Category Archives: NICU

YOU Have a Say in Your Child’s Care

AngryBear

 

What a day.  This was the same day that I got to spend doing fun train stuff with Hudson.  It was also the same day Grant came home.  In addition to that awesome stuff, though, it was a day something wack happened.  See, up until this point, we became pretty food mainstays at NICU.  The nurses and staff knew us and we were there a ton.  In fact, we were part of the process: when the time came, the nurses would let us help by taking the twins’ temps and changing their diapers.  Easy, but it was a great way to stay involved and have hands-on time with the boys.  And even if one of the boys were to poop when it was not scheduled diaper time, they would tell us it was ok to change it whenever we wanted.  Today, though, this was different.

On the way back from my day with Hudson, my wife called to say Grant would be discharged, but she was also very emotional as she told me about this really rude nurse who wouldn’t let her do anything with Nolan.  At one point my wife heard him poop and when she went to change him, the nurse yelled at her and said he wasn’t scheduled to be changed yet and it didn’t matter if he pooped or not.  Well as I soon as I heard that, I was PISSED.  Like that bear up there (you’ll see him again later).  One thing I DO know, is that working for the same healthcare provider as the hospital meant that patient complaints are taken very seriously.  And if you remember from a previous post, the NICU staff provided me with a handy-dandy list of important phone numbers…one of which was the Nurse Manager.  So I called that number and calmly explained the situation.  Adding with rather sharp emphasis that, “I do not appreciate anyone allowing my son to sit in his own waste for any length of time.”  The nurse manager apologized profusely and said she’d handle the situation and would like to meet with me the next time I was in.  I told her I was on the way.

When I got to the hospital, she was there to meet me outside of the NICU doors after I did my 2-minute hand-wash and gowning.  I told her before we talked I just wanted to go in and say hi to my wife and twins.  I went in and noticed Nolan’s numbers on his monitor were a little low.  So I leaned down and said “Hey buddy, I’m here and i love you.  I’ll be back, ok?”  and his numbers went up.  Told you…we have a bond.  I did the same for Grant then went off to meet with the Nurse Manager in her office.  She was very cordial and again apologized for any problems.  She said she spoke with my wife and the nurse and that the main issue centered around Nolan having some lower oxygen saturations that day, and they didn’t want him too worked up through too much human contact.  She also said the nurse in particular had many, MANY years of experience and only wants the best.  In the best way I possibly could, I told her I didn’t care if the hospital was built around that nurse, she needs to treat people better…like human beings, with good, clear communication.  If she just SAID something, it wouldn’t be such an issue…instead she had to be all stank about it, which caused this hullaballoo in the first place.  And I told the nurse manager, “I appreciate your expertise, and I will keep contact with him to a minimum…but if I want to hold his hand or his foot, I’m gonna hold his hand.  And you will not stop me.  That’s MY son.”  To be honest, I didn’t feel completely satisfied with the meeting, but it was more important to me to voice my concerns and be on with my life; particularly spending time with the twins and getting Grant ready to come home.

Unfortunately, people talk.  That evening, after Grant was settled in at home, I went back to the NICU for a few hours to hang out with Nolan.  I sat real close to him, held his hand for a little while, but mostly just sat quietly, prayed, or talked to him.  When I got there, I asked to see his nurse for an update.  At this time of day, the shifts had changed, so it was a new nurse, thank GOD.  She came up and I asked how he was doing, and after her report I asked if it was ok for me to just scoot up close to him and talk to him quietly.  Her response blew my mind.  She said something like, “Oh yeah, I heard about that.  You know, like, you’re the parent, if you want to do something, you can go ahead and do it, I won’t stop you.”  That was frustrating.  So apparently word got out and suddenly I was the Ogre Parent.  Great.  I tried to assure her that it was merely a simple question and I just wanted to do what was best for him, but I got the same kind of response.  Ok, whatever.

Listen, sure i was labeled as a bad guy by a small handful of people…but it was worth it.  I put those bustas on notice that I didn’t want them treating my family like just another number.  We got incredible care at the NICU, so don’t think a few knuckleheads ruined it for us.  But it became clear to me that things aren’t always communicated well, nor do they happen in a manner you like or feel is fair.  SAY SOMETHING!  It is your right.  As a parent, you are your child’s best advocate.  Trust your gut and let someone know how you feel.  Sure, there’s the chance you become the bad guy, but most of the time they just want to work hard to make it right…and they should.  Please, for the sake of your kids, SPEAK UP!

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Let’s Discuss Surgery

After a couple days of both boys being in the NICU, we were told that we were going to speak with the surgeon.  Well we already did that, right?  Well yeah, we did meet Dr. Peeler, but this time we’d meet the other surgeon, Dr. Maxey.  My first thought was “Ok, what can he tell us that we don’t already know?”  but we agreed.  Dr. Maxey chose to meet us in the NICU so we could be close to our kids…definitely a nice first impression.  He was very kind and personable and pulled up a chair and said, “I’ve cleared up my schedule to be sure I give you all the time you need to have your questions answered.”  WOW!  That’s pretty special, right?

So Dr. Maxey gave a quick rundown of what HLHS was, which we were pretty good with, and then began to describe the initial surgery, which was called the Norwood Procedure.  He was very, VERY clear that the Norwood Procedure is a very serious open-heart surgery.  It is intricate and challenging and a baby’s heart is roughly the size of a quarter.  A QUARTER.  How the heck do they do surgery on that?!  Then he said something that absolutely wrecked me: nationally about 20% of kids (1 in 5) do not make it through the Norwood Procedure.  Oh my God.  BUT, he said, he and Dr. Peeler have a ton of experience on the Norwood and do each Norwood Procedure together.  He said their rate of success is 97%.  Whew, that’s much better.  But…what if Nolan ends up as that tiny 3%?  How would I cope?  What would I do?  Is that even fair?

Dr. Maxey was such a nice guy.  He did a great job of reassuring us we were in the best place for Nolan, but still reminded us that this surgery was very serious and could take upwards of 6 hours or more.  He said sometimes they won’t be able to close the chest post-surgery due to swelling and that’s ok.  He said he had time and asked us if we had any questions.  I’m not sure if I even asked him any…honestly I was nervous for my son and just as much nervous for myself because I realized I’d never been so anxious in my life.   Surgery was set for the morning of December 17th…7 days after Nolan was born.

I enjoyed meeting Dr. Maxey: he does a great job of being informative and reassuring.  He and Dr. Peeler make a great team.

Maxey_Thomasb

Add Jaundice to the Menu

NolanBiliLight

One day I came down to the NICU to see poor Nolan in his little bed, with this bright light shining on him and this weird mask covering his eyes.  The nurse said Nolan had some jaundice, which is typical of babies who are born a little early, and the light was called a Bili Light, which was a treatment to help the jaundice along.  The light had to stay on, and so did the mask, until they were happy with his tests.  Grant had some jaundice too, but not as much as Nolan, because he used the Bili Blanket, which was this funky light blanket that would be the envy of EDM fans worldwide.  And he only needed it for like a day.  Nolan had his for several days.  It was pretty depressing because the mask meant you wouldn’t see his little eyes and it almost made him less human, if that makes sense.  

Day after day, we’d come to the NICU and see Nolan under that light.  Occasionally they’d give us a short break to hold him or just love on him a little bit, but mostly it was hands-off, talking-only stuff.  It sucked.  I knew he needed it, but it felt like he was making zero progress.  I mean heck, isn’t it enough he had a heart defect?  Now he has to be all covered up, just laying there to be poked and prodded.  It made me feel awful for him.  For possibly one of the first times (and definitely not the last), I wanted so badly just to be able to fix him.  I would’ve done anything.  Guys are supposed to want to fix things, and here I was helpless.  Meanwhile, Grant was just a few feet away and he was able to wear clothes and be held.  While Nolan only had our voice…

 

Nom Nom Nom…for Dad

NolanNicuBottle1

Yes that’s my tiny Nolan eating from a bottle I was giving him while in the NICU.  This will always be an awesome moment for me and I’ll tell you why.  Nolan wasn’t the best at bottle-feeding after birth.  The nurses would give him about 15-20 minutes to complete a feed.  If he couldn’t finish his feed on several occasions, they’d have to insert an NG (Nasogastric) Tube, which is a tube that goes in the nose and to the stomach for feeds.  As you can see in the photos, he had an NG tube in by the time these were taken.  They WANTED him to bottle feed, to maintain his sucking reflex, but they also didn’t want to take too long to feed.  One nurse told me that bottle feeding for little ones is the equivalent of you and I doing a pretty strenuous gym workout.  That burns a lot of calories for Nolan and he would need every single calorie for surgery, since he was so small.

It got to the point where Nolan, in his infinite stubbornness (recurring theme alert), wouldn’t drink for the nurses.  None of them.  Sometimes, though, he would eat pretty well for me.  And just me.  I was definitely feeling the Dad love there!  So the nurses would let me hold him, which was priceless, and I would try to feed this itty bitty guy.  The trick was to hold the edges of his ears just gently, which would supposedly help trigger his sucking reflex (who knew?) and use a couple fingers just under his chin.  At first I was nervous because I didn’t want to do anything to hurt him or make him work too hard, but even the nurses were amazed: he was drinking for me!  I tried to feed him as much as I possibly could because I absolutely loved that bonding time.  I held him and he’d drink quietly and it seemed like all the problems would go away.  It was a sweet time to be with my boy.  And to be brutally honest, I wanted those moments with him as much as possible, because I knew what was looming and who knew how many chances I would get…

My bond with baby Nolan became a pretty awesome thing: he could be having a rough day with his monitor going all bonkers, and I’d walk in and talk to him and everything would calm right down.  So he knew me…we bonded…and it was awesome.

NolanNicuBottle2

The First NICU Visit

dry hands

Once Bekah was out of recovery, we were moved up to a room on the maternity floor of the hospital.  It was weird because we were up there with no babies.  Lots of time went by.  We realized how tired we were: I mean we’d been up since 2:30am!  So I fired off some text messages to people, updated my job (it was about 8am by this time), and then we decided we might as well rest.  We both managed to get some sleep before waking up in hopes we’d be able to see our babies.  I finally decided to call the NICU to ask if they could be seen…they said yes.  The unfortunate thing was that I had to go alone, since Bekah wasn’t able to get out of bed yet.  So I walked to the nurse’s station with the all-important question: how do I get to the NICU?  Man, those directions were bonkers: it was like go down 2 floors, take a left, then a right, then a right, then immediate left, then climb a mountain, shoot two free throws, eat 3 hot dogs….ok I’m exaggerating a tiny bit, but it was pretty crazy at first.

I managed to find the NICU Nurse’s Station and I introduced myself.   I was told to fill out a form indicating that I didn’t have the bubonic plague or anything like that, and they gave me a nifty Levine Children’s Hospital lanyard with badge holder to hold my parent badge and a list of NICU phone numbers (really helpful).  I was instructed on NICU procedure: first check in at nurse’s station, then go to family waiting room where I’d have to do a 2-minute hand wash before putting on a yellow plastic gown, then I’d go out another door so I can be buzzed back into the NICU area…THEN I could see my boys.  Now this is very important…if your baby ends up in NICU and you have to do the 2-minute hand wash, be sure you have a good bottle of lotion in your hospital overnight bag.  Seriously.  I’m not even talking ashy knuckles here, but when you hand wash so much at first (you visit, then your family comes so you wash again, then more family comes to see the baby so you wash again and again and again) your hands will BURN.  I know mine did, and it was horrible, I have no shame in saying that cuz it sucked, big time.  I couldn’t even put my hands in my pockets…and God forbid using hand sanitizer…WOOOO BURN.  So yeah, lotion up!  Eventually it gets better: I used Burt’s Bees hand salve.  I know, some of you are like “So unmanly!” but just you wait.

So back to it.  I walked into the NICU and it was sorta like I remembered it: dark and quiet.  I took a step inside and realized that I had seen my twins for such a short amount of time that there was no way I’d be able to know them by sight, so I didn’t know where to go.  Luckily a nurse was there near the door and once I introduced myself she directed me straight ahead, where two little beds with heating elements were about 15 feet apart.  My boys.  I was happy to see them, but it so pained me to see them both there.  First I went to Nolan, again afraid that I didn’t know what to expect.  He was pretty zonked out looking all cute as if there was nothing amiss.  Seriously, if you looked at him, he looked so normal.  Amazing.  His nurse came up and introduced herself and gave me an update: they did an echo on him right after birth, and – SHOCKER – he has HLHS.  So she introduced me to his monitor, which displayed his pulse ox, heart rate, blood pressure, etc.  She said he was doing pretty well but wasn’t doing the best with bottle feeds, which is fairly common in CHD babies.  I got to spend time with the little man and hold his tiny fingers and toes and talk to him.  It was actually pretty soothing there in that quiet place.  I asked if a cardiologist had been by and was told no, but that the nurse was fetching the NICU doctor to speak with me.  While I waited, I walked over to see Grant, who was also happily asleep.  I did notice, though, that he had a little oxygen still going in through his nose and this big (for him) bandage on his chest.  Grant’s nurse came over and introduced herself and said that it looked like Grant’s lung had a buildup of fluid and had a little burst, but it was nothing major and they drained it.  That threw me for a major loop because here I was expecting one medical issue, but with Nolan…and Grant had one too?  The doctor finally came and said something I hear A LOT at the hospital and it pisses me off, “Hello Mr Perez.  Is English a good language?”  My reply, “What if it isn’t?” to which he laughed.  I was not amused.

Luckily for him, though, he was a nice guy and I liked him.  He also confirmed that Nolan has HLHS and that the team at Levine Children’s Hospital is the best around.  He also verified the info on Grant’s lung, saying he would be just fine aside from a tiny bit of jaundice.  I didn’t have any other questions for him aside from asking when I would see a cardiologist and he said he’d check on it.  Otherwise I Just wanted to spend time with the boys.  I was a bit sad, though: I didn’t get to hold them and didn’t know when I could, and I wasn’t happy about the fact they were in the NICU in the first place.  They were getting fantastic care, that’s for sure, but I wanted nothing more right then to have two perfectly healthy babies and be worrying about silly things like fitting them in the car.  And it sounds stupid, but I was overly concerned with making sure I spent equal amounts of time with each boy.  So I’d walk to Nolan and sit on this high rolling chair and just talk to him.  Then I’d go over and do the same for Grant.

It wasn’t until much later that I was able to take Bekah down in a wheelchair to see the boys.  By then it was a pro at getting to the NICU.  And it was really nice to see my wife get to interact better with the boys, even though she couldn’t hold them yet.

A big question hung in the air, though: what would cardiology say?  Will his surgery be tonight?  Tomorrow?  Next week?