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!