I have updated on lil Tino but I have been asked by a few "How are we doing?". We are all doing pretty good. The kids are adjusting pretty well to have a new crying/gagging baby at home. They were maybe a little nervous and unsure at first but they definitely love their baby brother. Big Sis always wants to hold Tino and loves trying to make him laugh. She is a big help watching him and entertaining him when I have to step away from him for a bit. She still gets a little nervous when he starts to wretch. She is doing very well as a big sister to two brothers.
Anthony is starting to come around a bit more. He wasn't so sure on how close he wanted to be to lil Tino. He enjoys holding him as well. The other night they hung out in bed and watched a little "Cake Boss" together. It was very sweet. Anthony also makes a run for it when Tino starts to gag. Anthony is afraid he may get puked on, which is a probability. The big 6 yr old is doing well as a middle child. He hasn't been deprived of attention anymore than usual.
We are trying to spend a little more one to one time with them. They seem to be competing for attention between each other. We have the bickering, tattling, poking each other, and such. They also have a great time playing with each other. They would be lost without one another.
They are both doing really well in school. Ysa is in 3rd grade and Anthony is in 1st. Ysabella is excelling in all her subjects except for math (still doing pretty good). Anthony is doing well in all subjects as well. We are working on getting his reading up to speed though. We started reading from his Easy to Read Bible every night. It is working out well. I'm usually way too exhausted to read him a story so it is perfect!
So that is how the big kiddos are doing.
John and I are both doing pretty good as well. We are usually wiped out by the end of the week. We have got a routine down for Tino's medical cares. His dialysis is pretty simple to get going in the evening. The only thing that is wish we didn't have is the feeding attached to him all day. It makes it a hassle to try and go anywhere. I can't just grab him and go. I guess you really can't with any baby but it does take a little more time.
The last few weeks have seemed to be consumed with doctors appts. They should hopefully slow down a little. We have a big 6 hour appt coming up next week. Tino will have to go in for a test to make sure his peritoneum is working well with the dialysis. So it will be an all day thing. This will be our first so I will let you know how it goes.
Other than that we are hanging in there. We are tired by days end but we are filled with joy everyday to have our lil tough guy with us.
This coming weekend on the 15th we will be doing a walk for Miracle Babies. We are excited to be a part of this fundraiser to help support NICU parents like we were for 3 months. I will hopefully take some pictures and share some more with you. We will be showing off our miracle baby!
Until next time!
Our baby boy diagnosed with Lower Urinary Tract Obstruction/Post Urethral Valve(LUTO/PUV) at 20 wks, He was not expected to live due to pulmonary hypoplasia and renal failure, He was born June 19, 2009 @ 34 wks , He has miraculously survived and has began dialysis. Began Peritoneal Dialysis on June 22, 2009 then to Hemodialysis on June 27, 2009, back to PD July 7, 2009
Santino on one of his good days
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Enjoying my binky!
Mommy time
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This is the life in mommy's arms!
Daddy time
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Checking out my daddy
Snoozing after bath time
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Sponge baths are good!
Free of ventilator!!!
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This is what I look like w/out edema
Daddy holding Tino!
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Daddy changing Tino's diaper
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Baby Tino in my arms!
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Santino's eyes are open
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Isn't he just the cutest!!
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Big yawn!!!!!
Tino w/ hemodialysis catheter
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not a pretty thing, poor baby!
In the Children's NICU
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Santino after they placed the peritoneal catheter
Yvette, I'm so glad to hear that you guys are settling into a good routine. For us, it felt like we would get a routine settled in and then we'd have a hospital stay that would throw us off. After so many of them it got easier to get back into the routine once we got home. Is Santino on the feeding tube all the time? Logey has/had a g-tube and we usually only ran it during naptime and all night. It worked well for us this way as we still got calories in him but once he got mobile I didn't have to worry about him yanking on it too much. My children used to run off when Logey started gagging and throwing up as well. It sounds like Santino is gaining weight well! That is awesome as that's always such a big concern with our special little guys. Every pound gained is celebrated! Logan was on breastmilk and then eventually pediasure and then suplena. For weight gain the Suplena worked best out of all. Now he's back on pediasure to supplement whatever he eats. I pray that Santino hits his 10 kgs right at 1 year so he can get his new kidney as early as possible. They usually want them over a year so they can get all their one year old immunizations. My prayers are with you guys!
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