More Alert today

Baby X was very alert today. He is having some good improvements  oxygen wise but now we are starting to battle other problems. This morning they weighed him and he gained a significant amount of weight, which really can not happen in just a 24 hour period especially after only upping his calorie intake by 2 calories, so we are now starting to gain to much fluid within our body so we are trying to figure out why and are needing to figure out how much we need to up his lasix now before it gets around his heart. so as of right now he looks like a plump little baby to bad that is not how it is all the time but eventually it will be. Also the blood clot in our left leg is still the same so we are looking at upping the dosage of our Lovenox as well. Xander is also starting to vomit again even with the tube down his throat, we are starting to worry that he is starting to aspirate on the acidy vomit since he does not know how to swallow properly, so tomorrow during rounds they will discuss how to handle this obstacle as well. Xander is going to be our little miracle worker and will show us all how things need to be done with him. You will not be able to push him but he will show you how he wants to do it on his own time. He is my angel in so many ways and has shown me so many things that i was blind to before, he is already a teacher and will continue to teach all of those around him as well as time goes on. it was very calming to sit and stare into his beautiful blue eyes today and talk to him like there was no one else in the room with us, I even got a few smiles too. I must have bored him though after our long hour talk and staring contest cause he then fell asleep. Tomorrow is a new day and with that brings more miracles.

Xander had a great day today. They were able to get him off of the nitric completely and have moved his oxy help level from 55% to 50%. They are hoping to get him extabated tomorrow. Each day that goes by he gets better and better, i am truly happy that we are letting him tell us how fast we can go and not letting the doctors do it as fast as they would like. I was told this morning that i would not have to give up giving him breast milk but that they would be fortifying it a bit more with another product as well. They are moving the calories from 30 to 32 now and testing it out to see if they may need to go a bit higher on it, but with him fighting off 2 viruses his body it working overtime and is burning so much that we just can not keep up so hopefully we can get it all worked out the way we need it to and he will begin to gain weight.

Nurse, Doctors, & Xander!!

Last night Xander had one of our FAVORITE nurses miss Mindy, As crazy as it may sound i seriously feel so much at peace when i know it is Mindy that Xander has as a nurse. Anyways Mindy called me bright and early this morning just to tell me that Xanders ambi cord finally fell off lol ( see they had to put what are called RA lines through that when he was life flighted and because of that it kept it moist enough to not fall off until now) well at that point i had asked her if she had saved it for me which then her voice changed and said no. I have saved all of the others when they have fallen off so that i could put it in their scrapbook (gross to some by special to others). LOL she immediately got off the phone with me and then 15 minutes later called back and  yelled "THE AMBI CORD HAS BEEN FOUND & SAVED... I REPEAT THE AMBI CORD HAS BEEN FOUND & SAVED." Miss Mindy had gone through the trash in the room to just to save it for me. This lady will do anything for her patients i swear!! Mindy then advised me that after the little tiff i put up and that she as well put up with the doctors in the PICU, I have gotten the  cardi nurses to now take care of my baby X instead of the PICU nurses. Xander needs these cardi nurses since they know EXACTLY what can be done and what can not be done to him that really the PICU nurses do not since he is such a special case. I also got my way on having a cadi doc do rounds in his room each morning as well to hear what the other docs have planned for him that day and to approve of it as well. I am Xanders voice right now and i am not afraid to express it ether. During rounds this morning they had discussed bringing his nitric down to 5 from 10. They did this at 11. Once doing that it made his stats go to 73 so we are going to stay at 5 for  until he brings that number up on his own per cardi doctors order. Xander is fighting not only 1 virus but 2 so it is going to take some time to get back up there and there is  no need to push him any faster than he can go right now. Now the other news we got today is not the greatest but its  something that we can fix eventually. Xander is still not gaining any weight with the new change of food calorie intake. He is now past his birth weight by 3 oz so from the sounds of it we may be going up to a 40 calorie diet instead of the 30 we were just moved to, that will be decided here shortly. Other than that we are moving along and making good progress and now we let him move at his own pace. He will decided when it is time and no one else!

Setteling Down

Its been a relaxing day for Mr.X today. He has decided to fight back on this virus and is winning the battle. Today was to be our long all day appointments with his cardiology doctor and other labs but instead Xander stayed in his bed and rested so that he can come home soon. We found out yesterday that Xander not only had RSV but he also contracted HIB. HIB is a bacterial flu that you are immunized for with the first round of immunizations when 2 weeks to 2 months old, but see with Xander having his heart surgery we have not been able to get him immunized and really are not allowed to until the beginning of April which would be this Friday. HIB is a very dangerous flu and can cause very many problems and give you many different diseases as well. One of those would be spinal menagitis. However we feel that we started treating early enough that we will be ok since it has not gone into the blood stream. As of now we are starting to ween him from his nitric and then we will work on his oxygen levels but as of right now we are at 50% oxygen. Each day he will continue to fight those ugly viruses away and will soon be home again with all of us.

Turning around

Yesterday was a very uneventful day for Xander. In fact it was a very frustrating day to say the least not just for me but for the doctors as well and it was stressful for Xander. We started the morning with an xray which showed that or right lung was still collapsed in areas. Then we had 4 doctors in our room brainstorming on what to do next. So we paralyzed him so that we could be in control of his breathing to take the stress away from him but that did not work, his #'s did not go up like that had thought they would by doing that. We took blood every hour to see where our blood gas levels were and they would go up and down but would show that he was not letting all of the carbon dioxide so it was back to the drawing board, it was test after test from there and still not knowing what to do. Then at midnight his nurse requested zopinex (breathing treatment) one that is not harmful to him due to his heart. Thing started to die down after that he became more peace full and gas tests started to come back better, at around 4am he fully turned around and is now having a very relaxing day and all doctors are please with what is happening so we are giving him zopinex every 4 hours his xray this morning showed that his right lung is starting to inflate again. So from here we watch and let him do his thing as he gets back on the road of recovery.  

our home away from home

Well we are back at our 2nd home for a bit. Xander has come down with RSV. For those of you that know of RSV you know how dangerous it can be but it can and is deadly to heart babies. With all of the precautions we have taken this still ended up happening, we were told by the doctors and nurses up her that he more than likely contracted it from coming to doctors offices for appointments up here at the PCMC. This morning we were moved from the 3rd floor down to the CICU/PICU on the 2nd floor. Xander has been fighting for air all day and as the hours have gone on it has gotten worse for him. We hit 90% oxygen help at 8:30 pm which at that time we all decided that it was in Xanders best interest to be incubated so that we did not ware out his heart. At this time his heart is doing great but his lungs are failing. His right lung has collapsed from the middle on up leaving just the bottom lobe open.  Unfortunately  as of right now  the ventilator is not working as well as we had hoped so now it is back to the drawing board to see what else we could do to help his lungs. Needless to say it is going to be a very long and emotional night. Also Xander is now back at birth weight 6 pounds 15 oz.  they tested my milk to see if maybe there was not enough calories and fat in it but it came back at 23 calories which is actually 3 calories over what breastmilk actually has in it, so they have now taken his hourly 27 fortified calorie  diet to 30 calories every hour. Xander definitely has the doctors and respitory therapists scratching their heads on what do right now.

day by day

Its been a while i know but i have some great news.. On Wednesday 3/16/2011 Xander had his follow up appointment from being released from PCMC. He had an xray,ekg, and feeding tube replaced. His xray came back great and his ekg was awesome as well. they check his stas whith him off his oxygen for about 30 minutes and he was able to hold his own air supply up in the high 80's. YAY!!! He is now off of the oxygen but will evwentually need it again as time gets closer to his next heart surgery (Glenn). He is not gaining any weight though but instead is losing so we are still sitting at 7 pounds 3 oz. which he was 7.5 when we left the hospital with him. They have upped his feeding dosage from 18cc to 20cc an hour, hopefully we can get him to thicken up soon, but in the meantime i am enjoying his smallness since i lost a full month with him and playing dress up with the newborn clothes while i can since we still fit in them at this time. Xander has proven that he is a fighter but he has also brought our little family unit tighter and closer than we could ever imagine it to be.

Our new life at home

Well it will be a week tomorrow that Xander has been home. It has been great not having to go back and forth and being able to be with the other kids at night as well and not feeling like we never see them and them feeling like mom and dad are never around anymore.  Things at home have been a bit stressful but at the same time if it wasn't i guess i would feel like there was something wrong lol. The first night Xander was home it was crazy, i was scared and happy all at the same time. It does not matter how many times they go over everything with you about meds and how to care for him, you always seem to forget something for just a brief moment and then it freaks you out. I think the first 3 nights having Xander home i walked around the house not know what to do but think to myself of everything that needed to be done for him and at what times and watching the clock so that i did not mess up the dosage times or even forget to give him what he was to have. FINALLY i think i have settled down a bit but not much lol I have his med schedule written out and posted on our fridge and i have alarms to go off on my phone as well to remind me just in case. Xander was able to have his PICC line removed today THANK YOU LORD, that thing was not my friend at all. I had someone ask me the other day, " How is it that you have not completely lost it yet but have kept it all together and have such a positive attitude on this?" My answer to that is, I do it for Xander, all selfishness goes out the window i can promise you that!

How i feel

This pretty much sums things up!


You passed me in the shopping mall... (You read my faded tee) You tapped me on the shoulder... Then asked..."What's a CHD?" I could quote terminology... There's stats that I could give... But I would rather share with you... A mother's perspective. What is it like to have a child with a CHD? It’s Lasix,aspirin,Captopril… It’s wondering…Lord what’s your will?… It’s monitors and oxygen tanks… It’s a constant reminder to always give thanks… It’s feeding tubes, calories, needed weight gain… It’s the drama of eating…and yes it’s insane! It’s the first time I held him…(I’d waited so long) It’s knowing that I need to help him grow strong… It’s making a hospital home for awhile… It’s seeing my reward in every smile. It’s checking his sats as the feeding pump’s beeping… It’s knowing that there is just no time for sleeping… It’s caths, x-rays and boo boos to kiss… It’s normalcy I sometimes miss… It’s asking do his nails look blue? It’s cringing inside at what he’s been through. It’s dozens of calls to his pediatrician… (She knows me by name…I’m a mom on a mission) It’s winters homebound…and hand sanitizer… It’s knowing this journey has made me much wiser. It’s watching him sleeping… his breathing is steady… It’s surgery day and I’ll never be ready. It’s handing him over…( I’m still not prepared…) It’s knowing that his heart must be repaired… It’s waiting for news on that long stressful day… It’s …praying…it’s hoping…that he’ll be okay. It’s the wonderful friends with whom I’ve connected… It’s the bond that we share…it was so unexpected… It’s that long faded scar down my child’s small chest… It’s touching it gently and knowing we’re blessed… It’s watching him chasing a small butterfly… It’s the moment I realized I’ve stopped asking why? It’s the snowflakes that fall on a cold winter’s day… (They remind me of those who aren’t with us today) It’s a brave little boy who loved Thomas the train… Or a special heart bear…or a frog in the rain…. It’s the need to remember we’re all in this plight…. It’s their lives that remind us we still need to fight! It’s in pushing ahead amidst every sorrow… It is finding the strength to have hope for tomorrow..

We are HOME!

Nick and i are happy to announce that we have brought baby Xander home. On thursday morning 3/3/2011 we asked by the cardiology team to stay the night so that they could teach us all about how to give him his meds and would be able to do them ourselves that night as well. At that point we were told that Xander was going to be discharged the next day to be able to come home!!! It has been a very long journey to get hiom here but it was SOOOOO worth it. We are now trying to get home life back on track and get into the groove of doing all that needs to be done for Xander everyday and sometimes every hour.  These next few months are very crucial for him as he will be going back in to have his 2nd heart surgery in the next few months which is called his Glenn procedure.  Thank you to all that have been our support line you all mean the world to us!

So much information

Well today marks a month that Xander arrived at PCMC by life flight, and you deffintly would not think by looking at him now it was only a month ago. He looks amazing. Nick and I have been learning all we need to know about his meds, how to distribute them how to properly flush his lines before and after, how to feed him through his NJ tube, and so much more. Its very nerve racking to know that there is so much we have to do and watch for but the only reason why that is, is because we want to make sure we are doing it right and nothing happens. its pretty scary that is for sure. I think the one that scares me the most is his PICC line and how we have to be very careful with that one. If anyone has had to deal with a PICC line before you know what i am talking about then. But with all that we have to learn and are being taught i am super excited that it is finally here cause that means he's coming to the stage of going home soon, but when?!?!?!?

Xander is a month old today!

I cant believe that Xander is already a month old and what is even harder to realize is that he has already gone through so much during his first month of life. He has deffinitly proven his strongness and determination. He is doing so great and i know that with each day that passes Xander will continue to get stronger and we all will get to enjoy this bundle of joy and what he is going to teach us through out his life here with us. We did get some exciting news today but at this time we are keeping it hush hush. We will post what that is at a later time this week.

Swallow test Today

Xander had his swallow  test done this morning at 11:45, poor wittle man was MAD that they took his food way from him again 2 days in a row. Well he did not pass his swallow test only because he aspirates it which as we all know is not good what so ever. He will need to come home with an NJ tube ( feeding tube), ether way i will take whatever pumps, medicines, etc just to have him home! We were told today that the discharge attendent is getting all things in order with our insurance and home health care so that we can go home soon, which as of tonight that soon may be friday or saturday from what our nurse told us she over heard YAY. It'll make a great birthday present to nick if that happens!