Kyleigh's second night

Travis went home that evening to stay with Micah, despite all the drama.  The nurses talked  me into sleeping on the OB side for a few hours... The Nicu was really busy that night with an emergency surgery on the floor (never a good day), so we really weren't supposed to be over there anyway.  At about midnight i went over to check on her and caught one of the neonatologists that was there for the surgery.  He explained that he'd examined the ultrasounds they'd done during the day, and that they saw something that appeared to be a mass in her abdomen, between her spleen and her stomach.  it was about 1x1" and appeared to be not attached to either organ, but it was hard to tell.  He wanted to do a CT scan immediately to get more information (of course there was a multiple trauma car accident that night and radiology was really busy).  He also advised us that since he wasn't sure what it was, we should be prepared for possibly doing surgery in the next 24-48 hours.

I'm pretty sure after he explained all of this my reply was, "What?!"  No one had mentioned any sort of mass, the ultrasounds were supposed to be of the area of her intestines that was of concern.  Thanks be to God, the doctor on that night is probably the sweetest and easiest one to talk to in the group.  He did his fellowship at Cincinnati Childrens, and has the great bedside manner to prove it.   Anyways... so here I was, trying to figure out what to do.  Do I call Trav is the middle of the night and have him drag Micah out? At least I had my wits about me enough to realize I could call my parents and have them come over to our house and have Travis come up here.  My parents were already having a heck of a week with her in the nicu and my grandpa in the hospital, but they'd kill me if I didn't call, so I did.  Don't remember when exactly Travis got up there, but they got her down for a CT at around 5 am.  The doctor came by shortly after (if i remember right) and explained that whatever was on the ultrasound, there was absolutely nothing on the CT scan...  Whatever it was had disappeared or never was there to begin with!  To this day there's still debate on what went on that night.  We'll rack it up to Hartman family miracle # who knows how many.  We were so relieved beyond imagination and promptly passed out in the hospital couch and chair.  LONG night.  

Baby Kyleigh, the first 24 hours...

So I haven't/haven't been able to share many details about the last almost 2 weeks.  So, here goes. We'll start with the happy part.

Rumor has it I'm (Brittany) pretty stubborn.  I didn't want Micah to wake up the day she was born and not have one of us there, so Travis stayed home til he got up and then met me at the hospital about an hour after I had to be there.  My admitting/surgery nurse was a sweet, amazing woman.  Due to all the pre-op questions, Micah's story started to come out.  We both agreed this would be a planned, smooth going event. She went through all the details when I asked her to, and I was feeling WAY more calm than Travis by the time we went to the OR.  He was ready to get it over with!  Much to everyone's surprise the OR was running on time, and we went back.  Everything went well and was much more relaxing than the pre op process with Micah.  When the doctor came into the O.R. she commented that we'd made it full term... and that she didn't think I thought we'd ever get to this point... and she was right!
When she was born, the doctor said, and i quote... "no nicu this time" and "she's perfect!"  We got to see her briefly, and Travis went over to her bed to check on her.  Her color was slightly off, but she was screaming in no time.  When they were fixing me up, she went off the nursery to get cleaned off and wrapped up.  Her body temp was a little low (maybe because the OR was freezing! Even the O.R. nurse said it was colder than normal!)  so she had to stay there until her temp got up, she got a bath, then got her temp up again.  Sadly that was probably an hour or more. :( Trav had the camera and was going back and forth taking video and pics so i could see her.

Pretty clear on how she felt about our cold, cold world :)

The next few hours were a little morphine hazed, but she was good and being passed around the family. She was nursing well but spitting up sometimes.  We opted to have her sleep in the nursery in case she continued to spit up, which she did.

 As you can see, we were all thrilled beyond belief at our sweet little girl... even Micah was sold on her once he got over the "what on earth is going on" factor.  :)  She slept really well overnight (and still does, mostly!) and we all got a little rest.  Next morning she relaxed with all of us and was nursing, but spit up after every attempted feeding.  That morning she spit up a pretty good amount of old dark blood.  We were assured by multiple people that it's not uncommon and she probably swallowed blood during delivery.  Since blood is really irritating, that was probably causing her tummy troubles.  Next feeding though, she spit up bright red blood.  Not a ton, mixed with saliva it made a couple quarter sized stains.  This, however, is NOT normal, and the medical staff started moving much more quickly...

All in the first 24 hours.   

Baby girl updates

Wednesday:  Kyleigh got to eat today!!! She loved every drop. Plan is to start slow and increase as she tolerates

Prayers please for me this time. Having complications. The e.r. told me to wait til a.m.. to see what.my doc wanted to do. Now its morning and things are considerably worse.
  
Thursday:  from mom: Keep Brittany Weaver Hartman in your prayers, her incision came open last night. She is in the OR right now to close it up.

Well they put humpty back together again. Not my favorite day.. kyleigh is doing fine. She has been able to get all her bottles!

Friday:  We are increasing her feedings... hoping her tummy will move a little faster... she gets 20 ml or 2/3 oz. Per feeding. 

She's up to 25 mL's per feeding, and if all goes well she'll hit the one oz mark at midnight!!! 

These are a few days old, but i'm way behind getting things up.  i can't get on blogger from our tablet, and Trav's had the laptop to do school papers. So sorry.

The plan is to increase her feedings today and Friday, and probably be up to full feeds on Saturday if all goes according to plan.  Her x rays are good so far and labs are great.  We got her belly moving (that's the nice way of saying it) because the barium seemed to be holding things up. Hopefully this solves our belly problem... if not we might need to figure that out as well.

if you want to visit call/text one of us, so we can TRY to avoid having a ton of people at the same time. With only one visitor coming back at a time, it can take awhile.  Please only visit if you're healthy and over 18.  

Kyleigh day 4

Pretty much everyday in the nicu has its good moments and bad moments.  Her morning x ray showed the pneumatosis was a little worse than yesterday, but not as bad as Friday. She has more blood in her belly than yesterday too.  They sent it off to see if it's still my blood or if it's hers... most people vote it's probably hers.  They started zantac in case, which seems a really wise move in case there's any slight upper  gi bleeding.  Her blood levels are good, her h/h are going up, if she had any signifcant bleeding, they'd be going down.  The docs are slightly baffled because she acts so well... But the plan is to play it safe and stay w/ the 7 days of antibiotics and no food.  They're not resetting our 7 days quite yet, they'll see what tomorrows x-ray says first.  She's fiesty and strong and adorable and we can't wait to bring her home.

More coblation...

He's out and alright... They weren't able to get in and do the normal tonsillectomy surgery, so they did some coblation to reduce the size of his tonsils, base of tongue and uvula (sp?).  Should help open things up, but a much longer road to the trach out this way.  The good news is they want to try a speech valve on him next trip down, in about a month... that's great news!  We all agreed it's time to slow down and let him have a normal life and longer time periods between surgery, since the trach isn't coming out too soon.  Guess it's the tortoise and the hare.  

Here's a little primer on the coblation deal.... i'm not sure it's a great of a deal as it's put out to be (or why would they not do it all the time), but you get the idea.


Unlike traditional tonsillectomy procedures, which remove tonsils using electrocautery, coblation is advanced technology that combines gentle radiofrequency energy in a saline "bath" to safely and quickly remove the tonsils. Because electrocautery procedures use high levels of heat to remove the tonsils, damage to surrounding healthy tissue is not uncommon. Since coblation does not remove tonsils by heating or burning, healthy tissue surrounding the tonsils is left intact. Thus, experience has demonstrated that the use of coblation results in significantly less postoperative discomfort and a more rapid recovery.

Patience is a virtue.

Things in the hospital can take forever.  This shouldn't be news to anyone, but boy... it's annoying.  At 11am, they decided to admit us.  By 12:30, we got to our floor.  By, oh, nearly 3 they got him into the system.  We saw the vascular access team at 4:30, and didn't get the orders for his meds til 5:30.  Didn't GET the meds til 8:30.  So, we ran around the floor all crazy most of the day because he had no reason to be in his room... Not my favorite way to spend the day! 

He's on i.v. vancomycin and rocephin (for my LM friends), two potent drugs.  i haven't had the nerve to as if the delay will cause us to be here another night.  We're on contact precautions i guess, which means the nurses are supposed to be wearing gowns and gloves... They told me that a few minutes ago.  So that probably means we can't leave the room, which is bad news for a 2 year old who feels otherwise fine.  His meds will run for 2 1/2 hours a day, otherwise he's unattached and in a room... oohh child life! Could be a very long day tomorrow and Sunday. 

He's fast asleep now and finally getting his meds.  Patience, Brittany... or, go to sleep. That's good too.  He doesn't have ANY night meds.. only vitals every 4 hours.. yippee!

Pretty decent day

Surgery started on time, and even almost ended on time, only 20 minutes late!  He slept for probably two hours and hasn't been up much overall.  They were able to get the opening they wanted which was the whole goal of the day. Dr. E did a little more on the right side to bring that down a little if possible, but really the results we have already are pretty good in the world of LM.  We'll try to do a little more sclerotherapy, maybe next time (2-3 months) and lots of airway lasering. 
Micah lost a front tooth in the process, something isn't right that his teeth come out this easy.  They didn't do anything in the airway this time.  Hopefully today will lead to good results in the future.  The docs were pleased when they came in, and that doesn't happen much.  :)
He's fast asleep, and now we're playing the pain game... trying not to over medicate him but still have his pain well managed.  Morphine and tylenol will hopefully be all we need... Dr. E and i agreed that we are here for pain management and not the drain... So that should shorten our stay.  Hopefully we can get out Sunday or Monday... that would be SUPER.  We already have to be here Thursday for a post op visit.  Still no word on whether her needs iGG.  it's about a 5 hour affair, no big deal if we're going to be here but the results may not come in for a couple of days... Silly labs. Maybe it'll be something we do Thursday when we're here.
We're on a different floor than usual, so no familiar faces :(  And no spoiled rottenness.  Hopefully we can get to the playroom tomorrow though if he's up to it!

Grumble, complain, whine, moan, etc.

We're here til Monday, folks.

Could you guess who doesn't want to be here til Monday?

This is the best pic we've gotten today (mainly because we haven't had Travis and I in the same room for more than a few minutes).

His eye swelling is going down, but his lower half of his face is still really swollen. It's almost like his mouth is swollen open... the tissue is so tight. I'm hoping that's all it is. He doesn't seem like he can move it. Thank goodness for feeding tubes!

I know it's probably not something most can relate to, but I'm so glad for familiar faces around here. We've got the herd of vascular malformation people which visit at least once a day. Our first night when we were in the PICU we had a night nurse we'd had a few times before... she's nothing short of AMAZING. Today, in walked our favorite PCA (i think it's equivalent to a CNA, sort of.) His name is Jarvis and he's always fun. He was excited to see Micah, and he's a lot more fun than your average PCA. He got Micah a very "boy" blanket for his bed... It's the little things really!

He got out of surgery about 5, and all moved in at about 6. They decided to put him in the ICU and keep him sedated all night. That was a good possibility all along.
He's stable and off the ventilator, but requiring oxygen. That's not too unusual since he's sedated, at least he did that last time.
The long story short is we have to wait and see what nerve function is left when he wakes up. They looked for an hour for the main branch of the facial nerve to no avail. It's an ugly part of this disease. The main part that was left was controlling his eyelid opening and closing... Probably needless to say that's a really, really important one to keep.
He's sleeping soundly now, all tucked in with all his tubes and wires. (Literally 6 of them total, wow!) Hopefully he'll get good sleep so I can sleep some. Oh, hospital sleeping, how I haven't missed you!

The updates as they come. 3:30 update

4 hours 15 minutes. They haven't encountered any major problems such as bleeding. They are done with his "face" and are working on his chin. Not exactly sure what that means, but it'll be a little longer. No word on whether they found his facial nerve and got it out safely. Still hoping to be done by the 6 hour mark (that's me speaking, not the doc). That'd be 5:15
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He went back to surgery at 11:15... Got an update at 1:05 that things were going fine. That doesn't mean a lot except there are no major problems.
They said they would try to update every two hours or so.
So we wait.

So, we finally got out of the hospital at 4pm and headed home. His IVIG went off without a hitch once it finally got going. No adverse reactions at all. But, we are faced with a new problem... The kid has high LDL cholesterol and triglycerides. (Inside I'm saying, are you kidding me! Okay, maybe I said that outloud). The kid is in the like 10th percentile for weight. The kid gets basically JUST pediasure. Everyone is scratching their heads, needless to say. It really feels like everytime we do anything, something else happens. The rapamycin can cause this, but it seems unlikely that's the only problem (it was high after a week of a starter dose). Does the kid need lipitor or something? He's not even two!
So, his IGG level was below 140 (supposed to be at least 350-400), not 240 like I thought. Not only that, this week it was 91. But with the IVIG it should be back in happy land, at least for a month. I'm really starting to pity these doctors trying to keep everything straight.
I have a tendency to play out the future in my head, but I can't even do that anymore. It used to be "do this, then this, then this..." you know, something that resembles a plan.
Here's where I sigh dramatically.

Some info...

So, this new medicine came with a little stronger warning from the Hematologist/Oncologist than we'd previously heard. This medicine is her 'baby' so to speak, she's overseeing the clinical study and the kids not on the study as well. We're back to being "on high alert" when it comes to sickness and germs. The first 8 months of his life were that way, and to a lesser extent, this last winter. But, back to high alert. We're thankful for the fact it's spring and there's less going around now than a few months ago. But, we were looking forward to getting out and doing group things... which isn't going to happen now... For at least a couple more months.

The docs want to know anytime he gets ANY type of illness. Luckily, our Ped knows us well and does not hesitate to see us anytime something is up. He's a great partner to the Cincinnati crew.
Therefore, we will be cutting our outings at church down at least a little and not taking him to the store as much as possible. Luckily the majority of youth stuff is outside in the summer, less likelihood of getting exposed to germs.

But... if you're sick, your kids are sick or anything like that, please keep your distance from Micah.

Anyways, enough depressing stuff, here's the cute kid. He's such a trooper! We've been to Cincinnati 3 times in 8 days, and he really hangs in there for us. It would be nice if we lived closer, but at least we're not any farther away!

Meet the Trach Fairy..

This is the trach fairy. The sign says "When a person no longer needs a trach, the trach fairy takes it and gives it to someone who needs one. This year B5CA (floor) and the trach fairy have collected..." And this sign says 6, but now it says 7! Happy decan to the little guy down the hall!

And someone, please let Ronald know next time it's going to snow. He might want to dress warmer.

Here's Micah making (hopefully) his last visit to the playroom. We have to go through the main concourse so we like to try to keep the germs away. He doesn't even really mind the masks!

Well, ENT just came by and took out the stitches from his incision and hooked up his drain to suction (a little squeezed bulb). That should (SHOULD) be the last thing.

Fiesty mama on the loose.

I'm really starting to push about what (if anything) can be done to get us out of here (at least across the street to the Ronald McDonald House). I can empty a drain every 6 hours... the question is just about antibiotics. Is it worth a PICC line to get out? Maybe not, but it's hard to say not knowing how long this will keep draining. Some kids take weeks... Hopefully regular antibiotics will suffice. Fiesty mama on the loose! He's just so much more unhappy here.

In my opinion (I gotta be careful, I know some of his doctors have his blog)... there are two decisions to be made. Can he be on oral antibiotics or does it have to be IV? Is a PICC line worth it to get us out of here? A nurse would probably have to come out to the RMH to check on it, which happens frequently over there. (His peripheral is dying fast, so we need to make a decision..A peripheral only lasts a few days, a PICC can last a lot longer.) He needs antibiotics every 6 hours. If it has to be that he stays here, that's fine, let's just decide that instead of pushing it back another day.

I know, I know... impatient much?

Another day...

Well, each day we are here they keep adding another day. It's such a fluid (pun intended) process. The drain they put in yesterday was capped, but still leaking around the site. They uncapped the drain and got out about an ounce of fluid (some lymphatic fluid, blood and doxycycline). They've got it on bulb suction, which is supposed to pull it out and pull the area together so it'll scar shut from the inside. After about 24 hours they'll see how its' doing and take it off suction if they can. Then they'll watch for awhile (read: another day) and see how he does. I'm starting the idea "can't we just do this from the Ronald McDonald house? It's like watching paint dry around here!

The good news is we get to go to the toddler playroom this afternoon! Hooray! We've not been there before, but it'll be nice to play somewhere other than our room. We've taken periodic trips around the unit, but we'll have fun playing.

In surgery... out of surgery

Update: Alright, he's out. Only took an hour. He did fine and we haven't seen him yet. More later

He went down about 10:45, they blocked out an hour and 5o minutes. The poor kid was just starting to act like himself.

How in the world?

Our ENT thinks Micah's such a serious little guy (and sometimes it's true) But if he can pull out a smile after the day he's had... that's pretty impressive.

If the area they removed of the LM fills back up with fluid we will likely be headed to the OR to have the area injected with a sclero agent. Sometimes it takes one time, sometimes two.

We may not know too many ppl in Cincy, but we had a room full of our doctor-friends just a minute ago. The hematology/oncology Dr on the vascular malformation team, our ENT, a guy who was just hired on here, he was around as a resident/fellow here when Micah was born. Strange thing is Travis and I actually remember him! We've probably met 50 doctors/residents/fellows since he was born. We also had one of the nurses from the from the clinic. All these smarties and Micah just snoozed through the whole thing. :)

The poor kid is just beat. He doesn't want to even sit up, let alone get out of bed. Hopefully he'll be feeling more like himself (although that would be a different problem!) soon.

We're on the fun floor now, they have wagons you can take them for a walk in!

We'll let you know if we end up in the OR tomorrow.

Oh, gross.. ooh...

So, Dr. E just came to the bedside and drained (violently) at least 2 ounces of fluid from the mass... Oh goodness.... Probably the most disgusting thing I've ever seen (and blood doesn't usually bother me). Travis is sitting here going "wow, that was cool". Don't let him fool you, he didn't watch most of it.
The difference is absolutely crazy. I can't get a a pic because there is a bunch of gauze in a mesh netting around his neck... but wow. It's a huge difference. Since it apparently wasn't draining like it should-you could have fooled me- they may have to do sclero to stop it. Dr. P just peeked his head in to get a baseline, and we'll decide tomorrow. Unfortunately Dr. E is leaving for a peds ENT thing in India tomorrow, and Dr. P is going to be gone Wed/Th. Micah needs to get it together soon!
Oh... gross, I really just can't get over how gross that was.
The stitches need to come out Thursday, probably. Dr. E said there's a small chance we'll still be here in the hospital, but hopefully not. It looks less likely we'll get out tomorrow.

Sneak peek!

They finally took off the dressings and the headband this morning! :) Of course, it's really, really swollen (you can tell even his eye is swollen). From what I've been told, the middle third (from top to bottom) is where they worked, and from his cheek all the way back to his spine. I'm not sure he will look too different from the front.

They'll be covering it up with gauze soon, so I thought I'd snap a picture. They said we get to move to "their floor" (ENT has their own unit). It's a slight step down from the ICU. We can have more visitors over there, even though our visitors went home yesterday). There's a few other differences. He should be able to get up and out of bed over there. After 4 days of being in bed, that oughta feel good. Micah keeps signing 'up, up' so it'll be nice to get him out of bed.

I hadn't thought about it until the middle of the night, but they've been so concerned about this damaged blood vessel that they took him off his feedings and put him on IV fluids in case they need to ship him to the OR. Yikes! That hadn't crossed my mind, nor had I heard anything about it. Hopefully they'll let him eat again soon.... or else... dun dun dun... We'll have one cranky kid. But for now he's resting-ish, just wishing that people would leave him alone. They had to draw blood at 4am... if looks could kill....

Still no word on when they'll let us out of here. Either way, we have to stay til Thursday to get the stitches out.

The next Howie Mandel?

Hand sanitizer, anyone? I think we're making a compulsive little boy :) It makes me laugh, though, everytime. This was the night before surgery in our little hotel room.

They've got soft little elbow straighteners on, so he can grab any number of things he shouldn't have. The surgeon gave us a call and said he'd come by in the morning (thank you!) and that we should get the pressure dressings changed then. The drainage has slowed considerably, but that's always subject to change. When I asked about when we were getting out of here he gave a little chuckle. He knows how antsy I am. Unfortuately it's one of those things you don't know til you know. The drainage needs to slow to a minumum and everything needs to look good underneath the dressings. We also found out he can't get the stitches out til a week after surgery. I think we'll just end up staying down here til then. Not a lot of sense hauling him in this state back to Indiana Tuesday (or so) to bring him back Thursday. We'll see. He can get morphine every hour, but he only seems to need it every 3-4 hours, which is good.

Micah's a tough little cookie, and he's starting to win over the nurses, even while he's not fully awake yet!