9/28 update

Everett saw his pediatrician this morning. He now weighs 7 pounds 8 ounces and is 21" long. Eight more ounces and he'll fit into the baby bjorn carrier. He's eating a lot. Margot is having a hard time keeping up with him.

Margot will ease back into work next week. She's not sure if she'll work the whole week or even if she'll work full days...she'll play it by ear. So before she started back to work, she was able to take a little break today, for the first time, and get out to do some shopping on her own. Until I leave, I'll be staying home with Mr. Man while Margot and Dylan are at work. After that it'll be a combo of grandparents and childcare.

Grandpa and Mamaw were in town and dropped in for a short visit. A tasty bone distracted Goose enough so everyone could enjoy their time with Everett. We discovered the secret when Granddad was here the other day.

Everett went to Pappasitos for dinner. He liked the looks of the chips and salsa. He also got to meet is Uncle Brett. Sorry Everett, you're too young for Margaritas.

That's all for today
Bachan

9/27 update

Yesterday, Everett went to Grandpa and Mamaw's home so Uncle Jack and Joshua could see him without Goose standing guard. He'll see his pediatrician tomorrow and we'll find out how much he's grown. Not much else has happened, but I thought the family might want to see the most recent photos.




Everett just looking cute













Everett says "I'm four weeks old"











The boys relaxing together










Everett doing his Shrek imitation








That's all for today
Bachan

9/22 update

Mom and Dad are trying to get more sleep and figuring out what works. Last night Mom took the 3am feeding...not a good idea, it'll not happen again. She caused a little excitement when she found Dylan and Everett sound asleep on the couch and took Everett to the bedroom to feed and sleep with her. Dad woke up and there was no baby. After tearing through all the cushions and blankets on the couch he checked in the bedroom...boy was he sweating bullets trying to figure out how to tell Mom he had lost the baby.

Thursday's appointment with the surgeon went well. He explained how he would repair the imperforate anus. Before then, when Everett is about 3 months old, he will have an MRI to determine if he has a tethered spinal cord (normally the bottom of the spinal cord floats freely in a pool of spinal fluid. Tethered spinal cord refers to any condition in which the spinal cord is attached to an immovable structure.). This is sometimes seen in infants with Everett's problems. The tethered spinal cord would need to be repaired before the doctor works on the imperforate anus.

Meanwhile, Everett will be seeing the surgeon once a month to make sure everything is fine. He was impressed at how well he was healing... and eating.

Today Grandpa Steve and Mamaw came to visit. Uncle Jack stayed home to work on his van and to keep from being guarded by Goose. For those of you who might be confused, the following are the "names" for all the grandparents (at least this is the plan until Everett starts talking and decided what to call folks):
Mimi - Candy
Grandpa Mike - Michael
Granddad- Lynn
Grandma - Sherri
Mamaw - Frances
Grandpa Steve - Stephen
Bachan - Susan
Jichan - Kim

OK, now what are you going to do














Now I have a very full tummy















Goose wants to get in on the action but won't stand still for this photo









That's all for today. BTW, I'm always getting asked if I get enough sleep... of course I do, I'm a grandparent... and it's great not have to wake up unless I want to :-)
Bachan

More rantings from a lunatic...

This is officially Everett's due date week. If he would have been kept to term, Everett would have been born on Monday. Let me tell you, I cannot imagine having been pregnant for 3 more weeks. While it feels like he was kind of just born last week, baby layaway definitley worked out well. I cannot imagine having Everett home while I was healing and being even more hormonal than I am now. To all of the moms that have gotten to take your babies home immediately -- I don't know how you have done it! Kudos to you!

Anyhow. Enough about me. Here are the updates that you are waiting for.


On Monday we went over to Mimi Candy's house for lunch.



Dylan decided that he would put in some Moby time (I think he was trying to show off, lol).

Then we went home and got some much needed rest.

We have taken Tuesday and Wednesday off. We had a busy weekend, we deserved the break. Now we have an appointment with the surgeon tomorrow morning. You know, part of me wishes that he would say, "the other doctors were crazy...I'm ready to take out his ostomy today." HA! Not likely.

I will update tomorrow on how his appointment goes. I'm not sure what we're doing tomorrow except, I suppose he's following up to make sure that everything is still looking as it should. We may stop by the NICU to say hi to some nurses tomorrow, and I may try to set up a meeting with lactation tomorrow. We'll see. I have a feeling that we'll probably just stick with the one appointment. :)

xoxo

Margot

Foster Love....part 1

Today was part one of our Foster Lovin' weekend. :)

We went over to Lynn's house for lunch and to let the family hold little Everett today.

This is the first time Grandma Sherry has been able to hold Everett since he was born.


She was pretty thrilled about it. :)


Lynn thought it was a picture worthy event...if he could just figure out how to get his camera to cooperate with him. :)

The whole family got in on the action. This kid is just too cute for anyone to resist.


Even MeeMaw got in on the action. :)


Everett got a little worn out from all of the action. So, we put him in his sling so that he could get some rest.


Then, per Dr's orders, we took in some sunlight and tried to recharge a bit.


Once we got home, Goose had to welcome his little brother home. It just isn't the same without him around. :)


Then, Everett decided to spend some time awake, not crying (I know, it's amazing). So, you know what that means...Daddy and Everett got to hang out in the bedroom for the long awaited photo shoot. :)


**yawn** I'm exhausted. Today has been an exciting day for us. Tomorrow we are going to MiMi Candy's house for lunch.

Also, Everett's ostomy supplies should finally arrive tomorrow. Luckily, we had a good ostomy day today. We learned some tricks from Hollister and I think that we will have more good days from here on out.

It's about time to feed again and then sleepy time until 6 a.m. Dylan is going to give Everett a full formula bottle at 3 a.m. and we're going to see how that works tonight. I'm not sure how I feel about giving him the formula, especially since he is not real fond of it, but I'm having trouble keeping up with feeding him and pumping, so we're trying to conserve some of the EBM. I'll let you know how it goes.

Tomorrow will probably be a late blog again, but I'll try to spend some more time on the blog on Tuesday.

xoxo
Margot

I'm baaack....

Hello, everybody. I'm baaack. ;)

I'm still trying to catch up on everything that has been posted, so if I repeat something that you already know, please forgive me.

I'm sorry for not posting sooner. I know that my Mom has been keeping up with this, and I suppose that has made me lazy. It has been a stressful few days since Everett has been home, and I would be lying if I didn't say that there have been times that I have found myself on the brink of losing my sanity. But, in the end, we have ourselves crying competition and come back to the real world and do what needs to be done (I'm not sure, but I think I'm still winning).


After our pediatrician appointment on Thursday, we came home and I made about a million phone calls to make the rest of our follow up appointments. Do you remember how I said that all of the specialists that I had to see while I was pregnant was preparing me for once Everett was born? Well, that has certainly turned out to be the case. Let's go down the list, shall we?

He has an appointment with the surgeon to go over his progress and to discuss when we will be looking at his stoma again.

He has an appointment with a urologist to make sure everything is connected correctly as we have some conflicting diagnoses in that area.

We get to visit a developmental pediatrician, an audiologist, the developmental people get to come to our home to do a study, there is the cardiologist, and of course more appointments with the regular pediatrician. I think I have forgotten a doctor or two, but you get the idea. We are going to be busy little bees. Thankfully, Everett has officially been added to our policy. I feel sorry for the person that has to process all of his records. HA!

Anyhow. He is still feeding well. He is nursing longer and taking less of the fortified EBM. I'm not sure what effect this will have on his weight, but we will see in a couple of weeks. If he is not thriving, I'm sure the doctor will be more than happy to change my feeding techniques.


As of today, we have officially made our switch to cloth diapers. We went up to Bree's and got a few more supplies that we needed to complete our mission. We got diaper covers that come a bit closer to fitting our tiny little man, and I got my Moby sling since he is still too little for the Bjorn.

Overall, today got better towards the end. Everett's ostomy bag decided to stick through 2 changings, although I'm pretty sure that the next time I change him, the bag will have come off again.

We took Everett out for his first meal out of the house. Of course, we had to make it super special, so we took him to Pancho's! :) Raise the flag! Thank you to MY Ba-chan for dinner! :)

Also, thank you so much to Aunt Cindy for dinner last night. It was delicious, and we enjoyed it immensely.

Well, it's getting late and time to feed and go to sleep for an hour or so.


Please bear with me while I get back into the groove of this. Thank you to all of you that have been commenting and sending your thoughts and prayers our way. We appreciate everything more than you will ever know.

xoxo
Margot

9/13 morning update

Here's Daddy and Everett snoozing the morning of 9/12 - last day in the hospital

















Everett is dressed and ready to go home.

His first full day at home was uneventful, other than the fact that he was at HOME :-) He met his new pediatrician then returned home to nap, eat and look cute ... the things babies do best.

Mom and Dad are getting a little more sleep. Looks like Dylan taking the 3am feeding is working for everyone. They're getting really good at emptying/changing the ostomy bag and diapers.

Yesterday evening Mom was pumping and Dad was napping in the bedroom with Everett. Goose came in an nudged Mom's elbow and whined. Margot turned down the TV volume and heard Everett whimpering. Goose is such a good big brother. We can see it now.. Everett gets into trouble and immediately latching his arms around Goose so he can protect him from a scolding.

Today, per the pediatrician's recommendation, Everett will have his first post-hospital outing (besides doctor's offices). He falls asleep in his carseat when the car is moving-just like his mom, sans the carseat :-)

BTW, If you have that photo of Dylan sitting on the pier fishing - he's a youngster with a USA baseball cap - that's Everett's little pensive face ..except for the eyes.

Bachan Susan

9/12 Everett is HOME

The day we have all been waiting for has FINALLY arrived. Everett left the hospital this afternoon and came home. Now Margot and Dylan have to develop a routine that works... maybe they can get more sleep now that they're home. At least there won't be nurses walking in and out of the room at all hours of the night...only Everett wanting attention. The next couple of days will be really busy with going to and scheduling doctor appointments. Maybe Friday will be a whole day of rest for Mommy and baby.

Goose just loved the new addition to the family. He was very curious to see Everett. He got a new binky to keep him occupied (we can't call Everett's pacifier a binky because that's the name Margot and Dylan gave to one of Goose's favorite toys) but he was torn between checking on the little guy and playing with his new toy.

Everett is relaxing in his new bed while Margot, instead of sleeping, is trying to organize his medical and baby supplies so the middle of the night feeding/changing won't be so hectic. This tiny baby sure has a lot of stuff.

Everett really wasn't fond of the 100% no-lactose formula he was getting at the hospital. The nutritionist just happened to mention that Margot could mix it with breast milk so now he likes his bottle again. BTW, he gained 2 ounces between Monday and Tuesday night.

That's it for tonight. Photos to follow in tomorrow's post.
Bachan Susan

9/11 update

Well, Everett will not be going home today. Donna, the NICU nurse practioner, said she'd try to get him released around 11am tomorrow... we'll keep our fingers crossed. The doctor wants to keep an eye on him for one more night.

The powder they've been using to increase his calorie count, apparently, contains milk solids. Everett is lactose intolerant so he hasn't been absorbing enough of the the sugar from the milk. They think that's the reason he's been slow to gain weight. For the next couple of weeks, he'll get a non-milk formula chaser after he comes off of the breast. Donna indicated after a couple weeks he may be able to back to fortified breast milk without a problem... babies are strange that way.

Margot changed his ostomy bag without any help. And Everett hardly fussed at all. Bachan needed to hold down his kicking legs though. This is a two person job... one to change the bag, the other to keep Mr. Squirmy in place.

That's all for today... unless something of interest happens later today.
Bachan Susan

9/10 update

The Aishiteru family - first morning waking up all together as a family.

Margot and Dylan are still sleep deprived. Dylan starts his work week tomorrow but he doesn't think he'll get much sleep tonight either.

The good news is that Everett gained 1 ounce since last night, so maybe they'll let him go home tomorrow, Sept 11.




And the grandparents got to hold Everett:

Mimi Candy was beaming, crying and smiling :-)












Here's proud Grandpa Lynn probably telling Everett about all the fishing they'll be doing.












Grandpa Steve.. already trying to tickle Everett













Mamaw Frances can hardly contain her joy at being able to hold Everett for the first time












Bachan Susan with the little bundle of joy













And now the little man himself - EVERETT
afternoon of Sept 9 - wondering what's in store for him tomorrow ... his first 2 weeks in this world have been a bit rough










Sleep boy... he has a busy day in front of him














Everett is in pretty good spirits... he's been poked (two blood tests - poked his little heels), prodded (another hearing test) and fussed with (he's being weighed before he eats and after, in addition to his nightly weigh-in).

Dad said he's been cranky ever since he got his Hep. B shot this afternoon. I guess no one is getting much sleep tonight. Glad I'm home with Goose.

That's it for today. Still can't get the photo formatting right..oh well, better than no photos at all ;-)
Bachan Susan

9/9/2007 update

Margot and Dylan spent a restless night with Everett. Dylan is planning to take the midnight feeding again. He's been practicing all day and hopes he can handle the feeding without disturbing Margot.

Everett won't be coming home on Monday. He has a good appetite, but isn't gaining any weight. He was 6 pounds 2.4 ounces last night, but tonight he was 6 pounds 2 ounces. Margot and Dylan will have to talk to the doctor tomorrow to find out what needs to be done. Maybe Mom needs to start feeding him milkshakes :-)

Will update the blogs as soon as Mom and Dad find out.

Bachan Susan

9/8/2007 brief PM update

Everett is moving up in the world. He's spending his first night with Mom and Dad upstairs in a rooming-in room. Nothing fancy, but it beats NICU. He's free of all wires and tubes. Lot of new experiences for Everett , Mom and Dad. Margot gave him a sponge bath for the first time (hers, not his). It was exhausting for Everett...it takes a lot of energy to scream as loud as you can for the entire bath. Tonight, the plan is for Dylan to take the midnight feeding so Margot can get some uninterrupted sleep. We'll see how that works out.

He's getting pretty good at latching on and feeding. About half his nourishment comes from the bottle (breastmilk) and half directly from Mom.

For those of you who were asking, Grandpa Lynn visited and held Everett on, I think, Thursday. Dylan has a photo. Margot will post it when the family arrives home and gets settled.

that's all for tonight
Bachan Susan

9/8/2007 Update

OK, more status from the forgetful Bachan.
The 9pm feeding went well. Everett took the breast for a while then finished feeding with the 30cc from the bottle. Dylan changed the 2nd of many diapers. Mom tried to burp him but nothing happened. Dad panicked when he saw, on the monitor, that Everett's respiration dropped... he's stopped breathing! No Dad, the monitor point was a bit squished, but Everett didn't show any signs of distress...he's just fine.

midnight feeding: latched on OK not not as well as earlier. He got 45cc of milk via the bottle. His feeding tube was removed...now he has a rash from the tape on his right cheek...probably won't even notice it after a day.

3am feeding: Everett was wide awake and hungry. He nursed about 20 minutes then took 25cc via the bottle.

6am feeding: Margot and the nurse decided on a routine that lets Margot and Everett get more sleep. She'll nurse for about 10 minutes then feed him with a bottle. This morning he took about 20cc via the bottle.

I met Margot for breakfast after the 6am feeding. She's pretty tired and plans to nap as much as possible between feedings. She's still in the family room, but they're trying to get her that rooming-in room on the 7th floor so she can have Everett in the same room.

9am feeding: Everett was very sleepy. This is the first time he's had to work for his food. Until yesterday afternoon, he could sleep through his feedings...just hook up a feeding tube and yum..his tummy was full. He fell asleep part way through his feeding. I got to feed him his bottle (20cc of a 25cc bottle) while Margot pumped her breasts.

The doctor said Everett is doing well. They want to see some weight gain, but that shouldn't stop him from going home. Margot will need to talk to the social worker so she can order the ostomy supplies, etc. and Everett needs a pediatrician. Dylan and Margot have chosen a pediatric group but haven't been assigned a pediatrician yet. Everyone expected him to stay for at least a week or two more. The doctor said Everett CAN GO HOME ON MONDAY...this will give him time to gain some weight, for a pediatrician to get assigned and for the social worker to talk to Margot and get the supplies ordered.

Dylan is off on Sunday and Monday so he'll be able to spend the day with Margot and Everett. We'll be taking one of Everett's blankets home so Goose can get use to the smell. It's time to get the house ready, again, for Everett's arrival.

Mimi Candy got to hold Everett for the first time this morning. She couldn't stop smiling and cooing at the little man. Everett has that effect on everyone he meets. She had to leave when they came in to test his hearing. He'll be getting a shot for hepititas (standard) then he'll be good to go.

Bachan Susan

9/7/2007 Update

Those of you waiting for Margot to post info will have to wait a bit longer. She'll also post photos. Meanwhile, I'll try to update everyone.

Last night's feeding went better than the 3pm feeding. At least Everett wasn't asleep the entire time, but he wasn't especially interested. After trying to latch on, he fell asleep using Margot's breast as a comfy pillow while he was fed via the feeding tube.

The nurse fed Everett by bottle during the night and he drank 34cc (OK, Margot will probably correct this, but it was a lot for him). Dylan and Margot went for the 9am feeding. I won't lie and say I remember anything I was told about that feeding. Margot will have to fill you in.

Grandpa Stephen and MaMaw Frances visited Everett in the early afternoon. It was the first time they've been able to hold him. They couldn't stop smiling. Photos to follow once Stephen sends them to us.

The 3pm feeding went well. Everett was awake and looking for food, but was getting a bit frustrated. The lactation specialist had Margot put her finger in Everett's mouth while she used a syringe to feed him breastmilk. He was definitely interested. He wouldn't let go of Margot's finger and started to fuss when he didn't get milk in his mouth. With the help of a breast shield, Everett latched on, not a perfect latch, but good enough. Everett actually started to take milk. He took enough milk that he only received 1/2 a feeding via his tube.

The doctor came in to tell Margot that based on Everett's progress - good bottle feeding & excellent progress at the 3pm feeding - he would be removing the feeding tube. It can be reinserted later if needed. The nurse made arrangements for Margot to get a family room tonight so she can feed Everett thoughout the night. They're trying to get a room-in room so Everett can sleep with her. If feedings go well Everett might be able to GO HOME ON SUNDAY :-)

We're trying not to get too excited, but it's really hard not to. It took over 3 weeks for my tattoo to heal...and then there's Everett... On Sunday it will be less than 2 weeks since he's had major surgery and the only thing keeping from going home is his ability to take milk by mouth. Donna, the NICU nurse practitioner said in her 30 years in NICU she has never seen an infant with Everett's problems recover and start suckling this quickly. Everyone is so pleased and surprised. Everyone keep your fingers crossed and keep up with those prayers.

Bachan Susan

Smilebox from Katanna

Here is a great smilebox that Katanna created for us! It is so precious, I just HAD to share it on here!

Click to play | Make your own Smilebox

9/6/07 Morning and Afternoon etc..

I'm still not used to Everett being in a crib. It is just so different from the bassinet that I keep trying to walk past his room!

This morning we got to the hospital and jumped right in. This really is a good adjustment period. I get to learn how to do things a little bit at a time, and if I feel overwhelmed, there is a nurse nearby to help. I should be a pro by the time we take him home. :)

When we get there for feeding we change his diaper and check his temperature.

Dylan still hasn't jumped right in to take over, although I think he has learned to stop implying that he would be better at it than me. :) I'm more than willing to let him try! Everett had a nice, heavy diaper, so things are looking good. The doctors have decided that there is no need to weigh his diapers anymore. This is a big step.

After getting him all changed and cleaned up, we wrapped him all up like a little burrito and all was right with the world for him again.

Then it was Daddy's turn to hold him until feeding time. They bonded again and Everett was less fussy than he was last night.

Things looked good for this morning. While Dylan was holding him, he started sucking on his hands. We tried feeding again, and things went even better than last night. He didn't fall asleep. :) He latched right on, and whenever he would let go, he would try to find it again. We tried it this morning with a few cc of expressed milk in a syringe to help him with the association and he responded well to that. He is making excellent progress! But, I understand why they say this may take as long as a week or more to get him up to where he needs to be.

When we were done letting him play, I tried to unlatch him and he got fussy. So, we let him latch back on again and get his tummy more full (via the feeding tube, but I think he still gets the association). We unlatched him again and put a warm blanket over him. Then he fell right to sleep.

They had to change his ostomy bag today, and they were going to show us how to do it, but Dylan had to get to work. So, later on this week they should teach us how to change it and clean it.


This afternoon, Mom and I went back for his 3pm feeding. He was wrapped up all snuggly and sleepy. But, he didn't get to stay that way for long. :)

We changed his diaper and took his temperature. And guess what? No more blood oxygen cuff and no more IV line! :) Now we only have the feeding tube and one monitor line left! :)


Then it was feeding time. We didn't have as much luck this time. I think from all the excitement of feeding this morning and having his ostomy bag changed, he just did not have the energy to try again this afternoon. I tried everything I could think of to wake him up -- I unwrapped him, tickled his feet, changed his position, blew on him, etc. But, no matter what I did, this kid would NOT wake up!


Finally, I gave up for this afternoon and just let him sleep. We hooked up his feeding tube and let him have his favorite pillow...me. :) After he was done napping on me, Ba-chan got to hold him for a little while. During which he woke up, of course, and started sucking on his fingers. Grrr. :)

On other good news. Today is the last day he has orders for any Tylenol. But, he hasn't gotten any since yesterday morning anyway. I don't think he's noticed. :)

Back to the hospital again this evening to feed again. I don't think Dylan is going to make it tonight because he kind of rushed out of work yesterday to get there for Everett's first feeding and he has a lot to do this evening. But, he will be able to visit every morning before work and be there for the morning feeding. I'm thinking tomorrow morning will be his diaper morning! :) We'll see how effective Daddy Boot Camp REALLY was! :)

xoxo
Margot

9/5/2007 - Evening Update

We just got back from the hospital. Thank you all for your comments and words of encouragement!

Mom and I got to the hospital at 8pm, right on time to be let in after the shift change. We got to watch the nurse go through all of the vital checking and then Dylan got there so Mom went home.

I got to watch the nurse empty the ostomy bag and then I got to change his diaper. Let me tell you, I felt like an idiot. It's one thing to change a diaper on a regular baby. It is a whole other deal changing the diaper on a kid that has 8 different leads coming off of him...okay, I'm exaggerating, but still. There are a lot of wires looping around him to monitor his vitals, and it's kind of hard to manage all of that, plus attempt to not get peed on (we all know how little boys are). Luckily, I made it out of the experience dry while Dylan just sat back and told the nurse "she didn't go to daddy boot camp." I didn't see him knocking me out of the way to get that diaper changed, though. :)

After the change, Everett started rooting around and attempting to suck on his fingers.


So, the nurse decided we should skip all of the formalities and get right to feeding even though we were about a half hour early. She said that we should take advantage of him rooting around. So, she sat me down and we got started. Let me tell you, my expectations were low for this first try. I figured we might be able to get him to nuzzle at most. Dylan held his breath in anticipation.


Well, this little sucker latched right on. Now, I'll clarify that this was not a proper latch by any means, but still, he got the idea. :)


He doesn't quite get the sucking concept yet, but I'm excited that he accomplished as much as he did. This is making me very optimistic about the days to come. He managed to swallow a few times, and then he promptly fell asleep. :)

They started his feeding through the tube, and once that was done, it was Dad's turn to hold him for the very first time. We wanted to make sure that Everett would be amply supported, so we had Dylan put on his floatie lend a hand.


And then the big moment came.


I was wrong. No tears. But, of course, it didn't take Dylan long to get his hands on the camera and take the first in a series of what I'm sure will be millions of self portraits to come.


That is how we know that Dylan is feeling better about this whole situation. His mind is back inside the camera again. :)

So, we had an eventful evening. I'm really proud of the little guy. As usual, he has far exceeded our expectations. I know that we still have a rough road ahead of us as far as feeding goes, but I am so excited that he was able to do so much tonight.

I'm off to bed to get some rest. Tomorrow I will try to feed him at 9am, 3pm, and 9pm. We may switch off between bottle and breast. At this point, we just want him to latch onto some sort of nipple. :) We'll sort out the difference later. :)

xoxo
Margot