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. 

Nightly Panic

We got moved to a room with a crib this evening. We are one step closer to going upstairs and getting out of the CICU.  It was kind of scary because they moved him while we were eating dinner. So when we got back to his room he was gone. A fleeting panic at first, but we knew he was around here somewhere.
Tonight was going really smooth in our new room, we were kicked back watching movies with him, and he did really well nursing. Then the nurse came in with a huge siringe of milk she was going to feed him through his tube. I instantly felt bad about it, like we shouldn't give him it... but what do I know... so I stayed quiet.
About 30 minutes later I told Bryt I think we should turn it off, cause he was getting really squirmy.  A couple minutes later he started gagging and trying to throw up. Bryt ran to get the nurse, who came running in and turned off the feeder.  He sat there gagging for a few more minutes and then she came back and put him on his side to help digest it. It was one of those scary moments where there is nothing you can do but watch. I instantly felt guilty and angry because I had a bad feeling about it the whole time and didn't say anything.  My nice chill night has been turned into a night of panic and checking to make sure he is still breathing every 5 minutes. I'm ready to go home, this constant worrying is geting old. I wish I could just relax, but then crap like this happens and no one would even notice if I weren't being paranoid. This is like the third time I just happened to be in the room and save him from some catastrophe. I'm sure all parents feel like this, it's just hard to have to sit here and watch everything. If I knew how to take care of him and give him whatever he need I would, but I don't know what he needs. I just have to sit here trusting every person that touches him knows what they are doing. I  know he is a little trooper, but he is only 8 days old and had heart surgery 4 days ago. Pay attention people!

Faith in Healing

This mornings rounds just came by. Rounds is where the Cardiologists, Nurse Practitioner, and Nurse all go over stats and progress. Overnight and this morning Michaels progress has been great. Jaron shared earlier that his bandages are completely gone. They are very impressed that he is breastfeeding and need me to breastfeed at each feeding today. 

After Zoey had her doctors appointment this morning I felt an overwhelming feeling that there was something more I needed to share with this blog. Jaron just showed me that we have almost 4500 views from just starting days ago. Each one of these people are able to see what we are going through and how we are overcoming our trials. Every ones love and prayers have been with us but I'd like to share more about my own prayers and blessings I am receiving because of my faith. Before I had Michael I received a blessing from my dad. In this blessing  I was told that Michael would be born at term, he would be healthy and strong at birth, and that I would be able to raise him. We've received many blessings since whether they be for comfort or healing they've made this experience easier to live through. 

Without being able to see Zoey lately my prayers are getting closer together and with no offense, a little more demanding. I need my daughter and I need my son. Heavenly Father understands my needs and I know he is able to provide. With Michael living and breathing and progressing each day I am able to know this without question. Last night I was still distraught as my daughter was still sick and the first doctor she saw decided not to treat her. She had another apt this morning with whichever doctor was available to see her. I didn't care who saw her I just needed her to be seen and to be treated. In my prayer last night I decided to use my faith and tell Heavenly Father what I needed and when. I know he can heal my daughter and he will. I know I will be able to see her in a couple days and the doctor this morning would find what was ailing her and treat her with what her little body needs. 

Talking with her Grandma after her appointment confirmed my faith at a higher level. My testimony of my Father in Heaven has grown. The only doctor available this morning was the head of Kaiser pediatrics in this area. Jaron's mom told her of the situation we were in with Michael and how we weren't able to see our daughter because of this. She was aware of our situation because she had set up our delivery at St Josephs and our transportation to Children's. She did a very thorough exam for Zoey and is treating her for a sinus infection, influenza and possible asthma. She will be better in a couple days and I will be wrestling her to the ground with hugs when I see her. I know we are not doing this alone, we have a wonderful support system behind us. We are so grateful for all the parents at Take-A-Break and all of the family that continues to support us. I know God sent this doctor to see Zoey this morning and I believe my prayer last night was heard.  You have all been so wonderful! Thank you for everything.

We appreciate you sharing our story with others, and hope it keeps you and your families closer than ever. I'm hoping this is keeping everyone updated and that it can put a smile on your face as it has mine during this difficult time. 

Bandages Off!

We got to Michael's room this morning and he was wide awake looking all around. We put our stuff down and immediately started taking pictures of his beautiful eyes. His voice is starting to sound really good and actually sounds like a baby crying instead of  60 year old smoker. He is so adorable with his little cry.

He also got all of his bandages off this morning, he looks wonderful.  Bryttney was able to nurse him and the Speech therapist said he sounded way better and was latching pretty good. Today feels like progress again! He is still on the feeding tube to supplement whatever breast feeding he gets, but we are totally ok with that. He is still on the cardiac medicine which is keeping his respiration nice and low. The alarms are few and far between, so we can rest easy for most of the day.  We have a day of holding and loving him planned, the nurses say us holding him is really good for him and keeps him calm.

Zoey was taken to the doctor again today, and she happened to get the head doctor in charge of all the denver Kaiser pediatrics. The doctor knew all about our situation and gave Zoey extra special attention. She said Zoey is pre-asthmatic and caught a bug that is working with the asthma to make her miserable. She had a breathing treatment and is feeling much better now. Grandma says she is back to her happy self. We can't wait to see her, but the doctors say we need to be tough and trust that she is in good hands with Grandma.
Michael got his first bath since surgery today, it is hard to watch the nurses be so rough with him. We both want to treat him like a little porcelain doll, but they seem to know what they are doing. It is amazing how tough these little guys are. He didn't really like the bath but he dealt with it ok. I was going to post a video, but we didnt get any without 'Little Michael' in it. He has to endure another session of 'breaking up the crud' in a little bit... I am not looking forward to it, but I have been assured by multiple people that it is good for them. It is very hard to be here for what seems like an eternity, but we are very lucky to live so close and have such an amazing support system.  Thank you all so much for keeping tabs on him and reading the blog. We are so grateful to live in a time of technology.

Hospital Buddies

Today was a pretty long day, we have been pretty lucky to have such a little trooper. For having surgery just three days ago he is doing really well. They did end up putting him back on some of his cardiac medicine and he has a feeding tube now, but Bryttney was able to breast feed him for the first time since surgery. We are also able bond with him and hold him whenever we want, he is such a peaceful little guy, and pretty lazy so far. Me and him took a long nap together today.  His voice is slowly starting to come back and he is starting to cry a bit more. I think that is a good sign because it will open that right lung a little more. The nurse practitioner said it is still a bit dark on that side.
Bryttney was having a pretty rough time today, she really misses Zoey. But we don't want to risk getting Michael sick so we are trying to wait it out while Zoey gets better. But it is getting really hard not to run home and squeeze our little girl. She has been such a trooper through this last week, we both feel so guilty not seeing her this whole time. We know she needs her mommy and daddy, but with the progress Michael is making he needs us too.  We are thinking about splitting up and one of us going to stay with Zo, and one of us staying here. The problem with that is then one person is left alone in the hospital with their thoughts wandering about and getting into mischief. Being alone in this type of situation is probably very hard psychologically. I am so glad we have each other to lean on through this. I can't even imagine how hard it is for single parents. The support from all our friends and family is so appreciated, we are so blessed to have such a wonderful community behind us. We are also starting to make friends all over the hospital.

Actually one of my friends from work has been here for 10 weeks and was a huge help to Bryt today. She and her husband have been through a lot the last couple months and she is very helpful to talk to. It is amazing how people open up and are so full of love. You get to talking to them and instantly love them. This hospital is truly amazing, but there are so many people going through such hard things here. After being here for a whole week things slowly stop freaking you out. You hear people's situations which are hard to listen to, but instead of being scared for them, you just care about them and have faith in the doctors here. We all kind of bond together and try to hold each other up.

We got new neighbors yesterday, they are from grand junction and have had a pretty long journey so far. Their baby has had two surgeries already and still needs two more. They have been trying to help us with resources and support groups.  They are both young and have already taken on so much. We were both amazed at how much they know and how calm they are. We are both very glad we met them, they helped calm us down and we had a much better night after chatting with them.  I also got to nerd out for a few hours and give some Photoshop lessons. Score!

Breaking up the Crud?

Aw! Worst treatment ever! They are 'breaking up the secretions in his chest'... They are using this cuppy thing to pat him all over his chest and back. Michael hates it and its sending off all kinds of alarms. Supposedly it is good for them and some kids like it. Agh! I'm freaking out and can't help but watch, I want to go punch this guy! Bryt keeps telling me not to watch, but he just keeps patting him all over, I cant help but think about his little chest and how sore it is... and... it's over now... it only lasted like 30 seconds.. but It was hard to watch and was like the longest 30 seconds ever. There have been so many 'nails on a chalkboard' moments here. Half the stuff you see or hear is just hard to take in. Michael is sleeping peacefully now, but that was a rough minute we just had together. They took away a few more of his medicine pumps, his little area looks awesome now! Only one pump left and all it is doing is pushing through some fluid to keep the line open. It doesn't even have any medicine in it!

Post Op - Day 3

Michael has been cruising along with his recovery, he has been so blessed and so strong. He is back on  a feeding tube today, he is just not eating enough. I think he is supposed to be drinking like 90ml per feeding and he is only taking about 20ml. He also seems to just be a bit lazy when it comes to feeding, he just expects it to go down his throat by itself.  We haven't tried breast feeding yet because his respiration is still a bit fast. The doctor said he is probably breathing fast because his throat is soar from the breathing tubes. She also said one of the reasons he might not be eating is because of the arch they repaired. Before the repair, the blood going to all the organs was restricted by a kink in the arch. So now that it's fixed the belly is getting more blood and needs to get used to it. This video is actually of him 'eating' the night before surgery. So you can see he wasn't really into it then either.

His respiration is fluctuating quite a bit and freaking us both out a little, his alarms are starting to ding again... man I hate alarms. I am happy to have the surgery part over with, but now we have to see how he reacts to each thing they take him off. This morning he was taken off his brain and kidney tissue monitors, and he was also taken off the last of his cardiac medicines. That could be causing the faster respiration, but we kind of just have to see how he stabilizes.
It's kind of crazy how all this works, I like to think of the surgeons as mechanics, and the heart as their engine. Things are supposed to pump and flow a certain way and they just try to make it work like it was originally designed by our almighty engineer. But then there is this whole other element, of the individual growth and unique structure.  I just want some definite answers, but it does not like work like that. The answer to every question is "We'll just have to see how he does.." We understand they don't know how he will grow, but it is hard to always be in that waiting stage.
We just got through sitting in on his rounds for this morning, He does still have a slight heart murmur,but the doctors say that we shouldn't worry about that until he is bigger. They said he will most likely need another surgery in the future, but they will have to wait and see how he grows. We are really hoping it will just correct itself as he grows. He is off all of his cardiac medicine, but after rounds and talking to the cardiologist they are probably going to put him back on some if it after his echo today.  They are also concerned about his vocal cords and the fact that he is not eating as much as he should. He is probably going to be examined by an ENT later to see if he has some vocal cord damage, I guess that is the main thing that could be affecting his swallowing. We get to go over his post-op echo today or tomorrow and hopefully get a little more info about the future.
This is getting easier to deal with as the days go by, but when you have to backtrack even a little bit, it gets a little freaky again, and then there are these stinkin alarms!