This Weeks Appointments

On Monday Stephen had his physical and speech therapy evaluation (a 2 hour appointment), Tuesday was labs at the hospital, and yesterday was our weekly 2 hour nephrology appointment. Today we are going to the g-tube clinic for the first time. So we've had a busy week here in the Schwartz house. Luckily I've had some awesome helpers this week! My mother-in-law Tish came over on Monday to help with Stephen and tom occupy Mabel during the therapy evaluation and my Mom came down from PA yesterday to help occupy Stephen at our appointment.

Because of Stephens lengthy stay in the NICU, he qualifies for the PIE program; a program run by the County for Parent-infant education that aims to help kids with developmental delays. Luckily Stephen is pretty much right on track with all his developmental milestones, but we need to work on getting more movement in his arms, shoulders, and hips and also getting him to open up and relax his hands some more. But considering his movement was severely restricted in utero without amniotic fluid and having IV and lines in his arms for over a month, he's doing fantastic! And he totally showed off for the therapists on Monday by smiling big at his toys, holding his rattle and responding beautifully to my voice and face. It was so awesome to see him do so well!

We came up with some great goals for Stephen to achieve throughout the coming year and will work with a physical or occupational therapist every other week for the next couple of months and then once a month to work to achieve those goals.

Our nephrology appointment also went really well. They think Stephen's dialysis is going really great and his labs came back good as well. His sodium levels are much better than last week and his liver appears to be functioning great as well. And better yet he's gaining the good kind of weight, not fluid weight, and he's getting longer! He's up to 11 pounds 15 ounces and he's over 57 cm long. We are now over halfway to getting his kidney!

Update: G-tube clinic went really well today too. His g-tube looks great and I learned that I'm not actually supposed to check the balloon weekly and I should be changing the extension tube weekly. I hadn't received any extension tubes from Apria, so they'll fix that for me. Oh, and we aren't supposed to be cleaning the site like we are. Probably would have been a good thing if the g-tube clinic people had visited us in the NICU before we left to tell us these things. But at least we know now, right? And we won't need to see them for three months. YEAH! Oh and the bleeding thing is normal when you replace a g-tube. She said it's normal to have some bleeding for a few days when you put it back in. Good to know!

First Trip to the Mall

I mentioned last week that I had a classic new Mom moment during Stephen's and my first trip to the mall. He was really good for about an hour as we strolled through the mall making a return and checking out the new iPad 2. Which by the way is WAY cool! On our way through Nordstrom, I stopped to pick up a few shirts for Bill and as I was paying, Stephen decided to wake up and make his presence known. Since we were in Nordstroms and they have really nice women's lounges where I could nurse Stephen, I figured that should calm him a bit and maybe he was just hungry. So we headed to the 2nd floor lounge.

And of course, just my luck, there was another young woman nursing her little baby girl, her Mom, and two other women in the lounge. Even though I was a bit nervous, I sat down anyway and rocked Stephen until he was calm. As I rocked him, I took my cell phone out to check the time and placed it on the table next to chair. The girl across from me asked me how old Stephen was and I panicked because I have no idea how old he is in weeks, just months. I don't know why, but I felt so stupid for not knowing the answer. So then I got nervous and didn't want to nurse him because I had never nursed him in a "public" place before. So I figured I would go upstairs to the 3rd floor lounge and maybe if I got lucky, there wouldn't be anyone there. So I put Stephen back in the stroller, he started to cry instantly, so I quickly got out of there.

Luckily the 3rd lounge was empty, so I got myself and him situated and started nursing him when I realized CRAP I left my cell phone down there. I had to yank Stephen off my boob, he started to cry so i didn't even bother putting him back in the stroller but instead carried him out to wait for the elevator. As I'm standing there, a Nordstrom employee comes over and pulls down my shirt in the back. I basically forgot to redress myself. I said thank you and panicing, told her i left my cell phone downstairs. I think she recognized that i was obviously a new mom and panicking a bit, so was so nice and offered to help me. She went into the lounge to retrieve my cell phone for me, came out and said, "Did you also leave your shopping bag?". In my moment of panic I not only left my cell phone but also the bag with the shirts I had just bought Bill. And of course the other young mom was still calmly sitting on the couch nursing her little girl thinking how much of a nut job I must be!!!

Back To The ER

Well I guess I was a bit overconfident about my g-tube skills because we had to head back to the ER tonight to check out his tube. This afternoon when I went to give him his meds, there was all sorts of dried blood around his button; something that has never happened before. I was pretty concerned not only because of the blood, but because I had just replaced the g-tube myself on Saturday. So I attempted to contact the GI doctors that saw Stephen in the NICU, but didn't have any luck since it was already 4:15 pm. Then I called the pediatrician who suggested I clean the incision site and then watch it over the next day or two to see if looked infected. If it started to look infected or bleed again, they told me to take him to the ER. Yippee.

I cleaned the whole site like I do each day (and what I did this morning after his bath) and it looked really normal. So I figured no big deal after all. Well three hours later I checked it again and what did I find? More blood. So off to the ER we went.

Two ER doctors (one of which had no idea how to hook up the connector piece to the g-tube button), three nurses, two x-rays, and four explanations later about Stephen (no he really doesn't have any kidneys), we were sent home. Although not without a quick visit to see some of our friends in the NICU! And....we'll be back at the hospital tomorrow (again) for routine labs. We just can't stay away from our home away home I guess.

Another First

I think the last time I wrote a post about "firsts," Stephen was still in the NICU. Well, we had another first on Saturday night...Stephen's g-tube came out.

I was going through out nightly routine of checking Stephen's blood pressure, getting his weight, and dressed him in his pj's for bed, when i realized I had yet to check his g-tube balloon for the week. It's become a weekly ritual for us to check his g-tube to make sure the balloon is inflated properly so the g-tube doesn't pop out (like it did twice in the NICU). The balloon is filled with about 5 ml's of sterile water, but over time the water can leak out deflating the balloon.

The g-tube that Stephen has now looks like a button from the outside and on the inside is a little rubber tube that protrudes down into his stomach. The little rubber tube is actually what gets inflated to look like a little ball or balloon filled with water. In the NICU, Connie taught us how to inflate and deflate it and how to replace it if came out. We also learned that if you don't get it back in place within about an hour, the hole can close out causing Stephen to need surgery to reopen it.

So what happened Saturday night was that I was checking the balloon level and when I pulled all the water out into the syringe, the g-tube popped out because the balloon was no longer inflated and I hadn't keep my other hand on top of it to keep it in. Of course my first instinct was to panic. And then to scream for Bill. But then I grabbed a clean gauze pad to place over the whole and try to prevent stuff in his tummy from coming out and also to prevent germs from getting in. Luckily we both composed ourselves quickly and while Bill held Stephen still, I replaced the g-tube and quickly inflated it. It wasn't difficult, but I was really nervous sticking that thing back into the hole in his stomach! Thank goodness Stephen was hardly fazed by the whole ordeal.

Now at least the fear of it happening the first time is over and next time it won't be so scary.

Mr. Fussypants

Sorry guys, I know my posts have been few and far between lately.  It's not that I don't want to post, or don't have things to post about, but it's been finding the time to actually do it.  Pretty much the same sentiment that every new Mom complains about....finding the time to do anything!  And Mr. Stephen definitely has not given me the chance to do much of anything lately except for our daily walks when it's nice outside (thank goodness for the good weather as of late!!!).  You see, Mr. Stephen has decided that he's now going to be Mr. Fussypants and pretty much cry all day and night when he's not sleeping.  The first week we were home, it was really nerve wrecking because we thought something was really wrong.  He never cried this much while in the NICU, so we figured he must be sick or in pain for some reason.  We also never did the 12-hour nighttime dialysis in the NICU, so we were worried about that as well.  But once we got past that first week and our first trip to the ER where everything turned out to be just fine, we realized I just birthed a fussy baby.

We have pretty much figured it out that it must some how be related to all his gas, reflux, and his formula.  Or he's just plain colicy.  I was a colic baby so Billy says it's my fault (don't worry, he's only kidding).  But I'm not sure it's colic because it's not at the same time everyday.  But who knows.  A friend suggested gripe water to help and I'm just waiting for the nephrologist to clear it before I run out to Whole Foods and snatch some up.

So today at our weekly nephrology appointment, I asked if we could change his formula to something different to see if that helps.  So we're going to switch it up from Enfamil Premium Infant to Enfamil GentleEase to see if that helps.  the only downside is that based on Stephen's labs last week, we have to up his protein, which might counteract the chance in his formula.  But we'll see.  And based on his weight, 5.3 kilograms, we're going to up his daily dose of reflux medicine.  Hopefully that will help as well.

Based on his labs, he also needs to get sodium added into his food (the pharmacy makes up a salt water sollution) and we need to have some additional labs done to ensure that his liver is functioning properly.  I think I've mentioned this before that often times liver issues are a side effect of ARPKD.  So fingers crossed we don't need to deal with that.

Oh, and one more thing.  We officially found out that Bill is not a blood match for Stephen either.  Bill's blood type is A negative; I'm A positive; and Stephen, of course, is O positive.  It's pretty much par for the course that we wouldn't be a match, but I was really hoping that we could catch at least one break and Bill would be a match.  But no such luck.  So...we'll definitely be putting Stephen on the donor list as soon as he gets a bit closer to the correct height and weight.  Luckily, we're just over half way there for both!

Luck of the Irish

Happy St. Patrick's Day to all of our Irish (and non-Irish) friends! Here's Stephen on his first St. Patty's day.














And what happened when Mommy took my green milk away....

Insurance Woes

So yesterday afternoon while going through the mail, I got three letters from our health insurance company. Every time I see mail from United Healthcare I cringe because it's usually some kind of letter that requires me to spend an hour on the phone with UHC and then more time off the phone collecting papers and documents. And yesterday was no exception, all three letters were full of bad news for Stephen and his Mom. They rejected our request to pay for his formula and protein supplement, his Synagis injection, and our request to see the pulminologists whom saw him in the NICU and who already know his lung health history.

I figured they would reject the request to cover the costs of his formula, but I thought they might cover the cost of the protein supplement. But I NEVER thought they would reject the request for the synagis vaccine. Synagis is extremely important for Stephen and all sick babies. It is the only FDA-approved vaccine to protect high-risk babies' lungs from the respiratory virus, RSV. RSV has been very prevalent in our area and if Stephen gets RSV, he's sure to be sent to the PICU for quite awhile. Luckily, Stephen received two out of three of his synagis while in the NICU, so we only need one more shot to get him through cold and flu season.

The letter states, "Your doctor has requested Synagis for your child. However, your child is not in a high risk group that meets the criteria for additional Synagis use."

Seriously?!?! What part of spending 59 days in the NICU, having NO kidneys, a compromised immune system, and being on a ventilator for a period time doesn't put you in a high risk group?!? In my eyes, Stephen is the very definition of high risk! And thankfully his pediatricians and his pulminologist both agree. Luckily as soon as the pediatricians heard this, they immediately petitioned our insurance company to cover this.

Now I just need to work on getting them to cover Stephen's formula and supplements. He needs the extra protein which he cannot get from breast milk or formula alone, but most importantly he has to have formula because you can't put breast milk in a feeding pump. Which should be reason enough for insurance to cover it. And his "recipe" for formula is 1,000 times more concentrated than a normal baby. Instead of the 2small scoops of formula per batch, it's a half cup of powder per days feeding. That equates to one can of formula every three days.

I'm telling you, I think they make health insurance so confusing so that people just give up and do whatever they tell you instead of fighting it. As much as it drives me absolutely crazy, I vow to win over insurance and get these things paid for!! Now if only I could clone myself and have one Lindsey to do paperwork and phone calls and another Lindsey to hold little Stephen all day!

First Trip to the ER

Well, we just got back from our first trip to the emergency room. And I hope we never have to go back! Although, I say that knowing that we will inevitably going back. It was nothing that was an actual emergency, but Stephen wasn't feeling good at all yesterday and we were heading to the hospital today for lab work, so his nephrologist said we should just go to the ER.

Yesterday morning started off really great. Stephen slept awesome the night before and after unhooking him from dialysis, we had breakfast and then a tubby. Then we went for a short ride in the car to pick up some lab work papers at the pediatrician. But then everything went downhill from there. Stephen started getting really fussy and upset and nothing I did calmed him down. By the evening, I realized he hadn't been pooping much at all or passing gas, which he usually does A LOT because of the protein in his milk.

So last night in had the pediatrician paged and he told me to give him a glycerin suppository, which I did. But then still nothing. By this morning, he still hadn't gone to the bathroom, his dialysis output was low, and he was looking puffy again. So I called the nephrologist. And then true to form, between the time I talked to her and when she called back to tell us where to go and what to do, he pooped twice!! But since we were on edge a little, we decided to go to the ER anyway.

And 4 hours later, we're home and we still didn't get all of his blood work completed. The ER is a bit of a nightmare. One poor Mom was trying to check in her daughter who was having cardiac issues and they were waiting in line behind us. But in the end, at least we now know that Mr. Stephen is doing just fine and we will find out tonight from his nephrologist about his lab work and what we should do about his dialysis.

Now it's time to get outside and enjoy some sunshine. We're getting ready to take Stephen on his first stroller ride down to Shirlington with Mabel in tow.

Hope everyone is having a great weekend!


P.S. Best part of the ER visit, getting to see Stephen's NICU nurse Jess. As soon as she walked in the room he perked right up! No joke!!

First Outpatient Visit

Tomorrow was our first outpatient nephrology appointment and Stephen's first outing with just his Mommy.  I was a bit nervous juggling Stephen, the car seat and the stroller by myself coupled with the forecast for downpours throughout the day, but all went well.  Especially since I got a prime handicap parking spot near the door to the doctor's office (the parking at Stephen's doctor's office is less than easy...we've gone before when there are no spots available...kind of like the hospital).  I feel super guilty parking in the handicap spots, but it sure does make things easier! :)  And with some practice the night before, I was able to master the stroller with ease.  The hardest part about taking Stephen anywhere is carry him up the 45 or so stairs in his car seat from our front door to the car.

During our appointment yesterday, we met with the dialysis nurse, Deb; one of Stephen's nephrologists, Dr. Weintraub; the nutritionist, Martha; and the social worker, June.  We will meet with every one each Wednesday when we have our weekly nephrology check-up.  First thing Deb did was check his blood pressure, weight, height, and head circumference.  His weight is in the 47th percentile and length is only in about the 10th percentile. At one point in the NICU, his height was off the charts, but it seems he's stopped getting longer and is just getting bigger by putting on weight.  Which right now, is ok.  At some point if his height doesn't catch up, we might have to start growth hormones to make sure he's long enough for his new kidney.

We also made some slight changes to Stephen's nutrition.  Prior to his appointment, he was getting four bottle feeds a day of 48 cc's, I nursed him twice a day, and he was on the feeding pump at night.  Since he's been doing so well nursing, I asked if I could nurse him more and the doctor's said ok.  So now I only need to give him three bottles and can nurse three times a day.  And now that Stephen is taking all 48 cc's in the bottle, I don't have to deal with gravity feeding him via his g-tube each time he eats.  I only have to connect his g-tube once a day now when I give him his medicine.  Which makes things a little easier for me...much less washing and sterilizing!

Our pediatric geneticist is in the same office as our nephrologist and I was able to connect with Dr. Lewanda's nurse and get our test results.  Even though Dr. Lewanda doesn't have an available appointment until September (crazy, huh?!?!), Dr. Weintraub read over our results and explained them a bit to me.  What they showed was that They were able to find the mutation for ARPKD in both mine and Bill's DNA.   Which is actually a good thing, since it concretely explains how we passed this disease on to Stephen.  I've been learning from other ARPKD parent's that some times the genetic testing actually comes back inconclusive and the lab isn't able to find the mutation in the DNA sequence.  What this means for us is that if we want to have another baby, they will able to do exact prenatal testing for ARPKD in utero and/or we could do IVF to ensure the baby has no chance of getting ARPKD.  Basically, they could fertilize some of my eggs with Bill's sperm and test the embryos for ARPKD prior to implanting them back in me.  I have no idea what that little "science experiment" would cost us, but I told Dr. Weintraub yesterday based on what we went through with Stephen when I was pregnant, there is no way I would do anything but IVF the second time around.  But don't get excited...we're a long long way off from that!!

The rest of the day was spent making phone calls to insurance, various agencies and programs, and with the hospital lab to schedule Stephen's labs.  Stephen spent the rest of the day napping and then the evening and night alternating between restless sleep and crying.  Today is a pajama kind of day since the rain finally came today and my goal is to hopefully get him to sleep less during the day and more at night.  Like every other Mom's challenge!

Thank you!

This isn't the proper way to thank everyone, and I promise one day I will finally respond to all the emails and messages and get the much deserved thank you notes written, but in the meantime, I just want to thank every single person who has emailed, texted, called, sent us or Stephen a gift or meal, thought about us, left a comment on the blog, spread our story, and most importantly prayed for all three of us. I kept saying I would get all my notes and responses done when Stephen came home during his nap times, but i think I grossly underestimated my free time! I read every single email and comment and usually share them with friends and family because they are so touching. I can't recall how many times your comments and emails have brought tears to my eyes. And they have definitely kept me going over the past two months when I thought things were just to overwhelming to manage. And trust me (you can ask Bill to back me up on this one), there were lots of those times, I just don't usually share those moments with anyone except for Bill (with the exception of the few times I lost it at the hospital). So....thank you from the very bottom of my heart.

The past few days have been a little challenging as Stephen didn't really want to lay down in his crib or spend more than 5 or 10 minutes in his bouncy seat or swing. But luckily we had lots of extra hands around the house so I could prep his bottles with formula or milk, prep his dialysis machine, his meds, and try to find a few minutes to take a shower in between. Although night time is a whole different ball game. It's tough at night and in the morning because he has to be hooked up to dialysis for 12 hours. And babies definitely don't sleep for 12 hours! But we are trying out different schedules and routines and figuring things out as they happen and making adjustments.

I thought today was going to be really stressful and scary being home alone all day with Stephen since Bill is back at work, but so far, so good. It's 2:46pm and I'm pumping while I write this, watching both Stephen and Mabel nap. Mabel on the floor and Stephen in his bouncy seat next to me on the bed. We just had our "lunch" and Stephen ate like a champ! It's the first time I've ever given him a bottle where he ate so much that I don't have to gravity feed the rest via his g-tube or hook him up to the feeding pump. And the nurse came by at noon to check on us and his lungs sound perfect. A huge relief for Mom and Dad!!

I probably just jinxed myself by saying the day has been way better than expected, but I imagine each day will bring new challenges and triumphs just like in the NICU. Just on a slighty smaller scale (ha ha).

And just to finish off the post on an even brighter note, here are some pictures from over the weekend. This was Stephen's first real bath at home and a group shot with me, Mabel, and Stephen (her new best bud).

Picture of Stephens departure form the NICU and his arrival at home

I was writing a blog post and just as I finished it froze and erased everything I had written, so since it is 11:45 pm, I will just put up what everyone wants to see anyway. Pictures of the little man coming home!!!!!

The Calm...

Before The Storm.

The house has been scrubbed from head to toe, the flash cards are written out and taped up around the house, the cycler has been setup, and Mbbel had tubby time tonight.  Now with Billy out of town for the night in Orlando on business, the girls (Mabel and I) are snuggled up in bed getting ready to watch a movie.  I'm soaking up the last night of total silence and getting ready for another busy/crazy day tomorrow before discharge day.  I learn how to work the feeding pump tomorrow, do another trial run with the cycler, we have our last appointment with physical therapy, and I need to wrap up a bunch of loose ends with nursing care, insurance, Medicaid, and hospital billing.  I also started to bring home lots of stuff we've been accumulating in Stephen's room in the NICU.  I need to do more of that tomorrow and get the frozen supply of breast milk from the NICU deep freezers to Tish's deep freezer at her house (since we don't have one in our house.  Breast milk is only good for 3 months in a regular freezer, but will stay good for one year in a deep freezer). 

Then it's to the airport to pick up Billy and back to the hospital for our last night time visit.  It's almost too good to be true!!

Good night!!!