Sunday, February 27, 2011

Sneak Peak

We've been working really hard this past week to get Stephen's room ready for him to come on Thursday so I thought I would share a little peak into his nursery. It's not completely finished, but it's close. We still haven't gotten everything hung on the walls such as the elephant decal we ordered tonight for over his crib and Poppy Noll will be hanging some shelves on the wall this weekend (it was a miracle that Bill and I got the curtains hung), but its pretty close.

Here's a view of the room from the door/hallway. Our bedrooms and living room are sunken, so that's why the photo is taken above ground level.

Before being transformed into the nursery, this room was our office and we already had the two Ikea shelving units, so all we needed was a crib and rocker. Unfortunately, but now fortunately, the chair and crib were delivered four days before we got Stephen's diagnosis. Since coming home from the hospital, I've used the nursery as my "pumping station" and it's been so nice to have a comfy designated place.

Here's one of the shelving units we converted into Stephen's dresser. I bought the bins from Target and store all of Stephen's blankets, cloths (most of them), toys, pajamas, socks and bibs, and burp cloths in them. We originally were going to use the top of the shelving unit as a changing station, but since we need a place for his scale, we are planning to change him in his crib like we do in the hospital.

That's little sister Mabel in the foreground.

Here is the crib and another shelving unit.

This shelving unit has a lot of Stephen's stuffed animals we started collecting before he was born and some new ones we received as gifts, lots of books, photo albums, and luckily there's still some room at the bottom. Our video monitor is at the top right corner so we can watch Stephen around the clock. And the cute elephant was painted by a friend from high school who is a super talented graphic artist. Her adorable children's paintings can be found on her website at:

Here is a closer look at the crib bedding. Although not sure what happened with the lighting....sorry!

Funny story about the bedding; I actually won it from Serena and Lilly on Facebook! I entered a contest on Facebook by and was randomly chosen as the winner. Crazy thing was it was a week before we found out we were having a boy! It's super cute with elephants, giraffes, alligators, and other little jungle creatures.

Here's another view of the rocker. My Dad, Stephen's Poppy Noll made the airplane having above the rocker right after graduating college when he started working for Piper Aircraft. It's a replica of the plane we flew while working for Piper. And I'm guessing that Stephen's Great-Uncle Dick is working on a plane for Stephens room too (but no pressure Uncle Dick!).

And just for kicks, I thought I would share a little peek into one of Stephen's closets. Thankfully there are two in his room. The shoe hanger on the back of the door stores some of the small medical supplies like alcohol swabs, tubing caps, g-tubes, and syringes. The three bins on the floor in his closet contains all the drain bags and tubing cassettes for dialysis and four nights worth of dialysate. I also have a bunch of bags in a bin under his cribs and there are four boxes of bags in our bedroom.

I thought this picture might be helpful to other families with children who also have a lot of medical supplies. The shoe rack has been so awesome!

I hope you enjoyed a little sneak peak into Stephen's room! If you have any questions about anything in his room, just leave them in the comments and I'll get back to you!

Friday, February 25, 2011

Learning Curve

This past week and next week we've got a lot of learning to do before Stephen comes home. Even though to us he often times seems like a healthy baby, the reality is is that Stephen is a special needs baby who requires a lot of extra TLC. Last week the teaching started with dialysis and we wrapped up this week with CPR. Next week we will continue learning dialysis until we've got it down and are comfortable enough administering it by ourselves at home. And somewhere in between we have learned lots of other things. Here is just a sampling of the things we have learned to prepare for Stephen's discharge and that we will have to do at home.

1. Administer dialysis; hook him up, unhook him, record the details of the nights dialysis, empty the drain bag and prepare the setup for the next night

2. Give him his meds via his g-tube. Luckily he only gets about 3 meds per day.

3. Clean his g-tube site each time we change his diaper

4. Check that the g-tube balloon is properly inflated each day so that it doesn't pop out

5. Prepare and mix his formula and breast milk feedings for each day for the bottle. He gets a special blend of fortifiers and protein added to the formula and milk.

6. Setup the feeding pump for continuous feeds overnight

7. Give him his epogen injection twice a week. epogen helps Stephen produce more red blood cells.

8. Check his blood pressure

9. Weigh him

10. Record every milliliter of fluid Stephen takes in and then calculate his night time feedings

Each of those steps are pretty easy, with the exception of the injection. I gave Stephen his injection yesterday and it was so brutal. First I had to actually work up the nerve to do it and then when he cried, it broke my heart. Evidently the epogen injections really sting. So hopefully they're going to switch up the concentration or something, so that it won't be so uncomfortable for my little man.

Other than that, the rest is just a piece of cake! :) HA!

Monday, February 21, 2011


Some of you may know that we received some huge news two weeks ago about Stephen.  I haven't unveiled our big news on the blog yet because I didn't want to jinx it, but now that it's right around the corner, I think it's time to tell everyone that Stephen is coming home!  His estimated discharge date is Thursday, March 3rd.  Fifty-eight days after being admitted to the NICU. 

It took awhile actually to get my head wrapped around the idea that Stephen was actually going to be coming home because everyone had expected him to be in the NICU for months.  We didn't think he he'd be home until at least April or May at the earliest.  But once again, he has proven everyone wrong!  And now that he's breathing completely on his own, the only two things they have left to do before we can go home is get his dialysis and feeding schedule set.  Stephen is still on 24/7 continuous feeds (feeding pump) and hasn't gotten to 12-hour dialysis "cycles." But since he doesn't need any respiratory support any longer, he's pretty close to a normal baby at this point.

So last week we started the process of learning how to really care for Stephen when he comes home and to prepare his nursery for his homecoming and all his equipment.  Preparations started with nephrology and training to administer Stephen's dialysis each night.  There is a machine called a cycler which does most of the work of dialysis.  We have to hook Stephen up to the machine each evening and it cycles the fluid in and out of Stephen's peritoneum throughout the night over the 12 hour period.  Then in the morning, we unhook Stephen from the cycler and he's free to go about his day as a "normal" baby.  The biggest thing with dialysis is preventing infection.  To do that, Bill and I will have to be super diligent about keeping his room clean, our hands clean, and never touching certain parts of the system.  Luckily, they have made the cycler pretty idiot-proof, so I think we'll be able to do it without too much of an issue.  We also learned how to give Stephen his meds via his g-tube, take care of his g-tube and replace it if it pops out.  This week is how to administer his injections and CPR training.

We spent a lot of time this weekend prepping Stephen's nursery, organizing things, and buying everything we need for a baby.  Healthy babies come with a lot of stuff, but having a special needs baby, is a whole different ballgame.  We get our dialysis supplies once a month, so it's a lot all at once.  Baxter actually delivered his supplies this morning.  I think there are eight boxes of dialysate, one big box of tubing, and one small box of connectors.  Then all the "little stuff" such as tape, gauze, cleaning solution, gloves, masks, etc.,  is delivered via Fed-Ex today or tomorrow.  Then we have the actual machine, his feeding pump and all it's supplies such as tubing and syringes, and then we have his special order formula and additives such as protein.  It's a whole lot of stuff to store in 1,100 square feet!!  But with some help from Bed, Bath, and Beyond, I think I've been able to find a place for most of his things. 

And most of my "free" time last week was spent dealing with insurance and Social Security.  Because of Stephen's conditions, he will qualify for disability and some special programs available to people on dialysis and for children who have spent greater than 30 days in the NICU.  But of course, all these programs require an insane amount of paperwork and time.  And as much as I'm so grateful to have private insurance, it is a HUGE headache!  You can only imagine what kind of charges you wrack up when you spend over 45 days in intensive care!  And no one seems to ever have an actual answer to any of my questions.  Ugh.  It's so frustrating!! 

But the best part of the weekend was spending some good quality time with my little man and hubby!!  Stephen is allowed a bottle and/or breast three times throughout the day so I tried again to breastfeed on Saturday and Sunday.  And Stephen did so great!  This time, he latched right on and Mama couldn't have been more proud!!!  Hopefully we'll able to keep that going and continue to bottle and breast feed a little bit when he comes home too.

Today's job....finding us a pediatrician! :)

Friday, February 18, 2011

Amazing Video

Get your tissues ready because one of Stephen's primary nurses aka Stephen's NICU angels, made us an awesome video montage.  Connie actually made it for Stephen's grandparents as a special Valentine's gift and what a special gift it is!!!  It was so incredibly sweet of her to take the time out of her personal life to do this for us and for Stephen and we can't say THANK YOU enough!  Stephen's nurses have become such an integral part of our lives over the past 6 weeks, that I can't imagine not having them in our lives when we evetually go home.  But luckily I'll always have this video to look back at and remember all the little milestones, special moments, and all the days we spent in the NICU.

And make sure you turn up the volume so you can hear the music!  Please let me know if you have trouble accessing the link and I'll either fix the issue or email out the web link.


Stephen's Montage 1/11/11

Tuesday, February 15, 2011

No More Tubes!

We have had a very exciting couple of days here in the Schwartz household! I know it's been a while since I posted last, and so much has happened in the past couple of days! So here's a little update on where we are:

1.  Dialysis class - Bill and I had the first part of our dialysis class yesterday morning.  Since we'll be doing Stephen's dialysis at home, we have to learn all the ins and outs of peritoneal dialysis (PD) so that we can both administer it at home and recognize the signs of infections and fix things when they go wrong.  There is a machine called a cycler which does most of the work.  We just have to be able to hook him up to the machine and get the machine running.  And then trouble shoot with the alarms sound.  Luckily, they've made the machine pretty idiot-proof, so I think we'll be ok.  The biggest thing will be preventing infection.  Which leads me into our next item.....

2.  Infection....again.  On Friday night, Stephen's nurse noticed that his dialysis output was getting a bit cloudy again.  A sure sign of infection.  So they started running labs immediately, blood and a culture on the dialysis fluid, and started an IV line for antibiotics.  The first cultures came back pretty good, with just a slight elevations in his white blood cell count and no cell growth in the culture.  So they moved the antibiotics from the IV line to this dialysis fluid and his fluid output seemed to clear up a good bit.  But then his cell count on Saturday night came back much higher and the culture had grown bacteria.  So they increased his antibiotics.  By yesterday, they had pinpointed the bacteria to the same one he had a few weeks ago from his ventilation tube.  This time it seemed to have grown in his PD catheter, so it was a positive diagnosis of peritonitis; an inflammation of his peritoneum (the lining around the abdomen which does the "work" of the dialysis).  So now Stephen is getting a 14-day course of some pretty heavy duty antibiotics to hopefully kill this bug for good.  The only downside....the antibiotic can become toxic and affect Stephen's hearing.  But they'll test his blood in a few days to make sure the levels don't become toxic to him.  But I think this is something we're going to be dealing with over the next year or two while he's on PD.

3.  Change in Nutrition - the nutrition people and nephrology are still working on getting him the right amount of nutrition.  The big thing is making sure Stephen's not fluid overloaded, but that he gets the right amount of calories.  So it's a pretty delicate balance.  And to make matters worse, the poor little guy the worst case of diaper rash over the weekend.  :(

4. G-Tube Change - Yesterday afternoon after our class ended, Bill was cuddling with Stephen and they fell asleep together in the rocking chair (so cute!!!!).  Bill woke up thinking Stephen had spit up on him, but when I looked at Stephen, I noticed that there was a little spot of blood on his onesie.  When I opened up his shirt, I found that his g-tube (feeding tube) had come out!  Poor Bill panicked and though he did it, but the truth is, hat the g-tube was bound to come out.  For days, it was looking like the tube was going to come out and because Stephen's stomach was so small, the surgeon couldn't put anything more permanent in.  Once a g-tube comes out, you only have about an hour to put something else back in before the hole closes up and then you have to go to surgery to have it fixed.  So the nurses and Dr. Lazarte, the neonatologist, scrambled to figure out what they could put that would be a better fix, and then had to find something to fit the little guy's tummy.  It felt like it took forever.  And Dr. Lazarte was trying all sorts of tubes, and nothing was working.  And let me tell you, it wasn't easy watching them try to insert tubes in his belly while holding him down .  Stephen actually handled it way better than Mom and Dad!!!  But eventually they decided to put in a "button" instead of tube, which is what the nurses had been asking for all along.  It's a little port on the outside of his tummy with a cap.  When it's time to eat, we snap on a little connector tube (about 5 inches long) and then connect that tube to the feeding pump tube.  When he's done eating, I take off the connector tube and close the port.  So when he's not eating, there are no tubes connected!!!  It's pretty awesome.  And will make tummy time and baths much easier!

And the best part of all............

5.  No more oxygen!!!!!  Yesterday morning, they took Stephen off his nasal cannula and all oxygen.  It's completely gone!  He's just now breathing ambient air.  It's so amazing!!  And his respiratory rate and oxygen saturation were beautiful yesterday!  We went from thinking this little boy would never breath because we were told he wouldn't have any lungs, to now having no respiratory support what-so-ever.  He's done so well, that he won't even need to see a cardiologist at all.  He'll still see the pulminologist a few times, but it's absolutely amazing how he's conquered every challenge he's faced so far.  Every day he looks and acts like a normal baby.  It's so incredible.  People stop in our room all the time to see him (he's quite the popular guy in the NICU) and they are so amazing at his progress.  All I can say is that science and medicine can't explain what has happened in the past 6 weeks.  There's no doubt in my mind, that he truly is a miracle.

So, now that they've taken away all his respiratory tubes and he no longer has his long g-tube, all that's left is his PD catheter!  Of course, he's still hooked up to the monitors, but picking him up and playing with him now is so wonderful!!  I guess I better start working on his nursery, because he'll be home before we know it!!! :) 

Thursday, February 10, 2011

Firsts Continued

Stephen had another big milestone this morning.....he had his first bottle!! Unfortunately, I missed it, but the nurses took lots of pictures for me and Bill and sent me a text message this morning. The speech therapist came to see him early this morning around 8 am and they tried the bottle. Stephen took only about 5 cc's of milk and they said he was pretty confused that there was something coming out. He's so used to the pacifier, but not when there's liquid involved. Later today we'll get to try again and then tomorrow we'll try the real thing!! :)

Update: we tried a bottle this afternoon around 3:30 pm and Stephen did great! He "drank" everything in the bottle; all 7 cc's. Momma was so proud! Although as soon as he was done though, he was off the charts mad! Luckily the pacifier and a nap soothed him pretty quickly.

In other "Stephen World" news, I've started working on all of his paperwork and things for disability and Medicaid. It's so weird to think he qualifies for these things and I feel kind of weird applying for these programs, but it will help us get some extra nursing help when he comes home. The way it looks right now, he'll be coming home with oxygen, a feeding pump, and dialysis. I know we can handle it all, but it's going to be a lot at first. But I cannot wait!!!

Here's Stephen enjoying some tummy time yesterday. Jess, Stephen's nurse, got some great pics yesterday and today.

Wednesday, February 9, 2011

Lots of Firsts

Yesterday and today were days filled with firsts for Stephen and his Mommy. He had his first swing, his first real bath, and the first time I was able to dress him in his own clothes. And I had my first trip to a baby store as a Mommy. And it was all so amazing!!

We were told on Monday that Stephen might have his PIC line pulled this week, which would mean he would be allowed to finally wear clothes and have blankets from home. Which meant that I needed to shopping! I had purchased a few little outfits prior to Stephen's diagnosis, gotten a few as gifts, and some as hand-me-downs from my sister. But I didn't have any onesies with the snaps the whole way down the front (these work best with Stephens tubes and wires) or any that might would be big enough for Stephen. Walking into Babies'R'Us as a Mom was amazing and so much fun. It's so weird because that store used to stress me out and confuse me, but now it's awesome! I could use one of everything! And because we canceled my baby shower, I really could use one of everything :) i have a feeling I'll be making frequent trips to Babies R Us and BuyBuyBaby in the next few weeks.

Then when I got to the NICU on Tuesday, Stephen was swinging away in a little swing and loving every minute of it! It was so adorable and he LOVED it! I can tell we are going to spend lots of time in the swing.

But today might be our best day yet. Now that Stephen is off his IV fluids, the PIC was finally pulled which meant that he could get a real big boy bath! He can't get his dialysis catheter or feeding tube submerged so the bath water was very shallow, but it was definitely a real bath. Although you'll see that the poor little guy hated it! He cried and cried the whole time and so hard that he literally turned purple. When Stephen gets mad, he gets really mad!! You'll see from the pics, that the poor little guy has lost a lot of his hair, but only on the top of his head. Which makes him look even more like a little old man! :) But he's still super adorable!

After his bath, I was able to dress him for the first time. It was so fun! And I picked out an outfit with elephants since his nursery theme is elephants and I couldn't resist the "I love mommy" embroidered the chest. Then we spent the whole afternoon cuddling away. Now that his PIC line is gone, we're able and allowed to pick him up and hold him without the help of the nurses and hold him in all sorts of positions without worrying about the lines being pulled or him getting an infection. It's so awesome!

We also had our first consult today with the pulminologist who will see and follow Stephen when he leaves the NICU. He was extremely pleased with Stephens lung development and thinks he's doing really well. We will have to be very careful when Stephen comes home because his lungs are still very fragile and he could easily catch a respiratory virus or cold that could send him back to the PICU. So that means we won't be going out in public very much for awhile. But I can deal with that as long as he's home and healthy! We're just really looking forward to walks with Stephen down to (in his stroller) in the Spring!

I went a little nuts posting pictures tonight, but I had trouble picking my favorites!

Monday, February 7, 2011

Big Day

We are having a big day so far in the NICU! Stephen had a great weekend, aside from mysteriously putting on a bunch of weight (almost 200 grams) and having high blood pressure on and off, and as such, we were able to come off of CPAP this morning! Right now Stephen is enjoying some tummy time on the high-flow nasal cannula which provides him with the pressure his lungs need tom stay inflated, as well as the high humidity and heat for his airway and lungs. He's on a setting of 4, but we'll need to come down to a setting of 2 before we can introduce a bottle or try to breastfeed. Right now he's getting to much pressure forced into his airway to try a bottle. But he is really up on his nutrition and his feedings right now. So much so that I'm actually not able (pumping wise) to keep up with him. He's getting 18 cc's an hour which is just shy of 0.5 ounce.

We also hope that by the end of the week, he won't be on any IV fluids so they can take out his PIC (perifereal artery line). That is the line on his left arm. That means he'll be allowed to wear clothes and have blankets from home and be much more mobile.

The other bit of good news is that nephrology hopes to have him on a dialysis machine by the end of the week too. So no more manual dialysis and we might even be down to 12-18 hour dialysis instead of 24 hour dialysis. It will hopefully be the same machine we will use at home, so I'll be able to watch and learn from the nurses.

All of these things help us get one step closer to home!! Stephen also went to a big boy crib over the weekend, so we were able to put a mobile on his crib and he's been able to get some toys. Now that he's one month old, he's in need of some stimulation when he's awake. The poor little guy is getting b-o-r-e-d and I don't blame him.

Here are a few pictures from this morning with Stephen napping on his tummy with his nasal cannula.

Saturday, February 5, 2011

One Month Birthday

Today was Stephen's one month birthday and it was an awesome day! We have not seen Stephen as awake, alert, and alive as he was today...ever! And it was so awesome and just what we needed after we had a very rocky week to say the least. Bill and I were at he hospital bright and early this morning because we were meeting with nephrology this morning for a status meeting and to get some of our questions answered. Before the meeting, we were able to give Stephen a birthday bath. As you'll see in the pictures, Stephen was incredibly awake and alert during bath time. He really loves bath time and especially having his hair washed. And Stephen's nurse Connie (one of his primary nurses) allowed us to keep his CPAP mask off long enough that we could get some really fantastic birthday photos.

Later in the day, I got some good, quality cuddle time when Stephen was even more alert! He's starting to really respond to sound and light and follow sounds with his eyes as they move around the room. He hasn't started to visually track things yet, but I think that's mainly because the CPAP mask is such a distraction in his line of sight. He did have an eye exam this week and passed with flying colors.

We also did some arts and crafts today to decorate Stephens room for Valentine's Day and did some one month hand and foot prints. It was a busy day in Stephen's room, but such a good day. It was exactly we needed to end a pretty crazy week.

I'll share some more details later, but in the meantime, enjoy some pictures of the BIG birthday boy!!!

Wednesday, February 2, 2011

Happy Birthday Lindsey


Stephen and I wanted to wish you a very happy birthday today.Your are the best wife a man could have, and the best mom a little boy could have, and your the best friend anyone could want. Thank you for all you do for both of us. We hope you have wonderful birthday, you certainly deserve it!!! Happy birthday angel.

With all our love, Happy Birthday

Bill and Stephen