My boys

A wonderful morning with all of my boys in their pajamas! A handsome bunch!

Owen

Owen loves helping me in the bathroom. If I'm going "potty" then he hands me toilet paper. If I'm brushing my hair, he wants the brush afterwards to brush both of our heads some more. This morning, he opens the bottom drawer and pulls out two tampons. He was smiling like he found gold! He carried them around the house for quite some time... I just kept laughing... blackmail photo in the future! And this is Owen last night after we striped him after eating/wearing strawberry shortcake. I don't know why we don't let him run around the house naked more often. We all found it really cute and funny!

Strawberry Shortcake

Me and my babies. Tonight for dinner, my friend Christy brought over an amazing meal of steak, salad, green beans, potatoes... and to top it off, strawberry shortcake. Owen LOVED it...

He ate every last bite... or at least wore every last bite.

Wore so much, that we striped him down at the table, then he tried to text Christy how good it was!

I have a few more pictures of naked Owen to post, but Henry is hungry!

Welcome Home

We are home. Owen was napping when we got home. I remember how excited he was when he woke from a nap to find a Christmas tree in the house, I hopped he would be just as excited when he woke to find his baby brother here. It was nice that Henry was sleeping when they met. Owen loved looking at him, and touching him. After about 2 hours of him STILL BEING AT THE HOUSE, Owen politely said "bye bye baby". While he may have been a little disappointed that we didn't listen to him, I think he's overall happy that we are all home.

Owen, meet your new brother! First bottle at home!

Downstairs sleeping arrangements.

If I stand REAL tall... I think I can see baby. So sweet and gentle. (so far)

Officially home as a family of four!

A day of firsts and lasts...

After 16 days in NICU, Henry got to come home today. It's been a long journey, but we made it! Now the sleepless nights can begin... and I can't wait!

Here's Henry in his going home outfit... the one I brought to the hospital 16 days ago. Look at how proud Lucas looks! One last bottle at the hospital.

One last snooze in dad's arms in the NICU. Notice his hand placement (not posed)... maybe that's what caused the small jaw!

One last rest in the bucket they call a crib. We call it a glass cage of emotion (a little Ron Burgundy reference for those who don't know!)

And... his first car ride home. One of us has to sit in the back to watch him... so the four of us won't be travelling in one car for a while.

I am so thankful to be home! I am so thankful that while we had to be in NICU, we were blessed with wonderful nurses, doctors and the most lovely car seat expert EVER! I am so thankful to our wonderful friends and family. I am mostly so thankful for a wonderful, loving husband. I know I wouldn't have made it through the past 16 days without him... now, onto the next adventures!

Tradition

Each time Lucas' dad, Bob, gets a new grandbaby, he gets a tattoo of their footprint. Libby and Owen's are on his chest... his newest two babies are on his arms. Just look at the difference between Kaiya's and Henry's... we should just call my baby Bigfoot!

Two weeks today!

Has the last two weeks been an eternity to anyone else? Henry is two weeks old!

Henry made another milestone today. He passed his car bed challenge. Here he is... stomach sleeping for over an hour, without choking on his tongue. When he can tolerate it, he'll switch to his back, or even better into a "normal" car seat. For now, this is how he gets chauffeured around! It looks so cozy! The picture gives it an odd angle, but he's just flat in the bed. And, he's eating well! Tonight Lucas and I are spending the night at the hospital. He seems to eat less at night, and we need to learn if it's HIM that doesn't eat well, or that he eats better for us than for the nurses.

The car bed is getting put in our car today. The oxygen saturation monitor is being delivered Thursday at 1000. Then, HOME! Goal: home by noon on Thursday! Then the next reality of having a new born and a 21 month old can set it. But I'm so excited for all of us to be HOME. There's no place like it!

No Pictures, just an update

Henry had another good day today. That makes two in a row! It seems that when he doesn't use all his energy to eat, he actually has the energy to protect his airway (aka not choke on his tongue). In the past 24 hours, we were able to hold him in positions we never have been able to before, including the generic "cradle a baby" position.

We have been feeding him via bottle every other feeding. While he hasn't eaten his goal yet, he gained weight from yesterday. I think tomorrow we may try every feeding with a bottle again. We may go home with the feeding tube, which is OK with me! As long as he's protecting his airway! We are such demanding parents... wanting our kid to breathe!

Each day, each hour, he is growing... he is doing so good! Hopefully by Wednesday or Thursday he can come home!

I could put pictures on tonight, but my camera is WAY over in the kitchen... and I am sitting comfortably on the couch 15 feet away... so far away. Everyone will have to wait for more pictures. Trust me... all my boys are still very cute!

Step Back?

Well, we started off the day thinking Monday was the day to bring Henry home. Then, this afternoon, he was just so tired... he wouldn't eat well, and then wouldn't breathe well. As these are the two things he needs to do to come home, the doctor took the Monday discharge date off the books.

We also decided that he just gets so tired eating, that when he does eat, he gets tired, and when he's tired, he can't/doesn't keep his airway open. This gives him a "spell" which makes him more tired. It a crazy cycle that we are trying to break. SOoooo... we are putting the feeding tube back in. Then, we are only using that to feed Henry for 24 hours. No bottles. This, hopefully, will give Henry time to gain some weight, grow, and gain strength to not tire during feeding. So, this is a minor step back. But, I'd rather keep in in ICU until he's ready to come home, and not push it too quickly.

Henry also failed his car seat challenge today. Which wasn't a big surprise. He can't breathe while sitting upright. But he failed in style... lasting barely five seconds. So, we will be taking him home in a car bed. That way, he can lay on his stomach during car rides.

Today, Jill and Owen came to visit Henry. Daddy and baby Henry.

Sleepy babe.

Attempting to have Owen kiss Henry. Owen wanted nothing to do with it.

Owen was much happier pushing this little chair around. Reason #315 why I love the NICU, they have toys and books for the older siblings. Lucas and his boys. It's a bad picture of Owen, but it lets us know what he was thinking!

"LET ME DOWN!"

One less tube

Today Henry made good eating progress... the little tube up his nose that went into his stomach to help him eat, that little tube that has been in all of his photos, that little tube that took up residence on Henry's face... well, it was taken out today. He's eating well from the bottle, so he's "on his own" now. We'll give him a few days to make sure he's gaining weight, but this makes it one step closer to bringing him home. Our new goal is Tuesday.

One last picture of the tube. I love the interlaced fingers, waiting so patiently. Henry will be a tummy sleeper when he gets home. So we're learning at positioning him in good places. He looks so cozy! (no tube in this shot!)

Telling us what he thinks of the long ICU stay... I couldn't agree more! (I swear this wasn't posed!)

Good Day!

Henry had such a great day today! He ate great five times in a row... twice eating his entire goal! He also seems to be recovering from his "choking spells" a little easier. We'll give Henry a bunch of credit, but I'll take some and give some to Lucas too. It seems like we are learning him better too, so we can help him out better.

He was seen by the ENT (ears nose throat) doctor today, and passed his evaluation. The doctor took a little scope and looked into his airway. His airway looks good, we will all just "wait a see" what Henry can do in the next week. Surgery is still an option, but we are all hoping that in a week Henry can continue his progress and avoid surgery.

He also moved levels of care this afternoon. So, he's out of the sickest ICU section, and into more of a step-down unit. Still in ICU, but doing better.

"good night sweet Henry" Proud parents.

I love it when Henry just looks at me... and I look at him. I could hold him for hours and hours if they let me!

Bucket Boys

Owen and his Daddy having some quality bucket head time.

Self-Portraits

Just look at that handsome face! And that cute hair... and smirk! I love self-portraits! I love Owen! "Another one mom?"1

One week old

It's been a crazy whirl-wind of a week, but one week ago, Henry joined us is the world. It seems like an eternity ago, and at the same time, a blink of the eye. The driving to and from the hospital, trying to keep Owen on a "normal" schedule, and finding time to see each other, Lucas and I are both exhausted. But, I suppose we'd be exhausted if Henry was home too! Oh, the life of having a new born.

Yesterday, Henry had two teeth pulled. He was born with two natal teeth. This has nothing to do with the Pierre-Robin. Just a normal, but not common, thing some babies are born with. He will still have normal baby teeth and then adult teeth. Natal teeth are usually yellow and sideways, and Henry's were just that... actually a little gross looking. I guess "back in the day" these were called "witch teeth" and they would kill the baby. Good thing we don't believe in witches, AND we don't live 200 years ago! Henry's much too cute to be a witch anyhow!

Anyhow, the doctor just came in and "yanked" his teeth out. They just sit in the soft tissue, so it didn't hurt too bad. I think Henry was more upset with three people holding him down than the actual pulling.

When I got to NICU this morning, under his little pillow was a little gift from the Tooth Fairy. I love our nurses in NICU!

Another Day

Not much to update on, except to show off some cute pictures. Henry is getting stronger, but he still needs to eat and breathe better. Here's my sleepy baby. The first family photo! I can see how it will become trickier and trickier to get all four of us looking in the same direction.

Owen came to see Henry yesterday. He quickly touched Henry and pointed and said, "mouth, nose, eye, hair" , patted his head... and gave him a kiss. Then, he was done. Small doses is a great way to meet his brother. But, when Lucas and I came home later that day, Owen was so happy to see us, but said, "baby?" So sweet... asking where his brother was. We are so blessed with such sweet kids!

me and my boys.

Suzi and I took Owen to Munchkin Playland. Owen hammed it up for the camera.

Suzi left this morning. It was so nice having her in town for the weekend... it was so hard to say goodbye.

Good News

Yesterday, we met with the cleft palate team and were blessed with some good news. Henry has Pierre-Robin Sequence (or syndrome). This means that he was born with a cleft palate and small jaw. Again, don't look this up on-line... quite often this is accompanied by many other genetic problems, but Henry only has these two issues: the cleft palate and small jaw. Pierre-Robin is just a label for that.

Henry has a small cleft palate. It only involves his soft palate, not the hard palate. (so the hard part on the top of your mouth is all there, but the soft part in the way back of your mouth... that's what Henry is missing). To me, his cleft looked so big... but hearing that it's actually small is a great relief. (I suppose anything looks big in such a tiny mouth). The cleft palate is easily surgically fixable, and will probably happen around 9-12 months of age.

His jaw is small. This makes his normal, baby sized tongue, sit far back in his throat. So, he occasionally chokes on his tongue. This makes sleeping on his back tricky. So, he sleeps on his side or tummy right now. The doctor said that hopefully, Henry's jaw will grow to normal size within the year. He probably won't need surgery to fix it.

The great news is that the geneticist doesn't think that Henry has a genetic anomaly that caused the Pierre-Robin. He seems to think that when his jaw and palate were forming, in utero, he was just positioned funny, so it didn't grow right. Maybe his hand was up (like he was posing like "The Thinker") and just didn't give his jaw room to grow. Crazy to think about... Henry did this to himself :)

So, goals to get him home:
1. Henry needs to eat. Since he doesn't have part of his soft palate, it's tricky for him to suck on a bottle. So, we are learning to feed him with a special bottle. Since he's never had his soft palate, for him, this is just learning how to eat. For us, it's learning how to position him so he doesn't choke, and how to use the bottle so he gets enough food. He is doing better each day, just a learning process. He eats every three hours, so Lucas and I are trying to alternate feedings, trying to be at the hospital as much as possible, while keeping a "normal" schedule for Owen.

2. Henry needs to breath. Seems so basic, but since he occasionally chokes on his tongue, he
needs to get stronger to keep it in the right spot. We also need to learn to position him to keep this from happening. (like he can't sleep on his back, rather his side or stomach). Again, this is a learning process for him and us. He MIGHT need a little surgery to help him out... but we are giving him more time to figure this out.

3. He was born with teeth. Crazy I know, but he already has "natal teeth". They grow in very loose, so will need pulled so they don't fall out and he chokes on them. A very minor thing, that we will figure out on Monday. He will still grow his baby teeth and adult teeth... he just has three sets of bottom teeth!

Overall, he is doing very well. Our current goal is to go home on Thursday. But the doctors keep reassuring us that they won't discharge him until we are all ready. While I want him home today, I am very thankful he is still getting such close monitoring!

If you have any questions, feel free to ask.

Here is Henry yesterday. They stopped his IV fluids, so he gets to wear real clothes!!

Proud papa and baby boy!

Me and my baby.

Sweet sleeping boys. Last night Lucas just held Henry and sang to him... it's so nice to feel comfortable enough with him to hold him "like a real baby".

And, here's my cheese-ball. Owen was dancing while in a bucket... he thought he was quite clever!

My sister Suzi is in town which is WONDERFUL. This morning Lucas took the morning feedings with Henry, while I stayed home with Owen. Suzi, Owen and I went and played at Munchkin Playland, then home for more play and lunch. Trying to give Owen a sense of "normalcy" and getting to the hospital as often as possible, well... it's tricky. But so far, we are doing OK. By the time night rolls around I am exhausted. But, we are getting a solid night sleep. If Henry was home, we'd be up every three hours! So, one way or another, I'd be exhausted anyhow. I'm going to the hospital with Suzi this afternoon... I should have more pictures to post then!