Back on Track

We got  a call from the hospital way quicker than we were expecting to. We both recognized the number and were terrified of what they had to say... It was the rhythm specialist, she was calling with some shocking news!(sorry, I have to keep my sense of humor) They were able to use the pacing wires to pace him out of it. What a relief! They didn't have to actually shock him with any high voltage. They just put him to sleep and put the wires down his throat and just behind is heart. They then used a computer track his current speed and used the pacing wires to make it pump faster and faster until the heart finally reset itself. He is on some medicine to help prevent him from flipping back into a dangerous rhythm and will need to stay in the CICU for at least another day. After an experience like that, we are not in a hurry to get out of here. He looked perfect this morning, he was sleeping peacefully and was nice and  pink. If it weren't for the monitors and alarms we never would have known there was anything wrong.

When we came back into the CICU to see him, he had been sedated and was no longer breathing on his own. So he had to have a breathing tube in again. He was also starting to get a little cold so they wrapped him up with a little blanket around his head. he looked so cute. He came out of sedation and is able to eat and breathe on his own again. The rhythm specialist said if he is going to flip back into it, he most likely will do it in the first 24 hours, but every kid is different so she doesn't know. She recommended we get a stethoscope at home and listen to him regularly throughout the day. Once we get used to his normal heart beat we will be able to tell when it is abnormal.
We are both exhausted and are very happy to have our little guy back on track. This pushes us back another couple days on being released, but we are not in a hurry to get out of here. We are totally willing to have him live here and we will just come visit him every day.

Rhythm Specialist

We just spoke to the Rhythm specialist. She wants to get him out of this rhythm by this afternoon. She said the medicine they gave him earlier this morning helps prevent this arrhythmia but doesn't do the best job at getting them out of it. The doctor this morning told us he would be on the meds a couple days and then as a last resort shock him... Then later this morning this big cart of machinery comes rolling up. It just doesn't seem fair to have all this crap hooked up to this little guy. He is still so tiny, I can't even imagine how strong he is, he has gone through so much so far. I can't stand thinking about this afternoon.
 They are going to sedate him and put some pacing wires through his nose and set them behind his heart. They are going to try to pace the heart and then get it back into the normal rhythm. She said this might be hard to do because the top chambers of his heart are beating 3 times faster than the bottom times. It's called an arterial flutter. She said they might have to shock him to 'reset' his heart. It does not sound very fun, but it with the way his heart is working right now there is a bunch of blood swirling in the top right chamber, this could cause clots, which could cause strokes. She said the clots usually take 24 hours to form, but they can be pretty bad news.  We are both nervous about this shocking business but it does seem to be the lesser of two evils. They will sedate him so he doesn't feel anything, so that is a little more comforting.... It's still scary though. This place is very good at drawing out the tears, we have both done our share of crying this morning, but we need to stay strong for our little man. He is putting up with so much in this first month of his life. He is going to be one tough cookie.

3 AM - Back to CICU

This weekend has been great so far, Michael was chugging along and Zoey was getting some daddy time. Last night I asked Bryt if she wanted to come home for the night and get a shower in her own shower, get herself some new clothes, etc. But she strongly felt like she should stay there with Michael. That sounded good to me, I planned on staying with Zoey then dropping her off at daycare in the morning. Then heading down to the hospital. On my way home last night, I had a feeling I should stay at my moms with Zoey, just to make things a bit easier on me in the morning. So that is what we did, Bryt stayed at the hospital and Zoey and I stayed at my moms.

Around 2:00 am I woke up and had a feeling I should call my wife. I was very groggy and didnt want to wake her up so I just sent her a text. Little did I know she had just woken up and was about to have an anxiety attack. She woke up to feed Michael just in time to see his alarms start going off. His heart rate had jumped from it's normal 140 to over 240. Bryttney was confused and didn't know if that was acurate, we haven't ever seen him get close to this. Nurses rushed into the room and started putting ice all over his head. Michael was experiencing SVT (Supraventricular tachycardia), the electrical system in his heart was sending out too many signals and causing a 'flutter' in his heart. The top part of his heart was pumping faster than it should be and causing an irregular rhythm.  The cardiologist called for a 2nd opinion before starting treatment. Even though Michael had multiple nurses around him trying to get him out of this state, he was sleeping soundly. The extremely fast heartbeat did not seem to bother him at all.  Bryttney was starting to breakdown and called me around 3:00 am. I guess that is why I was prompted to stay at my moms house, so I could leave Zo without any issues.

I got to the hospital and they had moved Michael back down to the CICU. The nurses were drawing some blood and Bryttney was curled up in the corner of the room crying. I ran over and wrapped my arms around her, she couldn't talk or look at me or move. She was still kind of in shock from the whole thing. The doctors won't let her breast feed him because if this medication does not work, they may have to use a defibrillator on him and shock him back into normal rhythm. I think hearing that is what may have put her over the edge. I kept cuddling her and let her know everything would be ok. There were only two nurses at his bed and his heart rate is staying around 180 for the most part. After talking to the cardiologists and nurses I don't think he is in any immediate danger as of right now. He is somewhat stable and a rhythm specialist will be be by later this morning.

The medicine he is on is being given to him in 12 hour doses. The doctor said he will need to be on it for a couple days before they see if it's working or not. He seems to be doing good still, he is nice and pink and still sleeping peacefully. He didn't like the nurse poking him for blood, but she gave him some sweet stuff and it calmed him down. We are back in the ICU for a couple more days, we are both worried about him, but I think he will be ok. I am glad he was still here, if this would have happened at home we wouldn't have had any idea.  The reality of this situation continues to grow and scare us. We are both very grateful for the annoying alarms and the amazing nurses. The spirit is with us and I feel pretty calm about everything right now. I will continue to update as the day goes on.

Sometimes I feel a little awkward typing away on my computer during a time like this, but Bryttney and Michael are both asleep. The nurses are taking care of him and I know he will want to know how it all went down when he is older. I don't want to forget any of the details so I try to get them down as soon as the commotion stops. Thank you all for keeping us in your prayers, give your loved ones a big squeeze. I don't know how we would do this without family and friends holding our hands every step of the way.

Who better than us

Sorry for the late post. I hit a rough patch last night when Zoey came to the hospital to visit. It stinks she can't go back to his room with us, she still hasn't seen him. When she comes we just have to sit out in the hall and play with her, then send her off crying.  I couldn't handle it last night so I ended up coming home with her for the rest of the weekend.  I think it was good for all of us. Zoey was definitely ready for some time at home with her daddy. Since Michael is fairly stable I am not so worried leaving the hospital. I know he is in good hands and he has been spending lots of time with mommy lately. He even got some of his stitches out today. I still here alarms going off in the backgroud every time I talk to Bryttney. They are slowly weening him off oxygen, so he has to adapt every time they turn it down. Hopefully we can go home without any.
I can't wait to be home and not worry about those alarms. It is starting to get scary though- the closer it gets to going home the more real it becomes. We are both ready to go home, but we will have a hard time leaving these nurses. They have been wonderful, and if there are any problems they just come in and take care of him.  I know he is a trooper and has been stable for the last couple days, but it's scary to think that we are taking him home soon.  I'm sure Bryt is totally comfortable with it, she has been more confident than me through this whole experience. She just has this calm about her, she just knows everything will be ok. I am at the other end of the spectrum, always thinking about the what if's and the why's and the how's. Together we will be able to handle it, but it's starting to get a little more real each day.
When we first found out about our baby's heart condition, we both broke down with sadness and worry. After coming to terms with it and seeing all the wonderful blessings this was bringing our family, we were grateful for the opportunity to raise such a special little spirit. It sounds weird to be grateful for such a thing, but after thinking about it- who better than us? We have a stable home full of love and an amazing support system. We will both do our best to give both of our children the best life possible. I'm sure there will be plenty of challenges, but that is just part of life.  Thank you for keeping us in your prayers!

Goodbye CICU

Today was a long day, we had a long night last night. Bryt was up every 3 hours to feed the little monster. She is amazing. This morning was awesome, he had made a lot of progress and we felt comfortable going for a longer lunch. We walked a couple blocks down to Chipotle and had a nice chat. It was nice to be out in the sun and not be surrounded by blue scrubs and alarms.  When we got back from lunch the nurses had him unhooked from just about everything and told us we were heading upstairs. We weaved his crib in and out of some secret hallways and made it an elevator. We took it up to the 9th floor and wheeled him to our new room. Hopefully this is the last room we will be in. Poor little guy has already been in two hospitals and been bounced around to 6 different rooms. We have a pretty cool view from way up here. This unit is a little different than the ICU. We have an actual door, and we have a bathroom and shower of our own.  The nurses have 3-4 kids each so they are not really watching his monitors as closely. One of our alarms was going off for about 5 minutes before anyone came to look at it.

Michael is off his fortified stuff, the lactation lady said he is looking good and hasn't really lost that much weight, only about 4% lighter than birth weight. So that is exciting, cause he doesn't seem to like the fortified stuff. He also has a big towel wrapped around his arm with the IV in it.  We didn't notice it until we went to change him, it looks like he just has a big club arm. I was calling him Mega Mike, because he looks like MegaMan. He was squirming around and his Club arm got caught on some of his belly button stitches and they started to bleed. It wasn't a lot of blood, but we did have the nurse check it. We all think it looks ok.  It also looks like he might have some irritated skin from his diaper so we ordered some cream for him. Overall he is doing really good, we are told by every nurse we have that he is the cutest baby in the unit.

We also got to see Zoey again today, my sister brought her and her cousin Ryan to the hospital to eat with us. I was running around the halls with the two of them chasing me and hiding from them. They were having a blast trying to keep up. Zoey fell a little behind and then vomited all over the floor. I went to pick her up then she puked a bit on me. Then Bryt went to pick her up and Zoey started trying to lick her cheek...What is she learning without us?... It was fun seeing her and hard to say goodbye as always. She was having a really rough time so I rode around in the car with them for 10 minutes hoping she would fall asleep. She never did and I had to leave her crying again. That has got to be one of the hardest parts of this. We both miss her and can not wait to have our little family back at home. She still has no clue about Michael and still isn't allowed to come to his room to visit. We tried to show her videos and pictures but I don't think she really gets it.

Moving Forward

Michael is doing great today! Bryt has been nursing him every 3 hours and he is feeding quite well.  They took out his feeding tube and asked us to replace 3 feedings a day with some fortified breast milk. This is Bryttney's milk, with some extra calories, protein, calcium, and fat in it. He is still not getting all the nutrients he needs and doesn't appear to be gaining weight the way they want him to. Based on our experience with the fortified stuff so far, he doesn't seem to like it. Hopefully he eats it now that he has an appetite.
They also took out his picc line this morning. This was a central line going into his left arm and going straight to his heart. They were using it to give him medicine that needed to mix with the blood quickly.  It's exciting they took it out because they have a high risk of infection. He does have a little skin irritation where all this stuff was taped onto him, but he looks really good.  We are most likely going to be moving upstairs this afternoon. They just need to clear out some of their rooms up there. Bryt and I are so Proud of him, he is such a strong little guy. These kids are amazing, he has already endured so much.
We also got to talk to the social worker today, she brought us some flyers and print outs for support groups and resources. It's so crazy to think we are part of this whole other world most people overlook. We now have a son living with congenital heart disease, he will have it the rest of his life.  We have been so warmly welcomed  and are already building relationships in this new community. There are kids his age that have already had heart transplants. It's a crazy and awesome thing to be a part of. These families are amazing. I think it's time I stop being so selfish with my life. If Michael were born with a normal healthy heart I probably would have continued my normal life, oblivious to all these amazing people living around me. Thank you all for your wonderful support, this has been a roller coaster ride so far and I'm sure there is more to come.  Bryttney and I are so grateful to have such amazing families and friends. You are all wonderful.

Plateaus and Perspective

It's been a long day, neither of us really slept last night. We had reserved a sleep room but after the gagging incident last night we didn't feel comfortable leaving him alone. We are both starting to get burnt out and miss our little girl. Michael has kind of plateaued in the last 3 days, he is still doing awesome but he is not eating as much as the doctors would like and his lungs are still wet.  We are not in a hurry to leave, but we are excited every time he progresses to the next level of recovery. So when the progress is not moving forward, it feels like we are moving backwards. It seems like we are in a bad situation, but I have to help myself realize how blessed we are.

This is hard for us, that is for sure, but when you see a little three year old walking down the hall all stitched up pushing her little cart of IVs, it does help put things into perspective.  There are so many amazing families here, each one of them has a unique situation with their child's heart. Michael seems to be improving at an amazing rate compared to most of the other children here. His condition is not the worst, but it could be very scary in the future. The doctors are very impressed with how he is tolerating everything. Some of his numbers could be better, but he is doing awesome and his low stats don't seem to be bothering him.  We are both very glad he is so strong and healing so quickly. We are also happy he is still an infant and will have no memory of this. I dread the day I have to explain that we will be going back to the hospital for the doctors to work on his scar. It's so hard to watch these little pre-schoolers walk down the hall pushing their IVs. They are so adorable, and  are such amazing little kids. It really opens your heart when you see them, their parents must be so proud of them.

We are so lucky to live so close to such a great facility. Our cardiologist is one of the best in the nation, and our surgeons were amazing. Some these families are from Montana, New Mexico, Utah, Wyoming, and Nebraska. They are from all over the country, they have no family to help them, and some of their spouses have to fly back and forth on the weekends. Some of them have been flown here by flight for life for emergency surgery. 

I am not trying to downplay our situation, but trying to help myself realize how lucky we are. Michael was born with several scary heart conditions; a narrow and pinched aortic arch, a small and deformed aortic valve, a deformed mitral valve, and a hole connecting the top chambers. Luckily two of these have already been fixed and he may be able to live with the other two for quite a while.  His condition is much better than some, and much worse than others. 

This entry was more for me, and less of an update on Michael.  I have had a long emotional day and have been fairly gumpy and depressed. I have lost site of how lucky we are to have such a beautiful little boy sitting here in our arms. He is able to look around, he has all his fingers and toes, he can hear, and he is the cutest little guy in here.  Since we started this blog, I have had multiple entries every day, it has been very therapeutic for me and helped me get most of the thoughts out of my head and out into the world. 

This is a hard situation to be in and nothing can prepare you for it, but keeping an optimistic outlook and trying learn everything you can helps a lot.  I lost site of that last night and today and it started sucking me down a dark rabbit hole. After seeing my wonderful little girl and talking to my family, I felt much better.  Thank you for all of your prayers and kind words, we love you all.