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

One Week

Strange how so much can change in just 1 week. Last Sunday we wrote our most depressed blog and we were both feeling so down and out. After having a setback with Evan and needing to go back on cpap it was really feeling like there was no light at the end of the tunnel. This Sunday I am holding our boy with him staring up at me and grinning while I am smiling at him.

Small list of miracles this week -
We were moved out of the PICU to the Peds ward, he is off of any breathing assistance, and taking all of his feeds from a bottle. He is now taking all meds orally rather than thru an IV. It's no longer necessary for his heart rate, respiratory rate, or saturation levels to be monitored and he is able to wear an outfit now. Mom gave him a bath this morning and he has had all his little nails trimmed. He has also lost virtually all his water weight and is near his normal weight again and in normal size diapers.

We still have a long way to go, but we feel very blessed this Sunday and the sun is starting to shine again for us! (And if you live in the NW that's quite literal as well)

Ben.

Another good day

Evan had another good night/day! He is now up to 20ml every 3 hrs and
we give it by bottle once or twice a day. His stool now looks less
billious (word??) and more like I would think liquid baby stool would
be, nice huh (it will stay liquid since it isn't going through his
large bowel before exiting, his stoma is from his small bowel). I am
hoping to get more insight from the surgeons, but that might not be
until Monday since the wknd rounds usually are covering docs. I am
anxious to see if they will let us increase the amount a bit faster
since he is doing so well, can you tell I am ready to be done here!!?!
I am hoping they will do an imaging study at some point so we can see
his bowel and if there are any strictures that we should be worried
about and not just waiting to see if an obstruction happens. I am not
sure if this is part of the immediate plan or not, I have never asked
because I never thought we would get to tuis point! We have a lot to
be thankful for :)

We had our family of 6 together for the first time in what, 3 weeks
now?? Now that Evan is in the peds ward it is more kid friendly so we
brought Brody with us today as well. He had fun playing in the play
room and going for walks through the hallway, he charmed all the
nurses and talked to other kids who are patients here and were sitting
outside their rooms in red wagons- it was too cute! We also took a
family walk (w/o Evan :( ) and rode the OHSU aerial tram (google it if
your not from here, it's pretty cool!) Brody loved it and said we were
in a rocket ship. We all needed and benefited from the fresh air.

We did all this before 2pm! (what happens when your day starts at 6am
and you hve to be super organized to even get out the door.) We stayed
and did the 3pm feeding in Evan's room before packing up and heading
home for a bit. I think Ben and I closed our eyes for 20 minutes at
home before Ot was time for the 6pm feed. It was an exhausting day! I
am back with Evan in my arms and Ben is home with the boys and will
hopefully get some sleep tonight since we have night nanny help
tonight. Evan is so smiley for his periods of awakeness yesterday an
today- it is amazing and melts my heart! I hope Riley and Payton start
smiling at us soon too.

Here's to hoping for some zzzz's for all!

Xo, B

Sent from my iPhone

Yes Mom, I am happy to be off oxygen too!!

Slow...Slow--Fast,Fast

The name of the game since we have been here has been "slow and easy",
but now it seems that everything is moving at a accelerated pace.
Don't get me wrong, I love the faster pace knowing that it means he is
getting better and hopefully closer to rejoining us back home, but it
is not easy to get used too after seeing things with him be so
critical. After letting mom stay the last 2 nights in hopes of bottle
feedings starting and getting moved out of the PICU and that not
happening for her I decided it was my turn to spend a night with him.
Well, wouldn't you know it he was moved to the Peds Ward shortly
before I arrived last night and there is talk of trying a bottle feed
some time this morning. Brooke is at home with the others and
planning a trip down this morning so hopefully she can make it before
that starts.

He is definitely moving along though which I guess warrants the faster
pace. He was completely off of any assisted oxygen before I came last
night as well and has been doing great. His lasix are down to just
once a day and he has still been expelling waste and shedding weight.
He was just weighed again this morning and is now at 10.68lbs. The
other big thing that I woke up to this morning is that his monitoring
is off. They said that he is now stable enough to not be monitored any
longer so no more heart rate, respiratory rate, or saturation levels
beeping. He is now truly in a "wait and watch" period. They want to
still watch how he is handling feeds and get him up to about what he
was taking when he came in taking before discharging. That is really
the biggest thing keeping us here right now. Everything else can been
handled at home including some of the meds he is on, his stoma's,
etc...

To go through what he has been through and for us to see the positive
changes that we have seen just in the last few weeks has been so great
and we have felt so blessed. We continue to pray that this positive
progression keeps up as we get closer and closer to the door because I
don't think I'll be able to hold mom back once they start hinting that
home may be close.

Thanks again for everyone's prayers and support!

Ben.

--
:) Brooke

Overstayed our welcome!

So, yesterday I was sad to hear we were leaving the PICU and now I can't wait to get the heck out!! We packed our bags yesterday waiting for the big move but it never happened. I had to get new sheets and remake the guest bed/bench last night :( We are still waiting for a bed to open up in the peds ward upstairs. For those that know me well know that I like things to go as planned ;) So once I had it set in my mind that we were moving, I accepted it, and now I want nothing more to move darn it! There are new really sick kids in the PICU that need the full attention that Evan once required while he has now changed to a "watch and see" status. These nurses are paid too much to sit next to his bed and watch and wait for something to happen! Although we love the fact that he is not currently in critical condition, it does take some getting use to to have to wait for a nurse to be available and for one to not always be there to answer your questions. Rounds were an all time record fast this morning too, I guess others have "checked" Evan out as well, not just me.

The surgeons did say that it is still too early to know how/if Evan is going to tolerate his feeds and he will be moved up to 10ml every 3 hours (not every hour like I thought yesterday). I thought last night he was very uncomfortable when I touched his belly and that made me nervous. The nurse reminded me that he hasn't had anything in there for 2 weeks and he might get gassy and uncomfortable at first without it meaning that he is not tolerating the milk. So we will keep truckin along hoping that we don't encounter any strictures or obstructions that could put as back at square one. I only want Evan to go through one more surgery and that is to put him back together, not to fix another part!

xo, B

5ml's down!

We finally got the feeding order at about 1pm ;) aaahh, hospital/
surgeon time! Evan received 5mls of breast milk through his NG tube
and will get 5 more every hour. Each day they will increase by 5, so
tomorrow he will get 10mls every hour. Baby steps. In a week he will
be up to an ounce per hour which is the goal right now.

The boys have been snuggling very happily for a couple hours now! The
word of heart.melting.cuteness has traveled fast and the boys have
been on "show" to many onlookers this morning. So far they have been
very respectful and adorned from a distance ;) We are already taking
the risk of bringing healthy boys into a hospital but the benefit of
their love and touch for Evan outweigh the risk right now and we are
being very careful to keep them all clean.

Ben has graciously offered to let me stay with Evan for a second night
tonight instead of switching. Hopefully we get him up to his new room
and comfortable before dark!
Xo, B

Graduation Day!

It's a big day all around today. First, I am not-so-patiently waiting
for the feeding order to be entered and started. Morning rounds also
confirmed that Evan is doing to good to be in the pediatric ICU! He
was taken off of CPAP yesterday and has been weened from 10 liters
down to 3 liters currently on his high flow nasal cannula and is doing
great respiratory wise with this so far. They are still weening his
methadone and Ativan slowly and watching for withdrawl symptoms, so he
is still pretty sleepy for the majority of the day. I think his
feeding will start through his NG tube today and maybe try a bottle
tomorrow.

So with all these changes it is time for Evan to get the boot out of
the PICU and graduate to the general pediatric ward! It is bittersweet
as we have become comfortable and really trust the intensivists and
RNs that we have gotten to know, so we will really miss them! I am
sure we will meet great people upstairs as well, just another change
to get use to. I am told it is more kid friendly and that Brody will
probably love visiting, so we will have to get him here tomorrow or
Saturday.

Ben just got here with P and R so it's time to snuggle some boys :)

Sent from my iPhone

Snugglebugs

We took Riley and Payton to visit Evan after their 2 month (late) pediatrician appointment. They didn't even hesitate and snuggled right in! Riley has always been drawn to Evan as his snuggler so it was great to see that that hasn't changed.

Evan did eventually close his eyes and rest with his brothers company, we hated to break it up when it was time to go! (Some of you have asked what CPAP is (continuous positive airway pressure), and here is a picture of Evan sporting his. When we were at the hospital yesterday Evan seemed to be breathing with more ease than my visit the night before. They tried him off of the CPAP before we got their but they said after about 30 minutes they had to put him back on. Maybe they will try again today. I hope he will come off of it before they start his feeds tomorrow as that would make things much more difficult. Evan also graduated into a bigger crib (much to his brothers liking) because he is now regulating his own body temperature and does not need the overhead heater. Ben is on his way to the hospital now for the day and then he is coming home and will head up and stay the night so I can be there in the morning when we first try feeding him some of mama's milk. Payton and Riley checked out great at their peds appt. They both weighed in exactly the same at 8lb2oz! Riley is about 1/4" longer than Payton at just under 21". For their adjusted age of ~3 weeks they fell between the 25-50th percentile for both height and weight and in true (Lippincott) fashion their head circumference was just above the 50th percentile. They both showed off their muscles for Dr. MP and did a good job on their tummies. They are getting much better at tolerating this multiple times a day now. We are also getting set up with the early intervention program that will come to our house and assess the babes to see if we qualify for home visits from PT/OT therapists for their NICU/preemie follow-up needs. We already have a home health nurse that comes to our house to weigh the boys during the weeks they don't see the Dr and we love that service! Any appointment that comes to us is much appreciated with our schedule ;)

 Brody came downstairs with a new outfit on and Dad liked it so much he decided to wear the same thing! :) I can't believe the lil guy has 3T jeans on now!! We were just talking about how we think his curls are no more :( and you can definitely see that in this picture. When we find the time to get him to little clippers I think I am going to be brave and try a SHORT haircut! He's so cute I know he can pull it off but it will also buy us more time (which we need) in between cuts if we stop doing the shaggy longer cut. Brody is excited as he is going on a lunch playdate today to the park with his friend BIG Brody N. Big Brody will be 3 in a couple weeks and lives across the street from us too.

xo, B

CPAP :(

I know that being put on CPAP is much better than having to be re-intubated, but we can't help but feel defeated today. Ben and I have both avoided blogging today because we both feel so down-in-the-dumps. Evan made it through most of his 1st night after being extubated without too many troubles, Dad reported a few times being woken up by the chaos of bells ringing but nothing too major. Unfortunately, the 5am chest portable x-ray came back much worse than had they had hoped for. His lung atelectasis had increased enough for them to have to put him on CPAP for support. Dad held him and comforted him for quite some time before leaving for home to join me and the other littles. We did a couple feeds together before I left to visit Evan. When I got there I was taken aback some, I guess after leaving yesterday feeling so happy about his extubation and decreased swelling I was hoping to see more improvements. Instead I found Evan looking about as swollen (if not more, but I think the CPAP makes him look more so) as yesterday and really working hard to breathe even with the extra help. He had a fabulous nurse who was sweet in comforting me the hours that I spent with him today. The Dr also informed me that he needed to be put on another set of antibiotics because the blood culture they took a couple nights ago when he spiked a fever came back positive for a bacteria that can lead to pneumonia if not treated.

Dr. K also "mentioned" that the surgeons were concerned that Evan *may* really struggle when we introduce milk to him on Wednesday. There is a possibility that the very sick bowel they left inside of him may heal with "scar tissue gone wild" (as described by a surgery resident) which could lead to strictures that could slowdown or block the passing of the food. I guess we will know pretty quick by either his stomach becoming distended again or vomiting. This could mean more surgery :(  Now, he *may* not be healing with excessive scar tissue and he could pull through strong and mighty. But, being this is the first I heard of this "concern" you can imagine where my mind started going! I couldn't help but cry and ask the nurse what if his whole bowel is one big rope of scar tissue?? Thank goodness I had C as our nurse today as she reeled me in and told me to concentrate on today and not to go down that path right now. She was great and listened to me as I shared my feelings of being torn between two places and how Ben and I fear that we won't be able to keep up at this pace. We feel guilt when one of us is not by Evan's side, but can not physically or emotionally handle "tag-teaming" the duties at home. Can we enlist more help? Probably. But our pediatrician has reminded us that it is still RSV season here and the last thing we need is one more baby/toddler/parent sick during this time so as much as there are offers to help we are reluctant to accept. But it's not only that, we are a team, and we don't work as well without each other.  We are going to try and have a couple nights at home together in between switching nights in the PICU with Evan. When we stay at home alone we have been having a night nanny or doula at our house from 11pm-7am which is a blessing and worth every cent. But, even after sleeping a full night at home or the hospital you still wake up feeling exhausted, go figure!

This is why we struggled with blogging, it's hard to admit these things! So, please pray for strength for us to get through this- the thought of this being our daily grind for another month or so is debilitating, so we are choosing to take it one hour at a time :)

xoxo, B

p.s. check out the new "button" on the side of our blog for our friend Linus. When you are praying for Evan please throw in an extra one for Linus too! I "know" Linus's mommies from a triplet group and my heart aches for them as they have been on their journey to recovery for much longer than we have. And they have BBB triplets who are quite the lookers as well ;)

A picture worth sharing!

Finally, a picture that brings tears of joy and not heartache. Ben and
I were able to both be with Evan this afternoon for his extubation. We
were prepared for the fact that he may not be ready and may need to be
intubated again due to his extra fluid that still needs to be shed,
but he held strong! When I left he was stable on a high flow nasal
cannula and resting comfortably! This picture makes me so happy as he
is finally starting to look like our baby again.

I am at home with my other littles tonight but my heart is with Evan
and Dad at the PICU. Knowing that Evan is off of the sedation meds and
on light pain meds makes me want to be there comforting him but I know
Ben is taking great care of him. The next week is going to be
difficult for Ben and I who will both be wishing that we could be in 2
places at once! We will continue to take one hour at a time as that is
all we can handle most times. Xoxo, B

Comforting Evan has been my priority this morning. They have lightened
up his sedation meds since they are having more serious talks about
extubating him today or possibly tomorrow. They need to make sure his
airway won't swell shut once they take out the tube so they have
started him on steroids for that. He is breathing completely on his
own now with only pressure support because of his swelling. His
swelling continues to improve and they have even slowed down on the
lasix a bit since he his peeing so well. They say this is a hard time
for parents and I believe it! Since they need him less sedated it
means we have to see him more upset. He has been crying (silently) a
lot this morning and it breaks my heart! I have been holding his hands
and snuggling him with warm blankets to try and soothe him through
these times as best as possible. We have help for a few hours this
afternoon with the other littles so that Ben and I can both be here
with Evan. If they decide not to extubate we will then just take turns
holding the little bean and if they do decide to extubate then we will
also take turns holding the little bean!

The only new thing we are watching is some redness around his
incision. Hopefully it is nothing but I can't help but be a bit
paranoid that it could be a sign like before of sick bowel in his
tummy. The surgeons came in this morning and were ecstatic with his
breathing and ordered his foley catheter to be taken out to decrease
any future infection risks since he is not on antibiotics anymore.
From their perspective we now sit and twiddle our thumbs until we
start feeding on Wednesday.

We continue to be humbled by the love and support shown by so many
during this difficult time for our family. Without this I am not sure
where we would be at right now, so thank you!!

I am looking forward to some time with Ben at the hospital but can't
help but also feel a bit anxious to see Brody, Payton and Riley too!
Praying for the day for us all to be home together again to come as
quickly as healing allows :)

Xo, B

Sent from my iPhone

Sweet Cheeks

We are winding down from another busy day! Phew. Someday "Friday" will
mean something to us again ;) My goal this morning was for the 5 of us
to be out the door before 9am, we pulled out of the driveway at
8:56am. Ben and I make a great team. Payton and Riley liked seeing
their big brother Evan and I know Evan appreciated the brief snuggle
time he shared with each of them. P and R kept us busy during the few
hours we spent in the room before their swallow study downstairs with
a feeding, tummy time and a few stinky diapers each. We did draw a
crowd as we were leaving and I even had a nurse come and rub up
against me, she has been trying to get pregs for awhile, haha.

The boys *pretty much* passed their swallow studies, hurray for
weening off of the sludge!! By the nature of his course I a sure you
can imagine that Payton still needs a little more help, always has to
be a stinker! His problem now is that he has too strong of a suck!
This coming from the boy who would barely latch on a few weeks ago.
His forceful suck makes him penetrate a bit into his airway but it is
100 times better and can be followed clinically now so we shouldn't
have to do any more swallow studies. It is going to take a bit to get
them use to thinner liquids and new nipples but the pain of this will
be well worth it. I can hear the ca-ching of dollars and time saved
already ;)

Baby Evan had another day of improvements. Let's see, they weened his
vent settings down more, reduced his pain meds, took out his arterial
line, took out his IJ line (the ugly one in his neck), is still having
more green stool, and tolerating the increased lasix which is helping
him pee more! His butterball-ness (thanks Dr. McP!) is coming down
slooooowly but surely. He is laying on his side towards his belly to
give his backside and noggin a rest from the weight and his sweet lil
cheeks are back to being squishy and cute! He is softening up a bit
and hopefully the next step will be a reduction in his girth. They
hope to have his vent out within 48 hours, holy smokes- it's really
all coming together! The plan is to start feeding again slowly next
Wed or Thurs and that will be our "big test", we know he can do it!

Friday Cheers for all :)

--
:) Brooke

Big day!

The best part of today was getting to finally hold Evan! It took a
team of people to get him in my arms, but so worth it! He also had
his eyes open and was quite alert for about 15 minutes prior. He was
able to show his pretty blue eyes to the PICU Dr, his surgeon, OT, RT,
and a few RNs! He checked them all out and approved :) They have
increased the lasix again today and he is peeing well. They also took
a step toward weening down his vent. He has gone from a rate of 40 to
25 meaning that he is basically breathing on his own with assistance.
When he loses more water they will ween down the "assistance" which is
right now a pressure setting of 12. As I held him I tried to convince
him to get better quick by promising him things for when he gets home-
like all the breast milk he wants and the prime spot of being
sandwhiched inbetween his bros while they sleep ;) Today was a good
day!!!

P and R were happy to get out of the house. I geared them all up and
made it to my work a bit early so I could meet Ben there and we could
feed them before taking them to OT in the clinic next door (my work is
in the most convienent spot for a nice pit stop after our commute into
Portland...we were able to feed, visit and stink up an exam room with
some diapers before heading to their appt ;) ) We left the appt with a
lot of homework to help the boys along with their gross and fine motor
skills, but overall they are looking great and on track for their
adjusted age.

We have another adventure of appts tomorrow but they will involve the
trips being together again for a visit! Looking forward to another
good day :)

Sent from my iPhone

Only makes us stronger

If that saying is true Evan is going to be Hercules when he gets
older. I haven't had the rounding team come by yet, but after talking
with nurses Evan is still making progress. He received another
diarrhetic at 4am and has been peeing a lot more. I also saw this
morning that he had some stool in his ostomy bag for the first time.
The surgical residents came by to check on him before rounds and they
confirmed that it was stool and he is showing us that his bowels are
starting to slowly work again. Respiratory was also just here this
morning and they say he is breathing much more on his own. He does
still need the vent however because his belly is still so swollen and
babies such belly breathers it makes it hard to get big deep breaths.

I hadn't seen him in person since Monday morning and Brooke warned me
of this, but his eyes are so swollen that it's hard for him to open
them. I couldn't get him to do it last night, but this morning he
struggled a little, but he did it and I got to see his little eyes
again. His night nurse said he did it for her too early this morning
so I hope we are through that and they will be less swollen when mom
sees him later today.

We have another busy day today so I don't know if I will get to be
here for all the rounds, but they will call later if not. P & R have
an OT appt at Kaiser that I am going to meet Brooke at. This is to get
them checked out and make sure they physically look good and answer
any questions we have. B is going to a friends house today to play and
we so appreciate all the support with Brody that we have had. I know
he enjoys it and loves to see his friends.

Gotta go for now.

Ben.

--
:) Brooke

best.pictures.ever :)

EPRB

Evan

Payton

Riley

Payton

REP

REP

Riley

Payton

Evan

best big bro

Brody Benjamin

EPR

EPR

 

RPE

This is a sample of the amazing pics taken by Annie's Sweet Pea Photography.She truly captured each precious moment and then some. We are so fortunate to have found Annie when I was pregnant with Brody. She shot my maternity and Brody's newborn and 1 yr photo shoots. We absolutely fell in love with her from the beginning! We don't have enough space on the walls for the pictures I want to order :) She gave us 120ish perfect pictures! Gotta love the pee "out-take" pic (although the out-takes are usually the keepers!)

 

Come on buddy

I think my sense at rounds yesterday was correct because it seems to
be even more apparent today that they want to see some more
improvements happening. Don't get me wrong, they are very pleased that
Evan is staying stable off of the dopamine, but the bile is still
coming out of his NG tube and not the stoma and he is still holding on
to more fluids than he is putting out. The good thing is that at least
he looks peaceful and content. I hear other kids crying in here and
although I feel bad for them, in a sense I can't wait to hear my lil
man cry again. It has been over a week now since I heard his sweet
voice. All in time I guess.

The plan is to start the lasix again today since his creatnine did
finally come down to a level they are comfortable with. Until he pees
off a few pounds we won't be able to focus on getting him off of the
vent. Come on buddy, pee!!!

Ben and I had a very nice night at home last night. We had many
moments of anxiety about not being with Evan but we would call and be
reassured that he was comfortable and resting. It helped that he had a
nurse that we knew from previous nights. I am beginning to see a
pattern with the boys at home- no one is sleeping at the same time!
It's good in a sense that we get some 1x1 time with each of them while
the other rests, but bad in that we are always busy with someone. It
took Riley a while to fall asleep after the 9pm feed while Payton was
out like a light and of course the opposite happened after the 3am
feed. We fed them at midnight too, but I don't even remember if or who
anyone gave us a hard time. I guess that's a good thing...maybe.

We woke up early and got Brody ready to go to school, he was quite
excited to see his friends and for the fact that our neighbor, Brody
N, and his dad were going to drive him to school for us. The 2 Brody's
are in class together at times but B.N. is a bit older so he is now in
the class ahead of our Brody. We then geared up P and R to go to the
clinic so that Payton could get his next RSV shot (which he took like
a champ!) We then got the 2 scheduled for their Nicu OT follow-up appt
tomorrow morning, swallow study Friday, and Peds appt Monday! I can't
wait for after the 6 month mark, maybe then the appts will slow down,
I hope.

I have some more pics from the trips newborn photo session that I will
post in a bit...they are toooo cute!!

Xo, B

Sent from my iPhone

Small but mighty leaps ahead

We were able to get all of the boys weighed today:

Evan:
March 29th: 8lb 1oz       April 5th: 13lb 8oz NOT the weight gain we want to see :(

Payton:
March 28th: 7lb 6.5oz    April 5th: 7lb 12oz    

Riley:
March 28th: 7lb 5.5oz    April 5th: 7lb 14oz  This is a long way from his low of 2lb 15oz!

To put Evan's weight gain into perspective, he has gained the same amount of weight in 1 week that Riley gained in 10 weeks! I just talked to his nurse and she said that he is continuing to pee even without the diuretic (still not giving it since his creatnine levels are still high), so hopefully it will not get too much worse.

All in a weeks time

A week ago today I took the scariest ride of my life. I hope I am
never in that ambulance seat again. They made me sit in the front seat
because there was a chance they would have to put a needle in directly
down to his bone and they did not want me to see that. (that was the
only option they had since they were unable to start an IV after many
attempts at the clinic, luckily that measure did not have to be taken)

A lot has happened in this week but I feel like I see more change in
the boys at home than I do with Evan and he is the one I want to
change so quickly. Payton and Riley are becoming more alert and are
taking turns being the "good baby." Payton is suprising us all by
eating like a champ lately, much better than Rileypants (not sure how
we started calling him that)! They will both visit Easy at
doernbechers so they can have their follow up swallow studies done to
see if they can come off of the sludge in their milk. That would make
one less step in our bottle making process and save us $75 a week,
fingers crossed! We moved their peds appt back by a week for many
reasons so a nurse is going to come to our house this afternoon to
weigh them and make sure they are thriving. I think they look too
small but that's after I come home from visiting Evan who currently
looks like a linebacker. (I am hoping linebackers are the big guys, I
really have no idea;) )

When I came last night with Gma S I was surprised to see how much more
swollen Evan was, like now he's really, REALLY big. They assure me we
are still going in the right direction though. My "sense" from rounds
this morning is that they want to start seeing some more improvements
now. He is off the dopamine completely which is great, meaning that he
can keep his blood pressure stable without medicine. They also haven't
had to mess with his vent settings but know that they can't ween off
until he loses some fluid. Since they started the diarrhetic yesterday
his creatnine labs have went up so they are holding the next dose of
lasix, grrr. The surgery fellow also commented on the ng tube still
draining green bile meaning that nothing is moving much past the 1st
portion of his bowel, they want the ng to show clearish gastric
secretions. I mentioned this to the intensivist attending while they
did their rounds and he was going to check with surg to see if they
want to give him some contrast and check with an xray for any
strictures. The PICU is (unfortunately) hopping this morning so rounds
were quick with the promise to come back. They did close with saying
they are still unsure as to why this happened to Evan as they never
found infection or malrotation to be the cause. Hrmmmph.

I did get a laugh after the surgery fellow left, her parting words to
me were "Get some rest mom, you look tired. Let us do the hard work."
Easy for her to say! I am excited to get a report from Ben though, it
was our first time having a night nanny last night! We are going to
try it a couple times a week. Also, some of the fabulous MOMs from our
multiples group (full house moms, FHM) have donated doula hours to
help us out and keep the care of the littles at home consistent and
ABC Doula agreed to match those hours- now that's generous!!

We have also been blessed by being very well fed! Seriously. The FHMs
and my work have been saints. We have enjoyed BBQ chix sandwhiches,
chinese food, corned beef/cabbage/potatos, pizza, chicken and veggies,
and soup and bread! Wow. The amounts are so large that I have been
able to freeze some for future need. I know that there are still many
unanswered calls and emails offering help that are so much
appreciated! I hope to get them answered someday...

No harp for me today :( so I will sign off for now.

Xo, B

Sent from my iPhone

Evan the Great

Just a quick update from Dad.
My second night here went pretty good. Evan is still making
improvements in all aspects. The PICU team and Surgical team that was
off all weekend is back on today and have all said how much better he
looks and his numbers look compared to when they left on Friday. They
have gotten him almost all the way off of Dopamine. He has went from
10 to 2 with that. He is still stooling a little, but with the lower
Dopamine his urine levels are dropping so today they are really
watching that and deciding whether or not to do another transfusion to
help to suck fluid back in to blood vessels and they would follow that
with a diarrhetic to assist with expelling more bad fluid through
urine or stool. They have also been very slowly weening pain meds
which means he is less sedated and also means he is breathing more
unassisted by the vent which they hope they can start working on
getting off of. All in all he is still very swollen and they really
want to see that decrease so fluid levels of everything is being taken
in to account from the meds he is taking to the IV and everything else
to help him get rid of some of this.

The chief that was his Dr all weekend was just in here and said that
he was off today, but wanted to check him out. He said that from his
point of view he thinks he is looking better everyday. He asked if he
could check on him daily even though he wasn't legally on the clock
until this Friday. So E sure has made quite an impression already on
everyone here. Mom put together a poster board of pictures of him and
his brothers and our family that hangs outside our door and you should
see the groups of people we get sometimes that stop and check it out
and stare sometimes for 5+ minutes. Quite the attraction...

I wasnt going to write this much, but a lady just came by and asked if
she could play her giant harp in our room so I said yes and it sounds
really great. I think Evan likes it and it makes me want to listen to
a giant harp every time I blog.

Still Fighting!
Ben.

--
:) Brooke

Yay for stool!

Of course I missed a major event when I went down to get the good
coffee, Evan started stooling! I have never seen so much happiness
about a brown watery filled sac. The fact that they needed to put an
ostomy sac on is a good sign I guess. This is the 1st stool I have
seen without blood since Tuesday so Mama is happy. I hope this means
that his bowel is doing a good job of repairing itself.

Morning rounds were more of the same, he isn't out of the woods yet
(far from it) but they are very pleased with where he is TODAY. They
said his physical exam may look the same as yesterday (his belly girth
is still big at 42cm) but his numbers look better. They have weened
his dopamine down from 10 to 6 and want it to 4 by end of day. I know
the surgeons will like that as I believe it will help the blood
perfuse his organs better (the dopamine has been helping keep his
blood pressure up). They are going to try and go down on his vent
settings if tolerated today but won't push it. They really won't be
able to see how well he can ween of the vent until his belly swelling
goes down and stops squishing his poor lil lungs. The good thing is
that his lungs aren't sick so when his gut gets better the vent should
be able to be weened quickly.

I was able to do some leg excercises with him and he gave me a few
googly eyes telling me he loves me :) I am patiently waiting for them
to give us the go ahead to hold him, not sure if I will be able to put
him down! When I go home to my other littles they look so tiny to me
again! I am glad they have a peds appt tomorrow so we can get them
weighed and make sure they are on track. We also have a 2nd swallow
study scheduled for P and R on Friday, maybe they will get to come off
the sludge!!

People keep thanking us for blogging to keep them posted and we thank
you for caring and praying!

Xo, B

Sent from my iPhone

Dad's night with Easy

I was able to stay the night last night with Evan while mom went home
and did the overnight routine with Gma S and the other 2 boys. Brooke
left the ICU around 10pm last night and I sat quietly with my boy for
a while just talking to him and telling him all the hopes and dreams I
have for him and all the things we would be doing when he gets out of
here. I only got a few finger twitches and toe stretches, but I knew
he was listening and liked what he was hearing.  I let the nurse know
to wake me if there was any problems through the night and also in the
morning for rounds if i wasnt up.  I kissed him goodnight and then
settled in to the comfy bench/bed accommodations that they have here.
To say that I was tired and needed some sleep is putting it lightly. I
turned on the iPad and surfed a little and before I knew it it was 4am
and I had an iPad on my face and needed to use the bathroom. I checked
on Evan and laid back down and it was 8:15am the next time I woke.  I
was kind of upset assuming that I was never woke up for rounds because
Brooke said they were early around 6 or 7am. I talked to the nurse and
because it's Saturday they round later starting at 9am.  We have the
same day nurse today as yesterday and after looking for changes in
Evan's swelling myself I couldn't tell any difference, but he assures
me that he thinks he looks much better than yesterday.

Grey Anatomy then came by to do rounds at about 10:45am to do rounds
on him today. He still has a lot of leaking with his blood vessels and
a lot of fluid in his body. He is making progress but very slowly. The
chief who is his Dr again today said that "things that happen slowly
is good, things happen fast is bad". All of his stats are better today
than yesterday, his swelling is slightly down, his stoma's look good
and are looking a little more pink than dark, and his acid levels are
down. One of the main things that the Dr is looking at in terms of
the bowels that they behind and hope improve on their own is his acid
level and how much he is expelling which has gone down, meaning not
producing the levels he was before. He is also not as sedated today
and responding to light stimuli. All these things summed up means
that he is improving at a very nice slow pace.

OT then stopped by after rounds to show me some light range of motion
excercises that Brooke and I can do with him daily. I liked this
because I think we both have felt so helpless with his care and this
gives us some hands on things we can do to help him get better. When
we started I saw with even the slightest touch now he was responding.
He gripped my finger and actually assisted when doing some moves with
his legs and arms. He also briefly opened his eyes and looked around a
little which was beautiful to see and which he hadn't done since
Tuesday. All in all a pretty good night and great morning.

Thanks again for all the prayers and support from all our friends and
family! Couldn't go through this without you! We're all still
fighting the good fight!

Ben

--
:) Brooke

Huh?

"Stabley unstable"

"Critical but stable"

"For how sick he is, he really is sailing through it"

This is what we have been hearing today. Kinda contradicting right? Oh
well, "critical" is much better when it is paired with stable. We did
witness just how much they are on top of Evan's status though. He
dropped his heart rate and before I even knew what was going on they
were drawing up meds and a resident followed by an attending appeared
right away as well. They say this is still him getting more sick
before he gets better, but i am not sure how much more "sick" I can
handle. They also drew lab cultures at each site of entry (picc line,
central line, cath) for a new fever he spiked but they are thinking
now that it may have been a reaction to a change in his bed heater.
So, we had about an hour of excitement and he seems to have settled
back down now. Ben is going to be staying the night tonight so we
should all expect a thorough post tomorrow morning after rounds,
right? :)

--
:) Brooke

Cock-a-doodle doo!

Morning rounds seemed to have come quick today. I felt like I just put
my head down to rest and then was all of a sudden opening my eyes to a
room full of people (which I still haven't gotten use to but no one
seems to mind my bed head and sleeping mask!) I have to say that last
night was the longest stretch of sleep I have gotten since at least
before I was admitted to antepartum last December! I didn't even wake
up to pump and I don't even feel bad about it ;) I think tonight Ben
might take a turn at the hospital and I will stay at home with the
littles.

Dr. B is on again today, he is the chief intensivist that was here
when Evan was initially admitted on Tuesday. His closing remarks to
the rounding team was that Evan is in a much better state but is still
critically sick and "you better watch him like a hawk and dot your I's
and cross your T's." We have another great RN today who is doing just
that.

It's hard for me to believe when they say he looks good because to me
he looks so bad. He is about the size of a 3 month old due to the
swelling and inflammation, when just a few days ago he was the size of
a newborn. Every part of him seems to be stretched out to the max, I
can't wait for him to get some relief from this for sure. He is very
stimulated, but not in a good way, from all that is going on around
him. He let's us know by pulling away when we should stop touching or
doing range of motion excercises with him. His surgeon was here this
morning as well and was happy with the appearance of his stomas. A
friend from back home who is also a pediatrician resident here had a
good explanation for me after Dr. Z left, he really is practicing the
"art of medicine." All of the things he was much more concerned with
before have altered some and it's not this or that but it is the big
picture. This is harder for parents to grasp because we don't have
goals that we can focus on. I thought we were watching his lactate
labs for improvement and then Dr. Z says he doesn't care about that or
the bladder pressure I kept hearing about or the redness on his belly,
but rather a culmination of everything combined with his experience
and I sure a bit of "gut feeling." I trust his instinct though as I
feel he did a great job of deciphering the appropriate time to get
Evan into surgery and I trust that he could do that again is it came
to it.

Here is a pic of one of my favorite practices here- the positioning
aids! I love that instead of using a sponge or wedge to prop his vent
or one of Evan's limbs they instead use various stuffed animals. The
rooster was the first to appear in his bed and he also now has a puppy
dog and a lovey brought from home as well.

One day down

It feels good to have made it through 24 hrs post-op without any major
complications. Evan's labs went up once today to keep our nerves up
but they have since come back down again. They are still not close to
normal but not in the surgery danger zone. His platelets are still low
so he did have some more transfusions throughout the day. He also had
a vascular ultrasound to rule out a blood clot in his left leg which
is swollen, it was negative thank goodness. Evan is very swollen right
and it pulls my heartstrings to see him like this so much! His poor
man-bag is like a tangerine! Ouch!! They said we can see about maybe
holding him tomorrow but hopefully for sure by Saturday. They do not
want any pressure on the stomas which they are watching very closely.
The hardest part for me is not knowing what is going on inside that
little belly and just praying that the bowel is healing and not just
resting or worsening.

We are very comfortable and confident in the care Evan (and us) are
receiving. There are many brillant minds here from the nurses to the
residents, fellows and attendings! I am finally starting to understand
the structure a bit ;) I love being around when they do rounds, it's
like watching Grey's Anatomy. And I love that they are 100%
transparent with all information and multiple people are available to
answer questions at any given time.

Ben got to visit the boy's Nicu today (not at this hospital) and bring
them a couple of pictures. We really miss the comfort of what we had
with everyone there but are very quickly getting adjusted here...we
just have a longer commute now. I still feel like we have a Nicu
"family" and know that they are all praying for Evan too! (one of my
antepartum RNs even offered to "watch the other 2 brats" for us, gotta
love K!) I know I have said this before but we really can't believe
the prayers, support and offerings we have received from so many,
words can't describe how much it means to us.

Big Bro Brody is loving his time with Gma S and has even had a couple
playdates this week. I was able to go home for a few hours while Evan
rested and snuggle my boys.

I am off to get some rest myself now, finding the swoosh of the vent
is making me quite sleepy!

Xoxo, B

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