Packing 'em on!

Max has a cold, so I took him to the doctor yesterday. Even something as simple as a cold can be a big deal, so we'll be seeing the pediatrician a LOT! He had a slight cough, so they sent us to Children's Mercy for a chest xray. Everything looks just fine. It's just a cold.

On the plus side, I did have them send a copy of the xray to our neo-natologists, hoping they can get another look to see if his cracked ribs are healing up.

And he continues to pack on the pounds! Our littlest man was up to 11 lbs 15 ozs.... almost 12 pounds! That's almost 6 times his birth weight!!!

Told you so...

And the locusts are here... as our favorite babysitter said last week when the A/C went out:

"I'd say go check into a hotel, but with your luck, you'd come home with bed bugs."


Exactly...

This photo is my rose bush, just outside the front door.

Another Vikings fan

Game #3, I finally had to get Max in some Vikings gear... and I think he may be their good luck charm, because they finally won one!






Daddy was proud to have all 3 kids dressed for game day, even if they didn't stick around to watch the game with him.








Max's outfit is third generation, worn by both Ella and Alex before him.

A boy and his Doggie...

This why I'm a dog person. Sweet Daisy Doodle has never left Alex's side while he's been down and out with this surgery recovery.

This is the night after surgery, last Saturday when I had to take him to Children's and we had to stay.

Troy ended up putting her in Alex's room, where she normally sleeps, so she could wait for him.

We love our Doggies!!!

Waiting for the locusts...sleeping in lingerie!

Because we've already had the plague, etc... things have been utter chaos around here this week! Not only did we have Alex's surgery, he was in and out of the hospital, everyone was sick at the same time, and then, our A/C went out! Troy was surprised last night when I put on some slinky, silk jammies from our honeymoon. They were silky and cool and it was sweltering!

Today was misery! One boy in pain when it's 85 degrees in the house and the other boy spitting up everything he eats did not make for a please 2 days!

I had the baby stripped to his diaper. (looking rather fitting for a trailer park) Alex has been in his pj's since surgery last Friday, and I was covered in pain meds, puke, and sweat. What a glorious sight we might have been! (and smell for that matter)

The good news, my wonderful friend Dana, whose family owns a home building business, hooked us up with the company they use for heating and cooling. They were able to get our parts covered under warranty (we just replaced the AC 2 years ago) and they found the replacement parts we needed to get it fixed it in the same afternoon!!!

We are so enjoying the cool tonight, I think I might sleep in flannel jammies and warm socks...

In and out of the hospital

Alex was admitted to the hospital overnight. I took him to urgent care at Children's Mercy after talking to the nurse information line. He was having constant pain and we were nearly sitting on him, just to get the pain meds down. He said they burned his throat. That made it increasingly difficult to get him to swallow anything and we were getting worried about dehydration.

Also, he sounded like he had croup. I had asked the surgeon on call about it, and he indicated it was probably just all the drainage coming out of his head onto his vocal chords. Turns out, it was strydor, inflammation of his upper airway from the breathing tube during surgery. It was bad enough that the doctor heard him as soon as we arrived in the urgent care and told me we'd likely be staying overnight so they could make sure his breathing was not being compromised.

The pain medication issue, was solved almost immediately. Alex's body was NOT metabolizing the tylenol with codeine, so they tried a different med, which usually works better with kids, oxycodone with codeine and it was a HUGE difference! Not only did it not burn, so he gulped it down like a champ, it controlled his pain immediately and lasted for the full time until his next dose. This made things SOOO much easier.

He started drinking like a champ and had powerade, apple juice and water all in a 1 hour period.

They gave him a breathing treatment and an oral steroid which cleared up his breathing noise but it was about 3am by the time this was resolved. He had a chest xray to make sure there was no pneumonia and everything looked good, but the doc still wanted us to stay overnight, to make sure he would not need additional steroids or IV fluids.


Alex slept for quite a bit in his wagon in the urgent care. We finally got into a room upstairs around 4 this morning and we both collapsed into his hospital bed together until about 730 when the nurses came into check on his breathing again and give another dose of pain meds.

The doctor saw us around 11 and by 1, we were headed home.

He's had a nap and some cheese pizza and pudding and is doing REALLY well. We hope this will be a much different and more restful night, for ALL of us!

Thanks to Daddy for holding the fort down at home! He had Max all to himself for the last 2 nights since Alex's surgery and that's a job we've been tag-teaming. Max was having reflux issues, needed to poop and was generally crabby and missing his mom! It was a rough night for them as well. Luckily, Ella was very cooperative and gave him no trouble overnight.

Thanks to my friend Tara, who showed up at the hospital this morning with a much needed chai! Mommy was tired and it kept me going until I crawled into bed with all 3 of my babies this afternoon.

The agony of the tonsil and adenoidectomy!!!

I don't know what we were thinking! How did we not realize this would be so horrible?! Why is my little guy in such pain?!

Alex hurts so bad he won't even swallow his own spit. He takes pain medicine and in just an hour or less, he's in agonizing pain. It hurts him so much his heart races and he is drenched in sweat. He's white as a ghost and he looks like he may pass out.

The only thing he wants to do is lean on me and drool into a burp cloth and cry. It's excruciating for all of us. We've tried ice cream, Popsicles, smoothie, pudding, you name it, and he just cries.

The doctor let me increase the amount of pain meds, but it's not touching him. He's had 3 doses today and only 15 minutes of sleep, after which he woke up screaming from the pain.

He tells us it could be like this for 7-14 days! Holy crap! Poor Max, I couldn't even finish feeding him a full bottle today, because Alex was doubled over in pain. I can't just lay Max down, because of the spitting and reflux, he'll choke and turn blue on me. I try putting him on his tummy so the spit up can just run out, that seems to work and them he just has to scream while I'm calming Alex, which can take up to 30 minutes or more, while the pain medicine kicks in.

How can we land a man on the moon, cut open hearts, replace organs, and this "minor" surgery is still so excruciating? I really don't think it's minor at all.

Troy and I are tag teaming this weekend. One of us will sleep on the trundle bed in Alex's room. We have to set an alarm and get up every 4 hours to give him more pain meds, so we stay ahead of the pain. We also have to make him talk and check for bleeding.

The other lucky parent gets to sleep with Max and listen for the reflux or the breathing alarm and get up every 4 hours to feed him and keep him upright for an hour before he goes back to bed.

Oh, the joys of parenting... so worth it, but so hard to see our boys both struggling right now. Poor Ella, thank goodness she's feeling a little better, today was her third at home with the bacterial lung and ear infection. She'd better stay healthy for a few days, or we're doomed!

Highly Contagious!!!

Not the words you like to hear when you have a immuno-suppressed baby in the house! But when I took Ella to the doctor today, it wasn't good.

She's had a cough for almost 2 weeks. I took her to urgent care over the holiday weekend and they check her lungs, ears, etc... and told me it was a cold or allergies and we'd have to wait it out. So we've been waiting. No fever, she's felt okay, gone to school, etc...

Then last night, she complained at dinner that her ear was hurting. And by midnight, she had a fever or 103. That cough has turned into a horrible, wet mess, and the doctor says it's a nasty bacterial bug called Mycroplasma. It's bad enough that it's close to walking pneumonia and both of hear ears are infected to the point her ear drums are likely to burst. Almost overnight this changed...

So I'm coughing and Troy's coughing and Alex is coughing. We ALL have antibiotics and Ella and I both has shots as well to day to kick start our recovery. Then there is Max. So far, our little fighter is the healthy one of the family. He's eating, sleeping, pooping and showing no signs of having contracted this. But it's difficult to keep him from the germs with all the coughing. I was worried about how we could keep this up. He needs snuggling and feeding and evening bathing and changing multiple times may not be enough. We're NAZIS around here with the hand washing and anti-bacterial gel.

So I talked to the pediatrician and they are are concerned about this bacteria. It's VERY contagious and they don't want to wait for him to get it. Because his body might not be able to handle it. So tomorrow, we're going to get a good weight, and they'll put him on an preventative antibiotic as well. Hoping to keep him safe.

Alex is still on for his tonsil and adenoid surgery in just 2 days. I talked to the surgeon and they are having him start his post-op antibiotics early, plus he'll get IV antibiotics during surgery. As long as he doesn't have any fever, they'll go ahead with his surgery as planned.

In the meantime, we continue to try to disinfect this place! We just had a sick Papa here over the weekend and after 8 loads of laundry, I thought we were caught up... so much for that idea!

Not ready to "reunite"

Yesterday was the annual NICU reunion, and we just couldn't do it. The weather could not have been more perfect. I had wondered if it might be too warm for Max. But it really turned out to be a nice day.

Turns out, we've spent these last 26 days just looking forward. Max has been adjusting to life at home and we've been adjusting to having him here. There have been moments of exhaustion, moments of worry, but mostly, moments of joy. We are finally a family, all of us together, under one roof.

His brother and sister hold his hands and sing and talk to him. They make him smile and watch in wonder at all they do. The dogs will brush past his swing with a little sniff and he grins. Troy and I fight over who gets to hold him and feed him and snuggle with him. He is a part of us, part of our family, and it took us 123 excruciating days to get him out of that NICU and with us, where he belongs.

We are eternally grateful for all the doctors, nurses, RT's and NNP's did to save Max's life and make him well and strong. We miss some of them so much and we can't wait to catch up and have them see how far he's come already... but there is just something that we're not ready to go back to.

I made that trip to the NICU, every day (except Father's Day) for 123 days after Max was born. I parked, trudged inside, past the reception desk, past the cashier, past human resources, up the elevator to the 4th floor, signing Max's guest book and filling out paperwork at the NICU reception, through the hand scrubbing and washing and rinsing, and finally back to Max's room. It was a routine, going through the motions, I think I could do it in my sleep. I think I DID do it in my sleep most days, we were in shock and just going through the motions was the only way to keep going. EYES ON THE PRIZE!!!

Now we're here, we're got him! He's doing well! He's eating and sleeping and pooping and growing, and I can't bring myself to look back. Not yet. I am grateful for those 123 days. Each day has been a gift and I'm glad we made it to this point. But people ask questions about those days, and there is MUCH that I just can't remember. I don't want to, I just want to look forward.

We'll go to the NICU clinic this week, for his follow up appointment. It's his first, depending on how his bone labs and his direct billirubin look, it might be his last. We'll be seeing Dr. L. (the same doctor who met with Troy and I, that first night in the hospital, after my water broke, but before Max was born. He's also the doctor who was there for Max's birth, who admitted Max to the NICU, and started us on this incredible journey. It just seems appropriate, that we started there with his help and counsel, and now, one month after Max came home, we'll see him again. It's just another step in Max's life, but as long as we're moving forward, and not back, it's a step in the right direction...

Family photos,... and little Mr. Max

(Max and this monkey were the same size when we received it, just after he was born.)

We're growing a boy!

I took Max to the pediatrician today to check his weight gain, talk about his reflux, his constipation, etc...

He weighed in at a whopping 10 lbs. 11.8 ozs! The doctor was thrilled with his weight gain! While he's still in the 0 percentile range since he was SOOOO early, his growth is moving up in almost a vertical line on the chart, not just an uphill slant.

She put him on a medication for his reflux, and hopefully it will help with the pain he's having. He spit up on my 3 times while we were in her office, which the medication won't fix, but it can help with the acid, which should make the reflux less painful.

He's been waking up from the gurgling in his throat. It's so loud, we can hear it across the room and it starts going up the back of his throat into his nose, which we then suction out. He screams because it hurts so much, and sometimes, we feed him a little, just to get a coating in his throat to help ease the pain. It stinks!

He's doing so well with his feeds! He loves to eat, eats every 5 hours overnight and every 3-4 during the day. He's up to about 120mls at each feeding, so it's no wonder we're growing such a big boy!

Playtime...

After hours calls

Okay, so I'm staring to feel like the crazy lady. I've had to call Max's pediatrician twice since we brought him home. Both times, it was something that seems kinda silly, and I probably would not have called with the other two kids, but with Max, it's just, well different.

First was last week, Max wasn't pooping. It had been more than 2 days. Well, we've been through this before. Ella once went more than a week, we changed formula, used Karo syrup in her bottles, and eventually, had to use slices of a suppository to help her out. It's just part of being a baby, learning to push that poop out.

But with Max, you can't just put something in there to help and you can't change his formula because of the bone issues and you can't give him anything extra by mouth, because of his bowel sensitivity... so we decided to call.

The pediatrician was very kind and said yes, we should call on this, even after hours, because Max's bowels are not typical. He did poop, but it took 3 days and we did resort to Karo with the doctor's okay.

Tonight, it was his head that had me worried. His soft spot was like a big divot on his head! He is losing his hair, so it's pretty visible, and for whatever reason tonight, that "soft spot" was really sunken in. I called the ask a nurse line first and went through everything, how much he's eaten, how many wet diapers, yes his mouth has saliva, yes he can make tears, no he's not lethargic, no fever, etc... but they told me to have the doctor paged, so again, I make the embarrassing call.

I feel like a first time mommy when I do this. I know a sunken "soft spot" can be a sign of dehydration, I know the other symptoms, I know he seems fine, but Max makes you second guess everything.

Luckily, she was fine with this one as well, and I've thrown in a couple of extra little bottles tonight to make myself feel better, and yep, it's not sunken in any more.

Just call me the crazy lady!

The best store EVER!

Ella had to to wait 2 weeks from her birthday to get the present she really wanted. She asked for an American Girl doll and after months of looking at the catalogs, telling us just what one she wanted, we gave in.




She walked into the store, carrying her catalog, looked carefully at all the dolls, clothes, accessories, and then told the clerk, "I want this one," pointing to her catalog with the dog eared page.




It was great to see how overwhelmed she was by everything, and how exciting it was for her to get that big red bag when we left. It was almost as big as she is, but she carried it herself, so excited to bring home her first American Girl doll.



(Alex of course, just loved the box!)











I think she's named the doll Tess... but we'll see if that sticks.

Best Friends...

Max made his first friends in the NICU. He and Marco could time things so that the nurses were running back and forth between their rooms all day and night. Now that Marco is home with his Dads in New York, Max needed some playmates closer to home.

Luckily, my friend Kimmie delivered Mr. Jack just 2 weeks before Max arrived. It's funny, because we knew we were both having boys, knew they'd be the same school age, talked about preschool together, etc... but we had no idea they'd come to close together! Max's early arrival kinda threw a wrench into things. But Kimmie and Gavin were there for us, even with a newborn of their own. Gavin dashed to the hospital at 7a.m. to pick up our kids when Max had emergency surgery, and they took the kids in on several occasions during Max's NICU stay.

Kim kept telling me that soon, Max and Jack would be playing together, plotting how to drive us crazy, and we'd be driving carpool from the nursing home one day. Well this week, these two little trouble makers finally met, face to face, and it was great to see them side by side!

Jack kept me afloat for those 19 days when I couldn't hold Max. I would go pick up the kids and Kim's and just snuggle and love on Jack. It's great to see how much Jack has grown and it reminds me, that even though I think Max is HUGE now, he's nowhere near the size a normal 5 month old should be.

Someday, he'll catch up and he and Jack will run and play and cause trouble together.

Since Max came home...

A few photos... I feel like I'm neglecting to post photos lately. He's growing SOOO fast! We're sure he's up to 10 lbs. now, although he doesn't weigh in for another 2 weeks...

The kids LOVE having baby brother here, he's being introduced to the doggies. We've had Grandpa Robinson for a visit, Ella's birthday, Daddy's birthday, back to school, etc...