Long Day

Today has been a LOOOOOOONG day. Last night was long enough and just as I got back to sleep this morning at 7:30ish the day started. First our pediatrician came in to tell us the results of Max's Upper GI test he had done yesterday (which was not fun btw). He said that he was shocked, or surprised that everything anatomically looked perfect. He said not that he was hoping for something to be wrong, but it was just surprising that everything was normal. Then he told us that he wanted to get a swallow test done today. He also put Maximus on Prevacid for some slight acid reflux. Tony ran home at about 7:30 because his new computer was being delivered this morning sometime. At 8, I tried to go back to sleep but another Dr came in to check his vitals and make sure I knew what was going on for the day. Tony calls me at 8:30 telling me that he plugged the computer in and it won't turn on. And the only thing he could do was run it to the Apple store to try and get it fixed. He got there and they told him to just ship it back and they will send him a new one out. He wasn't very happy and neither was I because he was stressed about getting back in time for Max's test, but needs the computer to finish some video editing. Then at 9:30 Maximus got his NG tube (Nasogastric - feeding tube down the nose). After the nurse left, I cried. It was not fun and he was not happy. Then while I fed him his bottle (which is what I'm doing now instead of putting him at the breast, still giving him breast milk and formula with banana's to thicken it, because he gulps it too fast) I'm praying the whole time that he will take all of the bottle so I don't have to put the rest of what he doesn't eat in the NG. He has to eat 500 ML's in a 24 hour period. At 10, they tell me that Radiology and the OT (Occupational Therapist) want the NG tube out for the testing. Which keep in mind I asked the nurse about that and she suggested putting it in just to get started with the 500 ML a day. I was so mad! It could have waited one feeding! So then the swallow test was scheduled for 1:30, we get down there on time and they tell us that they are behind a half an hour! Well we scheduled it with his feedings so to make him go another 30 min without eating would mess him up. But we couldn't do anything and I needed to pump for them to test my breast milk for calories, so I ran back upstairs to pump for 10 min and just as I get started they tell me they are ready. Go figure. Then as I'm heading back to the room to give my milk to the nurse for testing, I start my period! Like really? (sorry if thats TMI, but it seriously could not have come at a better time?! Really?) I had heard that while your nursing you may not have a period. So it came as a complete shock and I was worried that it wasn't my period, it's my first one since getting pregnant. I called my mom and she called our OB and he said not worry its normal! Phew. Then I ran back down in the knick of time, they were just about to start the testing! I wanted to be there so I could feed him his bottle for the test. We got done at about 2, came back to the room and started his feeding. Because he had gone so long we had to give him more to make up what he hadn't eaten. He didn't take it all in the bottle so we had to put the rest in the NG. After I fed him, my mom took him while Tony and I ran home to get some more stuff and get some food. We are back now finally just chilling in the room. The swallow test results we will get from the Pediatrician in the morning but the OT said everything looked pretty good other than he has a low tone with his sucking meaning he doesn't have a strong suck. But everything looks pretty good there too. So whats the problem you ask? If you ask me, he is just tiring out and not getting all the nutrients he needs in one day. Nothing is wrong with his anatomy or internally that we can see thus far. And we can deal with a little reflux. So right now, I am praying we won't have to go home with the NG. I only have a little over a week left before going back to work and I just don't want to deal with that worry even though I know he will be ok and I have plenty of help to take care of him. Anyway, thats an update for now. Here are some pictures and some videos if you feel so inclined to watch the tests.

Getting a ride with mom to Radiology

The Radiology machine

So comfy

Me and Mom waiting to get the show over with

Getting the Upper GI test

Ready for the swallow test to start! I'm so tired! Just leave me alone already!

Isn't this the cutest sad face you've ever seen?

Comy for a min in this cool chair. He almost jumped out of it!

back in my room, mom feeding me

My monkey toe grabbing my cord

Swallow Test videos

Upper GI Test video (I couldn't get the other one to work, but this gives you an idea of what it was like)

Look Familiar?

Maximus was admitted to the hospital tonight. He hasn't been eating very good at all for a couple days. At first I thought maybe it was just because of his shots, but it's just gotten worse since we started supplementing formula. He just doesn't eat well. He acts like it hurts to swallow and I know that is not normal. I got really worried after last night when he went most of Sunday not eating and then last night and most of today not doing well. So I called the pediatrician at 9. He didn't get back to me until 6:30 and he gave us two options.

1. To change his formula to a high tolerance and put him on Prevacid to see if he has some acid reflux. He thinks maybe he has some.

Or

2. Put him in the hospital and do some testing on his esophagus, and intestines, basically testing everything they can to find out why he won't eat.

We opted for the second because we were already discussing getting tests on his stomach and throat. And I'm super nervous that something is wrong. I hope I'm wrong and nothing is going on. But I want to do what's best for him even if it means putting a feeding tube on him for a while, which is still an option.

Maximus is doing great! He was a happy camper the whole time being hooked up to all the familiar cords. He doesn't have to have an IV yet so that's good. Tomorrow they will do a Upper GI test. Basically they put dye into him and track how it flows through his body. And the will also check his esophagus for any lesions or sores.

As far as me and Tony go, we are doing pretty good. It sucks being in the hospital again, but we are hoping to get it solved soon. We will be here three days. We are both staying tonight. Tony took work off tomorrow but will go back Wednesday so I'll stay here the rest of the time and he will be here when he's not at work. I'm pretty exhausted but I know what I need to do for my son is important so it makes it worth it. I love him so much and I just want him to be comfortable and gain weight! I'll keep updating as we find things out. Tonight we are just doing test weights on him. Weighing him before feeding and then after to see how much he is getting. We will see how it goes!

Thanks to all those keeping us in your thoughts and prayers. We love you!

Not a good day

Went to Maximus's two month check up today and didn't get the best news. He only barely weighs 9 lbs. Not what I was hoping for. He was suppose to be at least 9 lbs 12 oz, to catch up. The Dr told me to feed him every two hours, get a bottle that resembles the breast and up the formula in the bottle. We go back in two weeks to see where his weight is. If he is still not gaining what he should be, then the next step is possibly putting a feeding tube in his stomach. So I am a little stressed, and worried about him. I need him to gain weight! I don't want to have to out him on a feeding tube. I mean if that's what we have to do then I will do my best. Maximus also got three vaccines today. We waited on the Hep B because he is so small still. So he will get that at a later time. All I have to say is I'm glad I don't have to be the one giving those shots! Poor guy! He cried so hard. I felt so awful. He hasn't felt good since, has slept most of the day, won't eat hardly at all (which worries me more) and has a slight fever. But I'm hoping it won't last more than a few days.

Tony's brother came over after the appointment and helped Tony give Maximus a blessing. It was so good, and has helped me today. We just need all the prayers we can get right now! I just want my little man to be ok. Thanks to all those who continue praying and supporting us and our son. We appreciate all of you.

There is a first time for everything

Last night was the first night Maximus slept in his crib! He has been sleeping in a bassinet in our room since we brought him home. He is getting so long that he either kicks one side of the bassinet or he pushes his head into the other! So last night I put him in his crib to sleep and I put the baby monitor by him (I was a little nervous, but knew it was coming sooner than later). He did great! Slept just fine! I kept checking the monitor to make sure he was breathing but only got up once to check on him. I think I did great too! I didn't get a picture last night but I'll make sure and get one tonight.

We go to the Dr tomorrow to see how much he has gained. I am hoping for over 9 lbs. He also has his 2 month check up.

Maximus is two months old today! I can't believe how fast time is going. I'm so sad that I only have 2 1/2 weeks left before I have to leave my baby for 6 hours a day and go back to work. I'm hoping to be home by summer. But we will see. I do however miss work a little, I love my job and everyone I work with and miss being there, but I know I will miss my Maximus more when I have to go back. I have anxiety sometimes leaving him. I know he will be in good hands but I just want to be the one teaching him and helping him grow. Maybe I'm selfish, I don't know. I also hope Tony gets his Real Estate done so he could be home sometimes too. That would be nice.

At 2 months:

Maximus
- Has found his hands
- Loves to lay on the floor and kick his legs and play with his hands
- Smiles a lot not just because he is gassy
- Laughs at my silly high pitched voices and my goofy faces
- Loves cuddling with dad
- LOVES bath time (every night)
- Enjoys having his clothes AND diaper off. This is new, every time I undress him he giggles and gets really excited!
- He likes being in mommy's arms

Some pictures and a video:

Playing with "Bird" and "Pippo" (Bird is Tony's childhood stuffed animal, Pippo is Maximus's monkey we bought him when we found out he was a boy)

Sleeping in mom's arms. Yesterday thats all he wanted was to be with me. The second I put him down he would start crying, but as long as I was holding him he was fine.

I finally had to put him in the back pack thing to get dinner started

This morning he grabbed his oxygen cord and was trying to eat it

He took a nap in my blanket basket today

Cuddling with dad

I finally started his scrapbook this is the cover and it took me way too long to do LOL gotta brush up on my scrapbooking skills. I gave up on the digital for now because it's expensive and I already have TONS of supplies for paper scraping. 

Video of him playing with "Bird"

New Machine

Today we were informed that because Maximus is on 1/4 liter of oxygen he would be using three big tanks a month. So they suggested we use an oxygen concentrator. It makes oxygen from the air and doesn't have to be replaced 3 times a month. So Maximus has a new machine. The only thing we were worried about was how noisy it was going to be. But it's not too bad. To me it sounds like being on my dads job with a generator running in the distance, and it sounds like its breathing itself! Max is doing good today, he even let me take a 2.5 hour nap with him! Like a solid, straight two hour nap! I only woke up briefly twice to make sure he was still breathing because during the day he rarely sleeps more than an hour without making noises.

A Cute Mess!

Yesterday I had a dentist appointment and just as I was about to put Maximus in his carseat and go, he had a diaper blowout! It was so bad! I felt so bad for the little guy. It was everywhere. All over his legs, stomach, back, arms, and while I was changing him he got it in his hands and I was trying so hard not to let him get it in his mouth! He is so wiggly! I didn't know at first if I should just throw him in the tub clothes and all or just undress him and then put him in the bath. I opted for the second, and after should have gone with the first idea. I had it all over me and it was disgusting! I was thankful for the experience in taking care of my grandmother for two years, I did everything for her, including changing her because she was incontinent and it was bad sometimes! Anyways, here's a pic of the cute mess! (don't think I'm horrible for snapping a few pics before changing him)

Some more cute pics

We call this "Power!" He is constantly doing it! I have a video below. 

Just a cutie!

His Billy Bob teeth pacifier

Currently sleeping while mom blogs and watches Grey's Anatomy and dad works on video editing. 

Two videos

 1st of him laughing a little bit to Patty Cake, don't mind my high pitched baby talk voice... 

2nd him doing the "Power" with his arm and being wiggly 

My Valentine

Valentine's day was productive! I made Tony's Valentine, just a card, and 52 things (written on a deck of cards) he can do to enhance our love! Good idea eh? Also gave him peanut butter M&M's and Love Potion #9. (got some of the ideas from a friend on Facebook! ). We gave Maximus a package of diapers, a cute monkey (from mom) and a book (from dad). Tony had to work late, but brought me a beautiful bouquet of roses! I made homemade heart shaped pizzas for dinner, totally forgot to take pics! But they were good! Of course the grandmas spoiled Maximus (and us) for Valentine's also! Candy, outfits, and toys! Maximus also got a cute Valentine outfit from aunt Rosey, and cute Valentine pj's from his aunt, uncle and cousins on Tony's side. (pics of the Valentines events below)

I think my little man is gaining weight! He feels heavier to me. So I'm praying for over 9 lbs by February 23 at his 2 month check up. He is still wearing newborn diapers and mostly newborn clothes. He is almost in an awkward stage where newborn is too small, but the next size up is 3 months and that's too big and the 0-3 months are mostly too big too. So I'm hoping he will gain some more weight so his clothes fit him better. He is still on the oxygen, and we won't go back to the cardiologist until the end of March. We also go back to the dermatologist on February 20th. Just mostly a follow up and he will give us some techniques in keeping his skin healthy. Then on the 28th we have Kids On The Move coming for the second time to go over some goals and things for the next few months. Also Shriners evaluation appointments on March 5. So some very exciting appointments the next few weeks!

Also a special thanks to my aunt and uncle Taylor for the letter and support. Words cannot express the kindness you've shown us. We appreciate it so much. We love you guys and hope to see you soon!

PICTURES:

Outfit from Aunt Rosey

Roses from my awesome hubby

Watching a 3D movie (Coraline) with mom and dad in the pj's Aunt, Uncle and cousins Nelson's gave us

Love Potion #9... ha ha corny I know. But I had to be cheap this Valentine's

52 ways to enhance my love... 

1st Valentine's present from mom and dad

8 7.5

Just got back from the Dr and running a few errands. By myself! I have to admit I was a little nervous going out by myself carrying oxygen, Maximus in his carseat, a diaper bag and getting there on time, but I did pretty good! Maximus did well too, he slept the whole time and we are home now and he is still snoozing (time for a nap!).  I also stopped to a lactation clinic and the grocery store. 

Maximus now weighs 8 lbs 7.5 oz! Yay! Not up to the 8 lbs 12 oz we and the Dr wanted him at, but he's gaining! So thats good. Dr is going to have me keep doing what I've been doing but add a tsp. of Gerber formula to his 2 oz bottle and see if he will tolerate it. I think he will but we will see later today when I feed him. I'm also directed to give him an infant multi vitamin too. We go back to the Dr in 2 weeks and are hoping for at least 9 lbs. But at this point as long as he keeps gaining weight I'm not going to worry. Dr also says he is staying within his curve as far as measurements go, so as long as he keeps going along the curve, not to worry. Plus the other day at the Geneticist he said that Max is on the smaller side and thats part of Goltz Syndrome. Also Maximus moves and moves and moves when he is alert and awake, whether he is on the floor, in your arms, bouncer, anywhere he is awake. So he is constantly burning calories. When he is doing that a lot durning the day the Dr said to wrap him up or hold him tight so he won't do it as much and burn off his calories as fast. I'll have to capture some video of his moves! He's pretty cute.

Well Valentine's Day is just around the corner! Wahoo! I'm not really big on Valentine's Day but this year I'm excited for it for some reason. Maybe it's because my sister Rosey bought Maximus the cutest little Valentine's onsie. Or maybe because I really really want to see The Vow! Or maybe just spending time with my Tony is what I'm looking forward to. Is anybody else looking forward to Valentine's or do you despise the holiday? What are you doing? What do you want from your sweetheart? Or what are you getting them? I'm going to make Tony go to The Vow with me on Monday night (he has to work late on Valentines). And I would really LOVE to have one of these...

I have no idea what do get or do for Tony. But I'm sure I'll come up with something! Hope your all having a good day! Can't wait for the weekend, and Monday night!

Shouldn't they be paying us?

So going to the Dr or having RN's and OT's ect. in the home has been an interesting experience. Most of the time we as parents are teaching them about our son's rare condition (which is actually more rare than we first were told. The geneticist said there are only 36 cases, and only 4 of them are boys. Maximus will be the 5th.) So I've decided that they should all be paying us! Right? That seems fair. But unfortunately that is not how it works. We didn't learn much from the Geneticist yesterday. We did give consent to starting a medical journal on him for future Dr's and medical research and the good thing about that will be any testing will potentially be free based on the fact that it's for research. So that's cool! In other good news, the missing mosaic gene did not come from I or Tony. Which we pretty much knew but confirmation from the geneticist was good. It's just a random missing link. I still think it's awesome that Maximus made it here. I'm so glad his mutation started just after conception (within days apparently) because if it hadn't I would have miscarried at some point in the pregnancy.

Kids On The Move also came today to see if Maximus qualifies for the program. And he does of course! Usually it takes 45 days from the first visit to get approved, well they approved me on the spot. (I'm sure the fact that he has a rare condition had NOTHING to do with it) They basically told me they want him, they want to learn from him and want to teach me how to keep him on track! It made me feel good, but at the same time I'm thinking my son is NOT a science experiment! But I'm happy to get the word out and educate people on Goltz. Kids On The Move were very impressed with me (not bragging), I am a very organized person. I have a 3 inch binder full of all the paper work we have received and continue to receive so I have all the information for all the different Dr's and programs and people that are interested. It's organized with a calendar and dividers for each specific Dr and things to make it easier mostly on me. They loved that! They were also worried about my well being but were also impressed at how well I was handling it. I guess I just feel like I have a pretty normal baby! He is doing so good so far and just has a few milestones to get over. So why stress about it? Why treat him different when he's not? I just know that I have to be the best for him and getting depressed or letting things get in the way is not going to help him stay on track or get better. They were also impressed with Maximus, he is pretty average in most areas. Just going to work on motor skills, strengthening his neck muscles, his jaw muscles, and his eye coordination. They will come back on the 28th to make some goals for him and for me, things to work on with him everyday. I'm pretty excited about being a part of their group. Also there are support groups that they have too and I am exited to meet other moms that have gone through or are going through similar things.

We go to our pediatrician again tomorrow to see what Max weighs. I'm hoping close to 9 lbs! He seems like he is bigger and gaining weight! So I'm praying for it. I'll let you know what happens.

Last night, Maximus found his thumb! Little stinker. It was cute though (pic below) also we heard a cute little laugh last night when I was doing patty cake with him. I tried to get it on video but by the time I got Tony to come record it for me he was done laughing. I did get a few more smiles out of him though. (video).

This is him doing tummy time sucking on his binki sideways and his thumb is in the hole of the binki. 

Me and him hanging out last night watching The Bachelor

"I found my thumb!"

"Yum!"

2 ounces in 2 days!

Maximus gained 2 ounces by Thursday! It wasn't the 4-5 we were hoping for but at least he gained! Our pediatrician didn't send us to the hospital because he felt like we were on the right track. So I was happy about that. He did say however that if he wasn't up to at least 8lbs 11oz (right now he is 8lbs 3oz) then he may have us spend a weekend in the hospital to do some tests. I'm guessing Maximus will be pretty dang close to 8lbs 11oz! He is already getting chubbier! And he guzzles his 2 oz bottle most of the time. I'm still pumping before I feed him on one side, then feeding him the ten minutes on the other, then giving him the fresh pumped milk in the bottle. Then I pump both again after I have finished feeding him! It's quite the process, takes about 30 min during the day and about an hour at night because I have to get him to sleep before I go pump again. And I do it every three hours. It's not bad during the day, but exhausts me at night. It's ok though because I'm doing it for him and I love him so much! I have noticed here and there his fingers or toes get these blister looking things on them, I don't know what they are, or why they come and go. I hope they don't hurt him, he doesn't act like they do but I wonder. His skin is doing really well for the most part. I'm still using the Biafine (very expensive by the way) mostly on his leg and his bum. I need to find a before picture and post a it and a current one of his leg so you can see the difference. It's pretty amazing, the Biafine is gold! Love it! Anyways, my little man is a trooper! He's so chill most of the time, misses his Daddy when he's at work and loves being in Mommy's arms (sometimes I spoil him and hold him all day long!). Here are some photos we took and Tony edited for me! I love them!