Holy Cow - It's been a long month!

Wow ..... Ok, so first of all, I realize that it's been over a month since I've written in this blog :-(    And I'm not going to start this one off with promising to be better at updating it.....  Because as you can tell, I suck at it!  I will do my best , because I want something for Dylan to have to look back on and read, but I guess I am still just having a hard time adjusting to everything and finding any "ME" time to do what I want/need to do. 

We brought Dylan home on Sunday, May 29th .........  and we were back in the NICU by Wednesday.  Our first night home with Dylan was VERY overwhelming. We didn't get discharged until around 6pm.  We had a two hour window to get him home and for home health to meet us at home to help us get his pump set up and re-start his feeds. Home health was about an hour late from the time he was supposed to be put back on his feeding pump, so that was the first thing to stress me out.  We got sent home with a whole box of his G-tube supplies and everything else that was in his room because it was just going to get thrown away anyway ..... so we had a lot of stuff to sort out and get organized, and in the middle of that we had to stop and meet with Home health and do paperwork and have her show us how to set up his pump and everything all the while Dylan is crying ..........  It's stressful enough bringing home a baby for the first time, but having to deal with ALL of that on top of it really had me on edge that night.  The next day was better ......... we were able to relax and try to get into our own little routine with him. ......... and then on Tuesday we had Home Health come back out and see how things were going..... and they were going great!   I think it was that night that I had noticed a little twinge of blood in Dylan's poopy diapers.... but he also had a horrible diaper rash that was bleeding so I wasn't sure if it was from that.  The next morning on Wednesday we had his first doctors appointment with his Pediatrician.  Dylan had a poopy diaper that I changed as we were leaving his appointment...... which seemed to have a little more blood in it...... I still wasn't sure...... I guess I should have said something to his doctor, but she had already left the room to see her next patient, and it didn't look bad, so I decided that I would see what his next diaper looked like and go from there.  By the time we got home Dylan had another poopy diaper.... this one had even more blood in it, so I called his Pediatrician and waited for her to call me back......... it was hours before she called me back, I think it was about 7pm at night ..... she happened to call me back right as I was changing another poopy diaper, so I told her to hang on and I would see what this diaper looked like ........... This diaper ..... Was pretty much half blood...... she told us to take him up to the ER right away.  We got to the ER around 8:00pm ....... they did all of their tests, did an abdominal X-ray and ruled blockages and everything else out.... they decided that it was probably formula related, but as soon as the NICU heard that "one of their babies"  was in the ER, and that it was Dylan...... they wanted him admitted back to the NICU :-(     Three days....... THREE days we had him home, and then we were back ..... we were back in the NICU for 6 days before we got to go home again, and it SUCKED.  I have to say that it sucked even more than the first 79 days that he was in the NICU.   Those six days were so hard because we finally had him home for a few days, and we knew what we were missing .......... we knew what it was like to wake up to him right next to us, we knew what it was like to just be able to sit on our couch with him without somebody watching over us.  Going home that first night after he was readmitted was horrible..... coming home to his empty crib and driving home with the empty car seat in my car had me in tears.  It all came down to his formula.  They put him back on Elacare, which he can't stand the taste of, but at this point, it has been the only formula that his stomach has tolerated, and he wasn't feeding by mouth anyway, so Elacare it was. 
We had Dylan home again for 7 wonderful days...... and then......... his G-tube fell out!  In the middle of the night.  The balloon had a leak in it, and it deflated in the middle of the night.  I got up at 6am to check on him, and I saw his sheet was wet and I felt his clothes and they were wet too ........... I figured he had peed through his diaper, so I got another diaper to change him ...... unbuttoned his jammies..... and there it was... his G tube... just sitting on his stomach .... blood and formula everywhere.  Great!!  I woke Joe up right away and told him Dylan's G tube fell out ........ I'd never seen him jump up out of bed quicker than he did that morning :-)   We did what we were supposed to do ....... we grabbed the red robbin and tried to insert it, but it wasn't going in..... the stoma had already started closing since it came out in the middle of the night/morning, and we weren't sure how long it had been out  ...... So we covered it with gauze and took him to the ER...... again...... ugh!  The doctor in the ER had to insert a new tube back in, and it was one of the worst things.  Dylan was screaming SO bad because she had to shove and twist the tube back  in since the hole already started to close ..... I cried right along with Dylan.   We were there for 2 hours and then got sent home.  I gave Dylan some tylenol as soon as we got home and he passed out for a few hours ........ but when he woke up, he woke up screaming .... and pretty much didn't stop all day ..... He was either crying or sleeping ......... and the only reason why he was sleeping was from passing out from crying so much ........ We gave him tylenol every 4 hours but it didnt seem to help any ........ the screaming and then passing out continued all day, and all night, and all day the next day.  Luckily we had already had a Post-op appointment the next day with his G Tube surgeon, so we went to that appointment and told him what happened and how he has been acting .......... and what were the first words out of his mouth?  "  I need you to take him straight over to the ER" ....... UGH!!!  Really??  the ER again?  :-(     He wanted us to take him over to the ER to get a G-tube study done to make sure that the tube is in the correct place, which apparently should have been done the day before when they put the tube back in before they sent us home!  Ugh!  So luckily the tube was in the right place ........  but because of Dylan's heart, Cardiology has to be notified and kept in the loop every time something happens with him ........ Soooo..... Cardiology admitted us back into the hospital :-(   We were there for 3 days and he was put on a course of antibiotics...... his CRP and his White Blood Cell count were high ......... so he had an infection..... we just didn't know where.  We all assume it was from his G-Tube falling out and being shoved back in.   We've been back home now for 16 days....... So needless to say.... It's been a very busy month of back and forth since Dylan was discharged.

Everything seems to be doing good now.  His G-tube site has been doing better. We're just waiting for the next step...... which is his Glen surgery.  We've been told to expect it sometime this summer......... so this month, or next.  We know it's coming......... and probably sooner rather than later, because we have seen Dylan's Sats declining.  When he first came home he was High Sating......... higher than they wanted him to be.  They want his Sats 75-85  and when he came home he was in the mid to high 90's.  They are now in the low 80's for the majority of the time with moments of them dipping into the mid 70's .........  and the low 60's when he is upset.  We have a sedated Echo and EKG scheduled for him this coming Friday on the 8th, with his Heart Cath to check his heart function and pressures the following Friday on the 15th.  This will give us more of an idea on when they will plan to do his next heart surgery.

Eating is still an issue ...... We finally got the OK to start working with OT with him on feedings.  We had an appointment with ENT to check his vocal cord paresis and it seems to be working again ( We could have told them that) so they ordered another Swallow Study, but gave the OK to start working with him on some tasting with the bottle.  We had our first appointment with OT last Thursday.  For those of you who don't know what EleCare  (the formula he is on) is ...... It's a special prescription formula that is already partially digested so that it's the easiest on a baby's tummy ........ soooo essentially, its throw up ..... and believe me........ it SMELLS like throw up ..... So I can only imagine what it tastes like. YUCK!   Dylan was on EleCare before in the NICU after the first time he had some bloody stools from another formula and he handled it well ........ the only thing was that we noticed that he eating had slowed down and pretty much stopped after they put him on that, so we assumed it was probably the taste that he didn't like, so when they were talking about the G-tube because he wouldn't eat, we begged them to try a few different better tasting formula's first to make sure that he isn't just not eating because of the taste. They tried a few different ones, but nothing worked.  They didn't really give him a chance really .... they tried a few times and he wouldn't take it, but then again he was only a few days Post-Norwood...... i mean COME ON people!  You wouldn't wanna eat if your chest was cut open and wired back together just a few days ago!  BUT ....... they insisted on doing the G-Tube because he wasn't a great eater before the surgery either, and they said that if we stayed until he was eating it would be another few months in the NICU ........ and if we got the G-tube we could take him home and just continue to work with him at home........ So thats what we decided to do......... did we make the right decision?  I don't know ..... but... Dylan is home now........ with a G-tube.... so that's what we have to work with.   When we had our appointment with OT to evaluate him, she couldn't tell if he wasn't taking it from the bottle because of the taste or because he doesn't like the liquid in the back of his throat....... So today I decided to try to give him some water in the bottle... just to see if it was the taste of the formula, or the liquid that he didn't like......  And.....  I'm pretty sure its the liquid and the whole swallow thing that he doesn't like.  He does fine sucking on his pacifier.... but as soon as he sucks and there is something that he has to swallow, he throws a fit.  I guess we'll just have to keep working with him on it ....... he'll get it eventually. Right?

 So there you have it.   That's the full months update! haha .... I know, I suck. I'm sorry ........ I really do mean to keep this updated, but I get so overwhelmed that it's the last thing that I think of.   But I'll try to do better....... like maybe once a week instead of once a month! :-)

Here are a few pictures to hold you over until the next update :-)

Dylan's first night HOME <3

Dylan after his first REAL bath <3

I love how we taught him to hold his Paci <3

Sleeping on Mommy's chest <3

Dylan with his Cousin and his Auntie <3

Tummy time... and he hates it

Such a big boy holding his head up! <3

Dylan with his cousin Gianna

Dylan with his cousin Joseph

" Take a picture of me with Baby Dylan!"

She loves him so much <3

Dylan playing " Where's Dylan?"

Our little big family on Fathers Day <3

D - Day!!

Discharge day!!!  I can't believe that day is finally here!! Well ..... kinda... tomorrow is close enough!  They started preparing us for discharge about a week ago. Dylan went in for his G-Tube surgery last Friday, and they told us that he should be good to go 5-7 days after surgery.  Wow!!  Really??  We're good to go??  Only 2.5 weeks Post - Norwood,  and we're good to go??  YAY!!!!!!!   Dylan is such a strong little boy!  He would have been ready to go home a week ago if he wasn't having the eating issues and the vocal cord issues that he is having. During the G-Tube surgery, the surgeon told us that Dylan has quite a small stomach, it's 2/3 the size of a "normal" stomach, so therefore, his feeds need to be adjusted to take that into consideration.  His tummy is to tiny to handle bolus feeds right now, so they are sending him home on continuous feeds.  I'm not very happy about that just because that means that he's still tied to a tube and pump for 20 out of the 24 hours a day........... BUT..... he will be HOME, so that's all that matters! :-)

It's been a very busy week for us since we learned that he would be getting discharged soon.  We didn't have ANYTHING ready... we knew that Dylan was going to be in the NICU for awhile, so we knew we had time to get everything done. So last week we started ordering everything, his crib set, his dresser, the gliding chair, getting all his diapers and wipes and everything he needs.  It was SO exciting and stressful at the same time!  It was stressful because while we were trying to get things ready for him at home, we still had to be at the hospital learning all of his G-Tube stuff and how to feed him and take care of him. 

Joe did such a great job with everything, he put the crib together, the dresser, the chair, and got the stroller and car seat ready.  Everything is set.  I picked up all of his medicine today, and Dylan got his shot's the other day, passed his hearing test, and we also did the car seat check, which he passed.  They delivered all of his G-tube supplies and his Pulse Ox machine to the room and instructed us on how to use them, and all of his doctors appointments are set up. Everything is good to go!!!  All we need now is Dylan! <3

We are happy, nervous, scared, excited.  I hope I don't mess up, I hope he likes being home, I hope he adjusts well....... I hope I adjust well.

Tomorrow is the day!!!  I'll post when I can, but I know that the first few days of him being home are going to be us adjusting and making our own routine........ and just us loving on him without vulture nurses hovering around our heads.  It's going to be great!!!

Dylan's ready to come home!!! <3

Swallow Study

The last few days have been really hard on Dylan.  He's been put through so many tests.  Two of which were an Upper GI which came back with everything ok, and a Swallow Study.  The Swallow Study shows that he is not aspirating into his lungs when he drinks, so that is a good thing.  His suck and his swallow, however, are really weak. He's going to need a lot of work when it comes to feeding.  The test showed that he was not aspirating when he drinks, but they are still worried about him aspirating because of his bad reflux, they said that aspiration is still a concern when it comes to that, so that is something we need to watch for. 

I am really nervous about him having a G-tube and everything that is involved with it. We really haven't been told anything or shown anything yet because we have not yet met with the surgeon, but I looked it up a little last night and watched a few videos and I'm really overwhelmed.  I know that they will teach us, and that its probably not as complicated as it looks.  And I know that it's what needs to be done to get him home.  He needs to come home.  He's already been in the hospital for his whole 10 weeks of life, and these feeding issues are the only thing that's keeping him there right now.  He's already a little behind developmentally from being in the hospital his whole life, so we need to get him caught up and be able to work with him without all of the wires and tubes and IV's connected to him.   I think once we get him home, he'll do a lot better...... He'll be able to spend all his time with mommy and daddy, and be able to take real baths, and do real baby things.... that will make him feel so much better <3

I'll post more after we talk to the surgeon and find out more about the G-tube and everything that comes with it.  As of right now, his surgery is scheduled for tomorrow at 3pm, and that is all we know.

Thank you for your continued support of my family.  We really appreciate all of the love and thoughts.

Heart Hugs to all!
<3

The G word

Today has been a very emotionally torturous day for Joe and I, and a physically torturous day for poor little peanut.  It all started this morning at 9:30am when I got to the NICU to see peanut, and I had to wait outside for a little bit while they were removing one of his chest tubes.  After I was finally able to get in to see him, and not even five minutes after I was in the room one of the nurses from the surgical team came in to talk to me, she said that his heart is looking good..... however.... she's going to have ENT people come and look at him and do their tests, because she is concerned with his Vocal Cords.  Crap!! ...... Ok ....... we can deal with this... we were warned even before he was born that sometimes "things happen" during heart surgery since everything is so close together.... we were just hoping that we wouldn't have to deal with that.... So I swallow and digest that as she's walking out of the room.....  only to have Dylan's cardiologist come into the room not even a minute later, and inform me that they are going to put him on the schedule for a G-tube... she said that it can take over a week to get a surgery date for the G-tube so she wants to put him on the list for a date, and within that time if he can prove that he wants to eat then they can cancel the date..... Ughhh..... Ok..... We can deal with this as well right?  I mean we knew before Dylan was born that him going home with a G-tube was a very high possibility..... but its a little different knowing that its all a possibility..... and actually having it be a reality.   After our talk the Cardiologist walks away and I got to spend some time with Dylan.... and about 40 minutes later, the cardiologist comes back in and says " Ok.... So I just talked to the doctor who does the G-tubes arthroscopically, and he told me that he has an opening on his schedule for this friday....... So I told him we'll take it" ....... Wow....... Ok..... Crap!  Having all of this information about his possibly Vocal Cord paralysis and needing a G-tube, and wanting to have it done this Friday, thrown at me all within the span of  about 2 hours really stressed me out.  The rest of the day was spent holding Peanut's hand and trying to calm him down while he had X-rays and breathing treatments, and the ENT people sticking their cameras down his nose and his mouth.  Our poor little guy was not a happy camper today. :-(

And at the end of the day.... what are the results from all of the tests?? 
Dylan has a paralyzed Vocal Cord.  His left vocal cord is not moving at all.  His poor little voice is so quiet and raspy. They are not sure if it will ever start working or not. They say that it is not effecting his breathing, but it is a problem with his voice and his feedings right now.  They ordered a swallow study to make sure that he is not aspirating into his lungs.  Those tests should be done tomorrow afternoon and hopefully we'll know more tomorrow.  We are also supposed to be meeting with the doctor again about his G-tube so we can get more information about everything before Friday.   I'm really sad about Dylan's vocal cord....... his poor little cry sounds so sad right now :-(   I really hope that his voice improves.  I'm not a big fan of him having to have a G-tube either, but if thats what has to happen in order for us to take him home, then I'm game.   His feeding issues are really the only thing that's keeping us at the hospital right now.  His doctors tell us that he is doing great and his heart is doing really good.... and that it's time for him to go home.   So with all of this bad news about his vocal cords and the G-tube today, I know that I should just be happy that his HEART is doing good right?  All of the other stuff is just either temporary or not life threatening...... The main thing is that his heart is performing as it should at this point and we get to take him HOME!!  Yay!!!    If he has the G-tube put in this Friday, they say recovery is about a week and then he should be good to go........ meaning that we could be taking peanut come within the next couple of weeks!!   I can't wait for that day!!

I'll post more tomorrow after his swallow study and after talking to more of the doctors about everything.  Please keep Dylan in your thoughts....... he still needs your love and support <3

One of my favorite pictures of me and the little man on Mothers Day <3

Asking the questions........

So I just have to say that I am glad that we were able to find out about Dylan's heart way before he was born. It gave us time to somewhat prepare ourselves, and to educate ourselves a little more on the heart and to get some of our questions answered. Although, I do have to say, that no matter how much you try to prepare yourself...... you're still really not prepared for the NICU and hospital life. It's a whole different world, and a whole different way of raising your child.  Dylan has been in the hospital for over 9 weeks.  He looks like such a big boy now...... he no longer looks like a newborn, and that makes me sad.  I feel like I've missed out on a lot with him. I know that HE doesn't know any different, and he doesn't know that life is NOT supposed to be like this...... It's just hard on me, because I do know that life isn't supposed to be like this... he's not supposed to have to go through the things he's gone through and is going to have to go through in the future.

We've met a few families while we've been staying at the Ronald McDonald house this time. I think its because we are a little more used to the way things are now, and have kind of accepted that this is what life with Dylan is going to be like. I feel so lucky to have had Dylan in my life for the last 9 weeks, and I wouldn't change it for the world. He has such a feisty little personality. All of his nurses love him, and some of them even come and check on him every day/night, even when they don't have him as their patient. He always has such a confused/concerned/grumpy look on his face :)  I love it! <3  and i can't wait to take him home so I can dress him in all of his clothes that are at home waiting for him. :)

I think I've kind of got off the topic of why I wanted to write this post.......... What I was trying to say is, that I am SO glad that we found out about Dylan's heart before he was born.  We've met two families here who's babies have had HLHS, and HRHS, and they didn't know about it until after their babies were born. I couldn't imagine not knowing beforehand.  As much as I tried to prepare myself before Dylan was born, and to try and figure out what questions to ask, I was still NOT prepared for this life after Dylan was born.  I was still in shock, and still intimidated by some of the doctors and nurses, and didn't really know what questions to ask.  It took me a few weeks, to find my place, and stand my ground, and to know what questions to ask.  It took me awhile to be able to do that, and I had prepared myself for all of that beforehand........... I can't imagine having to learn how to find my place, while also trying to educate myself about my son's condition at the same time. HLHS is something that people just don't know about unless they are told about it. It's not something like Cancer that EVERYBODY knows about.  Unless your child has a heart condition themselves or you have a friend or family member who has it, chances are you don't even know something like this exists. You don't even know or think about the possibility that babies are basically born with HALF a heart.  You don't even know how many babies are fighting for their lives every day.  I didn't know........ My nephew was born with a few holes in his heart, and I STILL didn't know......... I didn't know that there are heart defects that can not be fixed.... that can not be repaired....... Well I know now...... boy, do I know now. :-(

I still don't know all of the questions to ask........ but I sure do ask a lot more questions than I did in the first few weeks.  And I have to ask the same questions over and over...... questions that you think you wouldn't have to ask.  Two days ago they told us that they were concerned that Dylan might have an infection, because his white blood cell count was high. They started him on antibiotics, and took all of the tests and cultures.  We were told that they would take 24 hours to come back. Every time we would go in to see Dylan, I would ask about the results from the cultures, and every time they would say they are not back yet. I called this morning, which is 2 days later, and again, I asked about the results, and the nurse informed me that he DOES have an infection. The reason why I am upset about this is because I got the feeling from the way the nurse answered my question, that if I wouldn't have asked again about the results, that they wouldn't have even told us that he has an infection.  And I feel that way because this is the answer that I got from the nurse this morning when I asked "  Oh.. yeah... the respiratory test did come back positive for infection.......... but it doesn't matter, because he's already on antibiotics" .......... Really lady??  " It doesn't matter" ????  Wrong!! It DOES matter..... EVERYTHING matters when it comes to my Son!    The nurse seemed annoyed that I was asking all of the questions that I was asking over the phone....... So I think I'm done writing on the blog for now..... I think I'll get dressed and go over to be with Dylan, and annoy the nurse with even more questions.  :)

I'll leave you with one of my favorite pictures with Dylan......... He looks even more handsome without all the tubes on his face :)   Can't wait to take baby boy home!! <3

Post Norwood Day 5

I'm sorry that I've kept everybody hanging.  Needless to say it's been a very busy week. I am happy to say that Dylan is doing really good!  His surgery took place last Tuesday, May 10th, 2011. We got to the NICU at 6am and sat with and held Dylan for awhile before they took him for surgery at 7am. It was a VERY long day. We got the page on our pager to return to the NICU waiting room at 1pm and that Dylan's surgery was finishing up and he should be back in the NICU in an hour.  My parents came down and sat with us in the waiting room waiting for Dr. Lamberti to come talk to us.  Dr. Lamberti said that he was "very happy" with Dylan's Pulmonary Arteries, and that his Aorta reconstruction " is fine", however, Dylan was having some excessive bleeding that might require them to go back in and do exploratory surgery if it doesn't stop on its own.  Luckily it stopped on its own! :)   After about 30 minutes, we were allowed back to see Dylan.  It was very hard to stomach seeing him like that......... especially since we had so long to see him and his personality and to hold him and love on him before surgery. Even though I know that this is another step towards being able to bring him home, it was still hard to do because seeing him intubated and having all of the tubes coming out of him again seemed like a step backwards.  Dylan has had some ups and downs, but nothing that he couldn't handle. Overall he's doing great and headed in the right direction.  I REALLY need to get better at this blogging because it's hard to remember everything that's happened in a week.  I think that I'm going to try and post every night before bed, no matter how tired I am, even if it's short. 

Even though they have had to keep Dylan sedated for most of the time, his little feisty personality still shows through, when they go to take his temperature, or they touch his legs to check his pulse, he squirms and fusses and gets angry. One of the biggest things that I was waiting for was to get him off of the vent. I hated seeing him intubated because he would try and cry and scream and nothing comes out....... it's the saddest thing ever. They took him off the vent today, and so far he's doing great!  He's still got two more chest tubes to get removed, but hopefully those will come out soon.  They disconnected his pacer wires since he has not had to use them, they are still connected to his heart, but those should come out soon also.  Now that he is off the vent, they are going to try and start feeding him a little bit to get his bowels moving again.  I can't wait for the other tubes to be removed and for when we can start holding him again............ thats all he want's.... he wants his wubbanubs, he wants to be swaddled... and he wants his mommy and daddy to hold him.  Once he can have all of that, I'm sure his recovery process will speed up :)  

It's late for me, and it's been a really long day/night... So i'll leave you with the promise to try and do a blog entry every night ( or every other night) ...... and with a picture of a newly extubated Dylan! <3

Waiting..... Waiting..... Waiting.........

Waiting...... waiting..... waiting...... that's all we're doing today, and pretty much what we did for the last week.  Last Tuesday we got Dylan's surgery date for his Norwood Operation.  That gave us a whole week to freak out about it and was pretty much all I could think about the whole week.  That day is here. Dylan's surgery started this morning at 7am with an approximate completion time of 2pm.  Although I was scared out of my mind for Dylan to have his surgery, I knew that it couldn't wait much longer........ it was getting harder for him to breathe, he was sweating like crazy, he was grumpy, and he was just ready.  So now we wait.......... which is pretty much been our life for the last two months.... except for the last two months we've been waiting for Dylan's next surgery ....... and this time, we're just waiting for him to recover so we can take him HOME!!  Yesterday we met with one of the members of the surgical team to go over the procedure and sign the papers, and then spent the rest of the day/night with peanut.  Surgery time was set for 7am and he is the only one on the schedule today, so that made us feel better to know that Dr. Lamberti isn't on a time schedule today and to know that he wouldn't be rushing to get to the next surgery.  We woke up this morning at 5am to go across the street and be with Dylan for awhile before they had to get him ready for transport. I held him for about 10 minutes before they had to take him from me......... I was doing a good job of fighting back my tears until they took him from my arms...... Dylan started crying too ......... I know that it was because the lady who took him had REALLY cold hands ( Dylan doesn't like anything cold touching him) ...... but I like to think that it was because they took him from mommy's arms :-)  

We followed them downstairs to the OR prep area and met with the anesthesiologist ..... she called herself Dylan's sleep doctor... and signed the papers, and then off he went. :-(    It was SO hard to watch them take his crib away through those double doors.   That was 5 and a half hours ago ........ we have an hour and a half to go! So we're just waiting...... waiting......... waiting.........


Poppo came and took some pictures of Dylan, Joe, and I on Mothers Day, which I will do a post on later, but I'll leave you with a few pictures of our Happy little family <3