Trip to Stanford, Day 2

Friday morning, we were up at 6. We went down to breakfast and after getting something to eat, we packed things up and checked out shortly be 8. Our first appointment was with GI at 9. Well, of course we got lost on the way. We wound up finally getting there around 8:30. We parked in the hospital garage because the Heart Clinic is actually in the hospital. We hiked across the street and made our appointment with plenty of time. We were called into the room, they did her vitals but couldn't get a blood pressure. What a surprise! Her weight was 11lbs 4oz! She was almost 22in long! Wow! What happened to my little girl?

The GI nurse practioner was nice. She listened to our history and understood when I told her that the reason we were here was because we had the appointment across the street and the pediatrician didn't like the fact that we didn't meet with the local GI clinic until September. She told me we could start actual food at 4-6 months adjusted. Also said that we should start milk products around a year adjusted. Said we could do dairy products but also bread and crackers before whole milk. She said the bread and crackers actually had dairy in it that was more broken down than something like yogurt or cheese. So that makes me feel better.

So afterwards we headed across the street out the back to get some mocha at Nordstrom. We were there so early that we heard their morning team meeting! So after we had our drinks, we headed over to the hospital. That was a whole totally new experience in it's own right!

For one, we had to check in and get photo ID sticker badges! WHOA! Okay, so it was kind of nice that both kids got my picture stuck to them. Kind of like the whole "if found return to" idea! So then we had to go into admissions because Princess had an echo scheduled. Okay, well then we were there way early because Princess's echo wasn't scheduled until 11:30. Mom had thought about going and meeting up with Owen, but the school was on the 3rd floor and it was just going to be too much hassle to go and track them down. Beside the fact, I didn't want to disturb him in kindergarten. Kindergarteners have a short enough attention span and ones who are going to school in a hospital have got to have bigger things to worry about than just school work.

Fortunately, this is a children's hospital. So they try to make things as kid friendly as possible. So it turned out that there was a train a short distance from the Heart Clinic. Little Man actually liked the train. I have no idea why. There were buttons on side that made train sounds and made the little lighthouse light up.

So around 10:50 we head into the Heart Clinic. I knew there might be paperwork, but I wasn't sure. We had filled out a bunch at GI, so I wasn't sure what we were going to have fill out. There wasn't anything outside of a consent to treat there. They had kiddie masks there at the desk, so I snagged a few. I know at some point this RSV season Little Man will get sick. So in order to hopefully help keep us healthy, he'll have a mask. Try finding child surgical masks. Go ahead. Go down to your local pharmacy and see. You probably won't find any. Well, around 11 it was time for Princess to be fed. So I set about feeding her. I get an ounce and a half in her and they call us for vitals. She weighs 11lbs 3oz now! They get her blood pressure and it's 115/82! Oh the humanity! Okay, so we get ushered back out into the waiting room and I finish feeding Princess.

Then shortly after 11:30 we get called in for her echo. So they wrap Princess all up and she HATES it. Thankfully they have baby candy for her, so I dip her binkie. Now here's the thing, they WANT her to fall asleep! So here Mom and I are on one side of the bed and the tech is on the other side. I'm on my knees most of the time and the other part of the time I'm in a chair. Being we hadn't been here before, we had to do a full echo. I forgot how long the first echo was! At one point, they had to do the carotid artery in the neck and I wound up sitting there with my arm under her neck, propping her head back. Oh it was agonizing! Then, once the echo was done, we had an EKG. Well, it took longer to put all the stickers on her chest than it did to do the EKG! Then we were ushered back into a room.

We must have sat in that room for 45 minutes just waiting! Mom was starting to get annoyed. Remember, I had been called saying that Dr. R wasn't available. Finally, after about 30 minutes or so, the nurse came in and said that the doc had just gotten out with his other patient and was reviewing Princess's chart. Okay, so maybe soon. I told Mom that the doc might have to read everything from Dr. K and she said we could be there until next week! (Yeah, Dr. K is a little OCD.) Anyway, so finally, the door opens and in walks the doc. It's Dr. R! I told him I was surprised to see him because they had called saying he wasn't going to be in. He then said that he would have to check with the front desk people because they probably called the wrong patients! So he examined Princess and she was just a little flirt! He would touch her tummy and she would giggle and then pout and then giggle again! She even put her hand on top of his! It was so cute!

So I gave Dr. R the run down and he essentially said that we were in good hands locally. She would probably always have an athlete's heart. But that he did want to see the blood pressure better controlled. He would let Dr. K know that and if we weren't better controlled by a year adjusted, he would see her again, but otherwise, she was in good hands. Oh what a relief! I'm SO glad and so thankful! Not many kids go into LPCH and are told "You're fine. We don't need to see you again." This was the absolute best news possible! Praise God!

So after we got out, we found Little Man out at the train with Pops. We then went out to the car and didn't have to pay for parking because when we checked in they gave us a pass! Well, by the time we left the hospital and got on the road it was about 2:30. Oh Heavens! That was a nightmare! We wound up in traffic. Okay, so seeing Dr. R was definitely worth the wait in the room. He was the one we were sent there to see and is the LEADING pediatric cardiologist specializing in cardiomyopathy, but did he have to delay us so much to put us into traffic? Oh, it was agony! We all had skipped lunch and Little Man was crazy hungry! No matter how many Cheez-its he ate, it didn't help. Finally after 2 hours, we were at a stopping point, mainly because I HAD to go to the bathroom! Then me being a mom hit. Let's see, went to the bathroom at Panda Express. We decided to eat there, so I got mine and Little Man's food. (Mom and I were going to share.) Then I had to go out to the car to get Princess's medication. Gave her the medication and then had to shake her bottle. Thankfully Mom fed her, but then Little Man had to go potty. By the time I sat down to eat, my food was cold. Oh well.

So then we got back on the road and it was about another 4 hours before we got my mom's house. We had MORE traffic and it was an hour further north from our house to my mom's house. We stopped at Starbucks and hour from Mom's house and Little Man got an apple juice while the rest of us got decaf mocha's. Oh we so needed them! We got to Mom's house around 8. Pops took their sitter home and I got Little Man into bed and Princess in her jammies. It was a very long day and we all just hung out at the house on Saturday. It was a much needed rest after the craziness that was Stanford.

Thankfully everything was good. I can't believe our good fortune. Every so often I am just blown away at how God has shown Himself in our little family. Princess is truly a miracle. And there are so many things that could have happened to her that haven't. I look at her sometimes and am just blown away. I sometimes wish she looked or acted sick because then it would be easier to wrap my mind around it. Instead, all of her issues are internal. So it's sometimes difficult to look at her and remember that she has all these 'ologists following her. Then I remember than any one of these issues that she's had (the hypertension, the hyperkalemia, the cardiomyopathy), if left unchecked could have taken her from this world and it would have been ruled SIDS. How fortunate we are that our pediatrician decided to send her to Dr. K. Had she not, Princess may not be here. How blessed we are to have everyone in her life looking out for her.

Trip to Stanford, Day 1

Last Thursday, we headed off to Stanford. Princess's big clinic day wasn't until the next day, but because her first appointment was at 9a, we decided to leave the day before. I had written a massive list of things to bring. Most of them weren't any different than when I go to my mom's house, but I went into detail so I wouldn't forget anything. I had things like formula, baby water, medications, a dozen diapers, etc. I usually don't write these things down because I just bring them with me. I also had to bring the stroller, and the pack 'n' play. I don't usually have to bring diapers or bring some place for Princess to sleep, but being we were staying in a hotel, I needed to bring all these things.

We went to Target, so I could get a few of the things we needed and while I was there, I decided I needed some new clothes. Well, nothing fancy. I definitely needed new underwear. Everything I had was either now too small (dang pregnancy weight gain!) or was the post-c-section granny panties I had picked up. I know it sounds weird, but I wanted something new for the big appointment day. So I also picked up a new top and some new yoga pants. Yoga pants are my go-to right now. It's either those or pregnancy pants or size I-really-can't-be-that-size pants. I really hate my post-pregnancy body and oh how I wish I was the size I was when I got married. But at least if I was going to be going to one of the leading children's hospitals in the world and meeting with one of the BEST pediatric cardiologists in the world, I figured I'd better not be too frumpy! Plus, the new clothes took my mind off any freaky nervous feelings I was having.

So then I realized that Little Man would be in the car with us (where else would he be?) for nearly 3 hours! So I had to find something for him to do in the car. So I went a little crazy and had some fun on Pinterest looking for things we could take. The last time I had taken him on a trip was for my step-mother's memorial service back before I got pregnant with Princess. It was then, that my mom suggested a car bag of toys. So I set to work putting one together. I'd been collecting snacks for a bit but still needed to put things together for him. (I'll post about the things in his trip bag later.)

Knowing that my mom was going to try and get off work early, and would be at my house sometime around maybe four-ish, I set about packing everything. Well, after lunch, my phone rang. It was Stanford calling to say that Dr. R would not be available tomorrow and if I would be okay to see Dr. Y. If it wasn't I could reshecdule. I was okay with seeing Dr. Y mainly because we already had an appointment with the GI clinic early the next morning and we had had the appointment with the heart clinic for a month now. I knew Dr. K (our cardiologist) would probably not be happy that we didn't get to see Dr. R, but I was fairly confident that they weren't going to find anything new. The worst thing I knew that would happen would be that they would want to do a cath and we would be there overnight. But I knew that if they wanted to do that, they were going to have to convince me that it was necessary.

So after I got of the phone with Stanford, I was actually feeling okay. So I wasn't going to see Dr. R, but things were going to be okay. So around 2p, I had to give Princess her blood pressure mediation. This is not the easiest task to do with an infant. If you've ever tried to give your baby Tylenol, you kind of get where I'm coming from. The only difference is that usually even the infant Tylenol or Motrin is flavored. One of Princess's medications doesn't have a flavor. I don't think they can add flavoring either. The reason I think this is because on one of the packets of instructions I got it said to mix it with applesauce, water, or pudding to help with the taste. The packet specifically said NOT to mix it with formula or breast milk. So here I am giving my infant who isn't developmentally ready to eat solids or drink water nasty tasting medication. Well, usually she does okay, but sometimes she spits it. This ALWAYS worries me. I KNOW I'm not supposed to give her more if she spits it, but is the reason her blood pressure isn't coming down because she's not getting enough of the medication? If she doesn't spit the medication, sometimes she chokes on it. This is what happened. She spit some and then choked on the rest! I knew this wasn't going to be the easiest day at that point.

Thankfully, Little Man laid down by himself and took a nap, so I was able to finish packing the rest of my stuff and Princess's stuff without him being underfoot. So by the time I got everything together, I had the stroller, car seat, pack 'n' play, two bags for Little Man (one was his car bag and one his suitcase), two bags for Princess (one was her usual diaper bag and the other had all the extras), and one bag for me (I had put my clothes and Princess's clothes in there). I knew my mom was only going to be bringing one bag and probably her work computer. The rest of the trunk was going to be our stuff!

My mom showed up right when she said she would. I had Little Man up and while Pops packed the car, everyone did a potty stop. Then we got on the road. It only took us three hours and I managed to map the way that avoided all the tolls going there! I honestly don't think that was that difficult. I think the tolls were for those crazy people who want to get there faster. We had Taco Bell for dinner, which was a little difficult to find because in the Bay Area they don't allow signage on the freeway. I guess it would get too difficult to see anything if everyone had their massively tall signs all the way up in the air all over the place. Of course, when we went in there, Little Man said he had to go potty but came out screaming a second later. Taco Bell apparently had the hand dryers on the wall that would just turn on automatically if you put your hand underneath it. So I had to go take Little Man into the potty to make sure the "Loud Thing" didn't come on.

As we were on the way to the hotel, we saw lots of tech companies: Dell, Microsoft, etc. We were definitely in the Silicon Valley! We wound up staying in Mountain View because we couldn't find a hotel that was decent in Palo Alto. Apparently, it was the weekend before school started! I didn't get pictures of the hotel, but when we got there, we had to get one of those carts because we had SO MUCH stuff! Once we got into the room we rearranged things slightly to fit the pack 'n' play in there. I then set about making formula and rearranging the counter by the little sink and fridge. Mom remembered the paper towels that I had forgotten and brought her plastic measuring cup as I didn't have one. We showed Little Man the bathroom and he about had another fit when he saw the blow dryer on the wall. He thought it was another "Loud Thing." We unplugged it and let him press the buttons on it to make sure it wouldn't come on. I know this seems like a lot for something so simple as a hand dryer, but he's had some bad experiences with some of the Dyson jet hand dryers when he was younger. I think it was RIGHT at the point where the fears would kick in. So we have to explain a lot to him, but he's okay eventually. He even took a bath in the hotel bathtub! Though he was quite disappointed he didn't have any toys.

When MeMe and Pops stepped out for a smoke, I sanitized all the doorknobs and faucet handles. Yeah, I knew the room was clean, but a lot of times, the doorknobs and faucet handles aren't done and they are GERM MAGNETS! We then settled in to go to bed. Well, Little Man was WAY too awake and wound up staying up until 10! I was up at 3:30 feeding Princess and then finally fell back to sleep around 4. I knew the alarm would go off at 6 to start our long day at the hospital.

Day 2 of our Stanford trip still to come!

In All the Chaos, a Little Bit of Normal

Hubby likes to disappear at times. He doesn't mention that he's going outside or anything like that. It really annoys me. I don't know why. I mean, I'm not trying to be controlling or something like that. But it would be nice if he at least would say, "Hey I'm going next door, be back in a few." He did this yesterday when the neighbor showed up at the door. He just disappeared. It made me so mad! I mean, I've been with the kids all day by myself and would like a little help, but instead, I was the one getting Little Man in bed and because Little Man is three, I kept hearing, "Where's Daddy?" And I was truthful with him when I told him that I didn't know.

Hubby did it again tonight, except this time I kind of knew what he was doing. He was taking Little Man outside to bring the trash cans in. Then I could hear them in the back yard. I figured they were picking up after Sadie Dog. Princess was just chilling on the floor with her toys. When she dozed off, I checked out the back window. What did I find, but Little Man playing in the mud! This is AMAZING! A little bit of background for you all who don't know Little Man. I don't know what happened (maybe it was his slightly OCD father), but he has a problem with getting dirty. He especially has a problem if it's a "digger shirt." (He LOVES dump trucks, diggers, and all things construction.) Last week, when he went with MeMe back to work, she took him across the street to the gas station and there was a big backhoe filling up. Little Man was in SHOCK. He was so in shock, that when the owner asked him if he wanted to climb up inside, he squeaked, "Yes, please." (Little Man is NEVER quiet!) He got "digger dirt" all over him. Surprisingly, he didn't complain that it was on his "digger shirt." I figured it was because it was dirt from a digger and diggers get dirty. So to see him playing in the mud tonight warmed my heart! I was so glad he was doing it. Okay, I'm not so glad that I now have to mop the floors because he came in the house in his muddy shoes and made a complete loop around the whole house, but I guess I can live with it, being he was actually playing in the mud! We had to wash his feet off in the bathtub. Then I saw his shirt:

You may not be able to tell, but there is dirt on the shoulder of his shirt. His shirt happens to say "Dirty Diggers." Oh boy was this one little dirty boy! He had to wash his feet and his hands, but the most surprising thing was that he wasn't complaining that his "digger shirt" was dirty!

So then, we put away his clothes and Little Man got in his digger jammies. (Did you expect anything less?) While we were in his room, I had Hubby pull the Pack 'n' Play out. Well, we also pulled out some boxes. So yeah, Little Man was going to go to bed late. At least Hubby had the forethought to bring Princess in and put her in her bouncy seat. I went out to put the laundry basket up so I can do Princess's laundry and when I came back, I found this scene:

In all the chaos that I have going on with taking Princess to Stanford this weekend, it was nice to find something so common place happening in my own household. I often think that the craziness will never end. We are constantly on the move going from appointment to appointment. It's things like finding Hubby reading to the two kiddos that remind me to slow down and count my blessings.

I've heard that you need to make your mess your message. And boy do we have a mess sometimes. But every so often, there is a moment of peace, a moment of normalcy that reminds me just how wonderful life truly is. I know people say that God doesn't give you more than you can handle, but I sometimes don't believe that's true. I feel like sometimes He does give you more than you can handle so that you remember to trust Him.

I'm so thankful for this moment of peace. It was a good reminder tonight to slow down and not take anything for granted.

Prepping for the Trip to Stanford

Tomorrow, Princess, Little Man and myself along with MeMe and Pops (my parents) leave for Stanford. We'll be leaving tomorrow evening after MeMe gets off work. They'll be picking us up from our house as we are on the way. Princess has GI clinic in the morning and cardiac clinic in the afternoon at Lucile Packard Children's Hospital at Stanford. She earned her way there via Dr. K, the cardiologist. He was consulting with Dr. R about her cardiomyopathy back at the end of June when we were admitted to the hospital for testing. Dr. R is the leading pediatric cardiologist specializing in cardiomyopathy. He literally wrote the book on the causes of cardiomyopathy in children. Since we had the appointment there, and Princess developed the reflux and has had the milk protein allergy for the past three months, we were able to get into the GI clinic there as well, since the GI clinic here in our area didn't have an appointment until September. (We've had the referral with the local GI clinic since we were discharged mid-June.)

So what am I doing today? Laundry, so we all have clothes for the weekend. I also have to pull out the Pack 'n' Play and make sure I remember how to put it together. (It's been about 3 years since I last used it!) It probably also needs a good cleaning with some sanitizing wipes. I also had to go and get gas cards from our local agency designed to help families with special needs children. The agency does gas cards for families because our county is small and rural. The neighboring county has a vast majority of specialists and the children's hospitals with NICU and PICU services. We were offered gas cards back when Princess was in the NICU. I opted not to use all 8 of them during her 11 week stay because I figured we would be seeing specialists out of the area. So this morning, I met with our contact there at the agency and we got two gas cards, a bag of snacks (more for mom than the kids), diapers for Princess, and a binder. The binder is for keeping track of everything. I already have one and will be posting about at a future date. The other thing I am doing today is updating Princess's binder. This happens about every week or so, sometimes every other. It just depends on when we are seeing a specialist.

We'll be spending Thursday night in a hotel about 15 minutes from the hospital. Apparently, it's the weekend before all the medical students start so every place nearby is booked.Thankfully, the hotel has a refrigerator and a microwave in the room so I can keep Princess's formula taken care of.  I never realized how good I have it at my mom's house. My packing list is about the same as it is to go spend the weekend there, except we have to include the Pack 'n' Play with sheets for it, something to warm the bottles in, and a stroller all for Princess. For Little Man, we have to include snacks and a bag to keep him entertained in the car and possibly while we are at clinic appointments. We'll be leaving Friday after our last clinic appointment and then we'll be spending the remainder of the weekend at my mom's house.

Ok, off to go change the laundry, give Princess her medication, and wash bottles!