Get me outta here!!!

That's what Evan's sweet eyes are screaming at us more and more
lately. It seems Evan is just as ready (mentally) as Ben and I to get
the heck out of this room! All week long we were told that we should
expect to be home before the weekend is over, not the case :( Our
bubble has definately been burst! Do they realize this Tuesday will
make our stay here 5 weeks too long! Of course another attending is
covering for Dr. Z this wknd and has different opinions about what
Evan needs to do in order to get home and this is, of course,
frustrating us to our wits end. Evan is sloooowly taking more by mouth
but they are still running the tpn nutrition overnight and thus
possibly not getting fully hungry. His stomach motility is probably
still slow as well. Oh, he also clearly has a case of thrush as well
but they aren't going to start treating that yet, just wait and watch
it get worse until tomorrow and reasses then. I don't think we will
know realistically what the plan is until we see Dr. Z again. He could
have his second surgery in 2 weeks, what if we are here until then??
Ahhhhh!!!!

We snagged a baby swing today and E enjoyed that. I also haven't had
him hooked up to any monitors today so he was able to be on the bench
bed cooing at a mirror with his bros and also had a walk in the halls
in my baby k'tan carrier. I'm not sure if I was suppose to take him
off the monitor but no one has said anything and being cord free at
least gives me a small slice of sanity here for a moment ;)

We were sad to see Auntie Sam leave this morning- the week flew by too
quick! We will have the night nanny come back a couple nights now, we
still have some hours with ABC Doula available and also some Doulas
from Renaissance Doula are donating some night help so they can help
us out while getting experience with multiples- win win! We are amazed
by the kindness and generosity of our family, friends and strangers!!

P and R are growing up so fast at home too! They are more alert for
much longer, enjoying playing for longer periods, no longer scream
bloody murder during diaper changes, and settle much easier after the
night feeds so we all are getting a few more minutes of much needed
rest! Hopefully Evan will join right in once we break him free! I may
just bring him home tonight, they will probably think it is one of my
other babes and we will be long gone before they notice the truth
(another benefit of having a litter of babes- it easily confuses
others!)

Looking forward to sunshine and a possible "4 hr pass" for Evan
tomorrow....

Sent from my iPhone

Still movin

Evan has been taking about 25cc every 3 hrs for the past 3 days and
has been able to keep it all down so far. They should start lowering
the nutrition he is receiving through his IV today so that hopefully
he will start feeling more hungry and take a larger amount of milk.
His stool is yellow again so it seems like things are once again
moving through and not getting hung up in his stomach like last week.
At rounds yesterday they said they didn't know if it was all the
narcotics that he was on or the early dc of the narcotic ween that
caused his stomach motility to stop. Ummmm, I can take a stab at that:

Last weekend Evan started taking milk and his stool turned yellow,
things were going really well! He was slowly being weened of the
narcotics and was waking up more everyday. On Monday after the
methadone ween was dc'd prematurely Evan started sleeping and not
wanting to wake up to eat. He started vomiting and his stool turned
green like bile again. Once we finally got his med ween schedule
turned back on Evan started to improve again and is now back to the
same progress as we were at last Monday. Hmmmm, I think maybe the
withdrawal of meds may have set him back, but I'm just sayin ;)
Luckily we are where were at now and hopefully we don't have to look
back ever again (pleeeease!!) Yesterday Dr. Z said if all stays on
track that Evan would be able to get sewn back together mid-May. This
was great news!!

Xo, B

Sent from my iPhone

Happy Easter!

I found one!

Hmmm, where next...

Serious pickin' face!

Payton sleeping like an Angel

Payton, Evan and Riley spending Easter together in the hospital. Payton is very predictable in pictures, he either is crying, or...

sleeping. :)

All our boys!! xoxo

We had a nice relaxed morning at home before heading to the hospital to spend the day with Evan. (I am always nervous about Evan at the hospital without us, but I know I shouldn't be as the RNs have always proven that they take great care of him while we are away! When we got there yesterday Evan was greeting all at the front desk as he was being cuddled by the receptionist. When we got settled into the room a CNA came in and said (with a thick Jamaican accent) "He there Easy-E, how's my main man doing?" I just loved the way she talked to him, I could tell they were buds. I also know when we have a *really* fabulous nurse when Evan's bed is all made up with cute blankets and put together really nicely (reminds me of his NICU days- those RNs made up the cutest beds too!) They also gave Evan a nice warm, sweet smelling bath to keep him busy before we arrived. Yes, he is a floor favorite and well taken care of ;)

Evan had a good day :) They pulled his NG vacuum tube out since the volume coming out drastically decreased. At morning rounds they decided it was time for Evan to start eating again today. We have been cautiously optimistic that his belly is healed and ready to start moving again. He has been getting 15cc's every 3 hrs since 12:30pm yesterday. He has taken it slow and steady without any vomiting so far. I am sure they will increase the amount a bit again today and decrease the amount of nutrition he is getting through his IV so that he feels a bit more hungry. We are hoping he stays just as comfortable as the amount increases which would tell us that the meds they started to increase his gastric motility are working and once he is up to full feeds and gaining weight....he could come home!! I have no idea how long the process will be to get him up to full feeds at this point so will continue to focus on the present success :)

Auntie Sam, Ben and I are into a rotation of baby cares and it is working quite nicely. We figure we will give her one more day before we really test her skills and leave her with the 2 babes at home solo. I know she will handle it with no issues and probably even hope for a set of twins for herself one day!! (quit laughing Nana Liz ;) )

Much love, B

3 months old!

Can't get much more identical than this! We have been working with OT on some exercises for Riley and Payton since they tend to always look and pull to the right. Wouldn't you know now that Evan is awake more in the hospital he is also naturally positioning his head to the right! We have to be aware and try to put all the "fun stuff" on their left side to help even things out and help their heads shape up nice and even.

Riley (hanging out on Evan's blankie)

Brody likes to be cooperative for pictures....sometimes ;)

Such a good big brother!

Brody snuggling with Payton

Riley getting pretty good at tummy time

Dad with the 2 littles at home, juggling 2 babes is just too easy- we need Evan to get better and come home SOON!!!

Riley loungin

Payton and Riley outgrowing the rock-n-play sleeper. If Riley had it his way he would still snuggle in with Payton and sleep for hours, but Payton is sleeping better with a little more room for himself. So, now we have invested in 2 more of these since they love them so much!

3 month weights:
Evan: 10lb 6ozish (keeps changing)
Payton: 9lb 3oz
Riley: 9lb 6.5oz

Ben's report out from the hospital today: The final result of the UGI/Small Bowel study did not have any definitive diagnosis. The good news is that the bowel leading up to his stoma all looks good. It is traveling at a good pace, no signs of strictures or recurring NEC. They could tell this by the small amount of contrast that eventually made its way out of the stomach and into the bowel. The bad news is hat they don't know why there is delayed release (or none at all) of content from the stomach. The pyloric spinchter measured normal under ultrasound as well. They noted some unexplained inflammation of the gastric wall as well. The contrast that didn't exit the stomach into the bowel made its way back out his NG tube. The brown stomach residual eventually turned yellow/green so it looks like the bleeding stopped. (possibly the gastric wall was irritated from the feeds that were not moving out of the stomach? I don't know, just a theory) Evan did throw up again this morning, bilious fluid since he has not been eating. Now they are going to take out his NG tube and replace it with a firmer tube that can be used as a vacuum to take the contents out of his stomach in order for it to heal and so they can monitor the volume as well. The hope is for the content to eventually turn from yellow to clear and then stop. This will tell them that his stomach is healed and they will begin feeding through the tube only and verrrry sllllooowly. This is the best plan there is for now, and we can only hope it works since we don't really have an answer for what is going on. We have requested that when feeds start they use Neocate formula ($$$) but it is broken down so far they call it "elemental" and is often used for littles who have gut issues.

Dad is taking care of Evan at the hospital today and I just returned from a nice walk in the SUNSHINE with Payton and Riley. I will head back up to the hospital tonight and will meet my sister there tomorrow afternoon after she gets in from Charleston to help us out for a week. :)

Never give in

I have felt so defeated so many times the last 3 days and I could have given in so many times, but because of the support of so many- we are all still fighting :) Evan is proving to be the strongest of us all- GO LITTLE MAN!!! I guess I have some catching up to do on here since my last post. I had to eventually have Ben come in for a "new voice" as I felt I wasn't getting anywhere with my concerns on Tuesday. It just so happened that when he arrived the hospital administrator on duty stopped by to see if my concerns from the night before were addressed (no). At this point Evan was much more agitated and having worse withdrawal symptoms and it was apparent to everyone in the room (including the resident, finally) that he needed to be back on the methadone ween regimen that the pharmacist initially prescribed that was d/c'd prematurely. I should also mention that earlier in the day the surgery fellow came in to talk to me about my concerns and convinced me to start feeding Evan again in order to allow the meds she was going to prescribe for "gut mobility" to work. I agreed but told her that he was refusing so if he really needed to eat a feeding tube would have to be put back in, so we did. I wasn't going to refuse feeding him like my initial instinct if they were advising me that they have a reason as to why he needs to eat even when he doesn't want to, I am not a negligent parent.

We all got some rest after the weening meds were started again. Ben and I then brought up the other littles Wednesday late morning and were happy to hear that Evan had not thrown up since the meds were started. YAHOO!! We were feeling relief that it was withdrawal and not anything worse causing him to go downhill again. About this time Dr. Z returned, we were very pleased to see him again after many days. We didn't re-hash through everything with him as we were optimistic that all our worries were going away now that we "believed" he was on the mend. We did tell him that we thought the 36 hours he was off of meds and suffering was completely unnecessary and we wish we would have been listened to earlier. He replied that he was happy he was back on them now. Fair enough. As we talked Evan started getting upset and gagging a bit, seconds after they left the room he spit up a small amount of brown liquid. Hmmm, weird. This is new, here we go again?? We again started waiting for what was going to happen next. As the day went on Evan once again grew angry and inconsolable. Sure enough the next time I tried to feed him he threw up, lots. It was brown specked again and the nurse and I had a feeling it was blood. It tested positive on the litmus test, dang it!! Now I am back to believing that it wasn't completely withdrawals and indeed something else is going on. I am going to tread lightly here, and not document fully what happened next. All I can say is that I have not been happy with the communication I have received from residents over the last 2 days. I was panicking at this point and thank goodness for understanding and supportive nurses (on staff here and from the little's peds office!) and for a fantastic pediatrician who called me after getting my email after hours. I needed someone to listen to me and be empathetic and show concern, and she did. I am not saying that she would even do anything differently than the surgeons, but I strongly believe that pediatricians should be involved to look at the big picture during times like these and consult with the surgery team. I think the surgeons are experts in what they do best- surgery, but I think we need a pediatrician hospitalist to manage Evan's medical issues and hopefully prevent them from turning into surgical issues. I am very thankful for Dr. Z, he had a hand in saving Evan's life and I am forever thankful for that. I believe that when Evan left the PICU and the intensivists that were also watching over him along with the surgeons that he should have been assigned a pediatrician to watch over him along with surgery team. Surgery residents, from my experience, have surgery on their mind only. They assess if Evan is a surgery candidate, and if he's not than they believe "he is doing fine", even when I say he is not doing fine. I don't want him to be a surgery candidate again. I don't want him to get to the point of critical condition before action is taken again, like what happened when I said he wasn't fine and we were sent home from the ER. I want pro-active care and thinking. I want them to believe me when I say that something has changed, that Evan was doing great for 2 days and now he is reverting back and something is wrong. I want to hear what the possibilities are that could be causing this, even if no action is taken. I want to be confident in the care he is receiving and in order for that I need to believe that more is being taken into consideration than if he is a surgery candidate or not. I don't want to hear "he looks great" when I am telling you that he doesn't. I am his mother who has been by his side (along with the best dad ever!!) through this horrific time and I am telling you that something is wrong, please listen to me and quit looking at me like I am crazy!

After my pleading that "something is wrong" they ordered an xray knowing that it couldn't rule out an obstruction or stricture completely but it could show signs of NEC recurring, which isn't what I think (pray) is happening. The xray didn't show signs of NEC (yay!) but also couldn't rule out a stricture because his stomas allow gas to be released so they can not check for gas in his rectum which would mean gas is passing all the way through. So, the resident said they will "consider" doing a contrast study tomorrow (today). Well, he ended up having another large blood filled emesis a few hours later. They FINALLY discontinued his feeds and ordered a UGI with small bowel follow through to be performed in the morning. That brings us to now, I am waiting to take him down to Radiology to start the exam. He is much more content now that he is not being forced to eat, but is still not comfortable completely.

So for all you mamas and papas out there- speak up!! I just spent an hour with the hospital administrator documenting all of this (again) because I feel so bad for other patients who may not know any better or who think that doctors know all and shouldn't be questioned. This is a service issue here that needs to be changed. For now my main concern is Evan getting what he needs, I will fix the system later, hahaa! Maybe they should hire me ;) JUST KIDDING!!!!

**Update** Just returned from radiology, yep, something is going on. The contrast is not draining from his stomach like it should. They also did an ultrasound which ruled out pyloric stenosis. So now they know what it isn't, but the rad couldn't tell me what she thought it was. She was going to consult with Dr. Z and try and put the puzzle peices together with him.

Just waiting...

I wish I could say my lack of rounding reports was because all has been going great, but that's not the case :( I got to the hospital yesterday morning expecting to find a happy hungry baby as he was the 2 days prior, instead I found a very sleepy baby who was not at all interested in eating. He also vomited, a lot. He has done this a few times now. Just as I am getting ready to give him a bottle he throws up what looks to be his last feed and then some (very curdled like it has been sitting for a long time too). You would think we would stop feeding, yes? No.

Here's my rant: it's like deja vu from when we were in the ER initially and it scares me to death. I feel like he is on the cusp of getting really sick again and the surgery team is not responding to my concerns. I hope more than anything that I am wrong and Evan will get through this, but I have a sick feeling I am going to be saying "I told you so" in a few days. Evan is currently refusing most of his feeds after eating so well all weekend. He is also vomiting large amounts hours after eating. He is having withdrawal symptoms from pain meds that were supposed to be weaned over 1 week and were completely discontinued on day 2. He is only comforted by being held tight in my arms and at times that isn't enough (so we are both well covered in stinky vomit!) The one positive is that his xray looks good, no sign of obstruction... But his xray also looked good early on in the ER so I am not completely convinced.

So given all of this, what is the new plan? Nothing. Nope. Notta. Nothing for pain. Nothing to help him cope. And go ahead and keep feeding your baby that is vomiting and refusing to eat, ya that sounds good! We are just going to watch and wait they say. You can guess I am not taking this without a fight. I have had a hospital administrator and patient advocate here to help document my concerns and get a plan from the attending (our attending that did the surgery is on leave this week so I have been dealing with residents and fellows. They are now calling in the covering attending to look at the whole picture and be responsible.) I am sure I have pissed off the entire team and they probably shudder when their pager goes off from our nurse- do I care? Not.one.bit. I know what type of care we deserve (we got it while we were in the PICU and had more than the surgery team caring for Evan and I work with some pretty amazing doctors so my expectations are quite high! ...as they should be). I at least want them to say they hear me and quit trying to justify with statements that are obsolete. Maybe start measuring his abdomen to be proactive about possible distention or give him some meds to help him rest and be more comfortable. I just need them to do something.

For now I have decided to not follow orders and will discontinue to feed Evan, and we will see what the day brings. I miss Ben and the boys at home, I had no idea this was how the week was going to turn out!

Please pray for comfort and answers for Evan and strength for Ben and I to keep this up. And most importantly, pray that mom is wrong for once (ya, only once, ha!) and this is just a slow healing process that needs to "wake up his gut" and not more sickness!

Xo, b

Full House Mom's (and Dads) Blog

We were asked to share Evan's story on the Full House Moms (Portland's multiples group) blog. We made the decision to share a few photos that we took of Evan over the last few weeks. This didn't come lightly but we only hope that it can help another family someday in giving hope that as low as you may feel some days and as sick as your baby may appear, these babies are amazingly resilient and they are capable of miraculous recoveries!

Check it out here:


http://fullhousemoms.blogspot.com