Mommy time

Mommy time
This is the life in mommy's arms!

Daddy time

Daddy time
Checking out my daddy

Snoozing after bath time

Snoozing after bath time
Sponge baths are good!

Free of ventilator!!!

Free of ventilator!!!
This is what I look like w/out edema

Daddy holding Tino!

Daddy holding Tino!

Daddy changing Tino's diaper

Daddy changing Tino's diaper

Baby Tino in my arms!

Baby Tino in my arms!

Santino's eyes are open

Santino's eyes are open
Isn't he just the cutest!!

Big yawn!!!!!

Tino w/ hemodialysis catheter

Tino w/ hemodialysis catheter
not a pretty thing, poor baby!

In the Children's NICU

In the Children's NICU
Santino after they placed the peritoneal catheter

Saturday, August 29, 2009

I feel like I could become a nurse....




I know nurses do a lot more than what I have been learning in the last few days but I think I could do it. I have been handling my new responsibilities a lot better than I imagined I would. I was able to insert Tino's ng tube today with no problems. I didn't have to worry about placement too much because his stomach content came up the tube. Kind of yuck! I did his cath in his poor lil wee wee. He didn't like me too much for either of the things involving placing tubes in small holes.


He was pretty worn out by the time I left this evening. He had a busy day. He had quite a few grandparents visit him today. He enjoyed being held by his Grandpas'.


I think after next week John and I will definitely feel confident enough in what we need to do to care for him. I'm sure I will still be a nervous wreck the first couple of weeks. It will be so nice to cuddle him without wires and constant beeping sounds.


Monday, August 24, 2009

Surgery went well !

Santino had his surgery today to get rid of that yucky valve that caused so much damage. John and I saw a picture of the little piece of tissue that was causing the obstruction to Tino's urethra. I just can't grasp how such a small thing can cause so much in my lil guy. The PUV is gone now.
While urology was working in that area we decided to go ahead and have him circumcised as well. He seemed okay once he got out of recovery. We'll see how he is tomorrow when the anesthesia wears off.

Now that he won't need the foley catheter, John and I will have to catheterize him 4x a day. The urologist wants us to do this so scar tissue doesn't form and make sure he doesn't have urine pooling in his bladder.

So before Tino is discharged we will have to learn how to place his NG tube, give meds in his NG, catheterize him, and do PD. Sounds easy enough right?? I'm feeling a little nervous and overwhelmed right now. I know once I get into a routine it will get easier. I hope!!

Thursday, August 20, 2009

2 month immunization, yuck!!!

Yep, Santino had his immunization shots today. He had 3 on his poor lil legs and 1 was put in his ng tube. He was obviously not a happy camper. He screamed, of course, but as soon as I picked him up he was fine. He was just not having a good day. He was already a little fussy from having some gas I believe. The docs started him on bolus feeds so he was getting 60 cc's in a hour. I don't think his tummy was ready for that yet. He did do fine yesterday with it but today not so hot. They were also adding some rice cereal to his milk to help with a diarrhea issue he has right now. His poor lil bum is red and raw, OUCH!!

His dialysis seems to be going pretty good. He was a little puffy today. But the renal docs think he looks okay. They may change his solution to 4.5 % tomorrow. They did take a chest x-ray just to make sure his lungs are fine. They are good. He is at 150 cc's /12 hrs now. So we are getting close to coming home.

On Monday he has an appt. w/ Urology. He will be getting some minor surgery to ablate the PUV. If there still is a valve to ablate. He will have to be sedated and put on a vent for that. Pooey!! The Urologist said we will have to catheterize him ourselves every so often to make sure scare tissue doesn't form. That is better than having to carry around a foley catheter bag.

That is all the newest that I can think of right now. I will update on how the surgery goes on Monday.

Tuesday, August 18, 2009

Our lil tough guy is moving along

Santino is doing well in the IMU. He has his own pad to himself, some natural light, a lil t.v., he is all set. I do still miss the NICU nurses. I miss the one on one he had there. Don't get me wrong I am glad he is getting ready to come home. It is hard not being able to spend as much time with him as I would like. So when I'm not there w/ him I want him to have the attention he needs and unfortunately the nurses have other patients to take care of as well. Guilt!!!

He is doing really well on the PD cycler. He is at 130cc's on his fill now. He is down to 14 hrs a day on dialysis. The goal before he gets discharged is 150 cc's/ 12 hrs. Almost there!

John and I had our first training on how to use the cycler. It seems pretty easy to figure out. The only intimidating thing about it is keeping everything very sterile.
We will be vigilant hand washers.

So from now until he comes home we will have training twice a week on how to use the cycler.

Some have asked his weight. It does vary because he retains fluid. The most recent weight he was 8lbs 5 oz. He will be 2 mos tomorrow. Unbelievable!!

Tuesday, August 11, 2009

Moved in to the IMU today!


Today was a big day for us. Santino was moved over to the IMU (Intermediate Care Unit). I called this morning over to NICU and his nurse was getting him ready for the move. I was very excited but at the same time a little sad. We have become very attached to Santino's wonderful nurses. They have done an amazing job taking care of him and also taking care of our emotional needs. They have a tough job and they are AWESOME!! So if you are reading this.


Thank you NICU team! Especially Amy (his 1st primary), Christy, Dionne, and Janet. You all just made us feel so comfortable leaving him there and were always so caring.


Thank You Amy for letting us hold Tino for the first time, for always explaining everything to us, watching out for our lil guy, for hanging in there when he made your day busy, for just listening to us when we needed to talk and helping us have a laugh.


Christy , thank you for reading Santino books (BFG), listening to praise music w/ him, letting me cry and lifting me up, and making us feel so comfortable.


Dionne (hope I'm spelling it right), we never got to meet but you really touched our hearts. You have the sweetest voice and I know our boy adored you. He made sure he stayed awake so he could hear you talk to him. Thank you for all the sponge baths you gave him, singing to him, holding him , and understanding his needs, his likes and dislikes. Thank you for letting me know all the cute little things I missed.


Janet thank you for always checking on us and Santino. You will be a wonderful Grandma when that day comes.


I'm happy that Santino was blessed with such caring people. You all shared your hearts with him and I thank you. I hope we will stay in touch. I have to stop or I will make myself cry.


So Santino is in the IMU. He is officially at 100 cc's and on the cycler. We didn't get to stick around to see how it works but that will happen soon. The kids are able to go visit him finally. It has been a few wks since they have seen him. We are moving in the right direction to get him home. I am a little nervous but it will be good to hold him whenever I want. I can't wait!


Prayer request:

Pray for my blog buddy, Stephanie. She is having some marital problems and her husband is about to be deployed for 5 months. I pray that they have some resolution before he leaves. She holds a dear spot in my heart. Her strength and faith in God helped me tremendously when I was pregnant w/ Santino and was given our fatal diagnosis. She helped me have courage and to learn how to enjoy my pregnancy when I just wanted to give up. I pray that she remains strong and her husband sees her strength and receives strength as well. Thank You.

Sunday, August 9, 2009

Santino is moving forward, Praise God!


It seems like it has been forever since I last posted. We have been busy visiting Santino, John working, and enjoying some time w/ family. My cousin and her 2 kids came and stayed a few days w/ us. It was nice to have the help and the much needed company. I had been really stressed out and depressed from Santino's bad week he had. I had a lot of feelings of guilt and the feeling of no control over his situation. Talking w/ my cousin and my sister in law helped me a lot to get rid of those feelings. So thank you cuz and Lisa (my Paul) !


The power of prayer!


Santino is now doing great. He has made great progress from what he was going thru a couple of weeks ago. He is breathing just fine. He is now up to 90 cc's on his dialysis. He needs to be at 100 cc's to go on the cycler. He will be on the cycler when he comes home. Right now his nurses are manually doing his dialysis (draining & filling).

He is at 18 cc's per hour on his feeds. He is tolerating that very well. He is only being bottle fed by the Occupational Therapist (OT). The OT doesn't want anyone messing up her system. Tino has an aversion to objects being put in his mouth because of the bad experience w/ the vent down his throat. So when we try putting the binky or bottle in his mouth he tends to gag. So OT is working on him taking the bottle. That also means I can only nurse when the lactation consultant is observing. Boo to that!!


So at the rate Tino is moving a long he may be coming home sooner than we expected. He will be transferred over to IMU for a bit before he is discharged. I'm not sure how long they keep them in that unit for.


I need to get moving. We still need to buy him a car seat and stroller. I was also planning on taking a infant CPR class. We have to clean our room up to fit his crib and such. Yikes!


I still can't believe he is here with us and doing well (better than what we expected). I pray he continues to do well and put up the good fight.


Isn't my chunky monkey, sooo cute!!