It's Labor Day Weekend?

Who knew? Not us. Days spent in a hospital seem to really blend together.  Hopefully the end is in sight!  Tuesday? Wednesday?

Although, the break at home won't be all that long.  I spoke in detail with Dr. Bober today and met Dr. Katz.  Dr. Katz is a surgeon who will be performing Isaiah's first surgery.  His first surgery will take place the day before his next PAM treatment.  It's necessary to put a central line in for his PAM treatments.  When he's big enough, he'll switch to a port which will be useful until he's about 5 years old.  Until then, the central line will help Isaiah avoid more scalp IVs and yucky stuff like that.

Scalp IV? I don't want no stinkin' scalp IV; it would mess up my cool mohawk.

It turns out Isaiah will be back in the NICU after the surgery and he'll probably remain there that day and for the 3 days of PAM treatments.  This actually makes me feel better since we know/love the staff and they know Isaiah.  If all goes well, he'll be discharged (again) after that last day of treatment.  We're hoping to coordinate his next hearing screening for that week as well.

Other than that, we're having a quiet day together. Dave is handling his commissioner duties while I am practicing one on one time with Isaiah (with bonus help from his nurse when needed).

I've changed his diaper a number of times, given him his meds, read him a book, sung along with Pandora, and even considered changing his clothes....but I'll save that for the morning. :)

Oh and I even got him to eat a little from the bottle! (Progress)

I am pretty sure I've exhausted him.

That's ok...because he's exhausted me too. Happy Labor Day Weekend, all! I hope you're able to enjoy it!

Can You Hear Me Now?

We say Isaiah can "hear you now", but there are a few people who think maybe he can't hear you.

We've witnessed Isaiah turn his eyes towards us when we talk, calm down when we sing, and startle at loud noises but it seems he didn't pass his hearing test today.

They did a number of tests, but he didn't pass any of them.  They even checked his inner ears; there's evidence that he may have fluid in there so that could be the culprit...

So after we initially panicked, we got ourselves together and agreed that's it's just one day of tests.  If he has fluid in his ears, which is common after a c-section (plus 1 out of every 10 babies fails the initial screening), it should go away and he should hopefully pass when he's a little older.  Prayers for that are appreciated!  

Holy pile of cords, Batman.

So we'll be stopping back to Dupont in 2-3 weeks for an appointment to get this rechecked (we're hoping to coordinate that with a PAM treatment.  Really, I think they are just falling in love with him and are trying to find reasons for him to stop back and visit.

I can't blame them. Who can resist this face?

No one. That's for sure.

Family

Here's a little post of Isaiah hanging with/meeting some family members.  It'll be good and picture-heavy. :)

Pop Martin

Great Grandmom Helen aka Baba

Cousin Mike

Great Uncle Mike

Great Aunt Bet

Uncle Matt

Grandmom Anna

Nan Nan Carol

Grand Dad Bernie

Aunt Tricia

And these pictures are just the tip of the iceberg. Isaiah is so lucky to be loved by so many...

The "D" word

Woah. They are talking the "d" word, people...and that "d" word is discharge.  In a week!!!!!!

Oh. snap.

But to get to that point we have to learn a few things...a few things that are freaking us both out.

But Dave's a take charge kind of guy and has already started taking his first step.

He's inserted his first NG tube in Isaiah.

The NG tube is Isaiah's feeding tube.  He's having some trouble sucking and taking a bottle...we're still working on it though; we have a great new bottle that he took 20 mLs from today! Progress...but we still have to know how to put the tube in.

Personally, I'm ok with that being Dave's job.  I mean really, I did 99% of the work for 9 months. Plus there's that whole pumping every 3 hours thing...but alas, they are making me do it. 

So tomorrow it's my turn. Bah.

The positive of this practice is that we get a moment to see Isaiah tube free:

Boy, he's beautiful.

Anyway, I have to get over my fear of putting the tube in.  The quicker I get over it, the quicker we can move on to the next step.  

Besides going home with the NG tube, Isaiah will also be going home on oxygen.  It's tough to understand/explain, but he kind of doesn't really need it, it's just more beneficial for him to be on it than not.  He has moments where he breathes too quickly and having the oxygen helps him.

The staff is also working with us to make an appointment with our local pediatrician.  They're getting us started with Early Intervention (where physical therapists will come to our house to work with him), home nursing care, and working on getting us a car bed to take Isaiah home in (our car seat isn't quite safe for him yet). 

Once we have all that in place, we'll be able to take him home.  In the mean time, we get to finally hold him in our arms (with advice from the physical therapist...which most of it was to "trust ourselves").  The picture below is me jumping in and just doing it...while trembling and crying  It's such a terrible picture of me but I think you can tell I was a little overcome with emotion.  It was amazing because he was having some serious fuss time because of tummy troubles and once I started swaying he relaxed.  His heart rate went down, his breathing rate went down, and he was just calm and happy. 

And right where he's supposed to be.

2 steps forward, 1 step back

Last night we left the NICU feeling relieved (even though we almost had a mishap involving Isaiah's UV line being pulled by a custodian...I roared my mama lion roar to stop any trouble there).  We were happy; Isaiah has finished his first PAM infusion and won't need it again for 4 weeks (after that he'll receive PAM every 8 weeks).   He already looks like he's benefiting from PAM- he's relaxing.  He's moving his head more.  His arms keep going down (instead of being bent, tense, and by his head)...

 The staff removed his UV line afterwards even though his calcium was low because it wasn't that low...we left the hospital feeling GREAT!  Both Dave and I got a good night's sleep.

Then the phone rang at 7am.  Everything was ok but they wanted to warn us; they had to put an IV in Isaiah's scalp to give him calcium.  They say he took it like a champ and that it's more disturbing to look at than it is for him to have it in there.

They checked his calcium level this morning and it's already back to a great level.  They are going to keep his IV in until tomorrow just so they have a way in...and this way they avoid sticking Isaiah again.

This morning we also noticed his belly looked a little swollen, but the doctors assure us it's probably just his belly being full/maybe some constipation...and Dave says it's already down.  Let's pray they are right. :)

I know everyone here in the DuPont nicu is working hard to keep Isaiah comfortable and happy.  One of the staff members brought Isaiah a mobile to put above his crib.  He loves it.

He's resting now, with the mobile spinning and playing music above his head.  Once he has the IV out of his head, I'll rest too.  So many OI parents have told us scalp IVs are a normal thing...I thought I'd be ready for it, but seeing it in our baby's head....makes me wish they could put it in mine instead.  Good thing he's such a tough guy, huh?

Visitors

Isaiah has loved meeting his friends and family.

Visitors are welcome and encouraged....after this Wednesday. :)

We are holding off on having any visitors from yesterday through Wednesday, except for his good friend PAM.  

 So far (fingers crossed) he's responding well to it.  His temperature has remained steady and his temperament has been pretty good. He gets fussy every once in a while, but he's a baby. :)

We're definitely learning his personality.  He loves the dark.  He tends to put his blanket over his eyes, especially when the lights are on.  You can kind of see the blanket up in the picture below (seriously, he does this, not us, not the staff.)

Yes, I did take a floating headshot with my son. I think kids today call it a "selfy"? Personally, I think that sounds dirty.

So does Isaiah.

Anyway, once Isaiah is finished his PAM treatment, the staff will begin weening him off of his morphine.  That is actually starting tonight- they are going to switch him from the morphine drip to giving it orally again (well, through his feeding tube.).  Then it will be time for physical therapy (YES PLEASE! Let's get his head rolling to the right!)

Before I go, I have a few more notes about visitors (that are welcome after Wednesday, with a slight break on Friday because we need to head to Lancaster for my dr appt and obviously cuddle time with Carl).

-When visiting, please call or text us first so we can set up a time that works.  (If you don't have our number, email us at dacky041208@gmail.com so we can give it to you.) That way we don't have a party in Isaiah's room and upset the staff or other babies...and that way we'll have made sure we're not neglecting our own needs (like eating dinner and resting) like we had been.

-Avoid wearing any jewelry or plan to take them off when you get to the NICU- especially watches, bracelets, and fancy rings- wedding bands are fine, as long as they don't have stones in them (they can carry germs).

-You'll need to scrub in.  It's fairly easy- just soap and water and a good scrub.  Then you'll fill out a paper that states you haven't been sick in the last 48 hours.

-Parking is FREE! And easy.  They have a free valet (they even refuse gratuity) so you don't even need to find a spot.  

You'll need your drivers license or a photo id with you.  When you come in, shoot Dave or I a text or call and we can come meet you (it's a bit of a maze to get to the NICU).  While waiting, sign in at one of the 3 desks- you'll get a visitors tag to wear for your visit.

-Be ready for me to take your picture with Isaiah. It's mandatory. :)

<3 Vicky

One Step Closer to Home

So we are one step closer to home.  He is officially settled in to Dupont. Wide-eyed and wondering "where the heck are we?"

I'm not quite ready to talk about his transition from Jefferson to Dupont...that was so emotionally difficult for me to deal with and I am still processing it. It was so hard to take him away from somewhere that was so wonderful to him.  The staff at Jefferson helped to bring him into this world as safely as possible and took amazing care of him- we are so grateful to everyone there.

Here we are with him before the transport team got to Jefferson...

And here is the stretcher and isolet that he was taken to Dupont in.

Here he is in his isolet with me saying (blubbering) my "see you soon"

It took me about a half hour after Isaiah left to go through the discharge process before we were able to hit the road and make our way to Dupont.

We were starved for lunch but I just had to see him and make sure he was ok so Dave dropped me off at the door and found a parking spot.  We checked in and got ID badges and we made our way to the NICU where we found him wide-eyed and trying to figure out what was going on...

We got to meet with Dr. Bober who looked him over.  We have to wait for the results from the blood work, but the doctor believes Isaiah has type III OI- this is based on the bowing of his long bones as well the shape of his head and the color of his sclera.  Although he has a lot of breaks, when Dr. Bober removed his blankets and clothes, Isaiah was only hesitant to move his right leg.  This is a good sign- it shows the other limbs aren't hurting him as much, maybe due to healing, maybe due to the morphine.

We talked at length with Dr. Bober.  They are going to keep monitoring him and really spend the time getting to know him.  If all is well, PAM should start on Monday.  We're hoping he won't have any of the side effects that come with it (flu-like symptoms, possible respiratory issues) and that he will reap the benefits immediately (often times the pain relief comes within the first day of treatment- which means they could get him off the morphine).

He's taking baby steps.  He's been doing part of his feedings from the bottle and part is still through the tube.  He was off of oxygen for a bit yesterday but had to go back on as his saturation level went down.  Today it's looking optimistic that we'll be able to try again.

Being here at Dupont means we are one step closer to bringing him home...and that is a wonderful thing.  

little stinker- a story

This is going to be one of those blog posts that when Isaiah is 16, he's going to be like "seriously? why would you tell the internet this?"

Tonight, the two of us helped his nurse change Isaiah's diaper...or should I say diapers.

After she told me how to lift him so that he is fully supported, and after I spent a few minutes mentally preparing myself, I lifted Isaiah's head and torso off of his mattress so that she and Dave could remove his diaper, clean him up, and put a new diaper on.

Shouldn't be too bad.  He might pee on us but what's a little pee?

I successfully lifted him (with the nurse's help), she wiped him up and then she and Dave pulled the diaper out from under him.  As his nurse checked him over one last time to be sure he was clean, we heard it.

You know what we heard.

She quickly closed his new clean diaper and let him dirty it...after a whole 5 seconds of clean.

And then we did the whole process again.

What a little stinker.  Literally.  I guess he knew we needed the practice.

Good night all...time to get some sleep before our big move to Dupont.

-Vicky

Another quick update from dad. So we are here on day 4 at Jefferson Hospital. Last night a few of our friends stopped in to visit and brought Isaiah some really cool stuff.

Matt and Kaleen brought a Snuffy stuffed animal and also a baby book on the history of the Philadelphia Eagles. The book shows all of the successes of the Eagles and talks about all their wise management decisions over the years. Obviously it is a very short book. It does teach them the fundamentals though like Cowboys = evil and all that.

Today, we have sort of firmed up the plans for Isaiah. As long as everything continues well with him, tomorrow he will be transferred to DuPont hospital in Delaware. Somewhere around 9am he will head down via ambulance and we will be right behind. The doctors there are obviously well aware of his condition and have been getting constant updates from the staff here at Jefferson. From what they hear, they are very impressed with how well Isaiah has been transitioning to life on his own. We have been very happy as well. Trying to figure out what this kid will be able to wear has been a nightmare. Trying to force arms and legs through small openings would not be a good thing. After spending 3 days in diapers and blankets, we (and by we, I mean the Nicu nurse) were able to put Isaiah into a little outfit.

 As of now, they are thinking that he will be staying at DuPont for 2-3 weeks. He will be observed, start physical therapy, and most importantly he will start to receive his PAM treatments that will hopefully help strengthen his bones. The outlook that they have for him is just so encouraging to us. A few months ago some people believed he wouldn't make it, and now he could be in his home about a month after he was born. Lastly, the reason you are getting another update from dad is because Vicky is passed out in her hospital bed. It is completely exhausting looking at the cuteness that is Isaiah.

Dad update time:

Everything has been going pretty well here at Jefferson. Vicky is recovering nicely and Isaiah is getting all the love he can handle here. We have been spending a lot of time with him and love holding him every chance we get.

I know Vicky  and I have both had tons of questions about how he is doing. When he was born they took him for X-rays and it showed he had cracked a few ribs and had a broken right humorous. Well, yesterday they added to that list, now he might have a broken left femur, tibia, fibula, and they think that there might be a break in his jaw. They also think there might be some newer breaks in his right leg, but with the way he always has that curled up it is tough to tell.

Isaiah is handling this well with the medication he is on as well as all the love he is receiving. They have him on neonatal morphine to help deal with the pain. Vicky talked with an OI specialist this morning and he said there are really three things to look for this week.

1- Does medication help Isaiah's Pain?
2- Is he breathing well on his own?
3- Is he stable?

Now as of this typing, Isaiah is only about 55 hours old, but the answer to all three of those concerns is yes. Currently, the plan is to spend another day or so here at Jefferson and then we will all head to DuPont hospital down in Deleware. There, they can take a better look at him and determine what needs to be done (as well as starting PAM treatments).

Isaiah (and we) are so blessed to have all the support that we have received. Last night, that included visits from Sanne and Kate and today my aunt Debi and cousin Molly stopped in to see Isaiah. Molli is the cousin that has started Team Isaiah for a half marathon in November. They are currently up to 44% of their fundraising goal which is awesome. We're going to do everything we can to make sure they hit that goal (Shamless plug: Team Isaiah ).

The final thought in this dad post is a simple one. I had this little status update planned to post on my facebook when we left for the hospital early Monday morning. Well, Isaiah made sure that I didn't have time to do it. I was lucky I remembered to throw underwear and shirts in my bag as we ran out. But the gist of what I wanted to share with everyone is that I am incredible grateful to know you. Every card that we get, email, or text supporting us makes a difference whether you know it or not. We now know the incredible strength that Vicky and I have needed to make it through the last 5 months (especially the last 2 days). Well, every bit of that strength comes from you. Thank you.

SURPRISE!

Our son is already letting us know who is in charge.

At 1 am on August 11, my water broke.  After panicking at home trying to figure out if I peed myself, ha, (and arguing with a poor confused nurse at Women's and Babies), I called Jefferson's Labor and Delivery area and they advised us to make our way to Jeff.

It wasn't the plan but it truly worked out. Do you know how fabulous the drive is at 2am???  We were at Jeff by 3:30.

I was admitted, they confirmed my water was breaking (which given I was still leaking, we were all pretty confident), and got started with an IV to take blood to get the ball rolling.  I was having trouble reaching my family to get my sister to the hospital but was able get through at 5am thanks to Simba and his meowing at Tricia. :)

They got here at 6 and before we knew it things started unfolding fast.  The staff has been amazing.

I honestly felt nothing during the c-section except the blood pressure cuff and some tugging when they were sewing me up.  I had no idea Isaiah was coming out when he did.  Luckily, his legs were UP, so they were able to get a good grip on his torso to pull him out at 6:49am.

(see his foot there?)

They had whisked him right to the room next door to check him out and stabilize him.  I found out his initial 3 min APGAR score was a 3 (out of 10) but his 5 minute was an 8!! yay!  They had to start his breathing for him, but told me he was wide eyed as soon as he was out.  Once they got his lungs clear, I could hear him crying from the OR.

It was the greatest sound I've ever heard in my life.  He has a set of lungs on him.  

Before bringing him to the ICN (intensive care nursery), they swung him by me so I could get a glimpse of him.

He's an amazing little fighter.

His daddy stayed with him while i was sewn up and in recovery.

When they transferred me to the maternity floor, they let us stop by and see him in the NICU.

He does have a fractured humorous bone and a few broken ribs.  He was having difficulty with feeding so for now has a feeding tube and as of last night was on a low amount of oxygen.

I was aloud to go see him around 4 or 5 and I melted at the sight of him.  They placed him (and his pillow) in my arms and he relaxed.  When he heard my voice he relaxed and looked right to me.

He's gotten to see all his grandparents and his Aunt Tricia (my sister) and Uncle Ben (Dave's brother) so far.  We need to start going crazy taking pictures...

Here he is with Nan Nan Carol.

We're so in love.

Thank you all so much for your continued prayers for him.  He'll be staying here at Jeff in the ICN while I am here healing and then will likely be transferred to AI Dupont.

I will keep you all updated...but for now, I am itching to get my butt out of this bed and by our little miracle's side. <3