Welcome to Holland

Ok ok... I'm sorry! I'm a terrible blogger! I know that! But we've been super busy around here! Lots going on! I'll get to that in a sec.

First, I want to share a essay I found on another blog of a mom with an omphalocele baby. It explains what its like having a special baby. I've never been able to explain what it's like to anyone who hasn't been through it... but now I can (even if I have to use someone else's words).

Welcome to Holland

by

Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around...and you begin to notice that Holland has windmills...and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss.

But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.

I love my Holland. My Holland is more beautiful that I could have ever imagined! Sure, I've heard Italy is nice. But I would never trade this trip to Holland for a trip to Italy. Forget it! I'm sure I'll make it to Italy some day, but right now, Holland is exactly where I'm supposed to be! And I thank God every single day for landing me in Holland.


GAGE
Okay okay now what everyone wants to hear. How Gage is doing! He is doing so good and making amazing progress!

For Christmas he got his first tooth! And he already got his second one... both his bottom teeth. His teething phase is not so fun- he doesn't eat (which I hate cuz he can't afford to not eat good) and he doesn't sleep and it makes for a grumpy baby and a frazzled mom!

And for New Years he figured out how to crawl! And now he's crawling all over the place! Everyday we figure out one more way to baby proof the house as he gets into more and more things. He's not super fast yet but he is super determined! I think he just loves being able to follow me around and move to get things he wants and slip and slide all over our floors. The only carpet we have is in the bedrooms and the rest is linolium so when he has pants or socks on its super slippery! But he does cheat a lot... he straightens one of his legs or opens his knees nice and wide so that he can create a larger base and not have to use his core muscles as much to stabilize himself. It looks kinda cute and silly... but he's not supposed to do it! And he's trying to pull himself up to stand. He loves to stand up! You can tell he just thinks he's so big!

Here's video of when he was first figuring out how to crawl...





He is totally off his thickened milk! So now its just breastmilk (yes I'm STILL pumping) with a few teaspoons of formula to give him those extra calories. He eats about every 4 hours and then wakes up once in the middle of the night to eat. On a good feed he eats anywhere from 5-6oz or so, on a bad feed sometimes 3oz. He's all over the place. But for his 9 month appointment he actually made it back on the growth charts with his weight! A whopping 14lb 15oz... 2% baby! He still isn't doing well with actual food. He doesn't like to eat baby food or rice cereal or anything like that. We have to play games when we spoon feed him or let him just play in his food to get him used to having in near his mouth and on his face and everything. We try to do it a few times a day, but even so, by the end of the day, he has really only swallowed maybe 2 teaspoons tops. We have an appointment with speech therapy next week to see what else we can do to help him start to eat regular food.

Here's video of him playing in sweet potatoes (not eating them of course!)




Thats all I can think of for now (plus he just woke up from his nap!). I'll try to do better than an update every 3 months! Thanks for all your continued prayers and support! It helps more than I have words to describe!

Surgery follow up

So things are getting better. We're home! As soon as we got home he instantly started acting more like his happy little self. In the hospital he barely smiled or talked, but as soon as we put him on the couch at home he started cooing and laughing. And he's eating pretty good now. Not up to his normal but actually pretty close. I thought it was gonna take a lot longer and that we were gonna have to take it super slow for him to adjust. But he's doing about 4 ounces every 3 hours (yeah... we're back to the every 3 hour schedule again... like he's a newborn again... for the third time). It's exhausting... again. But he's making progress. And I think his pain is ok. Some days I think he's more uncomfortable than others, but we just have him on tylenol during the day and we will give him a little dose of vicodin at night cuz he's more uncomfortable at night. That way he can sleep better instead of waking up every hour or so in pain (which is what he was doing)


It's so crazy to see him with a flat belly! When I picture him in my head he still looks like he has a tennis ball in his onsie, but when I change his diaper and pull his onsie up I'm still shocked to see it flat. Oh and he has a belly button now! I don't really know what it looks like cuz he still has the steri strips covering it. But we'll see!

He's not supposed to do tummy time right now, but he's turning from side to side really good! And lifting his legs up and kicking and squirming like he used to. He's even sitting up and leaning forward really good! It kinda looks like he has more core strength now that his abs are where they should be. So hopefully he will be able to stay on track and not get too weak without being on his tummy.

We are so blessed that he is doing so good and that everything went well and he's moving right along. I know that he is doing so well because everyone is praying for him and because God is helping him every minute of every day!

Surgery

so surgery went well! they were able to push everything in & make his belly flat! he looks incredible! but he wasnt doing so good breathing after surgery with all that pressure in his belly (its basically like hes wearing a super tight corsset!) so they kept the breathing tube in, which was one of my biggest fears of him having the surgery- i hate to see him intubated & he hates being intubated! so that made for a really bad night! they wanted to keep him pretty sedated so that he wouldnt fight the vent too much but he kept waking up & thrashing around. he needed a lot of meds to keep him sedated- hes built up quite the tolerance to these meds from being on them so long in the nicu. so i got pretty much zero sleep. & the connectors on his iv kept coming apart so we would check him after an hour or more & his bed would be wet- meaning his pain medication (fentanyl drip) would just be going onto his sheets. so he would miss out on all that medication & wake up too often. & then he had issues peeing.he was only peeing tiny tiny amounts so they gave him a bolus of iv fluids to hydrate him more but he would still only pee a little. so now hes all swollen cuz he basically retained all that fluid in his tissues. & then of course he was stingy with his blood just like he was in the nicu so every time they needed to draw blood from him it was a big ordeal- it would take multiple pokes just to get the tiniest amount of blood. but we finally made it through the night. & through out the night they were turning down the breathing tube so he was slowly doing more breathing on his own. so ithis morning they finally took the breathing tube out... & it couldnt have come soon enough! & then he had his poor little raspy voice that just breaks your heart! that really is the saddest cry you could ever hear! but its getting better now. now he just sounds like he has a wicked sore throat. & then we finally got to start feeding him this afternoon & hes doing pfetty good so far!they just want to do small amounts more frequently so his belly doesnt get too full & distended. so we will have to go very slow increasing the amount until he can eat like normal. & so far he doesnt look like hes in too much pain. hes awake & squirming around almost like his norml self. we gave him tylenol once & that pretty much looks like it did the trick. so hopefully we wont have to use too much heavy pain meds cuz they constipate you & thats the last thing his poor little guts need. so we will prolly be here a few more days so they can really make sure everything is good with him. we really appreciate all the thoughts & prayers coming our way! they are helping tremendously! ill try to put up pictures when i get a computer (right now im on my phone). thanks again for all the love & support we feel from everyone!

Just some cute pix...

So not a whole lot has changed since the last post. He's eating better- taking the bottle more willingly and looking more comfortable with it- almost like he likes eating! Sometimes... not all the time. He usually drinks anywhere from 3 and a half ounces to almost 6 ounces (he's all over the place). He kinda just needs to strengthen the muscles in his mouth. He has a weak suck because he couldn't eat the first couple weeks after he was born. And we are starting to introduce food, but he hates it. He spits it right out and sometimes gaggs and chokes on it.

We take him to the pediatrician every week and weigh him. He's still not gaining very much weight so putting his feeding tube back in is still an option. It's like every time we go I almost have a panic attack because I'm afraid they are gonna say we have to put it back in. It scares me because I don't want it back!

And he is doing more tummy time, but it's still not his favorite thing. He's rolling from his tummy to back pretty good too! And sitting up. He still needs help and falls over a lot. He still doesn't have as strong of muscles as the average 6 month old. He has to do his exercises everyday. And he has a physical therapist that comes out to see him.

He is having his big surgery this Friday (Oct 7th). The surgeon is basically gonna push everything in and bring his abs together, and also fix his scrotal hernias. And she said he should only be in the hospital about 4 days. Hopefully! So, as always, keep us in your prayers! Your prayers continue to help him every day!!!

Tube Holiday Update

Thanks for all the prayers! They are helping a ton! He's doing way better than I expected!! He's drinking around 3-4 oz every 3-4 hours. By the end of the day he usually drinks at least 80% of what he is supposed to. & he's getting kinda fussy when he's hungry- giving us some hunger cues he hardly ever did before. & he hardly ever pukes anymore! & he doesn't choke and gag like he used to! I honestly think the tube irritated him more than we thought! We thought he was having all these issues because of his omphalocele but many of them have cleared up since the tube is out!! He's almost like a normal baby! Cordless and everything! Now we just have to work on increasing the volume. We weighed him and in 1 week he only gained 1 ounce... which is not very good at all considering he is only in the 2nd percentile in weight right now. But I guess on the positive side he didn't loose weight which is what I was afraid he would do. So we are just gonna keep it out and see how he does. We have an appointment this Wednesday to start feeding therapy so hopefully they will be able to give us some exercises and hints what we can do to help him eat better and eat more. Maybe then we can get rid of the bottle and the thickened milk and start breastfeeding. Maybe someday!

Tube Holiday

This is Gage's stomach. Yes... its literally upside down! The doctor drew this after his ultrasound. The top half is normal. Food goes down the throat into the stomach and out the bottom. Well in Gage's case, food goes down his throat into his stomach and then has to go out the top- like it has to fight gravity and get pushed upwards to leave his stomach. Crazy huh!





Yes. We're still alive. Yeah I know... its been a while! This kid keeps me crazy busy.

We finally got to a better schedule with feedings every 4 hours. We do almost 5 oz every 4 hours except we skip the one in the middle of the night so he can get lots of sleep at night and get on a better sleep schedule. And he totally has. And life is so much better when you kinda have your day mapped out of when he eats, then play time, and when he usually naps. Its fantastic!

And just when we were really getting used to that great schedule everything has to change. We told the surgeon that on average he will nipple around 2 oz from the bottle and then we will gavage the rest through the feeding tube. But that he has kinda hit a plateau with his progress. So she suggested a tube holiday. Take the feeding tube out and see how he does. Then he will control when he eats and how much and might just feel better without the tube. She said the tube can kinda give him like a chronic sore throat just from being there and moving and rubbing all around. So the plan was to take it out Saturday night. That way Trev could be at home all day with him while I'm at work, then we could give him the full 5 oz then put him down for bed, he could sleep through the night, and then both Trev and I could be home the next few days to help. Cuz then Gage is gonna basically be starting out like an infant. A couple ounces every couple hours.

Well the one thing we forgot is that Gage calls the shots around here. He just decided to puke up his NG tube Friday night. So... change of plans. We figured we would just keep it out and start the tube holiday early. But of course Trev had to be working all Friday night. So I'm kinda a zombie right now... living on an hour of sleep here and there. Luckily my in-laws came down for the weekend and my mother-in-law was able to help me out a lot (she's fantastic!!!). And so far Gage is doing ok. He will cry when he is hungry (which is usually every 2 and a half hours) and then nipple around 2 or 3 ounces. So we will give him like 2 or 3 days without the tube so as long as everything continues to go well, we will be able to keep the tube out. I'm trying not to get my hopes up too high, just in case we have to put the tube back in. But its hard... I'm like giddy with excitement at the progress he's making. And we're gonna be starting feeding therapy where they work with him and do different oral exercises and things to help improve his feeding and swallowing.

As far as his belly goes, its pretty much all healed over! We basically put a bandaid on it just cuz that skin is so fragile. And when we saw the surgeon this week she said her office would be calling us to set up surgery for the beginning of October. The surgery would basically be to push everything in so his abdomen is flat, bring his abdominal muscles together, and fix his hernias in his scrotum. She said she isn't really gonna mess too much with all the different organs in his belly. They are all jumbled together... like I'm talking his stomach is literally upside down and nothing is where it's supposed to be (like gallbladder, appendix, spleen, pancreas, etc.). It was hilarious watching the doctor do the ultrasound. It took her like 5 minutes to find his gallbladder. She just kept saying "I know he's got a gallbladder; it's gotta be around here somewhere."

And he is doing so much better developmentally. Like he is a little behind cuz he's got generalized weakness but otherwise pretty on track. He's starting to laugh and be fun and interactive, reaching for things and playing with his hands and everything. He can hold his head up all by himself when he's sitting up, but we have to help hold his body. He actually turned over from his belly to his back (both sides) for the first time yesterday! And he doesn't really like tummy time very much but he can hold his head up for about a minute before he starts fussing and crying.

So things are moving along. Hopefully they keep moving (in the right direction!). So keep praying real hard for us! (yes... I'm soliciting prayers!) We are so grateful for all the prayers already coming our way!! We know they help!!!

Gage is finally free of the wound vac. Yaaaay!!!!

It's been a while... but we made it home!

Last fast Sunday we took Gage to church for the first time and gave him his baby blessing. it was such a spiritual moment when all the priesthood holders stood in that circle holding our son what we feel to be a blessing of a lifetime. It was amazing.

I just wanted to thank all of our friends and family that were here that day to help out and participate on Gage's special day. We love you all.

Gage finally at home sitting on the couch


Here is Gage in his car seat getting ready to leave the hospital and go Home!!!



OK so I know its been forever since I posted anything. Sorry. But we're super busy at home. Gage got discharged 5/17 as planned, and we have barely had a second to spare since! He has a rigorous schedule that involves little down time. He has to eat every 3 hours. So here's how each 3 hour block goes: the first hour is spent giving him the bottle and then sending the rest of the feed down the tube in his nose. The second hour I pump and get everything ready for the next feeding. And if everything goes totally totally perfect I might have 1 hour left to get stuff done, and he has a lot that needs to get done! He has plenty of appointments we have to run all over town for, which then makes it hard because the whole feeding/pumping routine has to be done on the go. So its a great big ordeal when we leave the house. It's like we're going on vacation with how many bags we have to bring!

But we are down one bag. His wound vac is gone!! The part that doesn't have skin is only about 2x2 inches! So now he has just a little gauze dressing (its a silvadene wet to dry dressing- for anyone who knows what that is) that we change once or twice a day. His belly looks amazing! And now I feel like we have a cordless baby! He's totally mobile! So now that the wound vac is gone he can do tummy time and a bath like a normal baby!

He hasn't made a whole lot of progress on his feedings. Still only drinking on average about 1oz so the other 2 ounces have to go through his tube. And he has really bad reflux, like I'm talking bad. So that makes it hard. They put me on a lactose/soy free diet to see if that would help (and cuz they found a little blood in his poop) and it has, a lot! And pretty much everything has soy in it as some kind of preservative. So pretty much I eat chicken, fruits, and veggies. And my mom and Trev's mom are the best mom's ever so they each found bread recipes that don't have milk and made me homemade breads that are so stinkin good!

We're almost there!

So there's talk of sending Gage home soon! They're trying for Monday or Tuesday!! All he's got going on right now is the wound vac (which he will have for a few months) and the feeding tube in his nose. He is doing better taking a bottle now because they are thickening his milk. They figured out that he freaks out when he gets milk in his mouth because he can't quite control it and so it scares him. So they thicken it a little so when he gets it in his mouth he can move it around and control it better. He looks so much more comfortable eating now! Like he actually enjoys it! It pretty much puts him right to sleep. He is drinking around 20mL each time, which isn't nearly as much as he should, so the rest we put down his feeding tube in his nose. And that's how its gonna be at home. They are also putting a supplement in the breast milk so that he gets more calories and fat and protein and everything. So we're getting close!

Oh and I got a nice little surprise on Mother's Day. Yeah... nice... right. It's called- Surprise! You have mastitis! I didn't feel that great all day and had the most terrible headache I've ever had. And a little spot on my boob was kinda firm and tender. But then I took my temp and it was 102.7. Yeah... nice. So left the hospital and went back to the hotel and had pretty much the worst night ever. Chills and sweats and nauseous and that wicked headache. But I'm feeling better now that the antibiotics kicked in. But the nurse practitioner here said I have a higher chance of getting mastitis frequently cuz I'm just pumping; cuz it's not a natural way to empty your milk so you get more complications more often. Yeah... nice.

But in a few days it won't matter (nothing will matter!) cuz we will be at home with our little guy (I hope)!

Can you see whats missing?

Gage is moving up in the world! He graduated from his oxygen! His breathing is doing tons better (still just a little fast but MUCH slower than before) and he is maintaining good oxygenation... so they took off the oxygen and he is doing GREAT! I'm so excited because they thought he was gonna have to go home on oxygen... and he hated that stupid tube stuck to his cheeks and in his nose.

And he is at his goal feed, meaning he is tolerating the entire amount of milk he should be taking for his size. So they are gonna take out his PICC (which is his IV in his arm) today! He is doing ok on a bottle so far. He only drinks small amounts (about 10 or 15mL tops, aka a tablespoon) from the bottle. But sometimes he just can't quite figure it out so we have to go back to using the pacifier with a syringe of milk so we can squirt tiny amounts in his mouth while he sucks the pacifier. So they can take the feeding tube out of his nose once he can drink the whole thing through the bottle. Although he's very helpful with pulling it out right now. He gets his little fingers around the tube and gives one big pull and rips it out every couple days. He hates the tube but I think he hates getting it shoved back in every time even more.

And we tried breastfeeding yesterday! He only did about 5 minutes but it was a good attempt. The doctors goals are to get him home on a bottle rather than breastfeeding, cuz that's easier for him and they can measure the amount so they know how much he needs to gain weight. But since my goal is to breastfeed and I dont want to have to take a breast pump with me everywhere I go, we are slowly incorporating breastfeeding- but I'm talking like once a day. But at the rate he is going, I won't be surprised if it takes him a while, like a few months from now.

AND he is totally off his pain meds! He's such a big boy! He is doing so well! I can't believe he is almost a month old too! That's so crazy!

A few little changes

So there's not really a whole lot that is gonna change with Gage from day to day. It's pretty much a long, slow process where things will change little by little. They took him off his pain pump (fentanyl) but still have to give him small amounts of morphine every 3 hours so he doesn't go through withdrawals. He is doing good so far, but I wouldn't be surprised if he has a tough night; it seems like nights are a little harder on him. Idk if it's just that he is more cranky at night or what; the nurse yesterday said she thinks its just that he doesn't have his mom there to console him so its harder for him to calm down and get good sleep. I wish I could be there all the time. I hate thinking that when he wakes up he has to look at someone else's face, someone else he doesn't know. But I can't be there all the time. I have to take care of myself, as selfish as it makes me feel. I rationalize that if I don't take care of myself I won't be able to take care of him. Then I don't feel like a terrible mother.

Oh and he is taking his pacifier better! That feels like such a big step! The speech therapist came and saw him and said she doesn't recommend giving him a bottle right now. She said he is breathing so fast and his mouth is not coordinated enough to handle eating. So we use the pacifier to teach him what to do. We try to offer him the pacifier when he is awake, but only once he starts rooting around for it- turning towards it and opening up his mouth like he wants it. Because so far he hasn't wanted anything in his mouth- because he has learned that so far anything going into his mouth is going to be bad or negative- cuz all he's had in his mouth is bad uncomfortable tubes and the suction catheter and things like that. So once he realizes the pacifier is a good thing, then we put a few little drops in his mouth so he learns to suck, swallow, breathe. And so far so good!

Then the physical therapist came and gave us a few things to do with him: basically some range of motion things for his arms, legs, and neck. She said his muscles are really tight and he is pretty weak all over because he was sedated for so long right when he was first born.

And then they changed the wound vac today and he did awesome! Which is such a relief because I thought it was going to hurt him and be uncomfortable but he looks like he does great with it! He holds pretty still and this time just sucked on his pacifier the whole time! He's such a big boy!!

In Mom's & Dad's arms... FINALLY!

We finally got to hold him!! After 2 VERY long weeks!! I held him this past Friday and Trev held him Saturday and now we both hold him everyday as long as we each can! It feels so amazing to hold him in our arms! He gets so cozy all warm and snuggled next to us. We are starting to give him a bottle but he doesn't eat much from it. He is breathing so fast that it's hard for him to take drinks in between breaths, plus it takes so much of his energy just to breathe that he doesn't have a whole lot left to feed. And he doesn't quite know how to do it either. He just holds it his mouth with a look like- What do you want me to do with this? And when he gets milk in his mouth he's not quite sure what to do with it either. He kinda lost that sucking reflex and will have to catch up. Hopefully he will catch on soon!

So now the big goals are to get him to start taking a bottle better and to wean him from his pain pump. He is getting a continuous dose of pain medication (fentanyl) but they have to decrease it very slowly or he will go through withdrawals. He was kinda fussy all afternoon and I wonder if he is starting to withdrawal. It is hard to see him go through such hard things. Very hard. Especially cuz there's nothing we can do to help him with it. It makes me cry just thinking about all the tough things he's going through when he is so tiny and fragile. I don't want him to be in pain or be uncomfortable or feel alone or lost. I hate leaving his side. I just wish I could take it all away... give it to me cuz I know I can handle it. That's what I pray for anyway. So please keep him in your prayers too! And thanks for all your love and support!

So here's his newest covering: the wound vac I mentioned earlier. And they put a little tiny tube down his nose into his stomach that they are feeding him through. The nurse drew up my milk and then let me put it into his tube! I got to feed him lunch!!! I mean it was only a tiny tiny bit (5mL). But he is doing good with it so far!! So by tomorrow he will prolly have the breathing tube out so I can hold him, we can give him a bath, and maybe give him a bottle so he can really start eating! Plus then we will be able to see his handsome little face more! YAY!!!

Moving along!

Yay! I'm so excited! He's doing so good after surgery yesterday! Like SO good!! They covered his guts with a wound vac, which basically means they covered his guts with a black sponge, cover that with saran wrap looking dressings, and turn on a pump so that it constantly has a little bit of suction, which pulls away any moisture from the sac and makes skin start to grow over the sac. And he will have that at home for about 2 months. So that means he is gonna look like he has a big pregnant belly until they push everything in (which will be in about 6 months).

So the plan for today is to start him feeding!! They will put a tube down his nose into his stomach that they will use to feed him. And then once they pull the tube out thats in his lungs they will be able to use a bottle (which will hopefully be tomorrow!). I'm guessing they will use the milk I pumped with mixed with a fortifier to give him a little extra nutrients that he needs. Oh and after they pull the tube out of his lungs I will FINALLY be able to hold him and hear him cry. I'm SO stinkin excited for that!!!!

I'll try and add a picture a little later today when he wakes up! I'm just so excited I can't stop smiling cuz things are moving along!!!

A little more info...

So Gage is doing pretty good. He had a small procedure today where the surgeon just kinda wrapped his dressing a little tighter to put a little more in. The surgeries get harder and harder on his little body as he tries to accommodate and make room for more of his guts being inside. Every surgery puts more pressure on his little lungs and heart, so sometimes it’s especially hard for his body to recover. But he is making progress! I would say his guts are about half as small as they were to start with! So keep praying that things will go smoothly and he will continue to do well! Trev and I keep saying he takes two steps forward and one step back because it seems like with each surgery or reduction he has some small set back, whether it be his heart rate is too high, there’s too much stress on his lungs, or now he has a hernia he will have to have surgery on in a few months. But he is a strong little guy and just keeps working through his new little problems! The surgeon said maybe by early next week they will put everything in and close up his belly!

As for Trev and I, we are doing good. Some days are harder than others. You can usually tell which days Gage had surgery because by the end of the day, I have usually cried off all my makeup. It’s hard seeing his tiny body go through so much. And it’s hard because there’s nothing I can do about it! I can’t hold him or feed him or anything my motherly instinct tells me to do. I can just stroke his little head and talk to him. That’s it. We’re staying at the Marriott right next to the hospital. The hospital has a deal with the hotel and they are giving us an UNBELIEVABLE deal! The hospital also provides nursing NICU mothers (and fathers!) meals while they are here. We are so grateful we are able to utilize such great resources!!! It’s amazing how much support we receive from our families, friends, and others! We are truly blessed! Thank you all for your love, support, and prayers! We love you!!!