Parker Is Home!

Parker in his going home outfit, just hanging out in the crib waiting for discharge. Such a cool dude!


In the car, making our way out of the hospital garage (8pm - yes, it was a LONG discharge to say the least).

Finally, he's home!

We had to set him up like he is in the NICU with support blankets on both sides, his mobile (he's familiar with all songs), and Cowboys blankie on top!

Parky, home where he belongs!

What a long, memorable day for all of us!

Bye Bye Ty

One last snuggle with Ty before leaving

It was torture leaving Tyler behind - he looks so sweet just laying there!

"I'm lonely without my brother...don't go!"

Parker Dreams

Could Parky be happier? Look at that face! He's obviously dreaming of tomorrow's trip home.

"...and I'm gunna cuddle with mommy and daddy...and I'm gunna swing...and I'm gunna sleep in my cozy bed...I'm just gunna snuggle 24/7!"

Rooming In

I will just say that "rooming in" with Parker was QUITE an experience - I think I got around 2 hours of sleep last night. Parker is the noisiest baby ever - his squeaks were never ending. Of course, if I didn't hear him I'd immediately jump up and look at him to make sure he was still breathing. Good grief! Well, I wanted to get pictures but between taking video, getting situated into the room and trying hard to NOT be a paranoid parent, I just didn't have time. We are still on track to take Parker home with us tomorrow! John and I are going to take advantage of a baby-free night and try to get some good, solid sleep. After last night we're both convinced we'll be tired for the next 18 years!

Results from Parker's MRI were positive! His "area of concern" does not look concerning anymore and the docs were pleased with the films. What a total relief - I didn't realize how this was weighing on me until the doctors told us about the results. Hallelujah!

Tyler is "feeding on demand" now and has started taking full amounts at almost every feeding! That bodes well for Tyler's departure! I think John and I are NOT "rooming in" with Tyler - I think we'll opt to just take him right home! Ha ha...

We'll post pics of Parker's trip home as soon as we are able, but don't be surprised if it's not immediate - I have a FEELING we'll be pretty busy the next few days...or so! zzzzzz....

Parker is Coming Home!

Well, it's official! Parker will be coming home Thursday!

Yep, the docs decided that Parker is well enough to come home so he will no longer be a "ward of an institution" beginning Thursday. Tomorrow night John and I are "rooming in". This means we will stay over night in the NICU with Parker in a room similar to my labor and delivery room. There is a bed, bathroom, television, phone and all of the hookups for Parker if he needs them. His crib and oxygen will be brought into the room and we will do a "trial run" with him over night. Because he will come home on an apnea monitor we are trying to get one delivered to the NICU so we can test it out as well. Exciting!

So before Parker leaves he will get a hearing test, immunizations, and a car seat test. The car seat test is interesting - we put Parker in his car seat and he has to stay there for an hour and be monitored. He has to be able to sit in a car seat without desatting or having any major problems. Who knew there was such a thing, but I get it! John and I have to watch a bunch of videos before discharge, our own little "tests": infant CPR/FA, car seat safety, Shaken Baby Syndrome, and RSV. Luckily we watched all but RSV when I was in Labor and Delivery. I think we'll be MORE than prepared for bringing these guys home!

Parker had his MRI today and what turmoil! When I called this morning the nurse told me that they'd stopped Parker's feedings and she was putting in an IV because we was going to be intubated and put "under" for the MRI. What the...this was NOT the plan that we discussed with the docs yesterday! John called and talked to the charge nurse who agreed to try the "feed and comfort" plan before moving to intubation. Good grief! So they fed Parker, who hadn't eaten for 6 hours, and took him down for the xray. According to the nurse he did well and only needed major calming once during the procedure. Whew...we are soooo glad we didn't need sedation or intubation - that would put us back another day or two! The results of his MRI won't be known until tomorrow.

Tyler is still struggling to take his bottles. He had two wonderful feedings today and two not so wonderful, sleepy feedings. Poor guy just tuckers out! It's really going to kill me to have him in the hospital while Parker is home. Ugh!

So, we are one more step closer to getting our love bugs home! What a journey this has been - a foggy, scary, tiring and rewarding journey. A part of me still doesn't believe that Parker is actually coming home - I really have to see it to believe it!

Ready to Diaper a Baby

This weekend was pretty uneventful for the boys, but exciting for John and me as we raced around, organizing a new "baby friendly" home. Our house went from "ready to throw a party" to "ready to diaper a baby". Our large "conversation" couch turned into two grotesquely large and comfy rocking recliners and our long side table has been replaced by a changing table, bouncy chair, swing and co-sleeper. To say that we are ready for the boys is an understatement! We are ready and waiting for our lovies to come home!

Updates:
Parker is doing VERY well post op - he's off of the Tylenol, his stitches are healing nicely and he doesn't show signs of irritation at all. Our little love bug is on track to come home, but no one has told us WHEN. The doctor who was in charge last week said "sometime next week". We've heard "rumblings" about discharge, but no date has been given. An MRI is scheduled for tomorrow - they are again going to check out Parker's brain to see if the "area of concern" has grown. I love their plan for giving Parker the MRI - feed him right before he goes down, put him in a transport to take him to another part of the hospital (we know how much he LOVED that ride), then wrap him up tightly so he can't move and hope he falls asleep or is still enough for the MRI so they don't have to sedate him! Holy...I have a feeling sedation is in order because I can't imagine he'll be calm after that trip again. Didn't we just do this? Too bad they couldn't have done an MRI when he was "out" during surgery last week. Great laid plans... So, after a long talk with the docs tomorrow I'm hoping we'll have more information in which to move forward!

Tyler is STILL slowly bottling only about half of each feed. He hasn't quite figured out how much FUN he'll have at home. Daddy and I talk to him daily about the wonderful things that will happen when he begins drinking his WHOLE bottle. Unfortunately Tyler is this big 9lb baby whose lungs are just not developed enough to drink a bottle without being totally exhausted. I just watch in amazement as newborns are brought into the NICU and cry loudly and clearly, eat quickly and in huge amounts, and lay in their cribs without oxygen support. Our little guys just can't do that yet. Time is the only remedy at this point - and more time means more patience. MORE patience? Grrr!

Little Steps

Just a lot of little steps today!

Here are a couple pics of mommy and Tyler. Ty loves looking out - he's VERY visual! Last night the nurse said Tyler wouldn't settle down - she changed diaper, gave him paci, he ate, etc. but just wasn't settled. She happened to turn on the light to look for something and he immediately quieted down, watched his mobile a minute and fell asleep.

Today daddy talked the docs into putting Tyler on Zantac for his acid reflux. Ty just hasn't been taking his bottles lately and our talks with him about finished bottles being his "ticket home" haven't worked. He's been very irritated when drinking and has coughing and reflux spells that have gotten increasingly worse. Well, after his first dose of Zantac, Tyler gulped down almost all of his bottle for mommy! He hasn't done that in a long time. We're hoping this will be the transition to our journey home!

This pic of Tyler is so funny because he's just staring out at daddy. Notice the double chins?

Parker update: Today Parky needed time to recover and couldn't get all of his feeds down. Luckily instead of putting his ng tube back in the docs put him on "feeds on demand". So as long as Parker drinks 200mls per shift, he can eat when he wants. If this works then his trip home is sooner than later! Besides a few doses of Tylenol, Parker's surgery is a faint memory - to him, not to US of course! ;o)

Surgery Day

Today was a VERY long day! First, let me start by saying that everything turned out GREAT! Really, Parker's surgery couldn't have been better. He had two hernias fixed, one on either side. The surgery went smoothly and believe it or not, Parker came back to our room extubated! Yes, he was on his cannula with pure oxygen! We were MORE than thrilled to see this! What a rock star!

So here are highlights from the day...


Because the nurses had a hard time getting a good vein in Parker's foot or hand for the IV, he ended up having it in his head. Not pretty, but effective.
When I arrived the poor little guy was very sad because they stopped feeding him at 5am. He was supposed to have surgery at 10am, but was bumped to 3pm! I sat with him the entire day and tried to keep him calm, what a tough time for mom!




He was transported to the OR via a life support transport, or as the nurses called it, his "chariot"!



He was almost too big for the transport. As he cried his way down to the OR, his feet were kicking the sides of the plexiglass. I was trying to calm him, but I couldn't really walk next to him without tripping over people.

Post Op

Here are the docs pushing Parker into the OR. What a tough time for me - he looked so little and innocent.

After he left they removed his crib and placed this accessible warming bed and vent (see on the right hand side) in its place. EEK! Very scary for me to see the vent in the corner and a bed that looks exactly like his original bed from 4 months ago in our room!

Parker the champ came back to the room without a breathing tube and without his voice. Poor little guy lost his voice again from the intubation. His cries were soft but scratchy - as his face was showing "loud and angry"!

He looks like he's laughing in this picture, but believe me this was the middle of a cry.
I breathed such a sigh of relief as the vent was rolled out of the room - no need here!

He finally had some Tylenol and at 9pm had 1/2 of his normal feeding amount and drank it ALL! We held him until we had to leave and that was hard, believe me.
Here's daddy soothing Parky...just too cute!

So it was a long, painful day in the NICU with fabulous results!

Surgery Day

Tomorrow morning Parker will have hernia surgery. I know I shouldn't be nervous with such a "common" preemie surgery, but knowing my little one will we re-intubated makes me cringe. And today I found out that there is no recovery room so he will most likely be taken to the Lion Room for recovery. Yes, this is the boys original room from their micro preemie days. How weird it will be to walk back into the Lion Room after so many months of progress and growth. I'd better go to bed to prepare for my earlier than normal, long day. Please keep your fingers crossed that our little Parky has the strength to get off that ventilator!
Keep us in your prayers!

Surgery is Scheduled

Just a quickie...Parker's hernia surgery is scheduled for Wednesday - yippee! We're thrilled that it is finally "on the books" because the chances of Parker coming home 5-7 days after surgery is quite possible. Not the same story for Tyler, in fact the doctor told me yesterday that it looks like Tyler will probably not be discharged for at least a couple of weeks. Not ideal for us at all, but at least we'll have one of them home!

John is on a mission to clean the house before the boys come home so yesterday the carpets were cleaned. If you could see the house right now you'd laugh! All of the furniture is off the carpet and stuffed in bathrooms, the kitchen, tiled walkways and garage. It's like going through a maze to get through the house without stepping on carpet! Before we put the furniture back we'll bleach wipe down each piece as well. So these boys should be coming home to a fairly clean environment. We know we can't keep them from germs, but at least we can try to control what we can!

The excitement of the boys coming home is rising...woo hoo!

Daddy & Parky just sittin' around!

This weekend Parker progressed nicely on his feedings, taking a bottle at almost every feed! Way to go buddy! His breathing was progressing so well this weekend they took off his cannula today to see how he'd do. Unfortunately the "test" was done right before he ate and he became way too tuckered while eating so it was quickly put back on, but they are going to try again some time this week. Surgery did not happen on Friday but the docs tell us it should be this week. We'll know tomorrow whether it'll be Tuesday - we're hoping for Tuesday because it means Parker will come home sooner. Besides that, Parker has been a gassy boy whose reflux we think has returned. They are doing a reflux test with him tonight and if it has returned (or never went away) they will probably re-prescribe Zantac again. Overall, it was a good Parker day with one happy boy!


Daddy and Parky had a good day just sittin' around.


Who says babies don't smile...come on, does this look like gas? I think not!

Hello!

Kisses

Oh my goodness what IS that?
Oh, it's just daddy giving me kisses...

over, and over, and over again. Doesn't that guy have anything better to do?

Tyler Conductor

Is Tyler a conductor, dreaming about his future professional career with the symphony?

Or is he dreaming of his future as an airplane (yes, the actual plane, he is a baby after all), soaring through the sky?

We're not sure what the arms-in-the-air sleeping is about, but what we do know for sure is that Tyler is toooo cute!



So this weekend didn't change much with Tyler. He is now starting off every feed with a bottle, but normally only takes half. The rest is gavaged to ensure he gets his nutrition. Unfortunately his sats have been a little rocky, not boding well for an early discharge. He is sitting at a requirement of 1/2 liter of oxygen - they'd like him to be around 1/4 to 1/8. Poor Tyler has started a new thing this week, coughing, chocking and refluxing. Mommy was fortunate enough to be the recipient of one of Tyler's huge reflux events. Smells great! So we are waiting once more for Tyler to make strides and hoping he doesn't end up staying longer in the NICU than Parker. But we will deal with whatever happens, won't we?

Patience

I think this must happen to other parents who've spent as much time in the NICU as John and I have - the final weeks of the NICU stay start slowing down to snail's crawl and you can't believe how fast the 115 days in the NICU flew by and how terribly SLOW time seems to pass during the remaining days. It's as if the boys can feel it as well, like they know they shouldn't be there anymore. Trying to remain a patient parent has become my daily challenge. I'm being as accommodating as I can to get the boys closer toward that exit, but almost to a fault. For instance, I've been giving up my breastfeeding attempts to bottle feeding because I know the boys need to take EVERY feed by bottle (without the feeding tube) before they can be discharged. And today Parker was so tired but I continued to wake him up during his feeding time because I knew if he didn't take the entire bottle they'd put his feeding tube back in his nose, thus prolonging his stay. This is when I feel frustrated with myself for not being patient. Good intentions always - but why do I feel so guilty at the same time? There is no perfect timeline, is there? And no magical "patience" potion that I can take?

So this is where we stand today - an impatient parent who has nothing new to report because nothing new happened. Well, there were new gurgling sounds from Parker, new notice of Tyler's growing double chin, new warm fleece pajamas, and lots of new snuggles from the boys. And I guess a realization at this very moment that a lot of new, wonderful things actually DID happen today.

Feed & Grow

We're pretty much in "feed and grow" mode right now so there's not much to say.

Tyler has not yet finished an entire bottle during a feed, but continues to drink from a full-flow bottle. This is good and shows progress because he takes a little more milk each time. His sats weren't great today but I think it's partially because his cannula needed to be changed, which happened later this afternoon. Hopefully tonight he'll relax and begin to breathe better. The only thing keeping him in the NICU now is eating (he needs to bottle feed every time) and his oxygen requirements (he's still de-satting too much).

Here is daddy's hand on Tyler's head as he's settling down for the night. Goodnight little buddy!

Parker's surgery is still unknown because the surgeon's schedule hasn't determined whether he'll go in Friday or wait until early next week. Tomorrow we should know more.

Parker's eating has improved and he is now bottle feeding around 80% of all meals. Because he has not started "feeding on demand", when he's tired and doesn't finish all of his milk, the remaining is gavaged (put through the feeding tube). As long as he needs gavage feeds, he'll stay in the NICU.

Overall, good uneventful day with good snuggles from both boys!

From Koala to Bear

Well, it's happened. We've been moved - no more Koala West [room]...we're now inhabitants of the Bear room - Raaahhhr (scary bear sound)! In other words, the boys are no longer in need of the ICN (Intensive Care Nursery) and have moved into the CCN (Critical Care Nursery)! This is a wonderful celebration of health and progress.
We've now been told that if the boys progress as they have recently, Tyler could be home in 2 weeks and Parker could be home in 3 weeks! WOW...they've warned us to "be prepared". I think we've been prepared since June - ha ha! Every day with the boys is a new adventure as they grow bigger and bigger. Their personalities are really shining through and getting to know these precious little beings is such a thrill!

Even though we are pleased the boys are well enough to move, it's a little sad moving away from the rooms that sort of became "home away from home" the last 16 weeks. And we've gotten to know and adore so many of the ICN nurses, it'll be hard forging new relationships this far into our journey. But we look forward to a short stay in our new quarters as the boys prepare to go home!

This is where Tyler's bed was in the Koala room.

This empty space is where Parky "lived" in the Koala room.


Here's Parker being moved from the Koala to the Bear room. Brother was waiting for him.

Room With A View

Here's the outside of the room. Like the Lion and Koala rooms, the Bear room has similar beautiful etched glass adorning it.


As you walk into our room, you'll see Tyler on the right, Parker on the left and a big window with a lovely view of the downtown Sacramento treeline. We moved into a nice room. Although the boys now have a roommate, it's still a cozy space.


Here's the view from Parker's bed to Tyler's with the hallway in the background (and Grammie and Tyler snuggling up).

Tyler Eats!

It's Tyler's turn! Big boy drank his first bottle of milk today! Unlike brother, Tyler isn't using the Haberman Feeder, instead he's using a regular bottle. Even though he didn't drink it all, he did REALLY well for his first time eating!



If you're wondering why the boys are eating on their sides, it's to prevent the milk from running directly into their throats. A side hold allows the milk to collect in their cheek and helps them control the amount of liquid that is swallowed. This prevents desats and bradycardic episodes.


Always up for a good burp!


This eating business is soooo much work, I know!

Daddy's Turn!

Today daddy had his first try at feeding Parker! The entire bottle was successfully gone in 15 minutes! Way to go boys!




Daddy getting down his burping technique.
Uh...so full and satisfied!

Cuties!

Tyler had a GREAT day! Today Tyler breastfed TWO TIMES with total success! Because we're not sure how much milk he actually drank, he still ended his feeding with gavage, but drank at least 15 minutes worth. For a first-timer, that's just awesome! Good job buddy!



Parky was sleeping with his hands in the air - too stinkin' funny!

"Wave your hands in the air like you don't care!"

"Hum...I think I've got it!"