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.

Jaundice

Greyson had a repeat bilirubin level draw yesterday morning. On Tuesday his level was 14 on Thursday it was 15 and yesterday it was 10. He was at 9.5 shortly after he was born but it appears to be coming down so that is what we want. He has his first appointment with dr holly tomorrow. Hopefully he won't have to have blood drawn again. He is doing very well at home. Addison loves her brother...but she has to learn to be easier with him. We are all happy to be home though. It's nice to have our family together again.

Going home!!!!

The Internet at the hospital has been down for the past few days so I was unable to update the blog. The important news...WE ARE ON OUR WAY HOME!!!! Addison is going to be so happy that mommy doesn't have to leave anymore and it will be so much easier on me. Not to mention how excited I am to be home with my husband again and just have our family back to normal. We do have lots of Dr's appointments in the future not to mention the two surgeries but we shouldn't have to worry about any of that until after the first of the year.

Big Boy Bed

Greyson ate for 25 min. this morning and got 20 mL of colostrum before that.  He ate again for about 10 min over a 20 min stretch about noon and then when I put him back in his bed he spit up all over his blanket and clothes.  I took his clothes off and changed his blanket, then he decided to poop, so I changed his diaper and as I am wiping him he poops some more, then he pees for like 10 min straight all over himself and his bed.  After I changed his blanket again he starts sucking on his hand like he is hungry.  I got him out and fed him for...5 min.  That's all he wanted I guess a little to top him off.  This morning his fluids were at a rate of 12, before his second feeding they lowered it to 6 and they just took him off fluids all together.  As long as he continues to eat and doesn't throw up a lot then he will have that taken out tomorrow.  Then the only cords he will have on him will be monitors and if they come off it isn't a big deal.  He will be able to wear any kind of clothes he wants.  Our favorite day nurse, Crystal, just ordered him a bassinet just like the one's that all babies are in in the hospital.  I am really excited to see him in that bed, it makes things look less scary and more normal. 

The cardiologist we met with today on rounds said everything was looking great and as long as things continue like they are he will be able to go home in 5-6 days which would be Saturday or Sunday.  When we came back from lunch Dr. J (cardiologist who did his procedure) asked me if I was ready to go home tomorrow.  I said no, I'm not so certain he wasn't partially serious.  I told him that Friday would be a great day to go home but only if he is sure he is ready to come home.  I can't believe we will probably be taking our litle guy home this weekend. 

Doing Awesome!!!

Greyson got extubated about 2:45am.  He had to have two good gas level results before they could take the tube out.  They ran one at midnight and were going to run another at 4 am but he was gagging and throwing up so they ran it at 2 and got it out.  We were super happy to see that come out.  After he got his tube out he got to put some clothes on. 

Weight for today...up 90 grams.  I'm pretty sure it is a lot of fluid, he was really swollen looking when he came back.  One of the meds he was on sort of makes fluid hang out in his body, but he has started to re-absorb it.

Procedure done...Extubating?

Greyson did Awesome through his procedure he is in the process of waking up right now.  He is taking a little longer than I like to fully wake up.  His gas levels were high meaning he wasn't taking deep enough breathes, but now the numbers are much better so they are giving him less help.  The nurse said they are going to check another gas level at 1 am and then again at 5 am but she didn't act like they would extubate him until morning :(  If he wakes up fully and starts getting upset then they might take it out sooner.  I have a hard time believing that he will wake up and not be upset about a tube down his throat.  We will see though.

Cath Lab

Greyson got his intubated at 11:30 this morning, me and Nate left bc I didn't think I could really handle seeing him like that before he had the procedure done.  I just heard from the Cath lab and they said that he has had the balloon pulled through once, I am not sure if they are gonna do it again, they are going to check the pressures in his heart to see how things are in the pulmonary artery and the aorta.  She said she would call me when he heads back up to the NICU or if they are still down there at 4:30. 

Getting Ready

We are at the hospital right now while Greyson gets his IV.  He is crying up a storm, not happy, probably more so because they are stretching his arm out when he wants it all tucked up.  We can come back after he is intubated around 10 but I am not sure I can handle seeing him intubated before the procedure, after it is all done and he is fine I can handle it when we come back.  It is going to be a long day that is for sure.  I hope spending time with Nate and Addison and my mom will help keep my mind off of it.  I will try to update after the procedure is done.  Fingers crossed that everything goes well and we can be home this weekend. 

Procedure Scheduled

We met with Dr. Fiore yesterday and he agreed that at this point the balloon septostomy is the best idea at this time and then around 3-4 months we will do the first step in his procedure.  He also said that the Glenn, then Fontane surgeries are the best idea for him at this point, if his right ventricle grows in the future then plans may change.  Right now he is scheduled for his Balloon spetostomy on Monday afternoon, they will come in about 10am and put his respirator tube in and sedate him and do X-rays and such to make sure everything is where it is supposed to be, then around noon or 1 they will take him down to the cath lab and do the procedure.  They will bring him back up to the NICU to his room and allow him to start waking up from sedation.  Once he starats waking up they will remove his breathing tube and he will probably be able to eat tomorrow night.  Then on Tuesday we will start working more on him feeding regularly, they will stop giving him the TPN, which is the IV fluid with all his nutrients in it.  When the TPN is taken away he will start feeling hungry and will want to eat more often.  Once he is eating good and gaining weight and keeping his blood oxygen saturation levels up then we will be able to take him home.  We are hoping to be able to go home next weekend, but that will depend on him.  They will also be able to do his circumcision sometime in the day or two before he goes home.  We are super happy about everything that is going on right now, and once we got over the shock, I guess you could say, that things couldn't be repaired in one procedure we are much more happy with the way things are going.  He has been trouble since the beginning, he is a Knigge, lol.

Update

We saw Dr. J today and he said he spoke to Dr. Fiore today and they agree that at this point the Balloon surgery is the best option for Greyson.  Dr. J will do the balloon surgery and he is thinking he will be able to do this procedure on Monday.  He will be on the respirator for about 24 hours depending on how sedated he is.  After that I believe he will have to eat well and put on weight and keep his stats up and then we will be able to go home.  It is highly likely that we might be able to go home next weekend.  All the cardiology people will meet on Monday and discuss in detail what they are going to do.  I am hopeful that they will do the "procedure", since it really isn't a surgery there is no cutting, it all goes through his umbilical vein, on monday.  We should have a better idea this afternoon, but won't know 100% until Monday for sure.

Not what we were expecting

We met with the cardiologist this afternoon and got a lot of information.  I can't say it was good information but it wasn't horrible information either.  The surgery to switch Greyson's two main Arteries in his heart and close the defect is no longer a good option for him.  It looks like both of the valves have attachments to the opposite ventricles than they are supposed to which makes closing that hole and re-arranging the arteries not an easy option.  They are also not sure about the mitral valve which is currently a pulmonary valve but would become the aorta valve.  There is also some kind of obstruction before the blood flows into the pulmonary artery.  He has a whole list of problems, making his case pretty rare.  There are two repair options that can be done later in life when things are larger.  One they would close the septal defect so that the aorta and pulmonary artery are both in the left ventricle then insert a tube from the right ventricle to the pulmonary artery.  This would require multiple surgeries over his life to replace this tube some of which would be able to be done in a cath lab without stopping his heart altogether.  Option two is a Fontane surgery (I think that is what it is called) where they would attach one of the tubes bringing blood from the body to the heart straight to the pulmonary artery.  Then in another surgery they would attach the other tubes bringing blood from the body to the heart to the pulmonary artery as well.  In a way bypassing the heart all together for blood to be re-oxygenated.  This surgery would require less operations over his lifetime and would start about 3 months and be completed by the time he was 3 years old.  Regardless at this time we are looking at doing the balloon surgery to open the hole between the right and left atrium's of the heart so that un-oxygenated and oxygenated blood can better mix within his heart.  We aren't sure about the mitral valve and it has a chance of narrowing which without the balloon surgery would mean that blood would back up into his lungs.  It is a very hard pill to swallow knowing that our baby boy won't be able to be put back together correctly.  If he had only the septal defect or even the septal defect with the switched arteries they could probably fix his heart to be like a normal heart.  We will meet Dr. Fiore again tomorrow and be able to ask him questions then.  All the cardiologists and Dr. Fiore will meet on Monday to review all the cases that they have and they will discuss Greyson's case then and decide which is the best treatment for his situation.  With either case his chances of survival are about 90%.  Between the time we leave the hospital and he has his first surgery he will have to be monitored very closely to make sure that blood is mixing properly and being distributed where it needs to go which means regular visits to either Jefferson City or St. Louis.  Please pray for our little boy he has a long road ahead of him.

Umbilical Vein Line

Nate was able to come up last night and I was comfortable enough with our nurse that I went and stayed at the hotel with him, so I wasn't able to update the blog last night.  Greyson is stable right now and I feel comfortable leaving him over night as long as we are back in the morning for his feeding.  I called yesterday afternoon to see if his PIC line had been put in yet and found out that the cardiologist told them to leave the Vein line in in case they do that balloon surgery rather than the permenant fix.  I was kind of upset at first since they are only really good for 7-10 days and after then they start presenting a risk of infection.  He has to have blood work done every other day to make sure he isn't getting an infection.  After me and Nate spoke with Dr. Sadiq at rounds this morning we are both more comfortable with the idea of the balloon surgery.  The cardiologist presented it to me as he would rather do this temporary fix even if the permanent fix was avalible at this time to let everything grow, sort of like it would be easier for them but not impossible right now.  Dr. Sadiq explained that Dr. J (cardiologist) and Dr. Fiore would talk today and decide if Dr. Fiore could fix the septal defect and switch the great arteries AND correct the valve tissue that has connected to the left ventricle rather then down into the right like it is supposed to.  The valve tissue is what is causing the issue that we weren't aware of before birth.  The balloon surgery would be a temporary fix IF dr. Fiore doesn't think he can fix it right now, then in 3 months or so, when things have gotten bigger, they would do the actual repair.  We were concerned with monitoring his blood oxygen level and respiratory rate and pulse at home, to make sure that his heart is still pumping enough oxygenated blood to his body.  Sadiq said that they would do echo's after surgery to make sure that enough blood is getting to everything and that they blood is mixing properly.  They would also repeat Echo's periodically over the next 3 months or so and make sure that as things grow everything was still mixing and getting oxygen properly.  It would mean lots of trips up here, but probably an easier surgery on him now and a quicker recovery.  I am more alright with the idea now that I know it is on the table if he doesn't feel he can fix it now.  The cardiology team should be doing rounds soon and when they do I will update on what they talked about. 

Umbilical lines

Greyson's UAC is for them to draw blood from at this time rather than having to stick his heels, so I was quiet surprised to be woken up this morning by a tech drawing blood from his heel, needless to say he wasn't very happy about it.  She said the nurse had Ok'd it, the nurse came in and told me that the line was flushing fine and infusing fine, but it wouldn't let them draw back from it.  They had put something in it to break up a clot if there was one, but that didn't seem to help, it is also not reading his blood pressure anymore, which pretty much means it isn't working correctly.  We are waiting for Dr. Sadiq to get in and decide what he wants to do with it, I am quiet certain he will want to remove it and I do to.  The only thing currently holding it back at this point I think is the cardiologist wanting to use his umbilical vein for that balloon surgery but Dr. Fiore (cardiothorasic Surgeon) is back today and I will be expressing to him that me and dad aren't pushing for that procedure. It seems weird to say we would rather have open heart surgery than a cath surgery but the cath surgery isn't a fix it is temporary and would make us both very nervous until they fixed it for good especially being 2 hours away from a pediatric cardiologist. 

On another note, yesterday when the cardiologists did rounds, I could hear them talking outside our room and he said I think mom's keeping with that, I am sure talking about breast feeding as soon as he came in he asked if I was still feeding in the morning and pumping then "fake" nursing at night.  I wasn't bitchy but got my point across when I said I was nursing him twice a day and both me and his father felt that the risk of NEC was small enough that we were comfortable with feeding him twice in a day at this point.  If the surgeon comes in today and says he doesn't want us feeding him anymore then we won't, which will be hard bc he wants to eat twice a day.  He may also say he doesn't want him eating after Friday or Saturday bc of surgery on Monday or Tuesday but we should know better what procedure they are planning to do and when it will be this afternoon.  I will update everyone after rounds on what happened with the lines and the surgery.

Pee Pee

Our nurse today is not so great, I was holding him this morning and fed him and then I wanted her to help me put him back in his bed, she just scooped him right up and I had to un-hook his umbilical lines from the corner of his bed before she ripped them out.  They work 7-7 and when I was coming back from lunch at 10:30 she asked me if he had any diapers since she came on this morning.  She hadn't changed his diaper in over 3 hrs?!?!?  I decided to change him myself, I am much more comfortable with the umbilical lines then before, I got his diaper out and was wiping him off and BAM he starts peeing everywhere, I put my hand over it but he had managed to pee clear up his chest.  I have officially been peed on by my son, but I feel much more confident about changing him now.  They are still going to leave the umbilical lines in for no more than 3 more days.  If the cardiologist would say it is alright to remove them then we could but this Dr wants to do that balloon procedure which requires them to go through the umbilical vein, we don't really want that surgery but want whatever is best for him.  I am ready for those lines to come out and a PIC line to go in.  Once that is in then he will be much easier to hold since that line will be much more secure. 

Momma knows best

This morning Greyson ate for 30 min.  When I got back from dinner he ate for 25 min.  When he eats he doesn't mess around and fall asleep or eat for a bit then rest for a while he EATS non-stop with maybe a few 5-10 second breaks.  Momma knows what her baby wants, lol.  I talked to Nate this evening and we both agree that twice a day feedings will be good for him after we weighed the information we had on this NEC.  Of course if Dr. Fiore has a different opinion then we will consider that much more strongly than the differing opinions we are getting from the two cardiologists and the fact that Dr. Sadiq is alright with him eating and doesn't feel that the risk of NEC is very high. 

He got his sign made today and it was on his door when I came back from breakfast.  Now he has a sign like all the other babies here. 

Roller Coaster

So I am extremely upset right now, the cardiologists changed on Monday morning and the new one has quiet a differing opinion than the one we had.  The first cardiologist was alright with him eating and so that is what we had been doing, which was making him quite happy then the new cardiologist came in and wanted to take away his feedings altogether.  The concern is NEC which is an infection in his intestines, Dr. Sadiq (neonatologist) said that the risk of that is about 3%-5%.  Not really high enough that it was a big concern but something that could happen.  Having the UAC & UVC (umbillical lines) I think makes that risk a little different but no one really knows what causes the NEC.  The first cardiologist was leaning towards the full repair of his heart sometimes in the next week or so, which is what we would prefer.  This cardiologist is wanting to do some balloon to tear/open the hole in the top part of his heart to better allow blood to mix inside his heart and then put a band on his pulmonary artery to reduce the amount of blood going to the lungs, since right now the flow or pressure is about the same to both arteries and normally it is about 20% to the PA.  I asked this dr about removal of the UAC & UVC and he hinted around that for this balloon surgery he would want to do he needed that line open but didn't really say if they could keep it open and take those lines out or what.  He doesn't really give straight answers, when I asked him about the nursing he tried to creep out of the room and when we asked for a final answer on how many times a day he said "I was hoping you wouldn't ask about that again."  This really upset me to think that this dr would just try to creep out and not answer my questions.  The cardiologists switch out every two weeks so we are stuck with him.  He wouldn't be my choice but Thursday Dr. Fiore (Cardiothoracic surgeon) will be back and he is the one who will make the final decisions so we are going to go with twice a day feedings until Dr. Fiore gets back and he might change that then.  I feel better after talking to Dr. Sadiq this evening and him OKing Greyson eating twice a day.  He explained that the UAC goes below the portion of his aorta that goes to the intestines and that the risk is much much lower with breast milk than formula.  We are going to stay on twice a day feedings at least until Thursday when the big wig might make a change. I want to do what is best for him and am confident that Dr. Fiore will make that call.  I have heard nothing but good things about him. 

Feeding

Dr. Sadiq came in this evening and said that the cardiologists were in and that they don't really want him to eat whenever he wants, but that they aren't going to take away his once or twice a day feedings.  The nurse said that the attending cardiologist who was on was alright with him eating as he wanted, but a new one came on today and they don't want him to eat, there is also the chance that Dr. Fiore the surgeon will have a different opinion on this.  I think the cardiologist gets the final say though.  About 9 pm tonight he was spitting out his pacifier and crying a lot, when I put his pacifier back in he really tried to get it in his mouth and would suck vigorously on it for a little bit then spit it back out and start crying.  He was really hungry but since I had already fed him twice today, even though he didn't really eat much earlier, they won't let me feed him again until tomorrow.  After about 2 hours of that he seems to have calmed down and is sleeping pretty good so far.  Hopefully he will stay satisfied until morning and I can try to get him on a twice per day feeding schedule. 

Grumpy old man:

Mommy, Addison, and Greyson (hopefully it won't be too long before daddy can come back.)

Big Boy

Greyson is doing great in his open bed, doing well regulating his own body temperature.  He can't wear clothes right now because of his umbilical lines but he keeps kicking out of his blanket so now he has his blankie covering his little legs, since they were getting cold.  This morning they uped his fluids a little, and said that he can feed whenever he wants but that if he is going to the breast a lot during the day we will just have to adjust his fluids.  He also said that after 7 days of life they are removing the umbillical line, which I heard they are only good for 7-10 days.  We will see what the cardiologists say about that coming out, I don't know if they will have to use it for surgery or not.  Dr. Fiore should be back today or tomorrow to look at everything and decide what plan they have for surgery.  Wow, surgery, I knew he would have to have it, but it seems more scary the closer we get.  I just hope that they can do the repair that will fix it for good rather than something we need to repeat later on or will limit his activities later in life.  He's a strong boy though so I am certain everything will be fine. 

This is what he looks like, tiny boy in such a big bed.

Open bed

Dr. Sadiq came in this morning. He was quiet impressed with greysons eating. He did say he is keeping his body heat up so they opened his bed up. As daddy says he is no longer in his time capsule.

Hungry Little Hippo

So the computer messed up last night before I could make my post.  We are going to go get a new one for mommy today and then fix the big one for daddy.  I'm excited, lol.

Greyson's jaundice levels came back at 7 so they aren't high enough to need light therapy just yet.  All babies bilirubin levels usually peak at 4-5 days after birth so he could still go up in the next few days but eating and pooping will help clear that out too.  He did eat again this morning for about 20 min, no bleeding this time, and he pooped last night so those are good signs.  He is doing really well, and I love being able to hold and feed him, he just curls up in my arms.  I don't think daddy is going to hold him until next week probably.  He says he will hold him before his surgery but he thinks he is too big and rough to hold him, and the umbilical lines scare him.  They usually make me nervous in the beginning too but once we are settled they don't bother me anymore.  I am going to miss Nate this week but I will be glad that he will be able to get some rest at home at least a little more comfortable than here. 

Nursing Pro!!!

When we got back from lunch Greyson was awake so we got him out and I tried nursing him.  He didn't really have much to latch onto with just the nipple so I used the nipple sheild, like I did with Addison, and he latched right on and started nursing!!!  As soon as the milk came in you could tell he really started sucking and drinking the milk down.  After a bit he kind of spit the nipple out and the sheild had blood in it.  It was nothing to be concerned with it wasn't his mouth, I was bleeding.  He apparently wasn't done nursing after 15 min on the left side bc he was rooting around for more.  We turned him around and he latched on and ate for another 10-15 min on the right. I think little "Squeaker" is going to be a good nurser.  I am glad that he is good at it before his surgery it will be one less thing to learn afterwards, he will only have to re-learn it. 

Papa Gary took a cute picture of Greyson today:

  

Jaundice

The Nurse practitioner from neonatology came in and checked Greyson over a little bit ago, they are currently drawing blood to run a bilirubin level on him to check and see if he is jaundice at all.  Normally they will eat and poop things out so that will keep the bilirubin level down, but he isn't eating yet.  I am hoping he will be a little more awake today and we can get him to nurse, I definitely won't be giving up he will be breast feeding before we leave this hospital.  If his levels are too high then they will put him under the photo therapy lights and he won't be able to be wrapped up at all anymore, which will make him mad. 

10/8/2010

So I have started this blog so that friends and family can come here to get the latest updates on Greyson.  We do not get cell phone reception in the NICU so calls and text is out, sometimes they will stay connected to the wi-fi but not always so we are kind of limited on outside communication. 

When we met with the Dr's this morning we were told that we are still looking at doing his surgery in 7-10 days.  We will know more after the cardiologists and Dr. Fiore (Cardiothoracic Surgeon) meet and discuss the best plan.  We were not going to feed him until after his surgery bc there is a slight (3-5%) chance of him developing NEC which is a bacterial infection in his intestines bc they may not be recieving as much blood bc of his heart condition.  If we were to put the breast milk in his stomach he could have that chance of getting an infection.  Dr. Sadiq (Neonatologist) said I can hold him a couple times a day and encouraged me to do so, since it would benefit both my milk production and Greyson's bond and happiness, I was so thrilled, and scared, the first time I was able to hold my sweet little "squeaker" for the first time since right after he was born.  Addison and daddy took a nap on the couch and mommy and greyson stared at each other in the chair.  I don't think they are going to allow anyone else to hold him since it could be very bad if anything were to happen to his umbillical tubes.  While I was holding him the nurse told me that Dr. Sadiq had called and said he could nurse once per shift (twice a day) if he was awake and willing.  When we got back from dinner I tried nursing, he did put the nipple in his mouth and sort of mouthed it a litte, but didn't wake up to actually nurse, so we just hung out for a bit, of course he woke up as soon as we put him back in his bed.  His artery tube pulled out just a tiny tiny bit so they did new X-rays to see how far it has moved, since it does go up to his heart, but they didn't think it would be a problem.  I will post more after rounds in the morning (9-11am) I am sure quiet a few of you are coming up to see us tomorrow or Sunday and we can't wait to see you.

Greyson is Born!!!!!!!!!!!!

On October 5th I was having contractions pretty bad but they seemed to go away with rest  and I had been cleaning the house quiet a bit.  Then I had 6 noticable ones the next morning so I called Dr. Valastos office to see what they wanted me to do.  The nurse said for me to come on up there and get checked out since I was scheduled to be induced on Friday the 8th.  I called Nate and we went up there along with my mom and sister.  We called and Daddy, Gary & Teresa and Jerry & Kim all headed up.  We sat for 2 1/2 hrs in the waiting area just to be seen and found out that they just wanted me to be checked out not do the induction early.  When I finally got into the triage area I was having contractions and was dialted 4-5 cm.  They put me in a room and got the IV started.  My water broke on it's own at 7:02 and I decided to get the epidural after that.  Things went pretty slow from there, they put me on pitocin and checked me every 2 hrs.  I kept thinking I would go much faster like I did with Addison but things really took their time.  About 6:15-6:20 the nurse had come in and checked me, she said I was complete but he was still high so we were gonna give him time to come down to make pushing easier.  When she was walking out the room I felt the catheter go up and told the nurse.  She checked me and said he was right there, she got on the phone and got everyone into the surgery room for his delivery. Once we were in the room I pushed 6 times and he was out, I could see him come out and asked if he was blue bc he looked blue to me but they assured me that he was not any more blue than any other baby at birth.  They took him into the tiny NICU room and Nate went with him but they all had their backs towards me and I couldn't tell how he was doing.  I was worried if he had any other issues that we didn't know about but no one in there was telling me anything.  They said his shoulder looked sort of funky but they didn't think there was anything wrong with it and that he didn't have any other visable things wrong with him, no downs syndrome or anything like that.  Once I finally got Nate to look at me he gave me the thumbs up that everything was alright.  They brought him out to me and I got to hold my baby boy for the first time, I cried I was so happy to see him and see for myself that he was alright.  They took him to the NICU to get his umbilical lines in before his umbilical cord closed up.  I was taken back to my room with no baby but he was still in the same hospital.  About an hour or so later I was moved to my post partum room with another person.  I was more than ready to get discharged so I could go with my baby boy.  They brought Greyson by in the bed he was going to be transported in he looked so sickly and tiny it was very sad and scary. 

They transported Greyson and Nate and his mom and Gary and dad and Kim all went over to Cardinal Glennon to see Greyson when he got there.  I was left all alone in this room with someone else I didn't know and tired as can be but unable to sleep.  I wanted to be DISCHARGED and someone was gonna let me out.  I kept asking the nurses to get the Dr's in here so someone could let me go.  I was barely bleeding and didn't have any stitches or anything like that so there was no reason for me to stay.  They wanted me to stay at least 24 hours after he was born but that for sure was not happening, there was no way I was going to stay the night there while my son was 15 min away at another hospital.  I asked them to call in my dr who had told me that I could leave 4-6 hrs after he was born.  Finally about 5:15 he showed up, as I was making phone calls to make sure that if I left against medical advice the insurance would still pay.  He asked me when I had him and I said 6:30 am, he told the nurse that I could leave at 6:30 pm and that she better make sure I was out of here on the dot, bc he knew I was gonna leave then whether they were ready or not.  I was never so happy to get out of there and be headed back to put our family together again, even if it was in a hospital, we would still be together.

Today we went to St. Louis to meet with the Dr's up there.  We didn't get to meet Dr. Valastos bc he was over at the hospital.  We were asked why we didn't have an amniocentesis bc the results would have been helpful in dertermining his genetic make up to see if there would be any other surprises after birth.  This is something we asked about when we first found out about the heart defect and Dr Grant told us we didn't need it.  We are now wishing we would have gotten it done.  We asked the Dr's in St Louis if we could just see Dr Jones for all of our other stuff and they said that was fine and we would go there for our specialist care.

Today we saw Dr. Grant.  He told us at our last appointment that the baby, who we have named Greyson, could have downs sydnrome.  We have been worried about this for a while, but Dr. Jones did the 12 week ultra sound and blood work and everything was fine then.  So Dr Grant got with their office and found out that Greyson's chances of having down syndrome is 1 in 37,000 which is pretty much saying that he does not have it.  This is a huge reliefe. We will be having weekly ultra sounds and non-stress tests (where they hook my stomach up to monitors and watch for contractions and the babies heart rate) starting at 28 weeks.

Today we saw Dr. Pederson.  She said that Greyson has Double outlet Right Ventricle.  I will attach a picture of what she drew for us.  It is sort of hard to understand without the picture.  There is one surgery that they can do to repair it, if the peice of the whole is long enough, or there is another repair that they would have to go back in every couple of years to replace the tubing.  We are hoping they can do the first repair bc it would require less surgeries.  It will be easier to do the surgery on a baby then it would be for us to convince a toddler or little kid to have surgery again every few years.  We will see as thing progress.

Normal Heart:

 

Greyson's Heart:



No News is good news

Today we had our 20 week ultra sound.  We are having a baby BOY!!!!  We were so excited we told everyone and didn't pay a whole lot of attention to the rest of the ultra sound.  Dr. Jones was out of the office so we had to see Dr. welch which wasn't a big deal it was just a check up after my ultra sound...or so I thought.  Nate had some work he needed to do so he left after the ultra sound and me and Addison went over to see Dr. Welch.  We went right in and Dr. Welch told me that there was something wrong with the baby's heart and she was sending us over to get another ultra sound.  I called my mom to come with us bc I needed someone to sit with Addison while I got the ultra sound.  When I called her she said "Are you serious?"  I said Yes.  I called Nate to tell him about it.  He said "Are you serious?"  I just broke down and started balling when he asked me that.  He came back immediately and was there before the ultra sound really got underway.  We saw Dr. Grant and he said that there was a hole in the baby's heart and we would see a Pediatric Cardiologist from Cardinal Glennon on Wednesday.  That will make for an EXTREMELY long weekend

We found out about Greyson's special heart durign our routine 20 week ultrasound.  Boy did we not know what was coming.  We had expected to find out if this baby was a boy or girl and we sure did but we also found out that there was something wrong with the baby's heart. 

Three days later we had our first fetal echo in which we found out that Greyson had Double Outlet Right Ventricle with Transposition of the Great Vessels.  The prognosis was good, they would likely be able to do some surgery to repair his heart and that would likely be a Rastelli procedure.  A few months later we had another fetal echo and meet the heart surgeon Dr. Fiore who is awesome!  He told us that it looked like he would be able to do an arterial switch operation on Greyson a week or so after he was born and we would be able to take him home.  This was exciting news because it would be changing our sons heart back to normal anatomy. 

Greyson decided to come on October 7th, 2010 at 6:30 am. I was to be induced the next day but he apparently didn't like that idea. Luckily I had been having contractions for most of the day and we were at the hospital (2 hours away) when my water broke. I got to hold him for a few minutes before they took him to put his arterial lines in. He was transported to Cardinal Glennon Children's Hospital 15 minutes away and after some batteling I was released to go be with him 12 hours after he was born.

Right after birth

Snuggled in his "Time Capsule" in the NICU

Cuddeling with mommy in the NICU

After he was transfered they did an echo on him to get a better view of the anatomy of his heart. It turned out that he did have to two previously mentioned defects as well as pulmonary stenosis, sub-pulmonic blockage, and his tricuspid and mitral valves attached through his VSD. This took the arterial switch operation off the table. I was in tears when they told us that the new plan was to do an atrial balloon septostomy and send us home. We would then come back for two more surgeries over the next 3-4 years. He was going to have a modified Fontan repair, in which they do not do the Norwood. Greyson spent 2 weeks in the NICU total and went home 4 days after his cath (balloon spetostomy).

He was great and I held him all the time not knowing what this next surgery would hold. The surgery was finally scheduled for March 3rd (my birthday) I had wanted to wait until after his sisters birthday on Feb. 20th because I didn't want her to have to be in the hospital for her birthday (unless necessary of course). I took Greyson in to the pediatrician for his synagis shot and saturation check on Thursday and his sats were in the low 70's. We decided to come back in on Monday (after his sisters big birthday weekend) and recheck his sats. When we came in on Monday Greyson was hanging out in the mid-60's and would only occasionally come back up to 70. I called his cardiologist and he said to take him back in tomorrow to see if things were different. Not 15 minutes later I got a call from the surgeon wanting me to bring him up tonight and do his surgery tomorrow! I was floored but somewhat happy to be getting it out of the way. I still had the feeling of wanting to run away with him and never let anyone hurt him, but I knew in the long run I would be hurting him ;)

I ran home and packed clothes for all of us for at least a week, not knowing how long we would be up there. Greyson had to stay in the hospital the night before his procedure and was the first and only one on the books for the next day. He got to nurse the last time at 3 am and I remember feeling so sad that this might be the very last time he ever nursed.

On February 22, 2011 we walked him down to the operating area, carrying him in my arms. I handed him over to the nurse and he looked up and smiled at me as if to say "don't worry mom, I will be fine, I'll be back in a few hours."

The surgery didn't seem like it took to long and we had plenty of family and out little girl to help distract us. Barb was awesome about updating us every hour, even if there was nothing to tell. We got to see him that afternoon and he looked as I had expected. We spent a total of 5 days in the hospital before we got to go home. His Glenn surgery went off without a hitch, even if he had decided when it needed to be done.

Right after his Glenn Operation

Recovering in the PICU

Sleeping good!

3 days Post-Op.  He was smiling a lot but this is all he would let me get on camera.

Sissy brought him a new dinosaur toy and we just told him we were going home today!!!

One thing we have learned about Greyson is that things will happen on his schedule and no one elses. We still have that Fontan looming over our heads and we know that will happen when Greyson feels it should (the doctors are planning for next summer).

Such a silly boy!

Watching the homecoming parade!

1 year old!

I guess heart surgery makes you grow up really fast, doesn't he look so grown up in this picture?

Below is a more detailed list and pictures of Greyson's heart and the repair he will be having. 


Greyson was born with a Complex CHD which doesn't fit into a set catagory. Here is a normal heart for comparison.

This is the closest to what Greyson's defects are that I can find a picture of.  Below I will explain these defects.

 He has:

Double Outlet Right Ventricle: Both of the hearts outlets (Aorta-going to the body, and Pulmonary Artery-going to the lungs) come off of the Right ventricle.

Transposition of the Great Arteries: The Pulmonary Artery is supposed to come off of the Right Ventricle and the Aorta is supposed to come off of the Left Ventricle.  In Greyson's case both of these come off of the Right Ventricle (the left ventricle has no artery come off of it) but his are switched so the Aorta is further on the right and the pulmonary artery is closer on the left.

Ventricular Septal Defect (VSD): There is a hole in the wall between the two lower (ventricles) chambers of Greyson's heart.

Atrial Septal Defect (ASD): A hole in the wall between the two upper (Atrium) chambers of the heart.  Every single baby is born with an ASD but it closes shortly after birth.  I don't know if Greyson's would have closed on it's own but when he was 10 days old they went in through his umbilical vein and ballooned this so that it would not close.

Pulmonary Stenosis: Greyson has a narrowed Pulmonary Artery with a large peice of muscle blocking the amount of blood that can go to the lungs.  This is why he had to be on Propranolol (a muscle relaxer) before his open heart surgery.

Valve Issues: In Greyson's case his Mitral & Tricuspid Valves (the valves between the atrium and ventricles) attached through his VSD. 

Because of these last two issues they couldn't do a repair that would allow his heart to still have 4 chambers.  They were going to close the VSD, leave the ASD, and switch the two main arteries (aorta & Pulmonary Artery) and he would essentially have a normal heart.  Instead Greyson will have a Fontan Repair. 

Greyson had his Bi-Directional Glenn Open Heart Surgery on February 22, 2010.  During this procedure they detached his Superior Vena Cava (the vein bringing blood back from his upper body) from his heart and attached it directly to his pulomnary arteries, and detached the pulmonary artery from his heart.  The picture shows a shunt removal, Greyson didn't have this shunt removal because he didn't have to have the shunt put in that some babies do have to.  It also shows no right ventricle but Greyson does have a right ventricle and his Aorta comes off his right ventricle.

When Greyson is 30-35 lbs he will have the completion called the Fontan.  In this repair they will attach his Inferior Vena Cava (the vein that brings the blood from his lower body back to his heart) to his pulmonary arteries. The picture shows an artificial wall to make a chamber, since Greyson already has a right ventricle he will not have this wall, but will have an artificial tube connecting the inferior vena cava to the pulmonary artery. This will mean that his heart will only pump blood to his body and the blood returning to his heart will "drain" directly to his lungs.  He is and will always be on aspirin to thin his blood making it easier for the blood to return to his lungs.

About Us

Welcome to Greyson's Blog.  This is Greyson's Blog but also a blog about our entire family. 

I am 26 years old.  I married my wonderful husband, Nate on September 16, 2006 in Las Vegas, NV.  We wanted a wedding and honeymoon all in one without the hassle of planning everything so we had a beautiful outdoor wedding.  After a VERY quick engagement, we had been together   I text Nate one day in August and asked him if he wanted to go to Vegas next month and get married.  I was super surprised when he text me back and said sure.  And it happend quickly after that. 

We waited a year after our wedding to try getting pregnant.  It took us 10 months to get pregnant and in February of 2009 we welcomed our sweet daughter Addison Lynn.  She spent her first christmas in the hospital with a very bad UTI.  She is now on Antibiotics daily with the hopes that she will grow out of it.  When all this happened we thought it was the worst thing ever, little did we know.

Shortly before Addison's first birthday we learned we were pregnant again.  In May 2010 we found out we were having a boy, we also found out our son had a Congenital Heart Defect.  You can read his full story HERE.  We welcomed Greyson Dale on October 7, 2010.  We have been on quiet a journey with both of our children and have a long way to go.  We are so proud of both of them and wouldn't trade them or their "defects" for the world.