pitches, of course!)
He broke FIVE POUNDS yesterday! Just barely, by only one ounce, but still! He's a bag of sugar now! We had a neighbor baby who was about Max's birth weight... I saw one of the nurses holding her and couldn't believe how teeny she was... and then Allison (the nurse) pointed out that she had been 4 oz. *bigger* than Max at birth! I can already barely remember him so so tiny... it's weird! People come visit and comment on how tiny he is, and I wonder what they're thinking... he's Gigantic!
My mom and sister have said that they don't believe he cries... he does, and it's really (finally) starting to sound like a full, hearty, pissed off "Fix me now!" term baby cry... and I caught it on video! LOL
It's only about 20 secs. long, so you don't have to see him suffer or anything, he just wasn't in the mood for a diaper change at this moment...
My sister threw us the most amazing shower on Sunday... we had 30+ of our most important people, including kids and spouses and it was an amazing day in Katie's gorgeously redone backyard. I can't believe how much love went into some of our gifts; Amelia (my sis-in-law) knit bibs and a burp cloth, Lucinda (Jamie's step-mom) knit us an amazing blanket, and Wendy (another sis-in-law) made a beautiful Noah's Ark quilt. I'm still waiting to get photos from all of the photogs (*ahem* Dad) but I'll post lots just as soon as I have them!
Thank you, as I always say, for the love and prayers... Max will be home soon!
PS: Jamie thinks I should change the title of this entry to "He's no Jay Leno" because people don't know who Bruce Campbell is... leave a comment if you know who he is! ;)
We went in to see Max last night and were amazed and thrilled to see (for me, for the first time) the bottom half of his face, all naked and free of medical junk! His feeding tube has been relocated to his nose (called an NG tube; you can just barely see it on the "underside" of his face in the pic) so now there's more of his gorgeous little face available for kisses!
WHY did they move his feeding tube, you ask? Well, it's so that he can have an easier time with the BOTTLE he's getting! They're working on his "nippling" skills and feed him once per shift through a bottle... one more step closer to coming home! Another exciting aspect of that is Jamie and I can actually be the ones to feed him now, giving us that chance to bond with him on a whole new level we haven't done before. He's fed on a schedule, so if we're there at feeding time, we can do it! We're currently hoping to be present for 2 feedings a day; one midday one, when I come visit at my lunch break, and one evening one, at 7:30. I'm really excited to take this next step in "taking over" caring for Max!
In other news, his central line was removed yesterday, too! It has gotten infected THREE times in the last month, required a week of antibiotics and setting him back a few days, so we've been wanting to get rid of it for a while. He's been getting his TPN (aka: his Gatorade, a liquid nutrient mixture keeping him growing even when he isn't being fed formula) through that line since they put it in, but babies aren't supposed to *be* on TPN for this long (8 weeks on Thursday! OMG!) and his liver and spleen are slightly enlarged because of it... getting him off the TPN is now a priority as well. If we can gt his feedings up and keep them going well, the TPN will soon be a distant memory that we tell him about as we hand him lemon-lime Gatorade at the Little League Finals (where he pitches, of course!)
He broke FIVE POUNDS yesterday! Just barely, by only one ounce, but still! He's a bag of sugar now! We had a neighbor baby who was about Max's birth weight... I saw one of the nurses holding her and couldn't believe how teeny she was... and then Allison (the nurse) pointed out that she had been 4 oz. *bigger* than Max at birth! I can already barely remember him so so tiny... it's weird! People come visit and comment on how tiny he is, and I wonder what they're thinking... he's Gigantic!
My mom and sister have said that they don't believe he cries... he does, and it's really (finally) starting to sound like a full, hearty, pissed off "Fix me now!" term baby cry... and I caught it on video! LOL
It's only about 20 secs. long, so you don't have to see him suffer or anything, he just wasn't in the mood for a diaper change at this moment...
My sister threw us the most amazing shower on Sunday... we had 30+ of our most important people, including kids and spouses and it was an amazing day in Katie's gorgeously redone backyard. I can't believe how much love went into some of our gifts; Amelia (my sis-in-law) knit bibs and a burp cloth, Lucinda (Jamie's step-mom) knit us an amazing blanket, and Wendy (another sis-in-law) made a beautiful Noah's Ark quilt. I'm still waiting to get photos from all of the photogs (*ahem* Dad) but I'll post lots just as soon as I have them!
Thank you, as I always say, for the love and prayers... Max will be home soon!
PS: Jamie thinks I should change the title of this entry to "He's no Jay Leno" because people don't know who Bruce Campbell is... leave a comment if you know who he is! ;)
Max Pages
Just a couple of them...
A pic from my first Mother's Day!
Journaling: Who knew that these would be the last photos of my pregnant belly? Who knew that our Max would enter the world a mere 4 days l after thesee were taken? Who knew that our entire lives would be changed forever in less than a week? Who knew?
A pic from my first Mother's Day!
Journaling: Who knew that these would be the last photos of my pregnant belly? Who knew that our Max would enter the world a mere 4 days l after thesee were taken? Who knew that our entire lives would be changed forever in less than a week? Who knew?
Thursday #8
Max's new hat is from my good friend, Victoria. She knit it for him a while ago, and it's taken us until this week to be able to get it... I'm thrilled it fits him and he has already gotten loads of compliments from the nurses! :)
Goin' Mobile!
This is the crazy caddywhompus baby scene that greeted us the other day! Normally, his head should be on that star-shaped pillow thing, and he should be all centered and proper in the middle of the isolette. Not so with our little guy! He's been so squirmy and wiggly lately, he managed to get his feet off the edge of the bed platform (I don't think I can properly call it a matress) and this is what we see! Just more proof that he's growing and getting stronger!
There really isn't much to update this week... I'm finding that as time goes by, he gets more stable and there's less I need to say here, which really, is a good thing! We aren't getting the daily phone calls anymore with new complications or concerns, we're just waiting for him to be strong enough to come home.
We did get a great bit of news yesterday though... the pedi called me and said that he could barely hear Max's heart murmur! We've been hoping it would close up on its own so our poor guy could avoid heart surgery, and it looks like that's finally happening! After six weeks of limbo and wondering, his heart is on its way! Woo hoo!
There are still no definite answers as far as his belly is concerned... they did a rectal suction biopsy (poor baby!) the other day and we're waiting on the results from that. We have a potential diagnosis, but until we're sure, I'm not going to go into it here... there's too much scary stuff out there on Google, so I'm removing the temptation for you internet search fiends out there (myself included! LOL)
So while I might not be updating as frequently as I had been, please take that as good news, that things are progressing well... not that I've forgotten about all the people who love and are praying for us and Max every day!
Thursday #7
Not his *best* photo ever, but I thought his moving around was funny (as mentioned in the above post)
This post is mostly about the photos.
As I write this, Max more than likely weighs more than 4 lbs! We was up to 3lbs 15oz, and that was at last night's weighing!
He's been put on continuous feeds, so he's got a steady drip of formula instead of the larger feedings every 3 hours; he seems to be tolerating this better than the previous arrangement, and he's up to 6mL per hour, the equivalent of 18mL in a single feeding! A "full feeding" for a baby his size is 10mL per hour, so he's well on his way!
Next step, the bottle!
Something that it hadn't occurred to me to track is the temperature his incubator is being kept at; that crazy medical field uses the metric system, so you need to know that body temp is about 37 degrees celsius... in the first days, that's the temperature Max's bed was set to; preemies, due to their lack of body fat, are unable to regulate their body temp, so they, much like a cold-blooded reptile, need to be in a room that's the same temp they need to be. So anyway, one of his nurses mentioned the other day that his isolette has been turned down to 30.7 degrees... when it gets adjusted down to 28 degrees, it's considered room temperature and they'll then raise the lid on his isolette and let him sleep in it that way! Only three tiny degrees until that day! This is one of the big milestones a baby needs to reach in order to be released to go home.
Jamie and I have both gotten significantly more comfortable handling Max when he's outside his incubator... rather than just having the nurse place him gently in our waiting arms and then not moving a muscle for the hour or so he's out with us, we can now play "Pass the Baby" on our own and rearrange him as we see fit... because of this, we've been inviting people to come experience the fabulous that is Max cuddle time... lots of visitors these last couple of days have gotten to hold Max... almost like the first day of a term baby, where everyone gets a turn!
Nana (My mom)
Grandma (Jamie's mom)
Ann Marie
Dave
An updated family photo!
You can tell I'm still a little swollen from my blood pressure adventures of the last week or so...
And here's just a random little collection of photos...
He's started to outgrow the little green hat he was originally given, and apparently the little old ladies who knit hats for the NICU only make them in 2 sizes, Small and Ginormous! Or as Jamie said upon seeing this, "We are from France"
The end of Max's days as a nudist... the first time he ever wore clothes! It, much like that hat above, is one size fits all, so Max and the 12 lb. newborn next door could share this shirt! We just got an adorable little collection of preemie clothes from my friend Tania, so he'll be better dressed soon and we'll take lots of fashion show pics! But this is the shirt that starts it all!
This pic (rotated for effect) is one of two reasons Max made his daddy proud yesterday... the other being that his nurse *heard* him poop from about 8 feet away and *through* the closed up isolette! *sigh* I'm in for a lifetime of poop and fart jokes and contests.
He's been put on continuous feeds, so he's got a steady drip of formula instead of the larger feedings every 3 hours; he seems to be tolerating this better than the previous arrangement, and he's up to 6mL per hour, the equivalent of 18mL in a single feeding! A "full feeding" for a baby his size is 10mL per hour, so he's well on his way!
Next step, the bottle!
Something that it hadn't occurred to me to track is the temperature his incubator is being kept at; that crazy medical field uses the metric system, so you need to know that body temp is about 37 degrees celsius... in the first days, that's the temperature Max's bed was set to; preemies, due to their lack of body fat, are unable to regulate their body temp, so they, much like a cold-blooded reptile, need to be in a room that's the same temp they need to be. So anyway, one of his nurses mentioned the other day that his isolette has been turned down to 30.7 degrees... when it gets adjusted down to 28 degrees, it's considered room temperature and they'll then raise the lid on his isolette and let him sleep in it that way! Only three tiny degrees until that day! This is one of the big milestones a baby needs to reach in order to be released to go home.
Jamie and I have both gotten significantly more comfortable handling Max when he's outside his incubator... rather than just having the nurse place him gently in our waiting arms and then not moving a muscle for the hour or so he's out with us, we can now play "Pass the Baby" on our own and rearrange him as we see fit... because of this, we've been inviting people to come experience the fabulous that is Max cuddle time... lots of visitors these last couple of days have gotten to hold Max... almost like the first day of a term baby, where everyone gets a turn!
Nana (My mom)
Grandma (Jamie's mom)
Ann Marie
Dave
An updated family photo!And here's just a random little collection of photos...
He's started to outgrow the little green hat he was originally given, and apparently the little old ladies who knit hats for the NICU only make them in 2 sizes, Small and Ginormous! Or as Jamie said upon seeing this, "We are from France"
The end of Max's days as a nudist... the first time he ever wore clothes! It, much like that hat above, is one size fits all, so Max and the 12 lb. newborn next door could share this shirt! We just got an adorable little collection of preemie clothes from my friend Tania, so he'll be better dressed soon and we'll take lots of fashion show pics! But this is the shirt that starts it all!
This pic (rotated for effect) is one of two reasons Max made his daddy proud yesterday... the other being that his nurse *heard* him poop from about 8 feet away and *through* the closed up isolette! *sigh* I'm in for a lifetime of poop and fart jokes and contests.
The Numbers Just Keep Growing!
Even if there's nothing else to add, I need to update daily with Max's new stats! As of yesterday morning, he was 3lbs 10oz! Only a filet mignon away from FOUR POUNDS! He's now 15 3/4" long, so he's gained almost 2" since birth.
The doctors have still been working on his belly issues... a surgeon has now said that she's pretty much guaranteed it's not an issue of his intenstines "narrowing" (this is a good thing because fixing that requires surgery!) and if they can get his feedings up to full size (he's currently at 11mL; about halfway to "full") then they're going to take a wait and see attitude and hope he outgrows the problem... it's not all that uncommon in preemies, since intestines don't fully develop until later in pregnancy.
He had his eye exam this week, which we've been waiting for. There's a condition called "ROP" (Retinopathy of Prematurity) that can cause serious sight issues. Because the blood vessels at the back of the eye are so, so tiny, they can actually become tangled, and the inturrupted blood flow can cause problems in the developing eye. Max's eye exam came out great, so now his only eye problems will come from his stupid parents! (But nearsightedness and astigmatism is much less scary than tangled blood blood vessels, doncha think?)
Here's a funny pic from the other night... you never get to see him all stretched out like this!
Nurses' Appreciation Week was a couple of weeks ago, and we wanted to do something nivce for the NICU nurses who do such an amazing thing every day. At the suggestion of some nurse Peas, we got them a 3lb bag of coffee beans and a grinder for the break room. I made the card, and inside it says "We figured since caffeine does such good things for Max, it might help you guys out too!" (Caffeine is used to help treat the apnea in preemies)
That's about it for this morning! Check out Thursday #6 (below) for a first look at some chub!
EDIT: OMG! How could I forget? We have a real belly button! The stump fell off the other night! It's quite an outie, as you can see in the photo, but Jamie had an outie too... I'll try to get a better button pic soon!
The doctors have still been working on his belly issues... a surgeon has now said that she's pretty much guaranteed it's not an issue of his intenstines "narrowing" (this is a good thing because fixing that requires surgery!) and if they can get his feedings up to full size (he's currently at 11mL; about halfway to "full") then they're going to take a wait and see attitude and hope he outgrows the problem... it's not all that uncommon in preemies, since intestines don't fully develop until later in pregnancy.
He had his eye exam this week, which we've been waiting for. There's a condition called "ROP" (Retinopathy of Prematurity) that can cause serious sight issues. Because the blood vessels at the back of the eye are so, so tiny, they can actually become tangled, and the inturrupted blood flow can cause problems in the developing eye. Max's eye exam came out great, so now his only eye problems will come from his stupid parents! (But nearsightedness and astigmatism is much less scary than tangled blood blood vessels, doncha think?)
Here's a funny pic from the other night... you never get to see him all stretched out like this!
Nurses' Appreciation Week was a couple of weeks ago, and we wanted to do something nivce for the NICU nurses who do such an amazing thing every day. At the suggestion of some nurse Peas, we got them a 3lb bag of coffee beans and a grinder for the break room. I made the card, and inside it says "We figured since caffeine does such good things for Max, it might help you guys out too!" (Caffeine is used to help treat the apnea in preemies)
That's about it for this morning! Check out Thursday #6 (below) for a first look at some chub!
EDIT: OMG! How could I forget? We have a real belly button! The stump fell off the other night! It's quite an outie, as you can see in the photo, but Jamie had an outie too... I'll try to get a better button pic soon!
The Max Update
(aka THREE LBS. FIVE OZ.!)
Yes, you read that right! Our little man is up an entire pound from his birth weight! So if you're interested in getting an idea of what it's like to hold him, grab a half-gallon milk container and voila! He doesn't have the pointy corners of a milk carton, and he doesn't refresh with brownies quite like a glass of milk, but if you use your imagination, you'll get it! :-)
We actually realized the correlation last night, as Katie held Max for the very first time! It's almost as cool for me seeing her with him as it is to actually hold him. I remember how I felt the first time I held Faith, and now I've been able to give Katie that same feeling... there are certainly worse things in life! I'm really looking forward to getting to play "Pass the Baby" a little more now, as he gets older and more stable, we'll be able to share the joy that is Max cuddles.
As far as Max, he's really doing good. They had to stop feedings for a couple of days, but they're back on schedule. His brain scans are still clear, and his breathing is still great. We're all still stumped by his belly though... poor baby had a barium enema and an upper GI study last week, in search of a cause, but everything looks normal, from his colon on up, we there's still some head-scratching on the part of the medical team, and we just want him to get better so he can keep putting on weight and come home to us!
I can't believe he's a month old already! I remember early on, in the first week or so, reminding myself that the time in the NICU would fly by, that really 2 or 3 months in the scheme of a lifetime is no time at all... and now it's been almost 5 weeks! We have our Infant CPR class this week, and when we scheduled it, the nurse said "We like to do this class closer to the baby's discharge, so it'll be fresh in your mind" and now it's here!
I can hardly believe it! I feel like mommyhood has been taunting me from behind a literal wall of plastic... I can see it, I get little sample tastes of it, but I haven't fully been able to experience it, and that day is coming closer and closer, and I can barely contain myself! Jamie and I have spent some time talking about the cool parts of Max being so premature... while I'm sad I didn't get my last trimester, my last time where he was all mine, I've gotten to see Jamie and his son together that much sooner. We've gotten to watch so many amazing developments...like ears! Cartiledge doesn't develop until week 32 or later, so when he was born, his ears were literally flaps of skin that could be folded up... now you can them starting to stick off his head a little, and they take shape more every day. He's growing baby fat! I swear, overnight, he grew into an almost chubbo! You'll see in this week's photos, or I might try to take some tonight. I'm seriously in awe of the changes we're seeing on a day to day basis.
Sorry... I didn't mean to wax sentimental quite so much... *sigh* Damn these hormones!
Keep reading for more update and last week's Thursday photo! :-)
The Lizz Update
OK, so here's my very good excuse for not updating for a week!
I had noticed some ever-increasing swelling in my legs and feet last week. It was as bad as it ever was while I was pregnant and got to where I could only squeeze my feet into my ballet-style Crocs. So I made an appointment with a doctor on Thursday afternoon... he took one look at my feet and my blood pressure (way high) and said "I can't help you, go to Emergency"
I went to the Emergency Room at 5pm on Thursday... my blood pressure registered at about 260/140 (almost twice what is considered healthy!) so they started medicating me and wanted to admit me.
I refused admission and instead spent the night in the ER and had Jamie bring me new clothes in the morning so I could go to work on Friday. (We were closing a mailer; there are about 3 days every 2 months I CANNOT miss, and this was one of them. So I very dramatically left AMA (against medical advice) and went off to work with the promise that I'd be back at the hospital after work, at which point I'd give them the weekend to fix me.
I got back to the ER about 6pm on Friday... they again medicated me for my BP and admitted me and (finally!) gave me a few doses of Lasix to get the swelling down. (I lost 13 lbs. over the weekend; all water weight that was in my legs, feet and face)
So I'm loaded up with meds, in the hospital, getting ready to make a stink to go home (this is Sunday morning) I get out of bed to go pee, and I nearly pass out... the nurse comes in to check my blood pressure, and it's plummeted to 60/40! Barely enough to keep me conscious.
Because my pressures all weekend had been taken with me lying in bed, my standing pressure got way too low on the meds I'd been given.
As I'm realizing that this means more time in the hospital to get that straightened out, they drop the bomb.
The staff at Kaiser is afraid I'm rejecting my transplanted kidney and I need to be transferred to UCSF's Transplant Center to have the kidney biopsied and figure out exactly what's going on. I'm transported by ambulance on Sunday afternoon back to the site of my transplant, where I'm told that I'm scheduled for a biopsy and 9am Monday morning.
The results of the biopsy come back Monday afternoon; there's good news and there's bad news. The good news is that there's no rejection. The bad news is that the pregnancy and pre-eclampsia took a major toll on my kidney. A significant percentage (close to 50%) of the tiny blood vessels and capillaries have been damaged to the point that they no longer function, and they aren't something that can grow back or heal. Add that to the (harmless) cyst in the kidney, and I'm working at about 30% kidney function overall. Best case scenario is that I'll need a new transplant or dialysis in about 4 years... worst case, it's got less than a year.
Hopefully with careful management of my blood pressure meds and anti-rejection meds, we can stave it off for as long as possible...
So that's where I'm at; it's a tough bit of news to get, but we'll get through it. And, as always, prayers and the like are always, always welcome!
I had noticed some ever-increasing swelling in my legs and feet last week. It was as bad as it ever was while I was pregnant and got to where I could only squeeze my feet into my ballet-style Crocs. So I made an appointment with a doctor on Thursday afternoon... he took one look at my feet and my blood pressure (way high) and said "I can't help you, go to Emergency"
I went to the Emergency Room at 5pm on Thursday... my blood pressure registered at about 260/140 (almost twice what is considered healthy!) so they started medicating me and wanted to admit me.
I refused admission and instead spent the night in the ER and had Jamie bring me new clothes in the morning so I could go to work on Friday. (We were closing a mailer; there are about 3 days every 2 months I CANNOT miss, and this was one of them. So I very dramatically left AMA (against medical advice) and went off to work with the promise that I'd be back at the hospital after work, at which point I'd give them the weekend to fix me.
I got back to the ER about 6pm on Friday... they again medicated me for my BP and admitted me and (finally!) gave me a few doses of Lasix to get the swelling down. (I lost 13 lbs. over the weekend; all water weight that was in my legs, feet and face)
So I'm loaded up with meds, in the hospital, getting ready to make a stink to go home (this is Sunday morning) I get out of bed to go pee, and I nearly pass out... the nurse comes in to check my blood pressure, and it's plummeted to 60/40! Barely enough to keep me conscious.
Because my pressures all weekend had been taken with me lying in bed, my standing pressure got way too low on the meds I'd been given.
As I'm realizing that this means more time in the hospital to get that straightened out, they drop the bomb.
The staff at Kaiser is afraid I'm rejecting my transplanted kidney and I need to be transferred to UCSF's Transplant Center to have the kidney biopsied and figure out exactly what's going on. I'm transported by ambulance on Sunday afternoon back to the site of my transplant, where I'm told that I'm scheduled for a biopsy and 9am Monday morning.
The results of the biopsy come back Monday afternoon; there's good news and there's bad news. The good news is that there's no rejection. The bad news is that the pregnancy and pre-eclampsia took a major toll on my kidney. A significant percentage (close to 50%) of the tiny blood vessels and capillaries have been damaged to the point that they no longer function, and they aren't something that can grow back or heal. Add that to the (harmless) cyst in the kidney, and I'm working at about 30% kidney function overall. Best case scenario is that I'll need a new transplant or dialysis in about 4 years... worst case, it's got less than a year.
Hopefully with careful management of my blood pressure meds and anti-rejection meds, we can stave it off for as long as possible...
So that's where I'm at; it's a tough bit of news to get, but we'll get through it. And, as always, prayers and the like are always, always welcome!
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