Saturday, August 29, 2009

Scooting

Look what Robbie started doing today!



--Trish

Thursday, August 27, 2009

R.I.P Kenzie

Our dog passed today.

Our hearts are broken.

Kenzie was quite old, particularly being a large-for-breed Boxer. He was a tall, slim 85 pounds- a gentle, crazy giant. He was 11 1/2 and I hoped he'd be one of those dogs that defied the odds for life expectancy.

Boxers are quite prone to cancer and we'd had two scares in the last year. He had two tumors removed from his mouth last year and had a large growth on his paw for the last several months. All were benign.

I really thought that's what would get him in the end; the time would come and we would make the decision to ease his suffering. I honestly don't know what happened, which is the hardest part. I didn't get to say goodbye.

He ate well yesterday. His food bowl was empty when I filled it around midnight.

This morning I was rushing around trying to run an errand for Robbie before work and didn't pay much attention to him. He was really a great dog and had let himself out into the sunroom preparing for me to leave for work. He was a housedog, but during the day, he had the run of the sunroom, garage and a doggy door to the fenced backyard. I told him "you're a good boy" when I saw he hadn't made me call him. Then I left. They would be my last words to him.

When I got home, he didn't meet me at the door. In fact, no one did. I wondered aloud where everyone was. Robbie was napping, David was in his office. I went to look for my dog, thinking he hadn't heard my car come in.

I opened the backdoor and saw him laying by the fence. I thought he'd jump up like he normally did when I surprised him. "Oh mom! You're home!" but he didn't move. My heart sunk. "Kenz? Kenz?"

Before I got to him, I knew. "Oh buddy. Please don't be.. Oh God."

I came running back inside and told David. That's when I started crying. I really haven't stopped since.

I called the vet to have him cremated. Fortunately my favorite vet employee answered the phone. She has a boxer, too and we always talked about getting the dogs together for a play date. She met me in the parking lot and cried with me for a while.

Everyone speculates that he went quickly. He wasn't curled up as though he knew something was wrong. He honestly looked liked he'd gone to lay in the shade of the fence and just enjoy the day. His eyes were still open. I pray it was a stroke and it took him quickly and painlessly. Most of all I hope he knew how much he was loved.

Even David, admittedly not a dog person, shed some tears and proclaimed "He was a good dog."

There is already an emptiness in the house. Tonight when Robbie threw all of his Puffs in the floor, I had to sweep them up. When Robbie splashed water from the tub into the floor, no slobby dog bound in to lap it up, or to lick the water from our arms or to give Robbie kisses so gentle you couldn't believe a dog as sloppy as Kenz was could give them.

I often wondered if Robbie's first real word would be "dog." Now, he won't remember Kenz when he gets older. But we'll tell him about his first dog. I'm thankful we have pictures of some of their interactions. Kenzie taught Robbie that just because things are bigger than you doesn't mean they are scary. And Robbie taught Kenzie that patience is always rewarded- whether it be with an animated pat on the head or scraps under a high chair.

But he's gone. Thus is the bittersweet symphony of pet ownership. So much joy they bring, that when they're gone, the sorrow is even more profound.

If there are no dogs in Heaven, then when I die I want to go where they went. -Will Rogers













































--Trish

Monday, August 24, 2009

Fever

Friday night, Robbie spent 2 hours in misery. I didn't really know what was going on. He was spitting up a bit, and generally acting miserable, but nothing was obvious. We were up from 2-4am. He then slept in until 9:30.

Unfortunately, when I got him up, he was burning up. 100.6 under the arm. Uh-oh. He was also super whiney and would not be put down at all. Definitely out of character.

I called the doctor. Fortunately our pediatrician has Saturday hours (the doctors take a rotation) so we headed in.

I really liked the covering doctor, which was a surprise. Not that I've ever actively disliked any of them, but I do feel like sometimes they dismiss the seriousness of his prematurity, and tend to rush. Not so on Saturday. She asked good questions and seemed to actually listen to the answers. She was great with Robbie (who cried the entire time. His doctor phobia is fully enacted.) His lungs were clear, which was a relief. His right ear, however, wasn't as lucky. She said "well, it's full of pus." Yum. Leftie was full of fluid, though not actively infected yet.

We left with a prescription for an antibiotic.

Once we filled the prescription and headed home, Robbie was ready for a nap. He whined all the way through Target because I couldn't hold him every. single. second. so I was ready for his nap, too.

We've kept him dosed with Tylenol and Motrin every 4 & 6 hours, respectively, but until this afternoon, couldn't get his temp below about 100 degrees under the arm.

He's been fairly pukey and had a bit of a clear runny nose as well. I suspect the drainage from his ear is creating havoc in his whole system.

Fortunately tonight, his fever seems to have broken. He was 98.7 earlier and he no longer feels like a hot coal. Gross rocks of what I assume is dried up pus are coming out of his ear, but he doesn't seem to be in any pain. His mood was better tonight and so far, he's sleeping well.

Funny, I was worried about germs at daycare, and he gets something that isn't contagious.

Of course, this means that he can't go to daycare tomorrow. (Have to be free of fever for 24 hours first) so I'll be using a vacation day to stay home with him.

Maybe it's all just a ploy to get me to stay home, huh? I bet the doctor's in on it.


--Trish

Saturday, August 22, 2009

Another Angel

Heaven has another angel today.

Prematurity, specifically NEC has claimed another life.

Annaleigh and her triplet sister and brother were born at 25w5d. Things were looking pretty good for her until yesterday when she was diagnosed with NEC.

NEC was the thing that scared me the most during Robbie's NICU days. All of the bloody stool issues lead me to once tell the doctor that I felt like we had the spectre of NEC looming over us all the time. That spectre took Annaleigh this afternoon.

She is at peace now, but her parents and siblings could use your prayers and good thoughts.

Three cheers for babies


--Trish

Friday, August 21, 2009

HUTH

It's the end of an era.

Tonight I hooked myself up like a common dairy cow for the last time. Yes, I stopped pumping.

I've made it 14 1/2 months. With the frozen stash we have, Robbie will get breast milk until his adjusted birthday (September 4th, for those keeping track.) That was my original goal.

Now, my original goal involved him being born on or around September 4th and him actually nursing for a year, so you know, it's more like original goal*, but this isn't baseball and asterisks don't count.

It's bittersweet to be sure. I honestly really enjoyed nursing Robbie for the very brief time that he would do so. And even beyond that, I loved giving him the very best nutrition he could get. He is at risk for about a billion different things, including mental retardation and immune deficiencies, so any boost I could give him in both arenas is a big deal to me.

I was also proud to have made it work. Maybe it's a little martyr-ish, but I was proud to be willing to sacrifice my time and comfort to do something good for him. Back in the NICU, it was something that made me feel a little more like a mom during a time that I really felt like an observer.

It wasn't easy. I'm not going to pretend it was no big deal, because damn it, it was. Pumping isn't the most comfortable thing in the world. It's time consuming. It makes lots of dishes (cones, bottles etc). It took me away from Robbie instead of bringing me closer like actual nursing would have done. In those months where Robbie wasn't sleeping and neither was I, it ate up time that could have been used sleeping. My supply tanked around 3 months and I had to start taking Domperidone, which was expensive. I had to lug the heavy, expensive hospital grade pump everywhere I went, including to and from work for the weeks that I was there while Robbie was still hospitalized. For many months, I had blisters on my nipples. No amount of lanolin could lube them up enough. In short- it sucked. Pun fully intended.

I wanted to quit a hundred times. A friend on a message board is a runner and says when she's running and she wants to stop, she tells herself "one more driveway." She can go just one more driveway and then she'll stop. And then another. And another. I "one more driveway"ed myself a number of times. Sometimes that only thing that kept me going was knowing how much worse the formula made his reflux. But even when we found a formula that didn't, I managed another driveway.

I gave myself permission to stop at 9 months. Then 10. Then a year actual. But I always found I could go just a little bit longer.

Probably the biggest reason I was able to keep going was that I wasn't working. Pumping at work was hell. My employer was NOT supportive. At all. The few weeks that I worked and pumped, I endured dozens of rude comments, smart-ass remarks, even formal complaints because other people in the office weren't granted the "benefit" of being able to pump. (Nevermind that I did so on my own time, opting to make Robbie's lunch instead of eating my own. And nevermind that it is protected by law in my state.) I had to actually consider retaining a lawyer to get them to comply with the law allowing me to do so. And while I am a fighter by nature, I'm not sure how long I could have kept it up if I'd have to endure all of that for months on end.

So being able to be off was my saving grace and I'm forever grateful for it.

Even with all the N.E.C. scares in the NICU, he never got it. The neonatologists said they believe it was the breast milk that saved him. He's gotten sick once in 14 1/2 months. I credit the immunities. Who knows what other benefits he has reaped.
And I'm proud.

But I'm back to work full time now, and Robbie is almost 1 adjusted. I haven't a margarita in about 2 years. Since it became clear that Robbie's stomach can't handle corn syrup, I gave it up as well. I haven't had a Pepsi in a long time. Which means no caffeine. It means no hot fudge. No soft serve. The number of things made with corn syrup is mind-boggling. And I've missed all of them.

And I've missed feeling like my body is my own. I'm sure David's missed my boobs, too, though he's a great enough guy not to complain about it.

So I'm looking forward to it. Tomorrow, I plan on having a nice, big, ice cold Pepsi. I'm giving myself a week to enjoy anything I want. We might be having ice cream cones for dinner tomorrow. And I've promised myself a margarita this weekend.

Next week, I will return the breast pump. If only it weren't rented, I'd have an Office Space Fax Machine event. But I promise to give it the finger as it goes.

Rest in peace, tit-torturer. Rest in peace.

--Trish

Wednesday, August 19, 2009

Changes

Big changes in our world this week.

I'm now officially a working mom. Yesterday was the big day.

I got everything packed and ready the night before, so that all I had to go was pack his feeding pump and food, and my lunch when we got up.

I slept okayish and didn't obsess too much.

Morning went fine. I had to wake Robbie (he's not much of a morning baby) but he was in a pretty good mood anyway. I did obsess a little over what he should wear. I had planned on one outfit only to put it on him and realize it's way too small. (It's a 9 month, but it was skin tight. That's annoying since I JUST bought it.) So we ended up in a cotton jumper, no big deal.

We got packed up and headed out. I got a little emotional as we left the house but I shook it off. Then just as we pulled up to the daycare, I realized I'd forgotten his bottle! OH NO!

So I ran him in and put him down. He was instantly intrigued by the other kids. I explained that I'd forgotten his food and had to run back home. Thank goodness I'd budgeted myself plenty of time so I could have a nervous breakdown. So instead of having said breakdown, I ran back across town. And then back again.

In the end, I only had about 10 minutes to tell him goodbye. I think that was probably good because I didn't have time to freak out. He was too busy playing to be snuggled anyway. He hadn't even noticed I left. So I annoyed hugged him, got a little misty and then ran out before I broke down. I cried a little on the way to work, but was really okay. I told myself it would be good for him to socialize and to think of it like therapy instead of like me abandoning him for the almighty dollar.

The daycare people were great. They texted me a picture right away. He was smiling and doing fine.

Work was.. well.. work. Not even going to get into it. Nothing major. Just the usual stupid work crap.

Around noon, I called to check how he was doing and the daycare owner, J, was SO excited. He'd eaten half a jar of baby food! That's a *HUGE* amount of solid food for him. He'd also eaten 5 puffs. I couldn't believe it.

When I hung up the phone, I was euphoric. Of course, then my next thought was "wow, maybe it's been ME this whole time." but I only had a brief fit of mommy guilt and went back to euphoria. He'd eaten. Really eaten!

The daycare owner's daughter, K, texted me another picture in the afternoon- he had yogurt all over his face and looked pleased. Wow! More food.

I got off work an hour early (things are VERY slow at work right now) and that allowed me to go pick him up myself.

When I got there, he was playing with a balloon. He glanced up like "oh hey." and went straight back to playing. Crushed! He didn't even miss me! I sat down next to him and he smiled a half smile at me. But a minute later, he reached to be picked up and would not be put back down. Maybe he missed me a little after all.

He'd had a great day. He only napped about an hour, but had been in a good mood all day. And the food stuff was amazing.

Got home and he passed out immediately, but still only slept a short time. You could tell his routine was screwy.

This morning went about the same. Had to wake him, but he was in a good mood. Got to daycare (with his food this time) and had a few minutes to spend. Well, this time he was on to us. As soon as I sat him down, he started whining. His puffed his bottom lip out and looked very sad. K was great about distracting him, but as soon as she'd stop and he looked at me, he'd start to whine again. My heart was shattered. I know I'd wanted him to miss me the day before, but I take it back now. I just want him to be happy.

Eventually I had to leave. When I checked on him later, they said he never worked up to a full cry. He'd just whine, they'd distract him and he was okay.

Feeding was more usual for him. Five spoons of baby food. Which is about what I could get into him at home. I won't lie and say I wasn't disappointed. I know I'm a fool for thinking there is a magic answer, but I so hoped that's what it was. Even as much as I don't want to be the problem, I'd be happy to be so if it meant we could help him.

The worst part of the day was that at naptime, I got a call that he was crying and wouldn't stop. They wondered if maybe they'd done something with his feeding tube that could have hurt him. (Unlikely) I think he was just over-tired and wanted his mom. I suggested trying to just rock him. Then I hung up and felt sick. Knowing my baby is somewhere upset and I couldn't run to him and fix it was killing me. I toyed with asking to leave work and just go, but quickly realized that I couldn't run to his rescue every time he was sad. Both he and his daycare providers would have to work it out. But it killed me a little.

Fortunately only a few minutes later, K texted me to say that as soon as they called me, he went to sleep. It turned out that he only napped about a half hour, but I guess that was enough to get him through because he was happy again after that.


I got another call just before I left work (again, an hour early, so I could go get him) that they found a red spot on his chest and were afraid he had some sort of infection from his tube. That didn't make much sense to me since it wasn't near the tube, but I think they're just unsure of how the tube really works. I hate that they're so uncertain of it, but I know I felt the same way when it was first put in. I know they'll adjust.

By the time I got to daycare (about 20 minutes later) the spot was gone and we decided he'd just rubbed against something. No big deal.

This time, he actually smiled when I came in. My heart warmed. They still said he'd had a good day, though you could tell it wasn't with quite the enthusiasm as the first day.

Again, as soon as we got home, he passed out. This time he slept more than 90 minutes and we woke him so he'd still go to bed at bedtime.

All in all, his first week at daycare could certainly have gone worse. And it's probably be harder on me than him. Probably in a week or two, we'll both be adjusted to our new normal.

Yesterday, I honestly felt good. It was actually kind of nice to talk to other adults and feel like the old me for a bit. But today, it really hit me. This is our life. Me wondering how he's doing, worrying if he's happy enough, racing to get back to him as soon as I can. I know we'll both adjust soon enough, but today I feel mostly sad. I missed him today. A lot. And I know that's not likely to end soon.

But, on to better things. Some pictures!


All dressed and ready for my first day.



Packed into the car and ready to go.



My new daycare is so pretty!



Look, I already have new friends.



The 2nd day at daycare wasn't so bad. Look at all my playmates!


--Trish

Monday, August 17, 2009

Chocolate Pudding

A bit of insomnia tonight. It's after 3 and I got tired of tossing and turning in bed, so I gave up and came to stare mindlessly at the computer.

I was reading a blog post about a year ago and thought I'd go back and see where we were a year ago. I do so periodically. The difference between this time last year and this year is always profound.

In some ways our days in the NICU seem so fresh. In others, a million miles away. Recently a friend gave birth at 32 weeks and while talking to her through her experiences, it's meant a bit of reliving it for me. That's both good and bad.

On this day last year, Robbie nursed for the first time.

What an amazing day it was. I love re-reading that post because it was truly one of the happiest moments of my life. I really, truly felt like a mom, maybe for the first time, that day. I was finally doing something for him that no one else could. Sure, other women could make milk, but I was making milk made just for him.

This year, he barely eats anything at all. He still gets the milk made just for him, but now it's pumped into a port into his stomach instead of gulped by a contented face.

Today I did some shopping. I heard a little boy, maybe 4, ask his mother for some vanilla and chocolate mixed pudding. My eyes welled up with tears in the aisle. Will Robbie ever ask for pudding? He's not speaking with purpose yet. Will he learn the word pudding? Will he be able to form the word correctly? Will he ever want pudding? Be willing to eat it? All these are questions I don't have the answers to.

But I'll always have that day last year, when he latched on despite every one's assurances that he wouldn't. I'll never forget the moment when he smiled and the tears sprang from my eyes. I didn't have a hand free to wipe them, so I just cried happiness onto his head.

I did the same tonight when I snuck in to rock him a little. He's a big boy now with no time to snuggle his mom when he's awake. He'd rather look around, grabbing at things he shouldn't have, grunting because he wants to practice his standing up. So when he sleeps, sometimes I sneak in and pick him up and rock him. He grunts and whines a little, his sleep disturbed just enough to protest without opening his eyes. But then I rock and whisper how much I love him.

In those moments, the answers to the unasked questions don't matter. All that matters is that he's my son and I will always love him. Even if he can't ask for chocolate pudding.

Goodnight,

Trish


...


The 16th was the anniversary of my first baby's due date. Rest in peace my baby angel. You'll never be forgotten or unloved. I hope you're having the very best chocolate pudding in heaven.

Saturday, August 15, 2009

GI visit + pics

This is a copy of the post from Robbie's blog from Tuesday.

Robbie had a regularly scheduled pediatric GI visit today. We saw the nurse practitioner in the office whom I happen to love. She has 26 weeker twins herself, so she's a member of "the club."

Robbie was less thrilled about the visit. He really had developed quite the phobia of doctor's offices. He was fine in the waiting room, but as soon as we walked into the exam room, he started crying hysterically. He cried all the way through being stripped, weighed & measured and most of the way through our discussion about how things are going.

The good news: He weighed in at 20lb 15.5 oz, measured at 26 inches. That puts him on the growth chart for weight. About 10th percentile. Everyone oohed and ahhed over how chunky he is. She even called in the doctor to marvel over the change. There were lots of giggles about his "man-boobs" (or "moobs" as the nurse practitioner referred to them.)

The NP said the computer yelled at her because his weight gain was so great. That's both good and bad, of course.

Yes, it's good to see him gaining and looking healthy, but there are limits as well. He gained 4lb in the month of July. That's double the maximum they like to see.

I explained that we're finally getting a handle on the puking and how much his caloric needs have changed. She approved of the changes I was making and asked to tweak them just a bit more.

Right now, the plan is to keep him at 90 kcal/kilo for 6 weeks. We'll see GI again at that point for an official weigh in. If he's still gaining too much at that point, we'll drop to 75kcal/kilo for another 6 weeks. If he's STILL gaining too much, he'll earn himself a metabolic work up to make sure nothing else weird is going on.

She's not concerned about one banner month of weight gain, particularly considering how poor the previous 13 months were and how far behind he was. She thinks he just hit a catch-up growth spurt (common in preemies) and we should be fine, but we will watch to make sure. Her hope is that he maintains his growth curve of 10 percentile.

Everything else was good. We walking about his development. It's always nice to talk to another mom who truly understands the battles we face. Her twins are several months older than Robbie, so it's always nice to hear how they're doing and hear how they're overcoming their obstacles. It gives us hope.

All in all, it was a good visit.


And of course, some recent pictures!

Lookie! My feet finally touch the ground in my jumperoo.



Hanging out in mommy & daddy's bed with one of the sleepy kitties.



You lookin' at me?



My OT is making a Robbie salad!



I'm a rockstar- just like grandpa!


--Trish

Wednesday, August 12, 2009

Going back

One week from today, I return to work. I'm dreading it with every fiber of my being.

Yes, there are lots of plusses.

We really (REALLY!) need the money. We did not have the savings to take a year off of work. That was never the plan. But as they say "God laughs at plans." We've borrowed from our retirement, we've lived in credit cards, we've played "shuffle the bills" to keep us out of bankruptcy and we've made it as best we can. God has seen us through. There's no way around it because we really only had enough money for about 4 months at home and we've managed to stretch that into 12. But we're officially at the end of our rope. If I don't go back to work now, we'll be bankrupt. Period.

Daycare will provide great socialization for Robbie. His therapists all agree that no amount of therapy or parent-lead activities can replicate the benefits of being surrounded by peers.

Regularly speaking to adults and seeing the outside world will be good for me as a person, as opposed to me as a mom. I really have become consumed with raising Robbie. And while I don't think that is a bad thing, I do miss the interaction with adults that doesn't center around a child.

At dinner with some friends (all of whom are infertile) I found myself struggling to have something to talk about that wasn't "God, Robbie just won't nap!" which really isn't what a bunch of infertile women want to hear about. It will be good to expand my horizons a bit.

But all of those benefits really pale in comparison to how incredibly sad I am to have to leave him. The longest I've been without him since he's come home from the hospital is about 6 hours. And that was only twice- once for a long medical test at the hospital and once out with some girlfriends. The only person who has ever babysat is my MIL and that was only an hour or so while David and I had a date.

And now I'm going to have to leave him for 9-10 hours a day. Most of his waking hours. Depending on which shift I work, we might have a couple of hours in the morning- mostly spent getting ready and working through his pukey time of day. Most days I'll get home just in time to put him to bed.

It breaks my heart to know there will come a day when he wants Julie (the daycare owner) or Katie (her assistant) instead of me.

And I know I'm so, so blessed to have spent a year with him. That is SO much more than most working American women get with their babies. But it still just doesn't feel like enough.

I worry, too, about germs. While we haven't lived in seclusion since May, we are still pretty careful about hand-washing and germ-spreading. And now he'll be in a daycare with 4 other small children who are too young to understand not to rub their snot on each other. He's GOING to get sick. There is just no way around it.

My biggest fear is that he gets sick and dies and I'll know that if only we could have managed our money better, I could have stayed home and he would have been okay. Yes, my mind is dark and twisty like that.

I think about little things, too. Will I get to see his first steps? Hear his first real word? Will I really get to know him?

My coworkers tell me things are slow at work and they're giving a lot of time off. I'll probably be taking a fair amount of it. But that is a catch 22 as well. The more I work, the more I earn, the faster we can pay off our (massive) bills and the closer I am to being able to stay home with his permanently. But that's such a lofty goal, so seemingly unattainable, that it's going to be hard to turn down the opportunity to come home and kiss his beautiful face when given the opportunity.

I know I'm not the first women in history to struggle with balancing work with child-rearing. I know many women truly embrace their jobs and love the productivity it brings and even find that the time away from their child makes them a better mother because they get a break. Maybe in time I'll feel the same way.

But right now? Right now I'm just sad. I'm going to miss him so much.

--Trish

Saturday, August 8, 2009

Progress

He's eaten at least two puffs every day this week.

Yesterday he attempted to eat a little piece of bread. He gagged on it and spit it out, but he TRIED.

He's quite happy to be drinking water out of a sippy cup.

This is definitely progress.


--Trish

Thursday, August 6, 2009

Epidemic

It's a freaking epidemic of assvice.

Today we had a meeting with Early Intervention to set up the nutritionist for Robbie.
The reason I asked for a nutritionist is because Robbie doesn't eat. He's old enough now that he needs nutrition beyond just formula or breast milk. But since getting that nourishment into him is...uhh.. challenging.. I asked for a nutritionist to help work around those issues.

Her advice? "He needs to eat more solids."

Well, thank you Captain Obvious.

I explained that I'd LOVE for him to eat more solids, but so far, he's been unconvinced. She got a bit of a snotty tone and asked "what his therapists have to say about that." All I could do was tell her that his therapists, doctors and I are working on it, but it's likely to be a very long time until he's able to rely on oral feedings for survival.

Ay yi yi.

She also gave me a lecture about Robbie having gained too much weight this month. I realize 4 pounds in a month is too much. Hell, I was the one who said "he gained too much this month, but it kind of snuck up on me." Still, I got a lecture.

She also told me that the reason he doesn't want to eat solids is because I'm feeding him too much. He gets too many calories, so why would he want to eat?

Ummm.. Robbie wasn't eating enough back before he had a tube; when he was literally consuming barely enough milk to keep him hydrated, never mind nourished or growing. He was literally starving himself, malnourished and in the hospital. He hasn't been on a growth chart- even the preemie chart- until this last month. 13 months of starving, 1 banner month, and I get all of this.

Yes, we're tweaking his calories, but when a child goes from needing more than the max calories to grow to less than average, there is a bit of an adjustment period. Give me a break.

Anyway, I was actually pretty dumbfounded today. I thought of all the things I should have said after she left. But she'll be coming back for a "real" session in a few weeks and we'll be having a real chat then. Either she can join team progress, or she can go away.

Honestly, if all she has to say is "eat more solids" she's doing us no good anyway. I have a brain in my head. It's full of common sense. If I could simply feed him more solids because I wanted to, I would never have called for a nutritionist in the first place!


Anyway- in related, exciting news- Robbie ate a puff yesterday and two today!

Yesterday I put some on his high chair tray while I went to make him some juice (we're doing some straw practice as part of his therapy) and when I came back, he had a Puff in a pincher grasp (woohoo! Pincher grasp!) and he was licking it. I just sat and watched. He managed to put it in his mouth and use his 2 little teeth to crunch on it. Eventually he got it in his mouth and started gnawing on it.
A couple of times, he put his fingers in his mouth and I thought he was going to try to swipe it out, but he didn't. He swallowed it! NO GAGGING! NO PUKING!

Today, we tried again. The first one, he palmed it and had some trouble getting it in his mouth. I asked if I could help. I touched the Puff to his lips and he opened his mouth. Same scene as yesterday, lots of gnawing, a very unsure look on his face and the fingers went in to check it out several times, but he got it down.

So I tried a 2nd one. This time I handed it to him between his thumb and forefinger in a pincher grasp and he was able to self-feed again. That one got spit out, but he let me scoop it up with my finger and put it back in. I don't think he was spitting it out on purpose, I think he was just kind of figuring out his tongue and it came out. After I put it back in his mouth, he swallowed it. Again- NO GAGGING! NO PUKING!

If I were physically capable of cartwheels, I would have done them in the living room.

I know things can (and probably will) get worse again. As all the doctors and therapists keep telling me, reflux and feeding issues are a roller coaster. They will get better and worse all the time. But right now, it's improvement. He ate something with texture. That's cause for celebration.

Now if people would just stop acting like I don't try to feed him, I might stop feeling mildly homicidal on a regular basis.

--Trish

Tuesday, August 4, 2009

Gaining

this is a C&P of a post from Robbie's blog

...

We spent the weekend with Robbie's grandma and had a great time.


There was an ugly incident with a diaper explosion at Lambert's, but we survived without bloodshed. (Though I did consider it with the steady stream of people coming through the bathroom who couldn't be bothered to help the mother with the screaming, naked child get a paper towel out of a jammed dispenser.)


Unfortunately, I haven't been my usual shutterbug self the last week so I don't have a lot of pictures to share. (Hey, there could have been pictures of Robbie naked and screaming in a public bathroom! Count your blessings!)


On a brighter note, the boy has surpassed a big mark- twenty pounds! He gained FOUR pounds in the month of July. Goal is 1 lb/month. Ideal is 2 lb/month. So this is amazing. I haven't increased his caloric intake in weeks, he's actually now getting much closer to a normal amount of calories.


Normal, healthy infants usually take 100 kcal/kilo. There is a 20 calorie span either way that they should fall between. In the past we've had to keep Robbie at AT LEAST 120 calories/kilo to gain a reasonable amount of weight. It's been very hard because the more you feed him, the more he pukes. That, in turn, makes it harder for him to gain weight, and of course, then you need to feed him more and he pukes more.

With his massive weight gain this month, he's now getting about 96 kcal/kilo. Back in Robbie's NICU days, this would have led to either zero weight gain or a weight loss, so this is truly amazing!


The last few weeks, we've established a feeding routine that has significantly reduced his vomiting. Most of his feedings are now pumping in over 75-90 minutes. He is much pukier in the mornings, so that one goes in over about 3 hours (and he still pukes most mornings) but the daytime routine isn't so exhaustive.


Now instead of puking 15-20 times/day (which we did for months on end), it's more like 2-4 times/day. I realize most people would think "wow, he pukes every day?" but for us, that's miraculous. It's mostly in the morning, or if he gets too active while being fed.


The time involved in getting the feedings in can be challenging, but it's working and totally worth it. He also seems to be almost completely pain free (obviously puking isn't much fun, but he pukes and it's over, rather than screaming in agony for 45 minutes at a time.)

We're definitely nowhere near "normal" but the relief that comes with not having to watch him in constant pain makes us feel so much closer.


Obviously it's working because keeping those calories in him instead of puking them out is obviously working. Robbie is downright pudgy these days! It's getting challenging lugging him around, particularly in the carseat. I've never been so happy to be giving my muscles a workout, though.


I don't have a lot of pictures to prove it, but hopefully this will hold you over until I can get some more. I promise to do better this week.




Talking to my doggy.




Getting a "cookie" from my cookie jar.


A morning snack- a syringe!







--Trish

Monday, August 3, 2009

There's no place like home

"I want to talk to you about some things when you get here."

Every one's favorite words to hear from their MIL, eh?

Now, I should be clear. I really like my MIL. I honestly won the MIL lottery. She's nice, kind, funny, smart, she doesn't coddle David, often takes my side in disagreements, is helpful and supportive, genuinely listens and is just an all around nice person. I love her ninety nine percent of the time.

The "things" she wanted to talk about involved Robbie's puking. She said she and some friends had discussed it and prayed about it and "had some suggestions."

Are you cringing yet? Because man, I was on edge.

Of course, traveling with an infant isn't exactly easy anyway. Then add a kid who comes with a fair amount of medical equipment and it can lead to a slightly cranky mom.

The trip down went well. Robbie seems to have a 2 hour threshold for the car seat. It's a 2 1/2 hour drive, so we stopped and got some water and let him stretch his legs. He was still a bit fussy for the last half hour, but we sang some songs and he managed.

When we got there, my MIL was really in a mood I'd never seen before. If I didn't know better, I'd have blamed PMS. Really out of character. She was full of assvice.

At one point she told me I should go to bed at 9:00. When I said that I couldn't, she snapped, "yes you could!" I don't know that I've EVER heard the women snap before, so I was taken aback.

I explained that after Robbie goes to bed, I wash bottles, then make bottles for the next day. She told me I could do that now. (It was a bit earlier in the evening.) I then explained that I also have to pump, Robbie gets medicine at 11:45 and I start his night feeding at 12:30.

Then she tells me that I don't need to give him his night feeding. This floored me. He gets 25% of his daily calories between 12:30 and 7am. I, of course, told her that he DOES need it. She said "but he's big enough now, he shouldn't need it." Ay yi yi. Did she have a meeting with my family?

By that time, I was getting testy and explained the 25% thing and that yes, if I reduced his diet by 280 calories per day, he'd not only stop gaining weight, but probably lose. And that if I tried to add those calories to his day feeds, he'd puke even more. Yes, he needs the night feeding. She appeared to pout.

I was honestly puzzled. I've NEVER heard her this way.

Fortunately by Friday morning, she seemed to be back to her old self. She mentioned Robbie's puking and I bit the bullet. "So you had some advice about that?"

She was nice about it, and said "Well, I was just wondering if you'd ever offered him milk in a sippy cup."

Seriously. She HAS been talking to my family, hasn't she?

I really wanted to say "Offer him something to drink?! WHY DIDN'T I THINK OF THAT?!" but I didn't. I simply said yes and that even if he would drink milk from a cup, it wouldn't keep him from puking. The milk comes up no matter what. She seemed to accept that fairly well.

Later, I reported the conversation to David and he was confused as well. "Why would she think that would keep it in his stomach any better?" I dunno.

Anyway, other than Thursday and that conversation, the weekend was pretty nice. Robbie didn't sleep great, but that was probably to be expected. He hadn't been sleeping great at home, either. He's working on some teeth (Dear God, are they EVER going to come through?) and has had a low grade fever off and on for a week. I even took him to the doc on Wednesday to make sure it really was "just" teething and nothing more serious. (All clear. She agrees it's likely the teething.) So add the not-great-sleeping to the sleeping-away-from-home thing and we did have some busy nights. But nothing we couldn't handle.

But we got to hang out, have some great food, do a little shopping. My MIL is REALLY great with Robbie, even doing his therapy exercises with him. It was a nice break, really.

This afternoon we had lunch at a popular local restaurant where Robbie baptized me with his first public diaper blow-out. I won't give you the blow-by-blow (pun definitely intended). But I will ask that if you ever enter a bathroom and encounter a harried woman with a screaming, naked child trying to get paper towels out of a jammed dispenser, I BEG of you to offer her some assistance. I'd have given 20 dollars to someone to stand there and hand me paper towels.

In the end, Robbie recovered and I managed w/o cussing anyone out. Though it was a close call when I overheard a neighboring table chuckling about us as we returned from the bathroom.

Anyway, we made it back home this afternoon and Robbie promptly took a 2 hour nap (and was still going, but I woke him up so I could bathe him and get him ready for bed) which he didn't do the entire time we were gone. I think he was as glad to be home as I was.

There's no place like home.

--Trish