The Details

I figured I should writer a more detailed post of what went on this week not only for my readers but for myself as well. I want to tell Aiden about all of this later and wan  to write it while it is still relatively fresh in my mind.


On Monday night I dropped Connor off of at Grandma's since we needed to get to the hoe early the next day. My big guys nerves were on edge ans he ended up throwing up. This was definitely rough on him! He continued to complain about being sick until we all got home. He's fine now!

After dropping him off we went to bed early since we needed to be up at four. A had different plans he decided to ask  up at one wanting a bottle at that point he coil  only have clear liquids ans when I have them to him he was mad. Daddy ended up sitting with him the remainder of the night while I tried to sleep. Needless to say we did not get much sleep. I got the most so drove to the hospital that morning. Took an hour and half to get through pre  open. A was overall calm the whole time. We did have some surprised nurses when they learned he was set up for both a Cath and possibly surgery after. Apparently that's not normal.

Now the main reason they were unsure if a Cath would work is because he is such a little guy and the hole is really big. Dr Grey felt there was a good chance to fix the hole and wan to try. He was taken back at 7:45 for the Cath. He was very calm the whole time and did not cry when I handed him over to the nurse. His calmness helped this mom a lot! We were given a beeper and after eating headed up to the waiting room. The Cath was actually pretty fast the beeps went off just before ten.

Cardiology appointment

Tuesday was little A's cardiology appointment, my mom came with me for this one and I am glad she did. The morning started out ominously. It had snowed that morning and we barley made it due to three car accidents on the way. When we finally got there a few minutes late we were first sent to have his chest x-ray.  After the x-ray we went back to cardiology and he was taken  back to have a sedated echo.

We were told the medicine would make him take a nap. If only he wasn't so stubborn I imagine that would have been true. But he fought it a lot.The medicine was given by an IV in his hand (his poor little hand is still bruised). He would start to fall asleep and then would start skipping breaths causing his numbers on the monitor to drop, we think he was scared I could not stand next to him, not enough room. He would then start to scream his head off after. They did give him oxygen and had a mask an bag ready to go if he kept doing it. He did on and off but they never did need to use the bag. He also kept kicking up one of his legs, the one that had the blood pressure cuff on it. he didn't care for it at all. When that little leg came up it was hard not to laugh a little. It took at least an hour for them to get all the images they needed. During that time the did a four point blood pressure check and an ekg.

We were then sent up to recovery to have him monitored and make sure the drugs in him were not causing anymore problems. They wanted his oxygen levels to not drop for at least a half hour. I held him the whole time we were up there and he slept peaceful, no fighting just slept with no dips in his levels. If only Mommy could hold him during his echo it would have been much easier, but I could not.

After an hour he was released and we headed back down to Cardiology to talk with his Doctor. By this time we had already been at PCMC for over4 hours and had not been able to call anyone with an update. The cell phone reception in that building is awful. After waiting for a bout a half hour the doctor finally came in and talked to us. Aiden's coarc repair is good no more narrowing! The good news unfortunately ended there. The hole in his heart (ASD) has gotten bigger and it is restricting his growth. Because of this they want to have it repaired before the end of this year. In the past I was told it could be repaired by a heart cath but not anymore, its to big.  he will need open heart surgery sometime later this year.  his doctor is getting in touvch with the surgeon who repaired his heart the first time to set up a date. maybe next week, not sure when we will find out when it is to be done.

He also has a hole in his neck and a bump caused by the surgery we are going to see a dermatologist and this should hopefully be fixed at the same time as his heart surgery.

We have not told Connor much about this yet, but he knows something is going on, just last night he started crying a lot. After probing him he finally said he didn't want Aiden to go back to the doctors, he really loves his brother and this is going to be really hard on him. I'll admit I have not been very happy since learning about the surgery I knew he might have needed one but not for a few years and no OHS. I am trying to get used to the idea that he has to have more surgery and could be up there for a week. I feel like I got hit by a truck earlier this week, just in shock.

6 months post op and genetics

First off yesterday marked 6 months since Aiden's surgery. His sacre looks so good!

Hardly noticeable right? I forgot to mention that the night that he turned 6 months he started rolling from his tummy to his back. He can now roll both ways! Way to go little guy!


We went to Primary's so he can be seen by the genetic cardiologist group. 30% of kids with heart defects have genetic issues. They don't believe he has any. They kept going on about is eyes being farther a part then normal. I told him he may look like a little white boy but there is Hawaiian and Asian in him! They don't want to see him again. There worried about his slow weight gain. I'm not hes growing! He know weighs  pound  ounces and is 24 and a half inches long.

I went and looked at photos of Connor.

Eyes look the same to me width wise.

Was going to write more but both boys are up and its now much harder to type lol.

I hate his cardio appointments!

We had a birthday party for Connor, I plan on posting pictures of it on his birthday so stay tuned for Wednesday!

Preview to future post

OK today I took Aiden to see the cardiologist and let me just say I was worried about it on edge. the whole bit and my feelings turned out to have some baring to them. Got there and waited until they had a room and was taken back. They first took his blood pressure. Took some time for them to get it because he did not want to stay still. I basically had to hold his leg so they could get a reading. After that they checked his height... they didn't tell me what it was and then weight. They said he weighed 11 pounds 15.9 ounces... why they can't just round that to 12 is silly! Guess they know I want him to hit that so lets have him be just barely under it, like if he drank two more swallows of milk he would've registered as 12.

Ups and downs of a heart baby

Its been a week... to put it mildly. There has  been some good stuff and some not so good stuff. No clogs at least. Well OK it was clogged Monday but I got it unclogged so yay no runs to PCMC. Tuesday Aiden started to drink from a bottle.

Which is the best of news I can say. That was the biggest hurtle to get him through now we just need him to slowly drink from it more and more. He had two doctor appointments this week. the first was a regular weight check, he has one every 2 weeks. he know weighs 10 pounds 10 ounces and so gained 5 ounces in the last two weeks. yes he is gaining weight slowly yes he is almost three months old and still fist into newborn clothes. Do I care no he's my little smiley buddy so its fine. The doctors are not worried about it they say hes gaining weight and that's all that matters! So if there not worried about it I won't be either.

No more clogs.... please?

Sp these two put me through the ringer this week. I'm tired of ER visits lets just start by saying that. Those who are friends on my facebook didn't get the everything that happened I didn't post about one of our trips.

Tuesday night Connor who gets constipated from time to time got bad with it. he was jumping up and down screaming in pain. It came to the point that yes we headed to the ER He hadn't gone potty since Sunday night and even that one had been a lot of work for him. So were waiting for the Doctor and he's in pain and keeps saying the Doctor will help me over and over and we kept saying yes they will. Well he starts jumping up and down again crying in pain and... poops about 5 minutes before the Doctor comes in... yeah. So she comes in and checks.. no more blockage. were given some advice to help him in the future and discharged after being charged the Er copay.

Swallow, clog, trip

The 16th ended up being a very long day. Its started off with Little A's swallow test. it was hard to watch, last time he had done so well with the bottle I had assumed he would have no problem with it this time. Unfortunately I was wrong. Him throwing up stomach acid the other week really pushed all of his accomplishments back. He simply would not take the bottle and swallow the fluids. They ended up pippetting the fluid into his mouth he did not pass for thin fluids but he did for thick fluids. So I can now give him small amounts of thick fluids by  mouth. Hopefully with work I will get him to start drinking from a bottle so far he hasn't but were working on it.

2 months

Technically little A isn't two months until tomorrow but I figured it was close enough!

Stats: As of Wednesday (9th) my little guy was 10 pounds even and 21 and a half inches!

Feeding tube fun.

So I've gone back to work and that's made it hard for me to update my blog, just isn't enough time in the day! I'm getting on my computer maybe  three times a week for a half hour or so. Basically go on to get things taken care off then I'm off again. Going back to work hasn't been great at all, don't won't to go into it just *sigh*.

Notice anything different in this picture?  Yes his feeding tube is on the other side, lets just say that was fun... not. So Sunday night we are over at my Mom's house and I go to change his milk and when I try to start it its says no flow in. Turns out its clogged we tried everything but could not get it to unclog, been able to get it unclogged in the past. So at about 6:30 we kiss Connor good bye, thankfully grandma and grandpa were able to watch him yay, and head to Primary Riverton. The only area opened that night was the ER.  So 4 hours later and three attempts at declogging the feeding tube, plus a big copay ugh, we were told that they could not replace the feeding tube there and had to go all the away up to the U, about an hour drive from where we were at.  we were not happy about that at all.. why it took that long to tell us we had to go somewhere else was beyond frustrating.

Thats 1!

Yesterday was a long day at Primarys. Little A had two appointments one at 8:15 and the other at 1:15 (I didn't set up the appointments the hospital did and yes I did end up waiting around).  When we got there they sent us to x-ray and they did an x-ray of his chest to see if he still had some fluid in his chest. Guessing he did not because he is no longer on lasix, the medicine that was getting rid of excess fluid on his lungs.

Next I went back to the waiting room until we were called about 15 minutes after sitting down. His blood pressure was checked and pulse ox. It was near 100 percent and I was asked to turn of his oxygen after I turned it off there was no change in his saturation levels! Because of that he no longer needs oxygen. so yeah a step in the right direction! He also had an EKG which he did not like. Tons of wires all over his body worst part was taking the sticky pads off of him after they were down. He screamed big time after that! Don't blame him that had to have hurt.

His incision area is healing nicely and I've been told he can now be submerged in water, which I'm not going to do quiet yet. I want his neck to be a little stronger before I start doing submerged baths! As soon as that appointment was over, little after 10 I headed to straight to the car to dump off the very heavy oxygen tank which will be picked up sometime tomorrow. No more oxygen tanks in the house yay! I soon will be able to use all lotions and Vaseline again! Your not allowed to use anything with oils in it when baby is on oxygen. Cardiology wants to see him in about 2-3 months and they can see him at the Riverton facility, which is much closer to my house yay!

Taken on the way back into the hospital.

Home

Ok took a few days off of the blog. Saturday Connor got to see his brother again. So far he has been such a good kid with him! Also my aunt Becky and my cousin Mandie did a quick visit.

While there the nurse mentioned that little A could be coming home on Sunday. So my parents left with Connor and we stayed around to do some training on his feeding tube.

Big day

I am very happy to say that my little guy has been moved out of the ICU and up stairs to where they start preparing the little ones to come home :). I was beginning to wonder if he would ever be moved but he has been! I must say it was very strange not going to the CICU.  Felt much more comfortable in his new room, not so much on display on now!

Really do not have that much to write about today they did the swallow test and it came back inconclusive so there going to do more testing before they try to bottle feed him. only other thing is he's still on oxygen.

Guess the only other thing I can write about is some people say the most stupid things around me. Like you  should count yourself luckily that hes in the hospital you can sleep at night...... wow really? My response I still wake up at night and I would give anything to be woken by a crying baby over my stupid cell phones alarm!  I've end up crying many times in the middle of the night because hes not there.

:/

Every time I get my hopes up it gets smashed into a million pieces. I feel in such  a blur right now. I get up earlier, pump  go to work because if I don't I'll have no time to spend with my Aiden when he gets home and everyday there is a set back means I have less time with him after he gets home :(.  I know I need to wait for when hes ready but so many days of big steps back beginning to wonder if that day will ever come.  So if it isn't obvious yet my little one did not get moved upstairs.

His potassium levels are high and he is occasionally breathing fast which has them concerned. He was off of the oxygen when I got there but they put him back on it. I think the breathing fast is just him hurting from gas, cause they can't find anything wrong with x-rays and when I was holding him he would occasionally breath fast and then act in pain after. They did not do the swallow test because of his quick breathing so still has a feeding tube. They said there's a chance he could end up coming home with the feeding tube and oxygen will see.

Sorry just down right now this Mom is a bit worn out right now.

2 weeks

My little guy is 2 weeks old today and well so far I do not have much to report on from yesterday. all of his continuous IVs have been removed.  He's still on oxygen but not much and he still has a feeding tube and that is running continuously with breast milk with added fats in it. they are apparently trying to get his weight up. He will not be getting rid of that tube yet. tomorrow they are going to do a swallow test. apparently the surgery he had there is a nerve near  the aorta that effects how you swallow that can become swollen after surgery and may need time to heal before he can start drinking from a bottle again. Here's hoping he passes!

I've been told he may be moved to the third floor tonight, but I have yet to hear if they have or not planning on calling in a bit to see. Best part of the day I got to hold him! though Daddy beat me to the room and held him first, which was good he had been to  chicken to hold him before the surgery, the IVs made him nervous.

He did eventually hand him over to me and I must admit I was a little on edge holding him today. Seeing his healing cut on his chest made me nervous to hold him! I didn't want to hurt him and didn't help he was being a little grumpy because he kept sneezing and you could tell it hurt. That and he was gassy as well which was also uncomfortable for him. we also did the CPR class. It was a video and a baby dummy. Which is our to keep. So yes we know have a CPR baby dummy.  And lastly a photo hubby just HAD to take :).

live long and prosper

Oh and I called and looks like he isn't being moved tonight, guessing tomorrow he'll be tken out of the ICU.

Baby sounds

 Oh what another great day for my Aiden. As soon as I came into the room I was delighted to see my little boy was no longer on his ventilator! Each day he looks better and better! He's off most of his medicine and been weaned off the rest. They say it'll be two days before he can be moved upstairs and prepared to come home.

Best part they told me tomorrow I can hold him! they didn't want me holding him today becasue he had only been off of the vent for a short period of time and did not want to push him, which I completely understand. he needs time to adjust. I don't want to do anything that will push him back and not forward.  He was also the most alert I have seen hims so far. he looked around yet and cooed and cried. most beautiful sounds I heard from that room in sometime. It had been so strange to hear nothing in that room while he as on the vent. His little cries were wonderful to hear! So yes Momma is happy.

While I was there he eventually fell asleep and held tightly to my finger the whole time. It felt so good.

Progress!

Were getting much closer to being moved upstairs! Only two things stands in our way, one I didn't know about until today *grumbles under breath*. The first is Aiden getting off of the ventilator and second hubby and I have to do a CPR class before he can be moved. Why they waited to tell us until he had been there for 12 days? I really don't know. We both have to be there to do it and hubby is working full time now and thankfully was already planning on coming up Wednesday and working a half day so we can do it then, but it means Aiden can't be moved until after we do this. kind of annoyed becasue we were both there over the weekend. They couldn't mention it then? *sigh*.

So I got there just in time to see a lot of stuff done on my little lion. He already had the monitor on his forehead removed but they removed all the wires and chest tube while I was there.  he's fully closed up and the catheter is gone as well! they also removed the bandage covering his incision. Its quiet long but it looks to be healing well.

I held his little hand while they were removing the wires you could tell it was hurting him and if he could have cried he would have. Its hard being in that room with him and it being so quiet all of the time, but he can't cry with the vent down his throat :(. Now I coulnd't watch the chest tube be pulled out. I was about an inch or more inside of him *cringes*.  They did have issues stitching him up afterwards he needed more then what normally is needed (the lower bandage in the photo is were it was).

Hes also off of a lot of medicines. No more vitamin supplments hes now on breast milk yay! While I was there they also did an echo on his heart I was not told the results since it was a tech doing it and not one of teh cardiologists.  So yes overall a good day. When i elft they were going ot do another breath test on him. They turn the ventilator off for an hour and see how he does. There thinking he may do better with the chest tube out of him now *crosses fingers*.

11 days

I can't believe that my little guy is 11 days old! And quick side note anyone else having trouble loading pictures? Well for most of the day there wasn't a whole lot of change. I could tell that he was doing better he's less swollen and his color looks so much better. To show him much of difference swelling wise he is I posted two pics below the first was 2 days post op and the second (same as above) was taken today and yes his still a little swollen! I wonder what my baby will look like once all his swelling has gone away. Because honestly I've never seen him not swollen.

                                     
I called his nurse not to long ago and he's ventilator has been taken down to 15 it was at 20 when we were there 6 hours ago. Its slow enough now that he is doing most of the work. they say at midnight that he will be taken off it for an hour to see how he does, but they will not decide on getting rid of it until after he has x-rays performed *crossing fingers*.  Breast milk is steadily being increased and they are removing a bunch of IVs and wires tomorrow! The two wires in his chest are being removed and they may be removing the bigger tube in his chest that was there for draining, which means they could get him closed up! I hope at least some of this happens! means he's getting closer to being moved to upstairs and slowly prepared to go home!

Connor has been difficult right now he really wants to see Aiden he just can't right now. Everyday he asks to see him and we have to keep saying no and yes he has been acting up a bit and I feel this is the reason. Its has not been easy on my little guy.

Enough false hope

There is one thing I am getting frustrated with right now its the false hope the nurses keep giving me. they keep telling me that this should be done by this day but when it doesn't happen I admit its hitting me really hard. Can't they just say there not sure? because them giving me a day keeps giving me hope that is constantly being stomped away :(. So my little one will not be able to get off the ventilator until as the nurse says maybe tomorrow or Monday...will see.

When I called this morning they told me that they had taken him off of lasik (what was helping him pee) and that they were going to start weaning him off of the ventilator. Well the poor guy still has fluid on his lungs and so they do not want to take him off yet, because they do not want to have to put him back onto it. Which I understand I don't want that either! but this is partially me being selfish because once that's gone and once hes fully closed up I'll be able to hold him again! which I desperately want to do. Its so hard to have a little baby and you can't hold him you can't do much of anything but stroke his head and wait. there are days and moments when my whole pregnancy and birth and everything else feels like a dream I have to keep reminding my self that I have two boys now. Which yes I know but part of me is having trouble with it and I'm not fully sure why.I'm there everyday I just feel in haze right now.

On to some good news they've increased the amount of breast milk and he is taking it really well. the nurse says he has had many poopey diapers so yes his stomach works! And they say healing wise he is doing very well and its just mainly the fluid thing that we are waiting on. though his blood pressure keeps going up but once they give him some meds it goes back down to normal. I think he's just stressed about all the stuff in on him I can tell he hates the respirator in his mouth he is constantly trying to push it at it with his lips. I imagine once they get some of the stuff off of him it'll come back down.

He has a different nurse almost everyday the one he had today covered him in blankets which I was happy about, he likes being bundled up and so that's got to be much more comfortable for him!

One day at a time

Going up to his room today I admit I was worried on what i would see. He had a not to great day yesterday so yes I was worried what I would see when I entered his room. As I walked up I felt instant relief. The UV light was gone his color looked better and he wasn't as swollen as he was yesterday and he looked so much more comfortable. His main worse wasn't in teh room at the time but I didn't need to be told that he was doing better. I had called that morning and was told that they had gotten his meds better and that he was peeing much better.

They did lower the respirator for a time to check to see how he would do without it they said he did well but they wanted hi to stay on it until tomorrow. And the best part of my visit today? He woke up and looked about a lot. he was very calm while he was awake just layed there content. he wasn't grimacing are getting upset with us talking. I rubbed his head and his eyes closed, seemed he really liked it. When I talked to him he looked over at me ♥. It truly was a better day.

Ups and downs

Going to start by saying not in the best of moods right now so if this post seems a bit down there's a reason.

I went and to work for four hours today because my maternity is only vacation time and the more time I take off the less I have when little A gets home. I wasn't happy at the thought of it this morning cried a little but to be honest it wasn't that terrible. I think I need the distraction right now. Sure I'm still hurting a bit but its not that bad. Like I said the distraction helped. Anyways work is nothing compared to the other thing going on in my life right now.

I went and saw little A after work and I knew he would look worse before I got there I mean it was a day after a big surgery, but ti was still so beyond hard to see him. He's right arm is very swollen due to the IV in his hand. He has IVs in both hands and one foot and the other foot has a monitor on it/ All of which appear to be very tender because of it.

He hasn't been peeing enough and has caused excess fluid on his lungs. The respiratory is helping with that and becasue of this it sounds like its staying for longer then they had originally estimated. Not coming out until the very earliest Saturday. Also becasue he isn't peeing enough he is jaundice and has fluorescent lights on him. His face is covered in a mask to protect his eyes. Also can't get really good pictures becasue the light and my camera do not mix.

He has a feeding tube in his nose and is getting a small amount of breast milk every hour to see if he can tolerate it. They say if he does they will increase the amount tomorrow. I didn't stay as long as I had originally planned I couldn't handle see him today. Every time the nurse checked on him he'd grimace or flinch. they needed to measure his tummy and I could tell that really hurt him. I tried to talk to him a little but even then he seemed agitated by it and when I touched his knee.. one of the few places that didn't have tubes or monitors he'd move away from the touch. Basically I did my best to not start crying in that room made it to my car and cried my eyes out... I'm crying as I type this now. I can't stand seeing him in so much pain it breaks my heart.