March of Dimes

SHARE HOME > SHARE YOUR STORY > ALL SHORT STORIES > BLOGS

MOM OF ALYSSA, EMILY AND JOSHUA

nicumom

March 2010

Category: Home

Sun

Mon

Tue

Wed

Thu

Fri

Sat

SCARED

Feb 25, 2010 07:48pm (EST)

I am not sure where to start. This really is not about Joshua just life at the moment. When I was put in the hospital 2 years ago to await the birth of Joshua my mother in law was homeless. We had asked her many times to move in with us but she had never wanted to interfer with our life. Well, with me in the hospital I insisted that she move in until she got back on her feet. Fast forward two years later and there are times I want to throw her out on her bum but I think everyone would have those moments. Mike and I really would love to have our privacy back.

But we just found out she has breat cancer. I am still in shock, numb, scared...ready to cry. Here we are just healing from the trauma of Joshua. When I say healing you all know that our normal life is way out side the comfort zone of most normal situations. How am I suppose to handle this? I feel overwhelmed. I just got my feet back under me and the rug is being ripped out agian. I know this is going to be her fight and I can't even begin to imagine how scared she is but Mike and I are going to be the ones taking care of her. I hope I am just over reacting and this is not going to be that bad but she is a horrible smoker, never takes care of herself. It has to be bad. The hospital did the mamogram, ultrasound and biopsy all on Monday it looked so bad. She got the results back today and is scheduled with the surgeon tomorrow.

Wow I am really scared.
I just had to get that out there.

I guess I could give the latest Joshua update. He went to the ped. today. He is in the 10th%tile on height but has lost some wieght so he is on the growth chart at the moment. He was 22lb 13 oz. He never sits still. I guess we have to get more calories in am just not sure when.

Posted by nicumom | Comments: (4) | Permalink

I AM STILL AROUND

Feb 09, 2010 04:32pm (EST)

I feel like all I have time for is reading everyone's blogs. I rarely have time to even comment. Really this is a wonderful development. Joshua is into everything!!! He never stips moving and if he is stopped I have to worry about what he is taking apart.

Joshua started braving walking across the room the day after his 2nd birhtday and our house is not the same. When he was crawling he was atleast not falling. Joshua has to be the most unsteady child ever. He prefers to walk everywhere but he falls into everything on his way. I am consistantly chasing after him to catch him before he adds to his collection of bruises. I know that with a little more body mass he will also develop strenght to keep his balance better.

He is signing more and please all upon demand. He is even using more to tell us things. He loves saying Momma, Momma. When he gets on a kick he says it over and over. He is so very sweet.

We are still in the battle of swallowing. I think this is a losing month. I am trying not to be discouraged. I keep telling myself surely he won't be in 2nd grade feeding himself through his g-tube. I really hope he won't.

I am happy to report that he actually had a bowel movement all on his own. I started giving him MiraLax yesterday and it worked today. Maybe if he can start going he will starting wanting to eat.

He is stating better then ever. We are only giving him O2 support about 14 hours a day!!!

Well, enough about Joshua. Emily has another staph infection. She broke out on her leg last week. I didn't even think about it being staph again until I noticed the same spots on her eye over the weekend. I totally freaked out. She is responding really well to the antibotics. I am hoping that one round will get her all better.

I need to post more often.

Posted by nicumom | Comments: (2) | Permalink

A DAY OF CELEBRATION

Jan 24, 2010 01:22pm (EST)

Yesterday was Joshu's 2nd birthday. Last year I had dreaded his birthday. I did not want to celebrate the most horrible day of my lilfe. I did not make him a cake...I bought one. He was inpatient so it was a very quiet gathering.

This year I decided that it is a day to celebrate. I don't celebrate his birth but his life. My baby has a life. I have not had to worry about his next breath for 10 months. He is doing so well. He is thriving. I needed to celebrate his amazing life.

Joshua was not too impressed by that party. He seems to have some sensory input issues so a crowd, loud noises and too much stimulas can make him a little nervous. Once he got used to all the people he started to have a good time. He loved me cake. He thought it was great. Mainly because he thought it was a toy.
I'll have to post a picture of it.

All in all, it was an amazing day. I did find myself crying a little and fighting back tears during Happy Birthday.

I guess I can't totally block out the feelings that hurt so badly. No one should have to remember being asked if you want measure taken to save your baby, no one should remember asking if your baby is still alive over and over for hours. i honestly only remember seeing Joshua for an instant before being whisked to the NICU and I don't recall seeing him again for three days. I was so sick. Aweful...

I am glad I have my boy and he is doing so well. Those are just memories and I don't have to hang on those. I have my boy to love and hold. I can make so many good memories. I have nothing to cry about.

Sorry for the jabbering...these are just the many thoughts that have bounced around.

IMG_7715

IMG_7789

Posted by nicumom | Comments: (8) | Permalink

BIRTHDAY TIME

Jan 21, 2010 06:04pm (EST)

Happy Birthday Joshua!

Joshua is celebrating birthday number 2 on Saturday. This has been such a wonderful year. Joshua has become such a happy toddler. He still has some health issues but they seem so insignificant compared to the issues we were facing a year ago.

May was the last time Joshua was inpatient at Kosairs. He has had his eye muscles tightened and relaxed in the right places. He is on very little O2 support. Though the steps toward eating are very small he is making progress.

Alyssa and Emily spoil him as rotten as Mike and I do. One of his few words is baby. I do believe that is what he refers to himself as. He is so loved and adored.

I am so honored to be Joshua's Mom. I am so proud of all his many accomplishments.

As you all know...words can not express my feelings.

I love you Joshua

http://www.whascrusade.org/ Joshua is in a photo contest to raise money for the WHAS Crusade for Children.

The picture is of the first time I held my precious miracle. He was 4 weeks old.

100_0373

Posted by nicumom | Comments: (5) | Permalink

CHRISTMAS

Dec 28, 2009 02:20pm (EST)

Our appoinment with the pulmonalogist went very well last week. Joshua walked from the hospital Nana works in all the way to the pulmonalogist office using his new walker. He was smiling the whole way.

Everyone in the office was so excited to see him walking. They even let him take his walker behind the counter to check everything out.

Dr. Eid took all the credit for Joshua being able to walk. He even told me that I was very lucky to have he and Dr. Morton as Joshua's pulmonalogist. Nothing like having a healthy ego.

Mike and I do agree that Joshua has made tons of great progress because of the medical treatment that Joshua has received from them. After all we have been through I really wish that we had been referred to their office as part of our discharge from the NICU.

Christmas was wonderful. We took Joshua to all the family events this year. So everyone on both sides of our family have now got to meet out miracle man. It felt good to finally show our baby boy off.

The girls had a wonderful time playing with all the great things Santa left. It has been an amazing Christmas. We have loved being together and healthy.

Posted by nicumom | Comments: (2) | Permalink

DEC. UPDATE

Dec 19, 2009 03:59pm (EST)

Our amazing boy is doing so well. Joshua started taking steps all on his own this past week. He can take about 5 steps before he loses his balance. Now that he knows he can walk he wants to be down practicing all the time.

Mike took Joshua to the eye surgeon on Thursday. The appointment was full of great news. He is showing no signs of crossing his eyes. He does not have to wear glasses or use the eye drops to blur his vision anymore. One eye is still not level with the other eye but this can improve over time without surgery. He will have to be seen every 2 months for now but we are so happy that he may not have to have another surgery.

I am taking Joshua to see the Pulmonologist on Tuesday. We are hoping that he thinks Joshua can be taken off all the diuretics that he takes. If we can get him off of the diuretics he will only be taking daily meds for allergies, his tummy issues and asthma.

We are looking so forward to celebrating this Christmas with our precious family. Joshua is healthy and the girls are ready for a Christmas without all the hospital drama. Well, so are Mike and I.

Merry Christmas to all of our biggest fans.

IMG_7371

Posted by nicumom | Comments: (4) | Permalink

GOOD NEWS

Nov 17, 2009 06:48pm (EST)

Surgery number 4 went very smoothly. Joshua is home recovering this evening. He is very grumpy and in pain. He still has not opened his eyes up all the way. He should be feeling better in the morning.

Dr. Ikram tightened his outside eye muscles so that he can look to the sides without turning his head. She is hopeful that this will be the final surgery. We will have to wait and see how his eyes look once the muscles heal.

Joshua is starting to stand without holding onto anything. He is so proud of himself. He is also starting to ask for his walker so he can zoom around the house. He just about runs when he is using the walker. Everyone has to watch out or they could lose a toe.

Posted by nicumom | Comments: (4) | Permalink

WE DID IT!

Nov 09, 2009 01:17pm (EST)

We got the H1N1 shot for Joshua. I thought Mike was going to throw up as it went in. I really believe that we made the right deicision. Joshua is almost 2 and still on O2 he is very compromised and he would be the baby who would be on the vent or even worse. I would rather live with the other chances.

Joshua also got his synagis last Thursday. I can hardly wait to see the bill. We are guessing $4000. He is so much bigger this year. We are glad we have already met the deductible for the year and we changed our insurance policy for next year so we don't have to pay for the shot in January.

We had awesome news at the cardiologist today. Joshua's heart looks great. His muscles are not growing thicker because of his lungs still being damaged. His mital valve is still leaking but they could tell toayd that it is caused be a abnormality in the valve. The specialist feels like the abnoramlity will stay the as his heart grows. The pressure in that valve was perfect so the leak is not causing any need for alarm. I was so happy. He will need to be checked every 6 months for a long time but all looks like it will just be a precaution!!!!!

Posted by nicumom | Comments: (3) | Permalink

LIVING STRONG

Oct 28, 2009 06:34pm (EST)

When this journey started almost 2 years ago I never dreamed that our family would be so challenged. Over and over people reassured us that in 2 years we would be amazed by how well Joshua would be doing. I would tell myself he would be okay but I know that I never allowed myself to truly believe it. Now, as we quickly approach the 2 year mark Joshua is exploding with personality, movement and life. He is not allowing life to happen around him anymore. Joshua is involved in every minute of our day. He has the most precious laugh my ears have ever heard. His smile lights up my day. He is living life and loving it!

We are nearing the end of this chapter of our life. Soon, very soon, I think I might be able to read the final words of this chapter called Bringing Home a Very Sick Baby and I am going to start enjoying the chapter of having a Happy Well Toddler.

We give all the credit to our Heavenly Father. This journey has been so difficult and God has held our family close to him through every tough decision, sleepless night and tear filled day.

**Joshua is scheduled for eye muscle surgery on Nov. 17th. Pray the he continues to grow stronger and stays healthy...Thank you.

He is going almost all day and night O2 free!!!!!

Posted by nicumom | Comments: (6) | Permalink

SERIOUSLY?!

Oct 21, 2009 06:45pm (EST)

I just saw a the show New. Mercy. In the show an expectatant women is in a car accident and has to deliver her baby early. They of course did not show a baby but one could tell it was very small 2 or 3 lbs.

The show actually showed the Dad holding the baby in the mother's hospital room and everything was peach keen. He handed her the baby and the Dr. told her the only thing wrong was the baby was small.

I mean seriously that show just showed all kinds of people that prematurity is a little scary for a moment but it really is no big deal. Everything was made to look so easy. URG!!!!

Posted by nicumom | Comments: (8) | Permalink

Archives