Please Just Pray
Where to begin? My little man is sick. Yesterday was a horrible day. He had a fever again, was requiring oxygen and cried/whined the WHOLE day. My heart was feeling broken in two. I can’t stand to see him suffer. To be so upset when he is normally the happiest boy that I know.
After getting home last night, we got a phone call at midnight. It was the ICU doctor calling to tell us that A had an episode that required some bagging and chest compressions. I got off the phone with him and just cried. I just can’t take this.
4am the phone was ringing again. It was the ICU doctor telling me that it happened again, that they were going to keep him off of the bipap and keep a close eye.
Our team meeting today was with all of the doctors involved. I found out then, that A actually flatlined during his episode at 4am for about 20-30 seconds.
It looks like we will be going the route of the tracheostomy.
I am scared right now. Please pray for A to have the strength to fight this. The will to go on. Please pray for the surgeons that will perform this. Please pray for myself and for Jeff to be strong and know we are doing what is right for our boy. But most of all, pray that this helps A.
Getting Back In The Groove
Well this is now A’s new website. It is a work in progress so be patient with me. I have a web designer working on it for me as well. As you all know, I would really appreciate if you do NOT add this to your blog list. There are reasons I had to go private before and I just don’t want certain people finding this new site. That is why we are now referring to my boy as “A”. So if you have A on your blog list, just leave his old address listed as I do not want this listed anywhere. SO PLEASE DO NOT HAVE THIS AS A LINK ON YOUR PAGE!!!! Thanks everyone!
So it has been kind of crazy around here once again. On October 16th my little man was really struggling in the morning. So much that I really thought that he was possibly heading into respiratory failure again as he did he March. By lunch time I was nervous so I took him into his doctor. I was so positive that we were going to be admitted that I packed all of my bags and A’s bags before heading. He was requiring oxygen at times and was struggling to breathe.
So we got him into the doctor and he was NOT concerned about him! He said that his throat was kind of red and irritated so he placed him on an antibiotic to be safe and then sent us for an x-ray.
Saturday morning (the 17th) his doctor called to tell me that his x-ray actually looked pretty good. I couldn’t believe it. Friday night was HORRIBLE. A had to sleep in his chair and every time that he fell asleep his sats would drop to the 70s and stay there. If I woke him up he was above 90. I cried and cried because I felt really bad for him suffering, but I didn’t know what else to do for him. I told his doctor that I was really angry and that I felt something more was going on. He told me if I was that worried about A that I should take him to the ER. Ummm that is why I brought him to see YOU, so we could avoid the ER!
Anyhow, on Tuesday the 20th we had an appointment anyways with his respirologist at Mac that I absolutely LOVE. It is the vent clinic that A is now under even though he isn’t trached.
We did a cap gas first which showed that his CO2 was at 54 and his O2 at 75. He was very junky and had needed a lot of suctioning over the weekend. They did swabs for viruses and then his swab to check for pseudomonas.
He wondered why A was on the antibiotic that he was on and stressed that when it comes to A that doctors really need to be more aggressive. He has very crappy lungs and anything can happen. So he placed him on cipro (in case the pseudomonas was active) and on prednisone as well as many extra breathing treatments.
I felt MUCH better walking out of there because I feel like this doctor is so PRO active with A. It is about time that someone really cares for this kid and his well being!
So A and I spent just over a week sleeping on the couch together and trying to keep him out of hospital. As of today, he is doing wonderful!
On another note, I really need people to send lots of love and prayers to Auntie A (my sister in law), my brother and her family and friends. As most of you know, about 18 months ago she was diagnosed with cardiomyopathy with a heart function of 20%. She has stayed so positive and strong that it is just amazing!
Well for about the past three months she has been telling her cardiologist that she has severe stomach pain, is nauseous 24/7 and cannot eat. He told her that it was probably her GI issues/gallbladder. Twice she almost had her gallbladder removed which would have been for NO reason.
Long story short, she ended up in hospital on the 5th of October after going to a class for people with heart conditions. There was a pamphlet given out with symptoms of heart failure. She had them. These were what she had been complaining about to her doctor for months. It was then she found out that she was in severe congestive heart failure.
October 12th she was transferred to Toronto General. It was there that she started to really rapidly decline. Last week she was officially listed for a heart transplant. However with her poor days they just couldn’t let her go as she was.
On Friday October 23rd she had a code blue called. I went and saw her on Saturday and she was HORRIBLE. I couldn’t believe how much she had deteriorated since I saw her last which was only four days prior.
Sunday it was decided that she needed to have the LVAD (left ventricular assist device) placed. They were hoping to avoid this until this coming Friday because they didn’t want to do the LVAD and a heart transplant as it would be very hard on her. However a heart had not come yet and she could not keep going the way that she was.
I was up at the hospital last night to see her and spend some time with my brother. She was very tired and in a lot of pain. The things this girl has gone through are just incredible. Her fight is inspiring to say the least. Please keep praying for her and all who love her.
My Little Man Is Sick…
Not too sure what is going on exactly with him but it started last night after he went down for bed. I finally got to bed at 1am and then the alarming started. J was still up so he kept going up to check on him. Eventually at 3am A was having a hard time keeping his oxygen saturations above 70 so he got me. I was a bit nervous as he was just having such a hard time breathing. I had said we should probably take him to the ER but we all know that it just doesn’t seem to ever work for A. I mean how much faith can you have when at our last admission with “pneumonia” and over twenty pokes for blood and an IV the next day we are told by HIS doctor that he doesn’t have pneumonia. Then the radiologist read his x-ray and said possible. Just crazy.
So I went to our basement and pulled out the oxygen. At 1L he was staying in the 90s as long as he was relaxed and/or sleeping.
Today he hasn’t been much better but holding his own. I will see how tonight goes and then take him to his doctor tomorrow if things are not any better. Please pray that this doesn’t turn out to be a hospital stay!
Prayers For Ashton Again!
Well my little man is admitted yet again with pneumonia. Here is the update I did for my one group:
Well I got to emerg and when we got into triage they immediately hooked A up to a monitor. He was saying 36. The triage nurse just about jumped out of her clothes and within minutes we were in the back.
Chest x ray and bloodwork was done (which by the way took SIX pokes!)
At 5pm I kept telling them that I needed to go home at some point to get his food. They were telling me to just give him apple juice or milk!!!!!!
Anyways, they came back and told me he has pneumonia in the lower left lobe.
This is when they started with an IV. After me bawling my eyes out because I HATE when he is admitted. Anyways after seven tries I was ready to BLOW UP!
I told them I was leaving to get his food b/c at this time it was after 6pm.
Got back and he was done with the IVs after two more tries. So it took them 9 tries! You should see his poor arms!!!!!!!
Well we get up to the floor and guess what? A nurse untaped his IV to check it and pulled it out!!!! So once again my poor exhausted boy was taken into the room again. Three more goes.
I am home to sleep. There are two nurses on tonight and they only have him and one other boy.
I just can’t believe this is happening AGAIN!
Please pray that A can get through this without being intubated like in August.
A Update
Well A has come off of the vent (was not a fun time!!!) however he is still sounding the same as the day that he was intubated. The doctor from ICU switched his antibiotics yesterday as he has not gotten ANY better and is needing a TON of suctioning. He is having tests done today for Chlamydia psittaci. Long story short, the lady who lived where we are before us must have had two or three birds. It was NASTY to the point we washed the walls, ripped out carpet and replaced it and so on. Well it was the Tuesday A was taken into the place and then Thursday morning he woke up with the fever and then went downhill. Because he has not gotten any better the doc feels it is worth a look into. I was really hoping to have him home by now….but I guess it might be a while. The doctor said yesterday that he “may” have to reintubate. Fingers crossed we don’t go there. The other interesting thing the doctor said was that sometimes kids with neuromuscular disorders and so forth go onto the vent and when they come off have lost their muscle tone that was there. Meaning that this is always a possibility as we are waiting on genetics still. So the suctioning could become a daily need. Praying that it won’t be.
Update
Well nothing has changed. He is still intubated and heavily sedated. Swabs were done yesterday to see if anything shows up or grows. I was told yesterday that his lung x-ray was patchy and they are treating as if it was bacterial pneumonia. However they do think if it is then it is viral. The doctor also said that his x-ray does not really match how sick he is. So no real answers. Thanks for all the thoughts and prayers.
Please Pray For A
Just a quick update as I don’t really have time and I have SO many people asking where we have been. A is currently in the ICU on a ventilator. Doctors believe at this time that he is fighting a double pneumonia. I will update as things happen. Please pray for him.
Happy 1 Year Hearing Age To My Little Man!!!!!!!!
Well a year ago today was when A heard for the first time!!!! I cannot believe that a year has gone by already because it feels like yesterday that we were all really excited about getting him “turned on”. The cochlear implant is the best thing that has been done for him yet. I am so amazed at how well he has done and how he hears EVERYTHING!!!! I am still getting him to work on saying mama but it hasn’t happened yet! LOL
Some more exciting news about A. He got his first haircut two days ago!!! Mommy finally gave in and cut it off. Daddy and I did it together and I have to say that I am VERY happy with the results!!! He looks so much older and more like a little man.
Here is before…say bye bye to that long hair!
During…
After!!!!
After his shower…
That is about all of the exciting news around here. A continues with his episodes at night and continues with turning blue during the day. I happy to say that FINALLY the team at Sick Kids replied to my email that I sent two weeks ago Friday. They are concerned and want to see him in clinic. I emailed them back asking what their thoughts were and what the plan was because I wasn’t going to waste my time going to Toronto so that we could sit there and look at each other. As well I told her that I wanted the date for his next sleep study, ENT followup and genetics.
Now, just needing all you guys to pray again. Auntie A (my brothers fiance) is in ICU right now and is very sick. She was diagnosed about 8-10 weeks ago with cardiomyopathy with a heart function of 20. Well she is now at 17 and is having a tough time. I’ll tell you though, her spirit is AMAZING!!!! She is only 25 years old and needs all the prayers she can get right now. Thanks everyone.
A Busy But Wonderful Weekend!!!!
Well this weekend was very busy but VERY fun!!! On Friday night we had our stag and doe which went amazing!!! We made a TON more money than we even thought which will really help us out around here. The turnout was great and everyone had a good time. Here are some pics from Friday night…
A got a t-shirt too!!!
We loved our t-shirts that Aunt K had done for us!
Posing with our best man and maid of honor before heading out to party!
Me and my girls!
Jeff and I with our moms…
The boys…
Me with my brother and sister…
J and I with our dads…
My dad and I at the stag and doe…
My brother and his fiance. I was so happy that she was able to make an appearance to our stag. She is very ill and it was so great to see her there. Thinking and praying for you always Andrea!
Smile!
My brother and I…
Our best man getting down with grandma S!
Having fun!!
Grandpa S dancing! LOL
Me and my mom…
Saturday…recovery day!!!! A in his pony walker watching TV. He must have held his head up for at least 15 minutes!!!
Aunt K and A…
My bridal shower was on Sunday at my mom and dads place. There was so many people and so many great gifts!!!! I don’t have any pics yet uploaded from then so I will post those in a couple of days.
I had a nice surprise visit today from my friend Vickie and her two daughters Sophia and the new baby Ava. Hopefully we can get together with all three soon…been SO long since we have seen Alina!!!
I’ll tell you, I could not get over how small Ava was and she is about 12lbs!!!! I don’t even remember A being that little. He wasn’t too impressed with mommy holding a baby. And when Ava cried there were a few pouts. He better get used to it because hopefully one day he will get to be a big brother!!!
Sweet Ally
Just a quick post for thoughts and prayers for a dear family I have met here at the hospital. Their little girl is four years old and has SMA. She has been in critical care for just over a month. They took her home today around noon and she will be taken off of the vent at home after spending a couple of hours with mommy and daddy. Little Ally will be earning her angel wings this afternoon. Ally is an adorable little girl who has fought for so long and so hard. I cannot even imagine making the decision her parents have. They are two very wonderful people.
Fly high little one! A beautiful angel you will be. *HUGS & KISSES*
Genetics!
Well nothing new is really happening here. I went home on Thursday night and didn’t come back until Sunday morning! I wasn’t planning on staying that long but the nurses that I had on were wonderful and knew that I needed the break. It will be eight weeks tomorrow that we have been here! And really we aren’t much further ahead than when we started. The only real change has been the fundo and g tube placement. I have to tell you again how impressed I am with how well he is doing with this! I was so anti fundo and it has truly been awesome!
I was able to book the photographer and the DJ while I was home (whole reason I went home) so I don’t have to worry anymore about that. I can’t wait until the day that I get married!!! J and I have been through SO SO SO much together and we have been able to overcome all the bumps in the road. And to top it off we have the most AMAZING son in the world who has changed our lives in ways that we never could have imagined!! Good and bad LOL
So I am waiting to see IGT to discuss more about the botox. And there is one guy in particular that I know in IGT and he is NOT going to be anywhere near A for the botox. He had issues putting a gj tube in and *I* had to tell him that it wasn’t right. So there is NO way that he is injecting botox into saliva glands!!!
I also spoke yesterday for quite a while to A’s nurse practitioner. I told her once again that I would really really like to see genetics. I remember this coming up a LONG time ago when we were in the NICU but it never came to anything. And I have been bugging since we have been here. So finally she agreed to it because there IS the possibility Ashton could have some sort of genetic mutation which means that if I was to have another child they could have the same issues. And I told her that I know a few moms that didn’t get things looked into until they had their second child who started to present with the same issues as the first. I also said that I would be pretty upset if this were the case when I had asked to see genetics many many times. I want to be able to make an informed decision. Now I truly hope that this isn’t the case but maybe genetics might help us lead in a way that could be helpful.
Please say a special prayer for our little friend Ryan…he is on life support and not doing well. He was born at 28 weeks and was just diagnosed in September with mito.
Finally….A Good Day!
Well I have to say (without jinxing anything!) that A has been VERY good the past two days, including today. I went home on Friday night (only the third time in almost 7 weeks) as I had to go and get my wedding dress! I could not keep putting it off as it can take up to 8 months to get in and I only have under 6 months left! The owner of the store though said she would work miracles for me. So before heading home for the night I had requested a certain nurse for the night and then the one for the day yesterday. This was the ONLY way that I was leaving as I knew that they would take great care of him.
Friday night Aunt K and Grandma S came up so that they were able to come along with Aunt Shorty, Grandma C and I. I did end up getting the same dress that I had first tried on in October. I absolutely know that it is MY dress and can’t wait for the day that I get to wear it and walk down the aisle.
Saturday my heart went to my feet because I got a call from the hospital in the morning. It was the doctor that is on for the weekend for complex care. He was asking me about the NPT tube (nasal trumpet) that we had discussed on Friday. Before I left Friday night I told them that I wanted to be here if they were to do it because I felt that I would be the best judge on whether or not it was working. Anyhow he wanted to know if it was okay to put one in if he felt A needed it. So I told him exactly what I told them Friday night. Well he then said “well you aren’t here 24/7 to judge it anyways.” Now I have to say that I wish I had of responded, however I think I was so shocked by what he said that by the time I would have he was already talking again. I should have said, “listen buddy, I AM there 24/7…this is the third time that I have been home in almost 7 weeks. How many weekends have A and I spent just hanging out and then the ONE weekend that you guys want to move your asses and do something I am at home?!?!??!” Oh I was just so angry!
Anyways, A never had to have the nasal trumpet placed and he had a wonderful day yesterday while I was out. Daddy and I got here last night about 10pm and gave him a bath before he went to bed. We then headed over to the hotel for the night. Today was a GREAT day for him and he was VERY happy and seemed like he was back to his old self. I just don’t want to get to excited as we all know how A doesn’t play by the rules. He also came off oxygen today at noon and is STILL off. This past hour he has been desatting quite a bit so we will see, but so far so good. I am MUCH better with seeing 70-80s then I am seeing single digits or 20s! He only had two big desats today and those were both with crying.
Well I am off to bed…everyone keep those prayers coming!!!
Surgery Date!
Well the big day is Monday at 8am for his fundo! I found this out just after I had done my last update. I am still very nervous but I have a lot of confidence in the surgeon that agreed to do it for me. Please everyone say a prayer for A that the procedure goes well!
Today at noon he is having an ng tube put in and then at 2pm we go down for his milk scan to check for delayed gastric emptying. They will be giving him 30mls over 10 minutes and I just hope and pray that he has no delayed emptying at all!!! If he does then they will have to do another procedure while doing the fundo where they make an incision to help the stomach empty faster. However this can then cause dumping syndrome and wouldn’t be a good thing.
Now for some other great news. A is now under care of the complex care team here at this hospital. I struggled with the decision at first because I really have had everything done that I wanted with the team that is on. However they are done in two weeks and then it would be a new team. So this way the complex care team will follow him no matter where in the hospital he is and even after we are released. I feel really lucky to have this option because this team only has so many spaces for kids and they agreed after speaking with me yesterday that they would take him on.
I talked to the main doctor for a good hour and was very impressed with him. I voiced my concerns about how I worry that the plan we have in place won’t happen but he assured me that all would work out the way that it should. It was kind of a difficult conversation because we spoke a lot about if the fundo doesn’t work, about the trach, the vent and then care if he became very ill. He did ask me what I would want done for A if he was really sick but I told him that I can’t answer that because it is something that I would have to be dealing with at the time to know. It is so hard to think of all of these things that the docs are speaking of. Sometimes I feel like A won’t ever be coming home again. I have been loving him every minute of everyday and taking a ton of pictures. I am a worry wart so this doesn’t help matters!
When speaking to this doctor as well he wanted to know what a bad day looked like for me. How I handle things. If I struggle. How dad does. I think he was pretty shocked when I told him that I feel like I have always known that I would have a child with special needs. How I can’t imagine A being any other way. He told me that Ashton sounded like he was very lucky to have me as a mother and how he thought that we were a perfect fit.
Perfect? I totally agree.
My Friday Update
Okay a small update. I received the results today from A’s wash that he had of his lungs on Tuesday when they did the scope. He has a lot of lipid-ladens in the macrophages of his lungs. In English this means fat. Normally there is zero in a persons lungs however A had 40%. This is huge. So what does it mean? Well it proves that A is refluxing and then aspirating into his lungs. SOOOO I am much more comfortable now doing the fundo then I was even yesterday. The only way that we can give his lungs the chance to heal is to do the fundo.
Now, I spoke with the surgeon tonight and their stats say that there is only a 70% chance that the fundo will work for A. In neurologically impaired children it is lower. Of course there are other risks associated with it as well but we are speaking life or death in this case. Easy choice. As for open or lap he did say that they prefer lap. He said that there is less chance of adhesions and most surgeons prefer it this way.
The other thing that was said, is that they will put in a g tube and take out his gj. This kind of has me very nervous as it has been two years since he has fed into his stomach, not to mention the fact that he had these BIG spells everyday with the g tube feeds. However the surgeon did say that he has never seen a child have a fundo and need the gj tube. I laughed and told him not to say that yet! He did mention as well that this procedure will be a bit more because they will have to probably sew up where his gj is and do another incision for the g tube as the wrap will probably pull his stomach up too high.
As well I was told that A’s sodium is very high and this concerns them because he also has a low urine output of .3%/hour. So over the weekend I am to try and give him about 200mls of water to see if that brings down his sodium level.
I will be meeting with the surgeon that is on next week and have my decision ready. No date as of yet. Keep those thoughts and prayers coming!!!! They have worked for us so far!!!!
Ashton’s Scope Is Over!
Well I am happy to report that all is well! A went into the OR at 1:15pm and we were taken into recovery at about 3pm to see him. He wasn’t do so well then but at 5pm he came back up to his floor and is doing VERY well. I am soooo proud of him! He is on .5 of oxygen satting 95+.
So the news from the bronch. No abnormalities of the airway. No floppiness. So no real answers. There was some redness/irritation in his airway which they believe would be from reflux. The sample from the wash of his lungs is being sent out and we will have results from that in a few days.
Adenoids are still in. He didn’t think that it was necessary to remove them.
All in all I don’t know how I feel. I guess it is just hard like this because we still have no real idea of what is going on. But it is wonderful that there is nothing going on with his airway.
Thanks for all the thoughts and prayers. Now we need more as we embark on the next part of our journey…
Big Day Tomorrow!
Well the big day is tomorrow for A’s scope and possible adenoid removal! I am kind of glad it is tomorrow and not Wednesday as Wednesday is the 23rd and I am a bit supersticious about that day. January 23 2005 I found out I was pregnant, 2006 on that day he came home from NICU and in 2007 he was admitted to hospital. Hopefully nothing happens this year on that day!
Funny how I feel. I have been begging for a scope now for a year and now that it comes down to it I am scared out of my mind. As I type this my stomach is turning and I just pray that all goes well. Please say a little prayer for A that he will do well and not have any issues. Thanks so much!
Team Meeting Tomorrow
Well not much new to report. We are just hanging out until tomorrow afternoon when there will be a team meeting to discuss A and what to do. They figured it would be easier this way because he is so complex. I did speak to GI yesterday and she seemed wonderful. Not much talk though about anything as we need to all sit down together to get a plan in place. However I do know that the fundo is pretty much the beginning for them as I did also meet with surgery about this. I was told that the doctor here actually specializes in fundos which makes me feel a bit more at ease about it if we have to go that route.
So the team meeting will consist of GI, surgery, ENT, resp., pulm., and the team that has been working with A this week. I am a nervous wreck about the fundo but I hope that it sorts out much of his problems if we do go for it. They are hoping that with the fundo that his desats that he has will be less. However they do not think that they will completely go away as they believe he has more than one thing going on.
Central and obstructive apnea…well we will have to wait until AFTER his GI issues are figured out and then go from there. One day at a time…..
Thank you to everyone for all of your love and support. It means a lot to me to know that there are so many people praying for A!
We Are Finally On The Right Track!
Well we came here yesterday for a consult with ENT and then a probe/sleep study. Well the probe went in fine but the nurse that put it in refused to leave him after seeing how he constantly desats. The sleep study was then cancelled and he was admitted. He is now in pediatric care where we wait. I have spoken with many doctors so far and they want to get to the bottom of it. Every doctor has SEEN the video that I have of A’s spell in November and they have also seen how he desats over and over and over. Last night he had a sat probe on from 12am-6am and it showed 223 desats. YES that is 223! Of course some of these are not actual but this is a pretty significant number.
We have talked about his entire history and how this has been going on for WAY too long with nothing being done. Of course the docs think at this point that there is definitely more than one thing happening and we just need to figure it all out. Talk of the fundo and of the trach has come up.
So please pray that this is what we have finally been waiting for! I don’t know how long we are here for but I would imagine a while. The doctor yesterday that came in to see him (lung doctor) would not even let us go hang out until the bed was ready for him. We had to go to emergency so that he could be monitored constantly. And he still is obviously. Boy I sure don’t miss the monitor sounds!
One day at a time…
My Dedication To A
Well there is no update as of yet on little Charlotte. The last one was yesterday and it wasn’t good at all. It is at times like this where we really need to take a look at our lives and appreciate everything that we have. I have always loved to write poems, and have been working on one for A for a long time. I thought this would be the perfect time to share it with you all.
For my amazing, wonderful, beautiful son…I love you.
The day I found out I was pregnant
Was a very scary day,
I wondered how I would do it
Worried what people would say.
As the weeks went on,
The feeling didn’t go away
I didn’t think I wanted you
Not knowing the love I’d feel today.
A week before I had you
I told others it wouldn’t be long
Before you would join this world
Too soon, too small, so strong
I remember June 10th so clearly
Started as an ordinary day
But I left work with bleeding
So scared I didn’t know what to say
Stacey took me to the hospital
As my heart raced so fast
Not knowing what was happening
Pains would come and pass
They hooked me up to monitors
While waiting for my midwife
Trying to find your heartbeat
Some presence of life.
Everyone showed up
Their eyes were filled with fear
As I lay there totally helpless
Not knowing when you would be here
The midwife came in to check me
She had sadness in her eyes
When she announced it was time
We thought we’d be saying our goodbyes
I remember holding my moms hand
And we both started to cry
I was so shocked and scared
And just wanted to know why
They watched me very closely
Then sent me for a ride
To a hospital that could try and save you
Doctors that would be on your side.
I was rushed into the delivery room
Many doctors and nurses were around
Things were happening so quickly
My heart was starting to pound.
I wanted to hold off a bit
As daddy wasn’t there
But they were telling me to push
It felt so unfair.
After only twenty six minutes
You had arrived
They held you up very quickly
And I wondered if you would survive.
Grandma then came into the room
And asked me what I had
I told her you were a boy
Oh you would have such a proud dad!
A few minutes later
Daddy was at my side
They had taken the wrong exit
An extra long ride
I’ll never forget the look on his face
When I told him we had a boy
It was one of pure happiness
Excitement and joy.
The doctor then announced
That they would bring you by real quick
So we could take a look at you
A you were so very sick
I never could have imagined
Just how tiny you would be
A mere 710 grams
Yet so perfect to me
It was at this time I wondered
How I ever thought I wouldn’t want you
You were everything I dreamed of
A love so deep and true
Your body was not developed
Such tiny fingers and toes
Your eyes were still fused shut
This isn’t how a birth should go
We could stare at you for hours
Always sitting at your side
Dreaming of the future
Sometimes wanting to hide
You had some wonderful doctors
And a special nurse too
Her name was Danielle
She really loved and cared for you
The first couple of months
Were really touch and go
You were such a sick little guy
But oh how we loved you so
Daddy and I were always with you
Never wanting to be away
You were our tough little man
All we could do was pray
I remember the hours and hours
Of sitting at your side
Tears would run down my face
This was definitely a roller coaster ride.
I would talk to you all of the time
And tell you how much I loved you
I begged you to keep fighting
I wished there was more I could do.
It sometimes didn’t feel real
What we were all going through
But I never woke from the nightmare
Loving you was all I could do.
There were days I felt so guilty
For the pain that you went through
I wondered if I should end it
But I left that all up to you
How someone so small could fight so hard
Was many days beyond me
Never did you give up
Your life was meant to be
There were many many meetings
With lots and lots of tears
Daddy and I wanted you
Despite the doctors fears.
We were told you could be disabled
Maybe blind and deaf too
But we didn’t think twice
Our love would see you through
You really started to grow
As the months went on and on
We thought you would be home soon
But your due date had come and gone.
The infections and problems seemed endless
There was always something wrong
You definitely were a handful
Yet so determined and so strong
Every problem that occurred
You put up the biggest fight
Doctors were sometimes baffled
See, sometimes they aren’t right
After 227 days in the hospital
We got to walk out of there with you
Daddy and I were so happy
We knew we’d do all we could do
Oxygen, monitor, feeding tube and all
We both wanted to hold you and never let you go
Our life finally was on track
But what was to come we would never know
After four short days of being home
More problems started to occur
You had stopped breathing seven times
Once again we felt unsure
You ended up in the PICU
So sick and back on a vent
Many people were praying for you
Truly you were heaven sent.
The days went on and we were so scared
We really thought you might die
But once again you proved to us all
Your life is truly no lie
Home again a month later
This time we hoped for good
We just wanted life to go on
As normal as it could
There were many hard nights
As you suffered so bad
From the nasty reflux
That I wish you never had
Throughout the pain and struggles
You still lit up the days
Your smiles, your love, your happiness
Made everything feel okay
Before you turned one
You were diagnosed with CP
I wasn’t the least surprised
Always feeling it was meant be
I know it was hard for others
To grasp the thought of CP
But once they found acceptance
It would be a distant memory
You bring such joy to my life
I can’t even explain to you
My feelings are so strong
I’ll be here to help you through
Your first birthday was a miracle
So many people were there
All to celebrate your life
With so much love to share
At fifteen months old
Life threw more your way
We found out you were deaf
Another very hard day.
After months and months of therapy
Dr.Papsin announced you were approved
That day was so amazing
I was truly truly moved
Your second birthday was another celebration
Of the life that you have come to live
Your preemie friends were also there
And so many others with love to give
On June 11th 2007
The day after you turned two
We took you in for surgery
Knowing you would pull through
Your life has not been easy
This we all know for sure
As the tests and tests keep coming
So much to endure
I am amazed at the strength you have
Your courage fight and drive
My amazing little man
It is such a miracle that you are alive!
Your smiles are contagious
You have so many to share
Sometimes I wonder where they come from
When life has been so unfair
I watch you as you lie there sleeping
Sometimes I smile and sometimes I cry
Just thinking of what you have been through
Sometimes asking why
You see I worry about the future
And what it has to hold
People can be so ignorant
Judgemental, mean and bold
I wish they would look past the exterior
And deep inside your heart
Cause if everyone did this
They would be doing their part
You have come so far since you’ve been born
That it still amazes me
To think back on the days you have had
When we weren’t sure how life would be
I’m sorry for what you still go through
The guilt is always there
But I hope one day you realize
It is only because I care
I am your biggest fan
I hope you know this is true
Without you in my life
I don’t know what I would do.
There isn’t one day that passes
When you don’t bring a smile to my face
Everyday has been a blessing
You make this world a better place
If something can be done for you
I am here to lead the way
Sure you might not speak it
Your eyes tell me what you want to say
You have taught me so much
To appreciate, care and love
It is so obvious
That you were sent from up above
Daddy and I couldn’t be happier
Than to have you as our son
You make our days worth living
Make everyday so fun.
A, I love you
You are my little man
Life will never be perfect
But remember the word CAN!
Love always your mommy
XOXOXO
Please Help Pray For Charlotte
I am so very sad right now for Kelley and Vann. Their precious daughter Charlotte is not well at all tonight. All the docs can do now for her is watch…..Kelley, my thoughts are with you and PLEASE call me if you need to talk!
Happy New Year!
I can’t believe we are already in 2008! This means in a couple more weeks it will be A’s two year anniversary home! I was going to do a year in review post but since I have so many pictures from the past couple of days I thought I would save that for another time.
Sunday we went bowling for the first time in ages with my aunt, uncle and cousins. We then went back to grandma and grandpas for dinner.
Awww daddy and A…
Uncle S and A…
Aunty A and A…
Last night we headed over to Uncle S’s and had an amazing dinner of steak, shrimp and veggies all barbecued! We were back here in time for A to hang out with his nurse while we headed over to Andreas brothers for a little get together to ring in the New Year.
Please say a prayer for our little friend Charlotte. She is not doing well at all at this time and things are not looking good. Thinking of you always Charlotte!!!!
Prayers Needed For Two Special Friends
First is Charlotte. She is 8.5months old and was born at 29 weeks 5 days. She is currently in the ICU on a vent and not doing very well. Doctors don’t really know what is going on and I know how frustrating this can be. She is an absolute doll and I cannot stop thinking of her. The doctors have had to put her on a paralyzing agent because she just kept fighting the vent. Cultures so far for any new issues have come back negative which is wonderful!
Charlotte
Thinking of you Charlotte! Get better soon so mommy and daddy can have you home again! And of course I am thinking of you Kelley and Vann!
Next is Landon. He is one month older than A and was born at 30 weeks. Landon is also in the hospital with issues that the docs cannot figure out. He is needing oxygen but his lungs are clear and is running a fever. When I have talked to his mom Jen, Landon and A have many similar issues which makes me believe that I really need to get A in to see genetics. They are awaiting a possible diagnosis of mito which is just heartbreaking. My thoughts are with Landon and his family!
Landon
Now for some exciting news, I have gotten a new toy! It is a digital SLR. Canon EOS 40D and I LOVE it!
He Makes Us Believe.... 