Greyson 6 Month pictures

Greyson's 6 Month pictures:

He was not very happy and obviously got tired during the shoot so he napped and we took pictures.  He doesn't have near as many clothing changes as Addison did but we got some GREAT pictures!

The day of doctors...

So our first appointment was at 11 am for Addison to see the urologist. Apparently Boone didn't send the results up from her test in December so they were waiting on a report from them  I  didn't know that so it ended up I explained the test results before Boone got a report faxed up. Everything should heal itself and she will stay on antibiotics daily and retest in November or December, which is gonna be a pain now that she is potty trained. She won't pee in anything other than a potty. So they are really gonna have to fill her bladder to get her to go on the table. I fear she will be embarrassed if she potties on the table. 

On to Mr. Greyson. His nursery follow up went well. He is where he should be developmentally. He is SO close to rolling and they showed me how to help him work on that. He is also REALLY strong in his legs but needs to work more on his arm strength so that will be our goal over the next few days. He got a new toy that should help him work on pushing up with his arms. 

Cardiology...no news there. He is doing great. Sats were in the mid 70's which is alright. Dr. Rahimi would rather see them 80-85 but 70's are ok too. He has good flow through his Glenn. I could see it in his echo which was pretty neat. Addison and daddy fell asleep waiting for the echo and so did Greyson which was helpful for his echo. He slept through most of the echo but woke up when dr rahimi came in to mess with him. He was awake from about 10:15 this morning until about 3:30 when he got his echo cat nap. He was in an excellent mood though and it was nice to see him so awake since that's not something you would see before surgery. 

We were able to make our donation of leg warmers and hats to help make other kiddo's hospital stay more comfortable. Once Greyson outgrows his plastic cleanable toys we will donate some of them to the hospital as well. It will be nice to give back. We have gotten such great care from everyone at cardinal Glennon and it makes our situation so much easier. I used to worry that we wouldn't meet nice drs. That some of them might be sort of cocky or push their own opinions as dr grant did but all of the drs and facilities have been so great. (what does dr grant know anyway).  Anyway I'm glad to be able to give back. Oh and in case you were wondering how fat the little man has gotten...he was 15 lbs 1 oz!!!  He was 12 lb 10 oz when he left the hospital 5 weeks ago after his surgery. The boy is doing so much better. So well incactwe don't see cardiology for 3 MONTHS!!  We will have saturations checked monthly with his pediatrician but not seeing a dr weekly is both exciting and scary. I know dr rahimi really cares about Greyson and wouldn't do anything he disnt feel totally safe with so we are happy about that.  

Busy Tomorrow...

So tomorrow is our day full of Dr's appointments for both kids.  Addison has a urology appointment at 11, lunch at the lovely Glennon Cafe, which means mommy and daddy are getting the fruit and yogurt parfaits that we so love ;)  Greyson has his nursery follow up at 1 and cardiology at 2.  I am hopeful that the nursery follow up doesn't take too long but it sounds like a Dr will check him over and a PT and maybe OT.  Not really sure why when he sees a PT monthly already and I know my boy isn't behind.  He has already rolled from his belly to his back and is SO close to rolling from back to tummy.  I guess it would probably help if he actually liked to be on the floor.  He wants to sit up so bad and isn't far from it.  He laughs and smiles all the time.  His sister didn't do much until she was 8 or 9 months and then she did everything.  She sat up, crawled and pulled her self up on things within a week or two.  He will get there I have no doubts.  The poor boy has been through a lot in his short 6 months... Yes that is right I said 6 months.  Tomorrow Mr. Greyson is 6 months old.  My how time has flown and how we have had so much happen in such a short time. 

I found my feet!

My first movie!

Addison's First movie!!!

Shopping... Again?!?

Shopping Saturdays!

Rockin' my leg warmers!



Synagis and saturations

Greyson went in today for his synagis shot and saturation check. Addison started feeling yucky with a fever like she had the day before right when we got to the office. Yesterday we gave her Tylenol and it went away and she was fine this morning. She had a temperature of 103.7 at the dr today and it was 103 yesterday as well. I was holding her when she did G's saturations so I didn't get to look at the machine. I was surprised when she said they were 87-90!!! She even put it on his other hand just to be sure and it read 88 as well. He didn't cry much when he got his shots either and he weighed 14 lbs 7 oz today so he is growing pretty good.

Addison took some Tylenol while we were there and not so willingly let Dr. Meyer check her out. With her renal history and the fact that she missed a day or two of meds that worried us. She was saying that her legs hurt and having me and Nate kiss them, but there is no rash anywhere on her. She also told me today that her potty hurt which had me worried that it might be another UTI. We tried to get her to go potty there but we had just gone so she didn't go. We took the stuff home with us and finally at 5 she went. I took it in and they did a dipstick test on it which was negative. They are doing a culture on it to see if it grows anything. I have to call if any new symptoms come up or she still has a fever after 72 hrs. I don't know what it is but I'd be happy if it cleared itself up.

No News is good news

Greyson has been doing Awesome!!!  He gained a pound in a week and as of last Tuesday was up to 14 lbs.  He eats like a pig and has Rice & Apple cereal 2-3 oz in the morning and straight Rice cereal in the evening 2-3 more oz.  He has started playing in his jumper and LOVES it so much more than Addison did.  He is full of smiles and giggles and is such a different baby than he was before surgery.  I can't believe how little energy he had and we didn't realize it.  I am still nervous all the time but slowly getting over it.

He now loves bathes which he SCREAMED through before.  I think he is ready to go swimming and Addison is so ready to go so I feel like a trip to the ARC may be in our future. 

Here is a progression of his scar it is looking VERY good!!

6 Days After Surgery:

1 Week After Surgery

2 Weeks After Surgery

3 Weeks After Surgery

1 Month After Surgery



Going Home!!!

Greyson has had his EKG, Echo, Synagis shot, Chest X-ray's, groin line out, and Chest tube dressing changed today.  We are giving him tylenol for the ride home and we are gone!!!  Greyson is feeling very good, he has been smiling and kicking and talking today, back to his normal self.  This morning the nurse laid him on my bed to change his bedding with a pillow on each side of him.  She said he managed to get almost all the way over to his stomach, if the pillows hadn't been there he would have gotten all the way over.  I'm sure he will be rolling over in a week or so. 

Update 2/26

Greyson has gotten his chest tubes out, and the IV out of his hand.  He still has the IV in his groin but that should come out tonight.  We are looking at going home tomorrow evening or Monday.  I am SO ready to go home.  I'm not sure how we did this for 2 weeks in the NICU.  I am glad that we had it done this week and we will be home relaxing on mommy's birthday.  Mommy is CRAVING the chicken from the Rome, I am so excited to go. 

Happy Baby, Happy Momma

Once we got down here to the TCU floor Greyson was hungry so I tried feeding him.  He hadn't eaten since 11 and this was around 2-3 pm.  He didn't act like he wanted it but I knew he would be hungry, so we tried between the boob (he at for about 2 min maybe), bottle (He didn't want it), and paci and nothing made it better.  We gave him a tylenol suppository and he pooped that right out.  He was still very upset and obviously not feeling well.  We gave him so Oxycodone and put him back in bed.  He rested for about 4 hours and when he woke up he was ready to eat.  He nursed about 7 min which is average for him.  The goal now is to get those drain tubes out, they are not putting out a lot of fluid so the talk is possibly tomorrow.  If he has his tubes out they said maybe that evening or the next day he could go home, so it is possible we could go home Sunday but hopefully by Tuesday.  On another happy note, he just smiled his BIG smiles at mommy.  I am SO happy to see that.  Tried to catch it on camera but apparently his unwillingness to have the cute smiles caught on camera was not something lost during surgery. 

Mommy gets to hold her baby boy

His incision

Look at those Sats 88!!!!

Smiling...well what he would let me get online

 

We are OUTTA HERE!!!

Greyson has his Pacing wires out, his arterial lines out, and off the oxygen. He has orders in to go to the floor so we are just waiting to find out if a bed is available. Once we get to the floor I will probably try feeding him. We are hoping to go home Sunday or Monday depending on his drain tubes.  Thank you all for checking up on him. 

3 days Post Op

Bandages off

Dr Fiore rounds

Dr Fiore did rounds this morning. Greyson gets his arterial line out this morning and later he will get his pacer wires and other groin IV out. He will have no cords in his diaper!!! He will only have two drain tubes, IV in his hand and the monitor wires!! His drain tubes aren't putting out much so it shouldn't be too much longer. Let's hope our room on the floor is a private room.

Update 2/24 AM

Greyson is doing EXCELLENT!!  He is working on getting off the last two drip medicine's that he is on.  He ate some Pedialyte from a bottle last night and can have my milk this morning.  The drainage from his chest tubes is much less than it was yesterday so those might be able to come out tomorrow along with his groin IV's.  He did get his cath out today so I am certain he is more comfortable there and he is on Oxycodone, tylenon, and motrin for pain.  He is breasthing room air as well so he might get the nasal cannula out today as well.  His saturations are in the low 80's which is SO nice to see.  Thank you all for checking up on him.

Extubated!!!

Greyson was extubated about 11:20 this morning.  He is doing great.  Here is his one day post op Picture:

Here he is after he got Extubated:

The morning after...

Greyson is still intubated but he is really moving. He is starting to wake up. He was making his crying face this morning and I got up and talked to him and that calmed him down. They are getting ready to do a chest X-ray and give him a bath...which he's gonna hate. Dr Fiore should be in in the next hour or so to check on him. The goal thus morning is to get him extubated. I'll be glad when that can happen and I know Greyson will be too.

Surgery done!!!

Greyson is out of surgery!!!  We just spoke to Dr. Fiore.  He said that they were able to do everything that they wanted to do.  He had no problems with coming off the Bypass machine and is having no heart arytthmias.  We will get to go see him in 20-30 min.

Surgery Update noon

Greyson has had his glenn surgery done and he is almost off bypass.  He did really well.  We should hear something again in about an hr.  He will probably be in recovery in about an hour and a half or so. 

Update 11 am

Greyson is open, on bypass and they are starting the Glenn right now.  Everything is going great.  Barb will update us again in an hour.  Everything is going well right now.

Update 9 am

Greyson is doing fine, he has his IV in and is intubated.  They were starting his incision and we should know more about 10:30.

Sent him in

We walked Greyson down to the surgery area. They were going to give him gas and then put his IV and intubation tube in. We will get a phone call about 9 to tell us how he is doing but will probably only be intubated and IV's. I will update after then.

Morning of surgery...

I woke Greyson up at 3:30 last night to feed him for the last time before surgery. It was nice to cuddle him since I won't be able to for a while. I want to now but I don't dare wake him since he can't eat and would probably be upset. They will probably take him back about 7:15 to start everything.

Surgery is on...

Greyson and mommy are at the hospital in our room.  He is having surgery in the morning at 7:30 am.  Barb will come out and update us about every hour and a half.  So you can expect an update about that often.  I am not so much worried about the surgery but more about the recovery.  I know that in no time this will be a thing of the past, it is just another thing that we have to get past.  I am going to try to get some sleep tonight, not likely, and we will update everyone tomorrow.  Pray for our little guy!

Everything on Greyson time

I took Greyson in for his saturation check this morning and he was staying in the 60's. He dropped to 54 once and spiked to 83 but came right back down. I talked to Dr. Rahimi and he wanted me to get his saturations checked again tomorrow but once he spoke with Dr. Fiore the surgeon they decided it would probably be best to go ahead and get his surgery done. Dr Fiore leaves town Saturday so they didn't want his levels to get any lower while he was out of town. He has been on antibiotics for 10 days for his cold and they have caused him to get a yeast infection. We have been treating that though and it is pretty much cleared up so they will check that this evening too. Will update later tonight once we know for sure if he is having tomorrow or not.

Surgery & sats

Greyson was reading 68-72 and dropped down into the 50's ( which is REALLY bad ). He weighed 12 lbs the past two weeks and this week 11 lbs 15 oz again not good. His pulse ox did finally come up to 74-77 which isn't great for him. We are gonna check it again Monday. Thursday we see the cardiologist and next Thursday after that is surgery. 

UPDATE: talked to dr rahimi and everything is ok with his saturations bc they came back up and didn't stay low. His lack of weight gain is sort of concerning but not enough to bump surgery up. We will see what his weight is on Thursday and recheck his saturation levels on Monday.

I'm feeling a little pity today. I wish my life wasn't like this, I wish I could just enjoy my boy and every different stage he goes through. Now I find myself looking forward to a surgery that I really dont want to have to have done on my little baby. It scares me and there is nothing I can do about it. This whole heart thing just SUCKS!!! Ok I think I'm done venting. Thanks for reading. ;)

Greyson 3 Month Pictures

Surgery date set...

Just heard from dr Fiore. We are going to do greyson's surgery march 2nd. Unless his saturations get in the low 70's I feel much better actually having a date. Dr Fiore spoke with dr holly's office and they are going to see him weekly to check his saturation levels.

No rush

Greyson weighed 11 lbs 2 oz today. In true Greyson fashion however he will not be having surgery in the next 2-3 weeks. Dr Fiore feels he is doing good enough that we can wait until he is 4 months but not more than 5 months. Dr Fiore will call me this evening to discuss everything and set a more specific date then. We are going to try to do it on a Thursday to allow everyone more time with him. I'm beginning to think maybe he is just perfect and doesn't really need surgery...lol...NOT! I'll let you know as soon as I know.

Cardiology appointment Jan. 13th

We saw Dr. Rahimi Thursday and greyson's echo looked the same as before. He weighs 11 lbs so he is at weight for surgery. His saturations were in the mid to upper 60's but did get up to 71 a few times. I didn't really like this but dr rahimi said it might do that everyone in a while. This shouldn't be an issue after surgery. He increased his propranolol to .8cc's bc of his weight but he won't have to be on that after surgery as the pulmonary valve that the meds are helping won't be in use anymore. He will however probably have to be on Lasix, which is a diuretic, for a month or so. Dr. Rahimi will present Greyson's case Monday during the cardiology meeting and I should hear from Barb, Dr. Fiore's assistant, then to see which Monday we will take him up to meet with dr fiore and do all his pre-op stuff, chest x-ray, blood work and all that stuff. Then that week we will have surgery. I am hoping to be able to do surgery later in the week so that those who have jobs will be able to stay longer without taking time off work. I hope we will be able to get in the last week of January as his saturations kind of worry me since this is the second week they have done this. I know he has to have surgery, there is nothing I can do about that, so I just want to get it done and over with so we can move on with our lives and worry at least a little less. I also left a message for barb about direct donation of blood. Greyson is B+ and I am O- so Nate is possibly B+ and we might be able to at least donate enough to prime the bypass machine. We will prepare better for next surgery though so hopefully he won't have to have anyone else's blood. I will update again on Monday once we get our surgery date. Feel free to email or comment with questions. I asked a lot Thursday but you might have some I didntthink of and still want to know. Thanks for checking in on Greyson.

Drs appt update

We are leaving the hospital now. G's echo looked the same as before so as of right now he is looking at surgery the end of January early February. We will have to wait until after his appt on January 13th to get a better idea of surgery date exactly. They increased his Meds to .7 bc of his weight and want us to see dr holly after the first of the year to check his weight and saturation levels.

It's been a min since I lasted updated. Sorry greyson is now on .6cc three times a day and that seems to be working very well for him. We were supposed to see Dr. Rahimi today but the weather kept them in STL. He called this afternoon to see if we wanted to come up there or see a dr here. He said he preferred to see him but it was what's whatever was easiest for us. We agreed that we would rather him see G since they already know him and his condition. We will see what we find out then but I am glad he wants to see him before January. Maybe we will get a better idea of surgery date. I want it done but I'm scared of it too.

On another note. Addison had her repeat renal ultra sound and she was a 3-4 on the left in january and this year she is a 2-3 on the left. So it is getting better but still gonna be on antibiotics for probably another year or so.

Newborn pics

Monday, November 29, 2010

Heard from dr Rahimi. He upped Greyson's meds again and said he is still going to discuss possibly doing one of the procedures we talked about. He also said the meds won't necessarily increase his saturation levels but will help prevent him from having a cyanotic episode (turning blue). Dr holly did say she thought he was more cyanotic today than he was a few weeks ago. We go see dr holly again on Thursday so we will see what goes on then. In the mean time we need to keep an eye out and making sure he doesn't get more blue. I have noticed that his lips don't regain their color like they used to and his hands and feet are cold a lot more often.

Here is a site I found that explains a lot about double outlet eight ventricle. It shows the shunt they are considering doing and discusses the Glenn and fontan surgeries. Remember his great vessels are switched and his valves are attached through the VSD.


Double Outlet Right Ventricle

Balancing act...

I heard from dr Rahimi. He spoke to dr J and we are going to increase Greyson's Meds to .6 cc three times a day and go see dr holly Monday and get another saturation level. Fingers crossed that helps and he will be able to hold out until his Glenn at 3 months. So we will know more on Monday.

It's Greyson's world we just live in it...

Ok heard from dr Rahimi. We are upping Greyson's medicine but they are talking about doing a shunt which is open surgery but might be able to be done from the side or a cath balloon to open the PA. He said the cath would allow some time until his Glenn surgery in january. I am guessing we are looking at something in the next two weeks but dr Rahimi will talk to dr J (who did the cath balloon before) and dr Fiore (cardiothoracic surgeon) and get back with me tomorrow. I dont know why I would be surprised by anything when it comes to Greyson. He makes his own plans. I'm still hoping to not be in the hospital over Christmas again this year but that might not happen.

November cardiology appointment

Greyson went to the cardiologist today, dr. Rahimi. We got there at 10:45 and didn't get out until after 3 pm. It was a very long day. We did two echo's bc he was upset and crying for the first one and they didn't get very good pictures. He was put on propranolol .25 cc three times a day. The muscle blockage under his PA is getting a little bigger and his oxygen saturation was 74 it was in the mid to upper 80's when we left the hospital. I was not real happy about that number but if the medicine doesn't make it go up some then he will have to have surgery earlier rather than 3-4 months. Dr Rahimi said that he will have his surgery In January unless things change with his O2 saturations, so that made me happy it won't be during Addison's birthday. He said typical recovery time is 5-7 days with 2-3 days in the PICU and the rest in a regular room where Addison can come in and visit. I was glad to know that I will only have a few days away from her rather than a week. Nate is going to go with us next month so he can see the echo and ask any questions the. We may know a surgery date or closer to at that appointment. I'm excited to have the surgery and put that behind us but I am also very worried to hand my baby over to someone who is going to put him on bypass and cut his chest open. I try to cherish everyday we have and know we have the best Dr's working for him.