We are home!!

We finally made it home today at about 11am. I was so ready to get out of there. Last night I seriously almost packed up and left I was so frustrated with the nurses. EVERY TIME I would get him bundled up and back to sleep, and me back to sleep, someone would come back in, unwrap him and start taking vitals or listen to his lungs. I wouldn't wake up until they started and he made noise because I was so tired. But I would have said something if I had. And before I went to bed I told the nurse I would come get her at 4:30am to do his weight and they could do vitals on him then! She comes in at 3:15. Literally 5 min after I'd gotten back into bed she wheels the scale in. So I sat up and said (as if I'd been asleep), "Is it 4:30? Did I sleep through my alarm?". She said oh yeah we aren't supposed to do this until 4:30 right?

RIGHT!!! Just like I told you at midnight, when I went to bed. Thanks. Ah. I was so frustrated. I'm so glad I caught her before she unbundled him and got him all undressed. I was so ready to see the Dr this morning and do happy to hear him say lets get you home today!

Maximus did lose a little again. I've been hoping he'd have gained with how good he ate yesterday. I was so frustrated cuz I tried so hard to get his weight up. The plan is to go until Thursday and feed him 2 ounces every two hours (even through the night), and then if he doesn't finish his bottle within 20-25 min put the rest in his NG tube. Then we will see him thursday and weigh him and see where he is at. Then depending on where he is at we will see him a week from Thursday and during the week between we will just feed him without putting anything down his NG even if he leaves some in the bottle. We will see how much weight he will gain from that and if it's enough and the Dr and I are comfortable we will remove the NG tube. I'm praying my guts out my little guy will learn how to eat on his own and all of his bottle. Anyways, so that's the plan for the next two weeks.

Today's plan: cleaned up the house a little with my awesome MIL's help. Now, uninterrupted sleep, eat, uninterrupted sleep, eat, play on my iPad my amazing husband bought me! (which I'm currently using to blog, I love it!) Later, maybe the gym to start working off that 10lbs I gained while being in there and the baby fat, dinner and then off to bed as early as 10!

Hanging out on a lazy Sunday

Hopefully today will be the last day at the hospital! Maximus is starting to do so much better! He doesn't sleep much the last few days. Too much going on I guess. But he's happy for the most part. I put him in the bath today and he was going crazy! He loves loves his baths! He was kicking and flailing so much I and the tub was soaked! He ha so much fun. He has also started rubbing his eyes when he's tired. It's so cute. He is laughing quite a bit too. I love it! His coughing isn't gone and he still sounds raspy and wheezy every once and a while, but he is eating great and hopefully we will get rid of his NG tube soon.

Things I've learned/discovered while being here:

- Oreo shakes and cheese sandwiches from Cafe West are going to be the death of me if I don't get out if here! I seriously have gained probably 5-10 lbs! It's horrible.

- If your nursing and stressed, fatigued, or sick (I've been all of the above). Your milk supply disappears. BUT luckily someone threw a bunch of herbs together and called it mothers love and it works great at bringing it back! (warning it tastes nasty! I got the liquid kind because it works faster)

- I've learned how to do the nurses job and had to a few nights here because it's so packed here and they are short staffed.

- I've been told by 3 different nurses that I'm the most organized, clean and competent mom they have ever seen. Thanks! I'll take that compliment!

- I DON'T WANT TO BE BACK AGAIN UNTIL HE HAS SURGERY!!!

- My son is so happy no matter what! He is seriously the best little trooper ever!

Here is a pic of him hanging out with us on the "bed" that I sleep on. Seriously we are crunched! But comfy cuddling together.

PS

I have an interesting poll on the side of the blog... Thanks Aunt Ding Dong for sharing and giving me the idea! Vote which one you would rather be and if you want leave a comment as to why you chose that one!

Would you rather...

1. Be obese and rich, but you can't lose the weight no matter what, you have to stay obese.

or

2. Be skinny and poor, but can't ever do anything to become rich. 

RSV = Restless, SUCKY, Visit to the hospital

Sorry for taking so long on an update. We have been in the hospital since Tuesday night. Maximus was positive for RSV. Last Saturday I notice him and I both getting sick and by Monday night we were both miserable. I thought about waiting until Thursday (yesterday) to take him in since he already had a Dr appointment for his weight check up. But I decided not to chance waiting that long. And I'm glad I went with those motherly instincts. I felt bad calling in to work on Tuesday to tell them that I an Maximus were both sick and I was going to get us both into Dr's. But I am also so glad I did. It was a long day Tuesday. I got him in at 4:30, then we left there and went to get him suctioned for RSV testing but Utah Valley had a 2 hour wait, so we headed to AF where there was no wait time. But first stopped home to hurry and feed him and me. We got there around 6:30pm and got the awful test done. I hate it. Then after we went to the Insta Care to see what I had at about 7:30pm. We were there an hour for them to tell me I just had a viral infection (which later being here in the hospital I was told I have an adult form of RSV - just a really bad cold, I've almost lost my voice a few times and can't sleep well with the cough). We got home around 8:45pm, and at 10pm I called Maximus's Dr to see if using a humidifier and putting one on his oxygen would be good. He told me I could and that he would call and get the results of the test and call me back. It wasn't 2 min later he called back with the dreaded news. Positive for RSV. He said it was up to us whether we wanted to try to kick it at home, but most likely he would get really bad and end up in the hospital anyways. We decided it would be better not to prolong it. So we headed to the hospital at about 10:30pm. As much as I hate being here, I'm glad we are because he has been miserable and it's so much easier not to have to bring him here 4-5 times a day to get suctioned. Yes, he has to go through that miserable suction at least 4-5 times if not more, and they come in before every feeding and suck his nose out too. It's not fun and I hate seeing him in pain. I can only imagine what that feels like and I wish I could take his place. It wears the poor little guy out and he sleeps for hours after. We thought he would be getting better by now and thought we were on the upside of it, but this morning I was told that his lungs sound a little more wheezy and crackly so we are probably only on day 4 or 5 of the 7 - 10. So it looks like we will be here until Monday or Tuesday unless we get a miracle (even though I've had plenty of those lately, the biggest being my little fighter).

At his Dr appointment on Tuesday he had lost 2.5 oz and then from Wednesday to Thursday's weighing he lost another 2.5 oz. So we were worried because he was back down to his 9 lbs 1 oz. But today he was up 8 oz! I was so happy! It's helping that we have a continuous feed on him through his feeding tube. So he is getting 20ml every hour and then I am feeding him 20-30ml every 2 hours. So he is getting 60-70ml every 2 hours, which is about 2.25 oz. I'm hoping he will start taking 30ml every bottle so we can reduce the feeding tube and get rid of it. But I guess if it's helping I just have to deal with it.

 Maximus has been such a trooper (not that he hasn't been his whole 2.5 months of life), even though he is miserable for the most part he is happy. He has his moments but I'm so glad he can smile and play and be happy too. It makes it better for me and Tony and everyone here.  I have been sick too, and stressed and so my milk supply is about gone. I'm trying to get it back up by keeping hydrated, sleeping when I can during the day when I have help, and pumping every 2-3 hours. Today is the first day I am feeling somewhat better. I'm not coughing up my lungs every 5 min and my throat isn't hurting as bad.

While being here, I have learned a lot. Mostly that it could be worse. I have met and seen a few kids and parents who have a bigger challenge than I. And it makes me feel blessed. I pray for them every night and I pray for the kind of strength they have. One of our nurses, told us that he had twin boys at home, 14 years old with Cerebral Palsy. One of them can't walk and is in a wheel chair, the other can walk but very stiffly. Both of them are blind, in diapers and have feeding tubes. They were born at 28 weeks, and just struggled to get out via C-section. They were both so tiny and just didn't have the development they needed. I was overwhelmed. I felt so bad for him, but he was so positive and you could just feel the love he had for his two hero's. He told us to not be discouraged from having more kids. Him and his wife waited too long, but they do have a 3 year old girl too. Also down the hall from us is a 7 year old boy, also with Cerebral Palsy and something else. I can't remember. But he is in a wheel chair, has a tracheotomy and feeding tube. I'm not sure why he is in here but he is hooked up to all sorts of things, it makes me think twice about complaint about the 6 cords attached to my son (nose cannula for oxygen, feeding tube, 3 chest monitors, and oxygen monitor). I and Tony have almost considered careers in nursing. We both know how to do pretty much everything the nurses can do. It's so packed here, every room is full including the rooms that double. And they are under staffed, so it makes it difficult for them to keep up, so therefore we do a lot of the monitoring and changing of stickers and tubes and we know how to run the monitor screen in the room too.

Sorry this update has been so long, hope everyone is doing well! We can have visitors this time all you need is the code and room number so shoot me a text, email, Facebook message or whatever if you'd like to come by! Here are a few photos while being here. I have some videos but the Internet is so slow here it won't let me upload them so I'll have to do it later.

Monitor

Feeding machine (Kangaroo Pump)

Maximus currently 

My bed. :)

A few nights ago...

 

Shriners

Monday we went to Shriners hospital to see two Surgeons for Maximus's foot and hand. I left there feeling blessed. Some of the children there are, I don't know what the right word is, but worse off than Maximus. I feel for them and their parents or care givers. After our appointments (which I'll get to), we went to the cafeteria to eat something and this mom came up to me and asked if Maximus was going to have surgery or  why he was being seen. I told her a little bit about our son and she told me that her son was diagnosed with cancer at 2 months. He had a tumor between his heart and lungs. While removing it, his spine was touched or something and he will never walk. They found Shriners hospital after being to 7 different ones in the country and she told me it was the best hands down. They come to Shriners for spinal transfusion every 5-6 months from San Diego and stay for a period of like 2 weeks. I was moved by her story and she told me the best advise she received was to take one day at a time. Don't think too much about the future because it will drive you insane. I totally agree with her even though its hard sometimes. I felt overwhelmed with knowing it could be worse and I am grateful for my little miracle. I will also pray for those sweet angels at Shriners. I hope someday I can help or be involved in seeing those angels happy or do something to help. It's not a sad place by any means! Those kids there of all sorts were happy no matter their circumstance.

As far as the appointment went it was long. But the two Dr's were awesome! We are impressed so far. The hand surgeon said the separation of the fingers should be no problem and they would do it around 9-10 months of age. She wants to do it so he can learn to pick things up appropriately and stuff like that. The foot surgeon said there are a couple different options depending on his growth and development. We could straighten the toe, but it may be too long once we do that and it may not work to stretch out the veins and tendons. They would have to see how the blood flow would be after surgery. Or they could just shorten the toe, or they could cut the toe off completely. So we go back in 6 months to see about surgery and what they will most likely do and they will probably do the surgeries together so he doesn't have to be put under twice. Which makes me a little more comfortable. I'm really nervous about it. Anyways, so thats it for Shriners.

We went to the pediatrician this morning for a weight check up. Maximus gained 5 ounces since last Friday. He weighed 9 lbs 3 oz when we left the hospital. He weighed 9 lbs 8 oz this morning at the Dr. Not the best news, but at least he is gaining. I basically told the Dr that I think he is just going to be small and that I think its part of the syndrome. He is just worried about brain development and getting enough nutrition to the brain. Which is concerning but I think he is getting enough. He is a smart boy, he knows the difference between binki's now. He will only take a certain one! I don't know why. And its not the one he came home with. It's totally shaped different and everything. As far as development the only thing he is slow on really is picking up his head while doing tummy time, and tracking things with his eyes. But we are not sure what his vision is quite yet and won't know until June. I don't think he is too far behind either but I don't know.

Anyways, I am doing pretty good. A little depressed about going back to work on Monday! But shouldn't be long until I am home. Next week we have KOTM (Kids on the Move) coming twice and then another weight follow up with the pediatrician. I'll keep everyone posted. In the meantime, enjoy this cute video of Maximus Laughing!

First walk

It was such a nice day out we decided to take Maximus for a walk in the stroller. He fell right to sleep! We just went around the block but it was so nice and really fun.

We have our evaluation at Shriners hospital tomorrow at 10:30. I am anxious and excited. I am interested to find out what they can and will do for his foot and hand.

As far as eating goes. I'm just going with my instinct. I think he's doing good for the most part, we had a nurse come by to teach us how to run the feeding pump yesterday. But I haven't used it. I usually just push whatever is left over (if it's enough to worry about, usually 20 ml or higher) by myself. Its never really a lot so I don't think using the pump is worth it because he eats most of his bottle. I'm hoping on Thursday when we go see the pediatrician I can talk him into getting rid of the feeding tube. I really don't think we need it. I think it's a matter of Maximus might just be on the smaller side. Maybe he will bulk up later, maybe not. But I'll tell you one thing he's not starving. And he IS gaining. I hope he's 10 lbs when we go Thursday. But I think that's hopeful wishing. I feel like as long as he stays on his curve and doesn't go off or under then he's fine. Am I wrong for thinking that? Am I wrong for going with my gut feeling? I hope not, I wouldn't want to do anything to jeopardize his growth or development. But with this syndrome he might just be a little guy. I am feeding him at least 70 ml every 3-4 hours and he eats most of it. I guess we'll see where he's at Thursday and what the doc says. I'm hopeful for good news. Thanks for all those still praying. I think I'll try to make it to the temple this week too. I need it!

My little guy is currently sleeping in my arms while I rock him. He's so cute! I just love him.

We're home!

We are finally home after 4 looooong days at the pediatric unit in the hospital. Maximus did not do well last night. Yesterday I only had to use the NG tube once! I was so happy that he was making progress and was hoping to not have to go home on it. The Dr was hopeful too, but then last night he just wouldn't eat again. I don't know what it was. He has been really stuffy and snotty too so I have been worried about him possibly being sick. So the Dr ordered an RSV test, we just got those results and they are negative! YAY! Glad about that. He has gained 3 ounces since being in the hospital. So he is on track and doing good at gaining weight, which is what we want, but we also want him eating without the feeding tube. We got the results back from my breast milk and the calories are above average at 32 cal. so the Dr said I didn't need supplement the formula anymore just keep using the banana's and up his intake to 75 ml every 3 hours. Other tests for influenza and other flu's came back negative as well. I'm happy he is not sick. They did send it in for a third testing to make sure again. Today Maximus didn't do so well. I have been worried about him a lot. He's just not himself, sleeps a lot. And he has been getting really upset crying a ton. Like he is in pain but we just don't know whats wrong. I hope its just a phase or that he has been stressed and sick of being poked and bugged all day and night.

I've also decided to go with my mom instinct. I don't think being on this strict 3 hour feedings and 75 ml's is the best thing. I also don't want to give up breast feeding completely so I am still going to do that a couple times a day, bottle feed him at least the 70 and still keep as close to 3 hours as I can. I think as long as he is gaining weight and staying on his curve he will be fine. I hope anyways.

Also we got the results back from the DNA genetic testing and it is for sure positive for Goltz Syndrome. So that makes him the 5th reported male world wide. Kinda crazy. I'm happy to have the results and that we don't have to do a skin biopsy on him.

Anyways, it's late and i'm so exhausted (I wish I would have taken a picture of what I had to sleep on for 4 nights!) so thats all I have for now. Gotta go try and feed the little man and then try and catch some Z's before the next feeding. Thank you so much to all of those who keep us and Maximus in their thoughts and prayers, they are greatly needed and I am forever grateful for you. Lets just pray he gains enough weight by Thursday next week so we can get this feeding tube out! Please!

P.S.
Can I just say that I have the bravest little guy in the world? I might be biased but seriously? I could not go through what he's been through! But I would in a heart beat if I could take his place. He's so tough. I love him so much.

Sleeping soundly in my hospital crib

Sleeping again in grandma's arms

Going home! Yay!

Home sleeping on mom and dad's bed, SO HAPPY!