My little Heart Warrior

Hey All! These last few weeks have been pretty busy. First of all, the day after my last post, on July 4th, Dylan's G-Tube came out AGAIN! Ugh!!!   Luckily we caught it before it started closing this time and we were able to insert the "red robin" to keep the stoma from closing, and then rushed him back up to the ER. I'm actually quite pissed that he's only had the G-Tube a little over 6 weeks and it's already come out twice! I know that it would happen.. everybody told us, " It IS going to come out at some point" .......... but twice in less than two months?? AND both time's it was because there was a pinhole leak in the balloon of the G-Tube ..... We made and appointment with Dylan's G-Tube surgeon to check things out, and he says that the site looks good and he doesn't think it has anything to do with the insertion site ( we thought maybe there was a small suture or wire or something inside that could be popping the balloon). He said that sometimes they just get "bad batches" of the tubes. They taught us .... well we watched them take Dylan's out and check the balloon and then put it back in .... so now we can put his tube back in ourselves if it comes out again instead of taking him to the ER....... That's Joe's job ;-)   I'll do it if I have to, if Joe isn't here....... but if he's here......... He's doin it!

We also had an appointment with a nutritionist to try and get somebody to start working with us to adjust his feeds down to bolus feeds, since his pediatrician want's nothing to do with it. It's going to be a slow process, but at least its on its way. I can't wait for him to be without the tube!!! I know that he needs the G-tube right now to get all of this nutrition and gain the weight that he needs.......... but I HATE it. I hate that it comes out all the time, I hate having to watch how I pick him up, and make sure I'm not pulling on his cord. I hate having to carry the pump with us, I just hate it. :-(     Starting on the 21st of this month, we will be working with OT once a week on getting him to feed by mouth.... he doesn't want anything to do with it right now....... the minute anything is in his mouth that he has to swallow....... he freaks out and throws a fit.

We have a cardiology appointment tomorrow for a chest xray and for Dr. El Said to see him to make sure that he's ok ( he's been having some diarrhea and REALLY loose stools ) for his Cath on Friday. We'll check into the hospital Friday morning and he will have his Cath Friday afternoon. We will have to stay the night Friday night and if everything goes well, we will be able to come home on Saturday. I am extremely nervous for his Cath. I know that it's needed, and that its a generally low risk procedure......... but we all know that anything can happen, and seeing him intubated again is going to be really hard :-(

Other than that we've just been enjoying having him at home with us <3   We really haven't been putting him on tummy time as much as we should be because of his tube falling out and him just not liking it .... but .... he really needs it.... so for the last few day's we've been really good about making him do it..... He's doing so good!! We are extremely proud of him and how far he has come after everything that he has been through. Keep fighting little Warrior.... everybody's behind you!

Relaxing with his Wubbanub after doing such a good job during tummy time! <3

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 :-)