Bye Bye Mimi, I'm Going To Miss You

Robbie had to say goodbye to his Mimi today as she headed back to New Jersey. She had been able to be here for the past two weeks and was there for anything that we needed. She will be sorely missed, but she taught us so much and was able to bond with Robbie. HURRY BACK MIMI, WE LOVE YOU!!!!

BATH TIME

Car Rides

Like most little ones, Robbie loves going on car rides. He is asleep in about 2 minutes from the time he is buckled in the seat. He has enjoyed being home the last few days and the best is that Kernel (our 95 pound Golden Retriever) has really taken up the duty as his watch dog. He will sit right at your feet when you are holding Robbie or when he's getting fed. For anyone that knows Kernel, that is a complete 180 from 2 weeks ago. He still has his excited moments, but for the most part he knows that he is there to watch over is little bubba.

Again, thank you for all the support and encouragement, it really helps us get through these times.

Robbie Loves Being Home

Robbie had a good first night in his own bed and let Mom and Dad sleep a little more than the night before. He had to be woken up to eat, which was a first for him, and very nice for us. The dogs didn't quite know what the heck was going on and what that noise was when he was crying, but they are starting to realize what is going on and getting some really good sniffs of the little guy.

It felt so good to be in our own house last night and to have Robbie where he belongs. We have been finding out a lot more about bladder exstrophy and sent some pictures of his bladder to the leader in this field at Johns Hopkins, Dr. Gearhart. He said that he has a "Nice, nice bladder" and some other things to help take care of it. Dr. Gearhart and Dr. Murphy from Children's Mercy are acquaintances and he said we are in very good hands here at CMH, which made us feel so much better.

We had a blowout last night, one of the worst, but were able to get a new bag on there with the help of a team of people: Saree, Mimi, Gmo, Uncle Rog and myself. If we could only have 10 hands helping everytime we would be just fine.

WEDNESDAY, MAY 26th

WE ARE HOME!!!! He slept the entire car ride home and has been sleepy since we've been here. He should be because he was up all last night and made sure Mom and Dad were right there with him. Oh, the joys of being a parent without 24 hour nursing assistance. We just need to get his sleeping schedule changed because he's been snoozing for about 4 hours right now and that would have been really nice last night.

It felt so good to walk through the door with our little guy. My heart was just racing with excitement. The dogs have no idea what's in store for them and they are really curious what the heck this little thing that makes a lot of noise is.

We are not out of the woods yet by a long stretch, we still have to get the bladder back on the inside, get his pelvis to fuse together and make him a poophole that is not on the side of his body. There is a lot of work to still be done but we will do everything we can to make sure he gets exactly what he needs. We just ask that you keep the prayers coming, because we know that they work (no encephalocele) and that He can perform miracles.

We will continue to update the blog everyday with pictures now instead of surgery updates and would assume that we will be going back to the hospital for more surgeries in the next 3 to 6 months.

We're Coming Home

We got the good news this afternoon that we will be coming home tomorrow afternoon. The neurosurgeon checked him out today and said he is good to go for Wednesday. We have a ton of other appointments in our very near future and another lengthy stay here in Children's Mercy, but right now we are going to start our new family at our house and not Pod D34.

The outpouring of support for us these past 8 days has been overwhelming. We will do whatever we can to pay back this support somehow. We will still need all your thoughts and prayers as we have a big challenge ahead of us in the next year for sure and possibly longer.

We will have all sorts of pictures tomorrow when we get the big guy home.

THANK YOU FROM THE BOTTOM OF OUR HEARTS!!!!

Coming Home???

There is a possibility of us coming home tomorrow if the neurosurgeons think that he is able to be away from the hospital after the surgery yesterday. Nothing is set in stone yet but they told Saree the news this morning so we are very excited.

I am at work today, but any new information that I receive I will let everyone know.

Final Update: Monday, May 24th

Robbie had a pretty good night despite having all those stitches in the back of his head. I counted 18 but he kept squirming so I may be a little off. He is so strong I can't believe it. He can't wait for Uncle Rog to come to see him tomorrow and show off his stitches to him.

Tonight was also the first night that Saree was able to nurse him for an entire meal, no supplemental bottle afterwords. He was starving though, they took him off his TPN (nutrient supplement) so he is really getting an appetite.

He had a little leak in his bag so we changed it out and got him ready for bed. This bag lasted for 30 hours, which makes us feel a little better about his skin getting so irritated. He should have a very restful night and looking forward to a great day tomorrow. Thank you for all the prayers, he definitely felt them through his surgery and recovery. Like we've said before, we are so blessed to have some many unbelievable people in our lives. There is no way we can pay everyone back but we will definitely pay it forward.

Robbie's Favorite Book

Robbie's favorite, and only book, right now is "The Saggy Baggy Elephant". It's a great story for him because of his rolls and his big hands and feet. Saree snapped this picture today before we left for dinner.

Update #3: Monday, May 24th

Saree and I were able to go back to Robbie's pod and feed him a full bottle. After 15 hours of nothing to eat he didn't waste much time taking the bottle down. He is still a little groggy from the surgery so he is going to sleep for quite a while now. Saree is going to come back tonight around 9:00 p.m. and try to feed him. With his sutures it makes it a little awkward to try to position his head without bothering them.

What we thought was going to be a few stitches turned out to be a lot more than we were prepared for. I wouldn't know by looking or have we heard from the surgery team, but it looks like at least 15-20 stitiches. It's going to take awhile for them to heal and he is going to have to have them removed in a few weeks.

He is really resting well now and we hope that he can do that for quite a while.

Update #2: Monday, May 24th

HE'S OUT OF SURGERY!!!! Everything went well the surgeon said, just going to have be on his side for a few days. They made and eliptical-type cut to remove the Encephalocele and things went well. He said there is a small little skull defect but he will be able to play football and other things, we just have to wait a few years. Don't think Mom wants him playing football anyway, we'll work on that though.

We are just waiting on the nurse to take us back up to the NICU and hopefully get to see our little trooper here in the next hour or so. More updates as they come to us.

Update: Monday, May 24th

Well, Robbie's surgery was only delayed 4 hours, not bad around here. The best and worst part is that he is so stable that his surgery isn't an emergency. Needless to say the little guy was starving, his last meal was at 11:45 p.m. Sunday and his surgery started at 1:05 p.m Monday.

They said the surgery should only be about an hour, they just had to figure out how to position him to fix the thing on the head and be cognizant of his bladder, stomas, breathing tubes, etc...

Now we are just waiting for him to come out. We are hoping that it will be soon because he is going to be really hungry when he wakes up. Please just continue the prayers while he is in there and we will update once he is out and we can get to a computer.

Update #3: Sunday, May 23rd

Robbie just wanted to say goodnight to everyone and thank them for all of their thoughts and prayers. He is ready for surgery tomorrow morning, he had a good meal from his Mom, and Dad put him to sleep. We will update the blog as soon as he is out of surgery tomorrow. Good night everyone, we all love you and thank you for keeping us in your thoughts.

Update #2: Sunday, May 23rd

Not much has happened today, which is a good thing. When I got there he had just finished eating a full bottle. It was a little too much for our gassy little guy because he spit up quite a bit, but I guess that's what babies do.

Saree is getting some much needed rest this afternoon, she is such a good Mom. As we were leaving around 3:00 p.m. today he was pretty restless and his bag started to leak. At least this bag made it 21 hours, we feel a lot better about this and our bag setting technique.

We are going to go back over around 8:30 p.m. tonight and Saree will feed him one more time. He gets cut off from food at midnight because of surgery tomorrow. He has been getting a lot of rest and food, building up his strength for tomorrow morning. He is such a tough little guy and is ready for whatever this bladder exstrophy brings him. Wish Mom and Dad were the same way, but his strength gives us a great deal of strength.

We might update one more time tonight, but hopefully we don't, that means he had a very restful evening.

Quick Update: Sunday, May 23rd

Saree is over at CMH right now feeding the little guy. When I checked with his nurse at 4:00 a.m. she said he was having a very restful night and eating like a big boy. The thing that I really liked to hear was that his bag was still on there from about 7:00 p.m. on Saturday night. That will help that skin around the stoma not get as irritated.

I haven't been feeling well the last few days, so I am resting right now at the room and will be heading over to see my guy here soon. I will send more updates today and again, please just send your thoughts and prayers because I know they are working.

Update: Saturday, May 22nd

We had a pretty uneventful day today, other than some leaks from his bag which really is frustrating. A normal bag is supposed to last about 2 days and you just drain it when it gets full. Because of his incision from the first surgery it is not allowing the bag to get a very good stick and then it leaks, which then takes about 30 minutes to get him cleaned up and another bag onto him. Once we get the bag thing down we can get it done a lot quicker but we are very slow right now. Other than that hiccup, we had a really good day.

Saree was able to begin breast feeding which she is a pro at already. She has that motherly touch and you can see Robbie's comfort when he's in her arms. He was finally able to get some really good rest today after those feedings. He slept for some long stretches and really needed them because yesterday was a really busy day for him.

Monday at 8:30 a.m. is still the schedule for his surgery to remove the thing on his head. With that gone we will have one less thing to worry about and hopefully will be heading home pretty soon. There are a couple puppy dogs up there that can't wait to see their little bubba.

Update: Friday, May 21st

First of all we would like to thank everyone for their prayers, kind words and generosity. We always knew we had good people in our lives, we just never knew that we had this many extraordinary people around us.

Today was another pretty good day for Robbie. He was able to up his eating amount from 10 mL to 20 mL of milk per session. One thing that we learned about him today is that when he figures out how to eat, which he is still learning, he can knock back a bottle in no time. He obviously has seen his Dad eat and knows he better get his food while he can. Another thing we learned is that he is a very gassy little guy. He has to burped a couple times each feeding and even just sporadically during the day to relieve some pressure. The last thing we learned today is that even though he has a bag, he can still pass gas just like his uncles.

I was able to go to school today and when I got back to his pod I was greeted by Saree with, "You need to get back here now so you can learn how to change his bag," then with, "how was your day?" He was pretty fussy most of the afternoon but I would be too if I had the following things happening all at once: 1) His diaper was wet, 2) He needed to burp, 3) His IV went bad in his hand, and 4) His bag was seeping everywhere. So, once he got his diaper changed, a big solid, juicy burp and spit up, his IV taken out, and his bag changed he was good to go.

Saree found out late this morning that his next surgery to remove the thing from his head will be Monday morning at 8:30 a.m. We are hoping that this will be the last surgery until we do the bladder and anus surgeries in about 6 months. He deserves a break from all these surgeries.

Again, we can't thank everyone enough for all the support we have gotten this week and just know that we are so grateful. There is no way we will ever be able to repay everyone, but we want you to know that we feel the love everyone is sending our way and we truely appreciate it.

A Few New Pictures

These are from yesterday but my computer was being a pain. He got his head wrap off and the tube out of his nose so everyone can see his face.

Update: Thursday, May 20th

Today was a very good day for Robbie as he was able to recover from his surgery last night and get his first taste of real food.

For the next few days he is on a 3 hour feeding cycle where they are only giving him 10 mL of milk to see how his new Stomas (openings from his intestines) will handle real food. He has a larger stoma exiting the large intestine just above his incision and a smaller one below the insicion. The stomas empty in colostopy bags which he will have to have for about 6 months. Around that 6 month mark he will go back in for another surgery to fix his imperforated anus, basically they will make him a poophole. After that surgery he will still have the colostopy bags for about 3-6 months. After that the hope is that he can digest the food properly and have it exit his body like it should.

The bladder exstrophy is the same as it was prior to the surgery and to fix that he needs to be older and then they can go in and get him fixed up. They usually like them to be about a year old before they operate on that area because of the risk of bladder and urinary infections.
Also today the neurosurgeon came by to update us on why we thought we were coming to Children's Mercy for in the first place, his growth on the head. It went from an Encephalocele, which is really bad news, to just some funky extra skin tissue that should be an easy fix. He will still have to have surgery to repair this area, but it is not affecting his brain at all. He will have this surgery done more than likely on Monday. It is a quick procedure but he will have to be sedated again, which really scares us.

Not that I wasn't a believer before, but there is no doubt in my mind that the POWER OF PRAYER can really change the outcome of things. We found out about the Encephalocele at our 20 week ultrasound and from that day forward have had just our very immediate family and closest friends pray that this would go away. Well, the prayers obviously worked because it is gone now. Don't let anyone ever say that praying doesn't work because it does and we are blessed to have such great people around us to make this come true.

Now all we ask is that you keep the prayers coming that the bladder exstrophy and imperforated anus are the best case scenarios and that our little boy will be perfect in about a year.

I will have more pictures up later tonight for everyone to enjoy. He is quite the ladies man in the NICU because he has all the nurses flirtting with him, and trust me he didn't get any of that from his Dad.

Mom's Pre-Surgery Pep Talk

The following is the video footage of Saree's pre-surgery pep talk to Robbie tonight. Rivals the pep talk in "Any Given Sunday".

Updated Pictures

We have some time waiting for Robbie to recover so I can finally add some pictures for everyone to see. There will be video coming soon too.

HE'S OUT OF SURGERY!!!!!

Robbie just got out of surgery and is back in his pod in the NICU, resting. They were able to finally give us a better idea of what is going on with his bladder, colon, poophole, etc...Dr. Murphy, the surgeon, said that he has Bladder Exstrophy (which you can find info online) and an Imperforated Anus (also can be found online). They put a colostomy bag on him so he can relieve himself whenever he wants to now and in a few days be able to start eating.

Saree has been pumping milk since Monday and is very anxious to begin feeding him the food he deserves. He has been getting his nutrients through a PICC Line (souped up IV) since yesterday and is getting really hungry.

They still have to wait and see about the growth-thing on his head and when they are going to remove that, but it should be a fairly easy surgery and not a big issue.

Thank you for all the prayers and thoughts and please keep them coming because this is going to be quite a process to fix the bladder and anus.

Robbie's 1st Surgery

Robbie just went into his first surgery around 8:30 p.m. tonight. Now that they don't have to worry about any issues with the brain they can move on to the next set of issues. I can't remember the exact terminology, I teach PE, but he was born without a "poophole" and part of his bladder developed outside of his abdomen. In the surgery they are going to try to find out how far away the colon is from where it should come out of his rear end. If they find that it is close to where it needs to be would be great news. This would mean that even though he would have to have a colostomy bag for 6 months or so, they could go in then and fix him up so he works the way he should. They have to wait this long so that he can get stronger and develop. They also don't want any constipation and cause a bladder infection because he is already at risk for bladder infection because of it being on the outside of the body. They are also going to try to fix the bladder and make sure it is in working order. It will still have to be exposed for a few months, again for developmental reasons, but they are making sure that it is working properly.

I know this probably is more confusing than it should be but it is what we know right now and we are far from doctors. We still just ask for as many prayers as possible as this will be the first of his surgeries and will let us know what is in store for his future plans. I will send out updates when he gets out of surgery, which could be anywhere from an hour and half to ?????

Update: Wednesday, May 19th

Well today we had some good news for once in this whole process. The entire reason we started to coming to St. Luke's was because they thought they found an Encephlicil (spelling is probably way off because we never really looked into it much) on the back of Robbie's head. After looking at the MRI today the neurosurgeon said that it wasn't what they thought and was just a slight skin defect. That means no worries about the brain or any issues with the brain.

Pictures From Last Night

I was able to go over to tuck Robbie in for bed and they let me hold him for about 45 minutes. He is such a good little baby for everything that is going on with him. He squirms for a about five minutes then it's lights out once he gets in our arms.

Sounds like today will be his first surgery and we are just waiting on them to call us and let us know more. They don't let anyone back to see the babies from 7:00 am-8:00 am or 7:00 pm-8:00 pm because of shift changes. Once we find out more we will make sure to update everyone. I am going to put a Twitter account on the blog so I can send updates when I'm away from the computer.

Just keep sending those prayers and know that he is a very strong and resilient little guy that will get through everything just fine.

Update: Tuesday, May 18th

Today was kind of a rough one to start, we were left in the dark for most of the day but thanks to the help of Carrie Dell we were able to get some questions answered. Carrie is the wife of one of my good friends and assistant coach this year for basketball, Isaiah. She works at Children's Mercy and happens to be good friends with the lead doctor that is watching over Robbie.

Once we were able get Dr. Malloy to sit down with us she explained what we are looking at in the near future with Robbie. He went in for an MRI at 5:30 p.m. tonight to check out his head and how they are going to remove and close up the growth/blister on the back of his head. The MRI is checking out his brain to make sure there is no swelling or fluid leaking from the brain. This will be the first of his surgeries and hopefully taking place in the next 48 hours.

There are other issues that will need to be addressed with surgeries, but the removal of the growth and making sure the back of the skull is sealed up and infection-free is the first hurdle. He is being such a trooper and I was able to hold him for the first time today, oh it felt soooo good.

We are still just asking for nothing but prayers to help him get through these tough times. Hopefully Saree will be able to get out of St. Luke's on Thursday at the latest. We have a room at the Ronald McDonald House right across the street from Children's Mercy and I am going to be staying there tonight. We will have a room there until Robbie is able to come home with us. We are very fortunate to have this available for us.

Our families have been so supportive through these difficult times, making it easier for us to get things done. We especially want to thank my Mom and Dad, and Saree's Mom. They have been here for us these first few days allowing me to be over with Robbie and still have someone here with Saree. It is times like these that really let us know how many truely great people we have in our lives.

More Pictures of Robbie

Robert Michael Morley

Robbie graced us with his presence at 10:20 a.m. this morning, weighing in at 8 pounds 6 ounces and measuring 21 1/4 inches long. He got moved from here at St. Luke's over to Children's Mercy and will be getting checked out tomorrow for some challenges that he is going to face. We don't know any specifics yet but we will know a lot more tomorrow.

Saree is doing fine, just resting in her room at St. Luke's with her Mom and my Mom. She is feeling pretty good for having a C-Section less than 12 hours ago and can't wait to get over to see her little nugget as soon as possible.

More updates with pictures will be sent out once we know more. All we ask for from everyone are prayers for Robbie.

Monday Is The Big Day

Monday morning we check in at 8:00 a.m. and the C-Section is scheduled for 10:00 a.m. We are very excited for this moment and can't wait to meet our new addition.