False Alarm

So we had quite the eventful little weekend. It started out on Saturday night when our nurse called off and the company couldn't find a replacement.  We thought it was no big deal; we'd hang with Isaiah in shifts. Remember, he needs someone to monitor him since he gets a slow continuous feed overnight (in case he spits up or whatnot.)

All went well during Dave's shift, but of course once it was my turn we had a few issues.  First, he was so stuffy. He's often stuffy after sleeping for a while but I used the suction machine more than once and he'd get all congested again.  Then I noticed he was grunting...grunting like he was having a hard time breathing.  I opened his shirt to watch him breathe and noticed that it looked like he was working more than usual.  I used our little disposable plastic stethoscope and swore I heard something in there.  It didn't sound clear, it didn't sound like last time, (When his lungs were full of fluid in the NICU, I listened to his lungs.  When he'd breathe then, it'd sound like boots crunching in the snow.), but it wasn't clear darn it.

 I wasn't sure if I was hearing something in his lungs or if it was what I was not able to get in Isaiah's nose.  I just couldn't figure it out.  Cue mommy panic attack, waking daddy, suctioning some more, etc.

I ended up calling DuPont NICU at 4am because I was scared but at the same time not sure. The nurse asked if his oxygen was dropping at all (nope) or if his color was off (nope).  She didn't think I should worry if all was good there.  Isaiah continued to grunt and I continued to worry.  At 6am I called our pediatrician.  This doctor asked the same things (everything was still beautiful in terms of oxygen) and said that if I was still worried, that I should call back at 9 and have them take a look.

So we waited.  Dave sat with him while I attempted some sleep.  When I got out of bed at 8, it was time for Isaiah's breathing treatment.  Even before starting that he sounded a ton better than he did throughout the night.

The clock hit 9:01 and even though he was better, I called.  This time I got a nurse who said the doctor wasn't in yet (argh) but if I was really worried about his breathing, we should go to the ER.


So we listened...


So here's the thing...bringing an OI child into an ER, into anywhere he hasn't been treated, is a super scary thing.  Even scarier because he hasn't gotten his RSV shot yet and is so susceptible to catching any bugs...bugs you can easily catch in a place like an ER.  I called ahead of time to tell them we were coming.

The call went like this: "Hi, I'm calling to let you know that my husband and I are on the way in with our 9 week old son.  He has Osteogenesis Imperfecta. Know what that is? It's brittle bones. He has type III and is extremely severe.  He's really really fragile.  He's on a C-PAP and oxygen because he also recently went through a bout of respiratory failure.  We need your help but we need you to know that we'll be handling him and be extremely hands-on. Got it?"

Yup. Helicopter mom.

We got there.  Once they saw us and I started talking they said "Isaiah? Come this way."  They took us right back (THANK YOU Lancaster General!)

We did a lot of waiting but it was alone in an exam room away from everyone.  Dave filled out paperwork while I called Dr. Bober to give him a heads up.  We did more waiting.

The doctor came and in and took a listen.  He swore he heard something in one of Isaiah's lungs.  He had us go to X-Ray to get a chest film done.

We waited for the results.

They believed he had pneumonia.

Pneumonia.

Oh dear God.  This is something OI parents have warned us about when it comes to overfeeding and NG tubes.  But we're not overfeeding; he's getting less than a child his weight would get.   He has a tube because he has to; he'd aspirate for sure if he ate from a bottle with the pressure from the C-PAP.

The doctor spoke to Dr. Bober at my request.  He wasn't convinced on the pneumonia.  He was thinking it might have just been a broncial (broncio?) spasm.  Either way, they decided to transport Isaiah to DuPont.

We were so beyond scared.

I updated Facebook friends and family because I knew they were worried.  I didn't want to mention the pneumonia.

We were on our way.

I went with Isaiah while Dave ran home, packed bags, and drove to meet us at DuPont.

Isaiah fussed some of the way and slept for the rest.  I expected the ride to be smooth; I was wrong.  It was a rocky ride for sure (which made me even more nervous).

When we arrived at DuPont, we checked in at the ER.  The resident came to check him out and miraculously heard nothing but beautiful breathing.  

The attending came and listened.  He agreed.  Just beautiful, clear breathing.

Talk about the power of prayer? Holy macaroni.

Isaiah and I patiently waited for Dave to arrive.  I breathed a small sigh of relief but didn't let anyone  know because I didn't want to get anyone's hopes up.  We still had to get another chest x-ray to verify it.  

Once Dave arrived, we worked together with the x-ray tech and the respiratory therapist to get his x-rays.  Once that was all done, we waited for everyone to look them over.

They agree there's something in his lung, but it's the same as his last x-ray from the last time we were in the nicu so they disagree that it's pneumonia (last time we were in, they gave him antibiotics just in case since the tests to check everything take 48 hours...but everything had turned our negative).

Since they found nothing new, he sounded clear, and because he was acting like his normal old self...they decided we could go home!

We have an appointment with his geneticist and his pulmunologist tomorrow back at DuPont.  We plan to ask them about what they saw in his lung and what that means.  We're also hoping they'll check his CO2 level.

I'll update as soon as I can but I have a feeling we'll be pooped after another day at DuPont so expect that on Wednesday (and you better believe I'm packing a bag just in case; I figure if I have it ready, we won't have some surprise that will cause Isaiah to be admitted. Crazy logic, but it's logic, darn it).

For today, we enjoy our little homeboy Isaiah. <3

2 Months!

Someone special is 2 months old today!!

He's spent the majority of today sleeping happily...

2 months ago this miracle came into our lives. Boy, are we lucky...

Hospital House

I knew baby stuff would take over our house...but who knew it wouldn't be limited to play pens and bouncy chairs?

This kiddo comes with all kinds of fancy machinery...

1.) The pulse oximeter measures both Isaiah's oxygen saturation and his heart rate.
It connects to him with a little sensor that (usually) sticks to one of his feet.  We want his oxygen to be between 92-96%.  Often times when he's awake, he's an overachiever and hits 100%.  We usually turn the oxygen down when he's that high.  Today I've left it because it lowers when he's sleeping and today is my first full day alone with Isaiah; I'm not wanting to rock the boat . (It's better to be 100% than anything below 90. Anything below 90 gives mommy a heart attack.)  We like his heart rate to be between 90-170ish.  If it's between 90-130, he's asleep or on his way to it.  130-160 is when he's awake and alert.  170-above means he's hurting or upset.

2.) The Trilogy is quite the fancy machine. Isaiah had a few visitors from the respiratory team visiting him when this came so that they could check it out.  Isaiah basically uses it as a C-PAP (but it's capable of a ton more).  It gives him a constant pressure to keep his airways open and help his CO2 levels stay in a safe range.  Usually when people use c-paps they have a mask.  Instead, Isaiah is using a special nasal cannula called a Ram Cannula (that green tube that goes in his nose) to push the pressure through without being so invasive.

3) The feed machine is just that.  We attach a bag of either breastmilk or formula to it and we attach the bag to Isaiah's feeding tube (the yellow tube that goes in one of his nostrils).  It goes right in to his belly.  Because of the pressure the Trilogy offers, Isaiah can't take a bottle.  It's just not safe.

4) The heater/humidifier is attached to the Trilogy.  It warms the air going in to his body through the blue tube that you see going in to his pack and play.  The tube has a wire that runs through it which is what warms the air.  This makes it so his nose doesn't dry out.

Besides all of that, he has an oxygen concentrator and a tank of pure oxygen.  The concentrator is great; it takes room air and makes it oxygen for him! (So wonderful...no constantly changing tanks.)  The tank is there for emergencies (like if the electricity goes out.)  There is a bag hanging from the tank that is there in case we ever have to resuscitate Isaiah.  Hopefully it'll just forever be a decoration in this home...

Plus you see that one thing by the Pack and Play...that's a Diaper Champ. It keeps Isaiah's diapers from stinking up the place. (Ya know, one of the more typical baby items.)

Isaiah also comes with tons of accessories.  Accessories that I had to organize into one area to save my sanity.  (I wish I could have brought one of those fancy NICU carts home with us.)

He has accessories like feeding bags, medical tapes, medications, a suction machine and its suckers, extra tubes, and cotton rolls to splint him if he's fractured.

There's now also a weighing station. It's important for us to keep tabs on Isaiah's weight.  Instead of constantly running to the pediatrician we just bought a scale on Amazon.  We'll take his weight every other day and average it out each week.  We want him to gain no more than 10 grams a day (non-OI kiddos usually gain about 30 grams per day).

So as you can see, our living/dining rooms have become our own little Isaiah Hospital.  It's definitely taking some adjusting and tweeking; we're hoping as Isaiah gets older that he'll need less and less of all this.

When I have a free moment, I'll share how we get around town.  For now, I leave you with the reason this is all worth it....

Home, Take #2

Yesterday, around lunch time, we left Dupont!

We made our way in our pram:

And into the car where we were backseat drivers to Dave again:

For now Isaiah is parked in the living room until we can get an electrician to up the amps in his room (Long story short, the oxygen company requires us to have certain power requirements, and sadly, his room doesn't meet them. He could hang out there for a change of venue for a few hours because his machine has battery power, but the safest thing to do is keep Isaiah in the living room so we're going with that.).

Isaiah's furry brother is adjusting again.  He's not so happy to lose his giant bed in the living room but if he gets to sit on a lap while stalking Isaiah in it, he's good to go.

  

None of us really slept our first night home, but it was our first night back together and our first night with a nurse, so we expected it.  (Lots of adjusting to do.)

This morning Dave went back to work for a bit so it was just Isaiah and I.  We hung out, did some laundry, and relaxed.  When Dave got home, we popped Isaiah into one of his bouncy chairs.  

It's a fancy Leap Frog one that glows and plays music.  

He LOVES it.  He followed the lights and had his eyes wide open the whole time.

Check out Carl in the background. (Babies are exhausting, huh kitty?)

And at this moment, Isaiah is eating and falling asleep.  Daddy and mommy will be doing the same shortly (except not at the same time; perk of an ng tube I guess).  Always nap when the baby naps, right?

Guess Where We're Going Today?

HOME. For real this time!!!!

And Isaiah is super excited! We're looking forward to posting again from the comfort of our couch!

Until then....:)

Update + Isaiah's Newborn Photos

Ok, update first...

We're basically vacationing in the NICU.

They are very ready to discharge us but we're having some difficulties getting home nursing up and running.  We can't discharge without it so we have to be patient.  The nursing company confirmed today that we won't be getting out until at least Sunday, so Dave and I decided to run home tonight to drop stuff off and get the house semi-ready for the craziness that's about to ensue when Isaiah comes home.  (Craziness being representatives from the nursing company, the oxygen company, Isaiah himself, and his first night time nurse.)

We also may have a final El Serrano date before heading back to our cuddle bug. (It helps when we love the nurse he'll be with.)

I'm thrilled we came home because I found a fabulous package in the mail pile.  It contained a CD and photos from Isaiah's second day of life. I cannot handle the fact that it was almost TWO months ago (or how much he's changed already).

These photos were actually supposed to be taken on Isaiah's first day of life...but, ya know, he decided to come a day early.  They are beyond special to us because of who took them.

Sharon Mastrosimone from the company Now I Lay Me Down to Sleep (NILMDTS) took them.  NILMDTS'a mission is to give you the gift of remembrance photographs to parents suffering the loss of their baby.  Sharon was scheduled to be at our 8/12 c-section by the head nurse of Jefferson's NICU to be there to take photos of Isaiah if he didn't make it.

Remember how there was a chance for that?

But he he amazed us all, he LIVED, he came out screaming,

and he's beautiful.

In all the excitement of Isaiah's early birth, Sharon wasn't told that he came early, or that he lived.  She was thrilled for us and still gave us this gift of a free photo session.

We're so grateful to her for these amazing pictures and her kindness during the photo session...and we're looking forward to bringing Isaiah home (again) SOON.

Guess Where We're Going Tomorrow?

NOWHERE! (This did say "home" but there's a glitch with our insurance and the home nursing situation so I will have to wait another day to snuggle with Carl. Whomp whomp.)....

------------------------------

The weekend of monitoring went well. Isaiah's co2 level stayed in a safe range so he's now off that monitor.

The doctors are officially weening him off of his morphine. (Yay.)

He's no longer working as hard to breathe, so he's finally back to gaining weight; the staff is lowering his feeds that we're giving him through his ng tube to avoid him gaining too much too fast. (Because of the machine Isaiah is on for his breathing, he can't breast/bottle feed so for now he eats through his tube. The pressure from the machine could cause him to aspirate- aka his food could go into his lungs and we don't want that).

Today we went for a walk through the hospital and its courtyard (outside!!) in our cool new stroller (thank you so so much scs/cohs friends!). 

We were testing the portability of the machines he's on now. 

Everything worked beautifully and Isaiah loved the fresh air.

Yesterday the representative from the oxygen company came back to teach us how to use all of Isaiah's new equipment. He has the Trilogy machine that is helping him breathe, a suction machine to clear his airway when needed (that booger bulb doesn't do the job), and a compressor for a nebulizer (he gets two treatments a day to strengthen his airways). 

We'll be seeing a lot of the staff of the oxygen company. They'll meet us at our house when we get there and will be stopping by every day to check in. After a week their check ins will be weekly and then monthly.

We're really looking forward to being home again. We are officially lifting the visitor ban but there are some "rules" we need visitors to follow...

1. If you plan to see Isaiah a lot, please get your flu shot. This is something the staff here is very adamant about so we are too.

2. If you have the slightest symptom of a cold, let's reschedule your visit. If Isaiah gets even a small cold, he could possibly go back into respiratory failure. The smallest thing could turn into something huge for him because of his history (wow, a 7 week old has "history".)

3. Washing hands/using hand sanitizer is mandatory when entering our house and touching Isaiah. Don't worry, Dave's dad got us huge amounts of purell at Costco. (Thanks Pop!)

It's funny, we always said we'd be laid back parents...but then our son turned blue and was close to being on a ventilator...our eyes were opened. We never ever want to see our baby in that state again and we will do everything we can to avoid his having difficulty breathing, even if we want to roll our eyes at ourselves. 

In my mind we almost lost him before he was even born with that type II diagnosis and I feel so extremely lucky that he is here with us. We'll take the big clunky trilogy machine. We're good with the oxygen. We aren't big fans of the ng tube...but in all honesty, we'll do whatever it takes to keep our son alive and happy.