Day 16!!!!

Well today is Day 16!!!

I thought today was going to be an absolutely horrible day considering the fact that I was so angry last night that I was afraid I was going to take out my frustrations and everything out on everyone around me. I thought that today I was gonna wake up and just want to go back to bed but it wasn't so bad.

I didn't, I got up and it was a pretty day out. I went outside and it was so pretty. I was worried that I wouldn't be able to talk to anyone who understood how I was feeling and wouldn't you know I got home and was online doing something and then my cell phone rang.

It was CINDY!!! YEP, that's right "Auntie" Cindy called me. 24 and a half minutes on the phone with her and I laughed harder than I had laughed in a while. It felt so good. Thanks Cindy!!! I love you!!!

I had an ok talk with my mom last night too. I'm going to start trying to be in my apartment tomorrow night and see how that goes and I will try to go back to work part time after training for a while and get back into my routine.

I have been spending my spare time working on a scrapbook for Cindy and practicing Crochet. It's actually been really fun and I think it's going to be a really good looking book when it's all done.

Anyway, I am going to go for now just thought I would let everyone know how I've been doing lately.

2 weeks!!!

Wow so hard to believe it's been two weeks already...it still feels like just yesterday I was holding him for the last time.

All I can say is that you don't realize how much one little life has an effect on people until the one little life is gone. After Spencer lost his life, the cards, emails and things started to flow. My fear is that the blog is not getting the readership that it did when he was alive. I can understand it but please know that it is taking a lot for me to come back and post on here more so please do not stop reading!!

Ok well I've said all that I want to say for now.

The Calm After The Storm

Well I don't know when the official calm after the storm will be but that's what I named this entry.

I named it that because when we went to let off the balloons yesterday it felt like that. The lake was so pretty and they went up as if Spencer was taking them the way he wanted them to go. It was bright and sunny but it was windy and a bit chilly. We sat out there and watched and watched until we couldn't see them anymore.

It didn't take the pain away but somehow someway for just a split second it made it feel a little better.

Anyway, I have finally gotten my parents to accept the fact that my visits to Minneapolis are not going to stop. There are just too many people here who were an intricate part of Spencer's and my life and Minneapolis was his whole life so I can't just turn my back on it.

Well I think I wrote enough for now.

Spencer's 4 month Birthday!!!!

Hey Everyone!!!!!

I am gonna throw Spencer a birthday party tomorrow!!!!!

We are gonna get a cake and stuff and have fun and then Wednesday we are going to take 4 balloons to Lake Calhoun and let them go.

Well talk to ya'll laterz.

Day -4 I think!!!

Well its actually the day that I have been dreading ever since Tuesday happened. I had said that I wanted to just sleep through it and then I remembered that I didn't because we weren't celebrating the fact that Spencer wasn't with us we were celebrating the time he did spend with us.

So how do I feel?? I don't know. I'm not looking forward to tomorrow if that's what you mean. I wish I could go back to when I still had my 3 month old little boy and we didn't have to deal with the depressing stuff.

Anyway, so I went out with some people from Minneapolis. It was so nice to get out and have some fun. Every time I think about the fact that I am having fun I feel guilty for doing it and then I have to have people tell me that it's ok to have fun because Spencer wouldn't want me to be sad all the time.

I am not looking forward to tomorrow and I probably will have to force myself to eat tomorrow just because I will be so sad. But everyone will be there. And I am going back to Minneapolis on Monday. Don't know when I will be back. That's the wonderful thing, I don't have to be back at a certain time or on a certain day. I am still on leave so I can make up my own schedule.

Well anyway, I just thought I would check in.

The Memorial

The memorial for Spencer Aaron Cole L'Ecuyer will be held Saturday April 15, 2006 at 1pm.

It will be at Living Hope Baptist Church which is located at 1245 8th Street West in West Fargo.

You can contact me (701-541-3725) for directions.

I know Spencer would love to see as many of you as can be there.

Jasmine

The Worst Day

I just thought I would leave a note to tell everyone that Spencer lost the battle. His problems just got the best of him today.

He was born on December 18, 2005 and died today, April 11, 2006. I will let you know when the service is if you leave a message on here.

I am also going to be working on a way that I can journal about how I am doing.

Thank you to EVERYONE who was there for us through the entire battle pulling for us as much as he would.

You have all been a true gem and I have been blessed to know each of you individually.

If you want to leave an email address or phone number for me feel free to do so.

Bad News

(I am copying this from an email I sent out today.)

It is taking a lot for me to get away from Spencer today. The only reason I am is because his nurse is starting an IV. That's right he is receiving blood today and...oh yea in a surprising turn of events...HE'S BACK IN NICU.

That's right at 5:05pm this afternoon he was transferred back to NICU. He has not been paralyzed yet but it is looking that way. His lungs are collapsing and they are not sure if they can get them to work right or not. They are going to paralyze him if they need to. Dr. Perdue made a change to his vent and his co2 came down but not enough to consider him turned around so we shall see what tomorrow will bring.

I will talk later.

Jasmine

I know it's been a while

I am sorry it's been so long without an update...

My Mom was here this weekend and we had a mini arguement this morning. It hurt to fight with her but it was so nice to let everything be out in the open. We love the other's company and now that she is home I really miss her. We got some really great pictures which I will wrap up this post with.

Well everything is at least stable with the "Little Prince." That is what I find myself living for now. The stableness of not many changes. One thing will hopefully be changing tomorrow. We will ask the Doctor (I think it's Dr. Perdue) if she would be willing to change his Xopenex nebulization to puffs instead of the liquid. It would cut out a portion of the stress that getting his nebs causes him. It's all about reducing the stress.

The Decadron makes him aggitated but it does help. This time his xray looks better. The doctor doesn't think his lungs are AS hyperinflated. Hopefully soon we will be able to turn down some of the settings on the vent.

Anyway, since nothing else is really changing except HE IS OFF ANTIBIOTICS!!!! I will wrap up with a few pictures.

Corrected Gestational Age

Well since there is nothing to really update tonight I thought I would explain why though Spencer is 3 and a half months old by birthday he is only doing things developementally at that of a 7 week old baby.

Spencer was due on February 17th and was born on December 18th so he was born about 31 weeks gestation. 8 weeks = 2 months. His age by birthdate is 3 months and almost 3 weeks. So when you subtract the 3 months and 3 weeks - 2 months = 1 month and 3 weeks. So If I talk about things that he is just now doing that he should have done then you will understand why.

Most people don't understand things like that until you are in the situation but I figured I would get in a little explanation of it.

By the way, Spencer is 7 lbs 11.7oz today. I remember when we were staring 4 lbs in the face and thinking that was big and now he is so much bigger.

By the way!

I forgot to tell everyone that based off of the measurements of length that they did on Sunday, Spencer has gown a whole 4 inches and is now 18 1/2 inches long and 7 pounds 7.2 ounces.

Better News!!!

Well I talked to the Dr. today and he said that in fact Spencer's heart is not failing. There are a few other reasons that he thinks his spleen and liver might be enlarging but the biggest one IS NOT ONE after all. He also said that he will transfuse slower the next time he transfuses Spencer just to try to keep those two things from getting any bigger.

The doctor is also trying to get Spencer over to a formula that they can give him 24 calories/oz of so he gets all the calories he needs to grow.

As far as the lungs go we are going to be bursting him with steroids once every 10 days. The burst will last for 3 days and there will be a taper period in there and then the 10 days will start after the last dose is completed.

The lungs are the piece that kind of ties the puzzle together. The thyroid tests came back that his thyroid is ok so that is good. His heart is ok which is also good. The lungs not working right can in some cases also cause heart arrythmias. The heart problem is being controlled now by medicine. The rounding doctor (Dr. Brasel) thinks everything else will get better when the lungs do and is trying to burst the lungs with the steroid so that they will get better and work more efficiently.

Well that's about all I can think of for now.

Oh yea, my mom found someone at church whose husband is down in texas taking care of some legal stuff to move into my apartment and help pay my rent so I won't have to go up there and pack out because I won't be getting out of my lease now.

A Bit Better

Hey Everyone,

Spencer Aaron is still seeming like he is getting better. At least if not he is sure happier. He has started to do things that normal babies do FINALLY!! Although with premature babies you have to go by their Corrected Gestational Age not their Actual Age. Spencer's Corrected Gestational Age would only put him at like 8 or so weeks old so he might be behind in some things that he should be doing.

We had a busy day. Pastor John came to see us for the first time EVER!!! Also, Spencer had an abdominal ultrasound to check to see why his liver is getting bigger because Dr. Brasel thinks it is bigger and doesn't know quite why. He also got a bath today and was really relaxed throughout the whole thing and smelled really good afterwards.

Well I will leave you with a few pictures from today.







Oh and I almost forgot, Spencer got mad enough at something one time to let out ONE huge wail that sounded like a newborn that doesn't have a trach. It scared his nurse Sue and I.

Please Pray

Please Pray against the monster that plagues Spencer.

He is suffering from Supraventricular Tachycardia which can put so much stress on his heart that it causes it to fail. He is so young and deserves to get so many things that I really don't want him to lose the battle.

Look at what a difference a few months make!!!

December 2005 (in the isolette!)


January 2006 (still in the isolette!!)


February 2006 (on the warmer!!)


March 2006 (in the crib!!)


April 2006 (still in the crib!!)

(this is Spencer yesterday)

I can't believe it is the same little boy!!!!!

Much Better

Hey Everyone,

I am glad to report that Spencer Aaron is doing much better today. He was bright eyed and not upset for much of the day. He was able to talk and play and do all sorts of things.

I will bring you all up to speed on what has been going on lately.

From the eyes perspective there is a disease that affects the eyes that premature babies can get called Retinopathy of Prematurity. It is a disease that causes abnormal blood vessels to grow where there are not normal blood vessels in Spencer's eyes. I am glad to report that he did have Stage One ROP in his left eye. It was not bad enough for surgery but it has completely disappeared. They also divide his eyes into zones on the paper that they fill out to tell when his eyes are mature. They are almost completely mature and he won't have to have an exam for like 5 or 6 weeks. If they are mature at the next exam then he won't have to have one till 6 months from that date just to make sure that his vision is forming ok.

Now, the lung doctor came by today and said that it is possible that Spencer might have Pulmonary Hypertension. I am not sure exactly what that is but they are not 100% sure yet so on Monday Spencer will have a repeat Echocardiogram to make sure. If it is Pulmonary Hypertension then it will be able to be controlled with another medicine.

The Cardiologist also came by this morning and made some more changes to his medicine that helps control the activity of his heart to keep his heart rate from jumping too high (200-250). That could wear out his heart if it isn't controlled.

The blood culture that his nurse drew yesterday has FINALLY come back NEGATIVE. That means that the antibiotics that they have him on ARE working to get him over the infection. Well I will leave you with a few pics from tonight after Spencer started to fall asleep.

Well here ya go... (now he's 3 months old!) (the last picture was when he was 2 weeks old!)



Ok I'm happy now!!



Awwww!!



Slobber Spot!!!



Big Boy Spencer!!!