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

Monday, December 14, 2009

We have been busssssy....

This has been one busy month. My days are usually busy but this seems exceptionally so. I guess trying to get ready for our Christmas celebration has a little to do with it as well. We are very excited that we have our very special baby, to celebrate his first Christmas, with us. I finally took a picture of all 3 kids for our Christmas card last night. Wooooooh! What a task! It should be enjoyable and cute but when I have a clown for a son it makes things difficult. I will share some of the retakes :)

I still haven't bought anything for Santino for Christmas. I'm at a loss. Anthony wants to buy him a stuff animal zebra and a book. There is one idea. I should have something for Tino to unwrap but our house is so cluttered with Baxter boxes (dialysis supplies) and baby gear I just can't justify more STUFF! I think I'm going to submit a story to Redbook to get them to send that gal to unclutter my house. Serious!

Anyhow, back to the craziness. Last week was full of doctor appts. for lil man.

Monday he had his P.E.T. test (Peritoneal Equilibrium Test) which required us to be there from 9:30 am - 3:30 pm. We love you Tonia (dialysis nurse) but don't really like spending that much time at the hospital with GERMS!

The PET test required that Tino start dialysis the day before at 1:30 pm. He did really well, better than expected even. He slept thru a good bit of it and when he was awake he sat in his swing and watched Winnie the Pooh. Luckily I had a cassette with longer tubing! So he did his usual 12 hour cycle with a last fill of 210 cc (uncomfortable).

For the test he had to be drained when we got there, weighed and filled again. I believe Tonia took a sample of the fluid as well. Then we had 2 hrs to kill time and go back again for the same, drain and fill. 2 more hours then same. Also some blood for labs. That was the exciting PET test. The results are that his peritonium is working well meaning dialysis is working well for him. It doesn't always work that great for lil ones and they end up having to go on Hemodialysis. I'm glad it is going well for him, the longer on peritoneal dialysis the better. So this was our Monday. Oh, plus there was a storm so it was pouring rain and windy all day. I know California storms are nothing but we are just not use to the rain. The worse rain I have driven in was in Pennsylvania thru the Pocono Mnts. Buckets of rain!!

So Tuesday was a little better. We began our day with Physical Therapy. Tino was in a good mood so that helped. The therapist said he is a little delayed which is to be expected. He still isn't sitting up that well and doesn't have the greatest neck strength. He hasn't been rolling over much. He still has torticollus which causes his neck to be tight. He has a hard time looking to his left. So what I need to work on with him is more sitting up, tummy time, pulling him up by his hands when he is lying, and holding him on my right shoulder so he looks out to his left. Anything that helps strengthen his neck muscles. So we have our little work out are with his exercise mat, Bumbo chair and toys.

His head is a little miss shapen from the torticollus. His head protrudes a little in the back to the left. His head measurement was 4 cm off with our evaluation now it is 10 cm with the last visit. If I remember correctly she said his measurement is only moderate for severe it has to be 14cm. If it reaches 14cm our insurance should authorize a helmet for him to help reshape his skull. I'm hoping we don't get to that point. That would mean more appts for him and a uncomfortable helmet along with everything else :( So Tino and I are going to be doing lots of PT!

After that appt we had to make a quick visit to Tonia for his Epogen shot. I usually do it at home but when I called to order a refill they told me our copay was $530.00 !!!!!!! OUCH!!!! I thought maybe there was a mistake but NO! It is for a 3 month supply but $530.00 right before Christmas. When we just put $1000.00 into my car for new shocks and tires!!! We have been doing some investigating to see if there was a mistake but no such luck. We are covered for the rest of this month for his shots but next month it will be time to cough up the money. I hope St. Nicholas visits and leaves us a pouch of gold. :)

Wednesday Tino had his regular dialysis clinic when the doc goes over his labs and decides what meds he needs or doesn't. She also checks his PD catheter site, looks at him for dehydration or fluid overload. Checks his vitals and takes his temperature. Which he had a slight fever and had a major diarrhea blow-out. Great, right! The doctor (Dr. Benador) and nurse (Tonia) thought his breathing seemed a little labored as well so they wanted a chest x-ray to make sure his lungs were fine. So when we were done with clinic we took him to radiology for the x-ray. While waiting a little girl puked all over. Yuck, GERMS! The x-ray looked great, his lungs were clear as could be!

I also meet with his dietitian. She weighs him and measures his length and compares his growth to the month prior. His growth pattern has not increased much compared to last month.. Hopefully he starts growing or he will need growth hormones. She did increase his caloric intake. We were all excited that he has been drinking at least 50 ccs a day from a bottle. Less time hooked to the Joey (feeding pump)!

Wait for his new meds at hospital pharmacy because so far only pharmacy that can do compound meds. Ate a late lunch while waiting. John was with me for this appt which I was very thankful.

What a day, huh! What should only take a couple of hours we were there from 11-4.

Tino's fever didn't go away so I ended up taking him to his pediatrician Thursday morning. Of course he didn't have a fever when she saw him. She figured he just had a stomach bug and it would go away. She was right, 24 hr stomach virus.

He is all good now ( knock on wood!).

Tomorrow we go back for some more PT and hopefully one more appt with dialysis clinic and done for the month. Maybe an appt with Pulmonology to check out his lung/oxygen status ?

I hope everyone has a Wonderful Christmas! We are counting our blessings :) May you be blessed as well!


The Pepe Family

Wednesday, November 25, 2009

Thankful to be home!

Santino and I are finally home! Santino's stay in the hospital lasted 8 days. It seemed very long but I'm thankful it wasn't any longer. My lil guy recovered very well. He was intubated for a total of 3 days. Once he started waking up from sedation he wanted that tube out of his throat! He was extubated Thursday morning and after that he was a new baby. He was smiling and much happier than he had been in a while.
There wasn't any official diagnosis on what was going on with him. We think that he didn't fully recover from his bronchiolitis and he had fluid overload from dialysis not working so well. The discharge report just said respiratory failure (scary!). Whatever it may have been I'm glad he is better and home.
I finally got to see my big kids today. I hadn't seen them since Friday and was missing them very much! They had fun hanging out with Poppy.
Tomorrow is Thanksgiving and we are plenty thankful. Thankful for our precious Santino, beautiful Ysabella, and comedian Anthony. Thankful for our store prepared Turkey Day meal. Thankful for the wonderful doctors and nurses that helped Tino make a full recovery. Thankful for the El Cajon Fire Dept. Paramedics who acted quickly in taking my lil guy to nearest hospital. Thankful for our wonderful church family who is always a phone call away when we need them. The list can go on and on. Right now I'm thankful for my 3 kiddos sleeping and my warm bed waiting for me. Hope everyone has a wonderful Thanksgiving!
God Bless!

Wednesday, November 18, 2009

Still in PICU

Nothing new as of today. Santino is still intubated and on a painkiller/paralytic. It is so hard seeing my soon to be 5 month old not moving around and not smiling. He was starting to become a little more active now and it is so fun to watch him grow. Now we are at a stand still. I am thankful he is being well taken care of and looks better.
The doctors are still not sure what type of infection he is fighting. They have given him Tameflu ? incase it is H1N1. No more blood transfusions because his hemoglobin is much better. The respiratory nurses are suctioning out his lungs to get all the gunk out. His right lung looks good but his left side is still a little junky. They haven't needed to give him a breathing treatment since Monday evening. Whatever it is he seems to be fighting it. His fever has gone away as well. I know I am rambling, I'm just a little sleep deprived.
I will be going home tonight and John will stay with the lil guy. I miss my big kids and need to give them some hugs. Unfortunately I'm picking them up from school and taking them to the pediatrician to get the H1N1 shot. They won't be too excited to see me!
Thank you all for your prayers and concerns. We are hanging in there. Our spirits are still good. John and I say the nurses must think we are nuts because how much we are still able to laugh at things. Laughter is good or we would go nuts!

In His Grace,

Tuesday, November 17, 2009

Santino's 1st & 2nd Ambulance Ride (hopefully last!!!).

We are back at Rady Children's Hospital as of yesterday. It all really began Sunday morning. We woke up a little early to get ready to go to the Miracle Babies 5k walk. But Santino had other plans in the works. He had only UF'd 95 on his dialysis which it is usally from 170 to 250. He looked puffy from fluid overload. We called the on call nephrologist and she suggested putting him back on dialysis for a few cycles to pull off more fluid. We decided to have John stay home with him to start the dialysis and I took the kids to the 5k.
We had a good time at the walk and they got out a lot of energy.
When I got back home I gave Santino a breathing treatment and he seemed a little better. He had seemed a little pale to me and lethargic. I took his temp and it was 100.1. He cooled down pretty quickly after that and didn't really spike a temp again. We decided to see how he did over night. John went to work as usual and I watched Tino over night.
He slept pretty good until around 2 am. He was irritable and seemed uncomfortable. I thought maybe he was constipated. He seemed like he was trying to push something out. He was bearing down but he suddenly just froze and seemed like he wasn't breathing. I hurried and turned on the light and picked him up. As soon as I picked him up he started crying and seemed fine. I was getting a little worried at this point. I sat with him at his crib until 5:30 am and he finally fell asleep. I rested a little until it was time to get the big kids up for school.
At 8 am sharp I called the pediatrician to get him in. They had an appt available for 10:50 am. I called John at work so he could come home and go with me. I knew something was up. I didn't want to take him to the ER because of the wait and all the GERMS.
So anyhow we get to the pediatrician and she said his coloring did look off and his breathing was rapid. She decided to get his oxygen sats and it was 47!!!! It should be 100%! At that point she said she was very concerned and was calling and ambulance. They got there within 10-15 mins. I was crying at this point because I felt horrible that I didn't take him in sooner.
While we were waiting the pediatrician got him started on some oxygen with some Xopenex.
The fire dept arrived and Santino and I got loaded up to head to Children's. They had him hooked up to oxygen and monitors. On our way his heart rate decreased as well as his sats. So we detoured to the nearest hospital. Which Children's was only 5 mins away. I was panicked at this point but a calm panic. I called his dialysis nurse to let her know and I lucky remembered to call John to have him go to the right hospital.
We got to Alvarado hospital and they gave him oxygen, drew labs and began antibiotics. His color started looking a lot better. Alvarado is not experienced with infants so the CHET team was called from Children's . They arrived about 30 mins later. John and I were so excited when we heard CHET was on there way.
When CHET arrived with the NP they decided to intubate him there rather than have him stop breathing on the way to Children's. I was hoping to never have to see him intubated again. It was so hard seeing my little baby sedated and with that big tube attached to his lil face.
So we loaded up again in an ambulance and were brought to the PICU here at Children's. We have a new set of nurses to become familiar with. Tino is making his rounds.
So far the tests they have ran: MERSA, RSV, INFLUENZA A & B , have come back negative. The H1N1 test goes to the county so that hasn't come back yet. So they are still not sure what it is he is fighting. Hopefully nothing too serious.
He is still intubated and fully sedated. All his vitals have been good. We are just waiting to find out what we are fighting here. I will keep you updated with anything new.
We appreciate all your prayers and concerns.
In His Grace,
The Pepe Family

Sunday, November 8, 2009

How are we doing?

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!

Saturday, November 7, 2009

Santino at 4 months

A lot has happened and not really happened since I last posted.
My lil guy is now 4 months. He is doing wonderfully. His dialysis is working very well. We haven't had any problems with Fibrin or any signs of infection. His labs have been going up and down on different things. His blood pressure was remaining high, his phosphate a little high, low iron, low hemoglobin, so his meds were increased or a new one has been added on. He has a total of 7 daily meds and 1 (2x weekly). He also has a nebulizer now w/ Xopenex. I give him this whenever his breathing seems really labored. Usually at night before bedtime. Other than that he is doing really well.
He has reached 13 lbs 9 oz. Yay, Tino! We have 9 lbs to go for transplant.
He still has the nj tube which is working out well for him. The only thing is now that he is getting a little older and stubborn, he keeps trying to pull on it. I have a feeling he will be pulling it out sooner than later. The doctors have asked if we want to put a G tube in but we are still a little hesitant. We don't want to compromise his peritoneal dialysis. We really don't want him to be on hemodialysis again. It was really rough on him. Granted he was a teeny baby but he still is my lil baby. We'll see what happens with that.
Tino also has a hernia and the Urologist is reluctant to correct that for the same reason of compromising his dialysis. We are to just watch it for now and make sure it doesn't become irritated and red.
We are hopefully going to start seeing Physical and Occupational Therapy. We are waiting for authorization right now. We will go to PT for his Torticollis of his neck. We are doing stretchs to try and loosen it up on his right side.
For OT this is more for sensory and his fine motor skills. We are working on sensory of his mouth and his grabbing for objects. He still hasn't wanted to hold a rattle. He does like his hands in his mouth and his lil satin blankey he has. We are working on it.
This is all for his health updates. Other than that he is a happy baby who brings smiles to our faces everyday.

Saturday, October 10, 2009

We are back at home!

We just had two nights in the IMU. Tino is feeling a lot better. He is back to his smiley self. He ended up needing breathing treatments every 4 hrs and some suctioning of his nose and throat. He had bronchiolitis which I guess is different from bronchitis? Hopefully he won't continue needing treatments because of his underdeveloped lungs.
The hospital stay actually wasn't too bad. We got to see some of our previous nurses. They were surprised by how much Santino has grown. He is a little over 12 lbs now! I actually got some rest compared to what I get at home.
The first night the nurse set up his dialysis while I dozed off. She gave me a mask to wear while she was setting up. Well I guess I was so tired I fell asleep with it on and slept that way for a while. She thought it was quite amusing. It was nice to be able to sleep and know someone else will take care of him if he needs anything.
We will be back to the hospital on Monday for some lab work. The nephrologist wants to check on his potassium level which was high. She ended up changing his formula to Similac PM 60/40. She also increased his dialysis fill to 180 ccs. He tolerated it well last night.
Hopefully he sleeps as well tonight as he did last night. He did have a little help with oxygen last night. I hope he sleeps well , so I can too!

Friday, October 9, 2009

Back in the IMU

Well lil Santino is back in the IMU here at Rady Childrens Hospital. We came in yesterday for his dialysis clinic for labs and ended up going to the ER and getting admitted. He had been having some labored breathing and congestion so I knew he had a cold. His dialysis nurse thought it would be best for him to get checked out rather than go home. So we went to the ER and they kept him for breathing treatments and some suctioning.
Tino does seem to feel better w/ his treatments and suctioning of the mucus. He slept more comfortably last night than he has in a few nights. Me not so much. I'm glad he isn't too sick. They said he has bronchitis. No H1N1 or RSV. Hopefully by tomorrow he will be discharged.
He has been out of the hospital for a month. I was hoping it would be a lot longer. I'm glad he is getting the care and love that he needs here at Childrens.

Friday, October 2, 2009

Santino goes to the Zoo

Santino had his first trip to the San Diego Zoo today. He had a great time sleeping thru it. When he was awake he enjoyed looking up at the canopy of leaves. He was a well behaved lil boy.
Tomorrow we are having our first overnighter out of town. Tino is doing his first travel. I'm a little anxious but I'm sure it will be fine. We have a long list of supplies that we will need to take. It is all good. Everyone will be excited to see lil guy. Wish us luck!

Friday, September 25, 2009

Santino's Daily Regimen

Some of you have been asking what all we have to do to care for Santino. Well I will do my best to explain the day in the life of Tino. I'm going to begin in the evening w/ dialysis then end w/ dialysis.

8pm - 9pm Hook Santino up for his 12 hr dialysis treatment.

1-2 am His feed ends and his Joey pump beeps at us. Flush out his nj so it doesn't get clogged.

6am - 7am Start him on his feeds again of 150 ccs/ 25ccs per hr

7:30am Give him his meds: Prilosec, Amoxicillin, and Calcitrol

8am - 9am Disconnect Tino from his dialysis treatment.

We then weigh him and take his blood pressure.

If we feel motivated we then put his eye drops in and cath him.

(The cathing is to keep his urethra open where his valves were ablated)

Noon He gets his vitamins: Nephrovite

We make his next batch of formula for the day. Which consists of:

Good Start Gentle Plus, Duocal, Benoprotein, and Oatmeal/Rice Cereal w/ a

splash of sodium chloride (7.5 ml)

Start his next feed of 150 ccs/ 25 ccs per hr

2pm He gets his Iron supplement (can't be given w/ vitamins or prilosec)

We will probably cath him again.

Hopefully he is taking a nice nap for us!

6pm Change his bandage on his PD catheter

Flush his broviac catheter w/ heparin

Tue/Fri give him his shot of Epogen

Start his last feed for the night 150 ccs/ 25 mls per hr.

7pm Set up his Dialysis machine for treatment. Takes about 20 mins to prep.

8pm- 9pm Get Tino settled in his crib for his 12 hr dialysis.

These are all approximate times of course. Life would be too good if it all went on schedule. We are getting the hang of it. The first week was pretty stressful get used to everything. My husband made a nice daily log sheet so we can keep track of what we need to do. I need one for my other kids for baths, homework, chores, lunches, uniforms, etc :)

Tino is worth it all. We have 11 more pounds to go for him to reach the weight he needs to be for a kidney transplant. This morning he weighed in at 11 lbs 10 oz. Way to go Tino!

Saturday, September 19, 2009

Nj seems to be helping

Tino had his nj placed yesterday. He seems to be doing better so far. He still has a gag reflex and he is spitting us some collected mucus. He seems to be keeping his formula down. We'll see if it makes a improvement in his weight gain and bowel movements.

His dialysis is going well. We did have our first power outage while on dialysis. That was fun. John had to go borrow a generator from our neighbor. Besides the hassle it went smoothly.

Tino is now 10 lbs 12 oz. He fluctuates daily by a couple ounces. He is a pretty good baby with all that he is going thru. He isn't too fussy and is easy to calm. Which I'm very thankful for.

Maybe on another day I will put our daily regiment. It keeps us busy.

Thursday, September 17, 2009

The joy of reflux!

We are somewhat getting the hang of things. Taking care of our little guy is a little more than what we anticipated. What thru us for a loop is the vomiting 15x a day. Today so far it has only been 6x. The poor guy is either dehydrated or backed up, he has only pooped once today. We go to dialysis clinic tomorrow to get checked out. He also has a appt. to get a nj to replace his ng tube. The nj goes further down to help keep his food from coming up. Hopefully it will help some. Hopefully he won't pull it out like he has his ng. The radiologist has to put the nj in.
Otherwise it is good to have him home. I even managed to go to bible study today. That is w/out the lil guy. Daddy took care of him. Dad has been doing a great job. Unfortunately he has to go back to work on Monday.
Well that is all i have time for.

Friday, September 11, 2009

Santino is home!!!

Santino is finally home. He was able to come home yesterday after much hard work from our case manager. It almost wasn't going to happen because of insurance issues. What a nightmare! The case manager was able to get everything in place so we would get all of Tino's medical supplies. We also have a nurse visiting us at home to make sure we are comfortable with everything. John and I are still trying to figure out a schedule that works best for us. The schedule he was on at the hospital was too spread out. We will get there hopefully in the next couple of days.

The first night was okay. He had a lot of spit up episodes. Which is to be expected unfortunately. He has issues the first hour of his dialysis. All the fluids in his lil tummy is just too much for him. He usually has to poop, which causes him to spit up. Last night he spit all his meds we had just given him. Other than the spit up he is doing pretty well. I think he is enjoying being home. He is giving us lots of smiles.

We definitely have our work cut out for us but it is all worth it for our lil guy. I just have to figure out how I'm going to take care of my other two also?

Wednesday, September 2, 2009

Broviac catheter for Tino

Another lil surgery for lil Tino. The renal Dr. decided to put a Broviac catheter in my lil guy before he comes home. For those of you who don't know what that is, it is a catheter that goes into his artery so blood can be drawn, meds given, etc. Instead of having to poke him with a needle whenever he needs labs drawn. It is a permanent thing for as long as he needs it. I wasn't too crazy about the idea of having another tube hanging from his body but I guess it is better for him.
He did well with the surgery. I was able to hang out with him in recovery because he was a bit cranky. I would be too. Poor guy was hungry since he was NPO since 10 am. He didn't get back to his room until 8:30pm.
When we got back to his room his meds were waiting for him. So I gave those to him on a empty stomach. The nurse started his feed right after that and he threw up all his meds.
Not that, that was enough I got to set up his dialysis and hook him up for his treatment. My poor baby I wanted to stay and comfort him. But my other kiddos were waiting for me at a friends house. My 6 yr old was sad and started crying for me.
Things will be much better when Tino comes home.
Hopefully next week if his shipment of supplies gets to our house in time. Pray for us that it does. I don't want to wait any longer. He needs to be home with us.

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!!

Friday, July 31, 2009

Trying to get back on schedule

Santino seemed better today than he has in awhile. He is off the vent. He was extubated early this morning. He is on the cannula for a little help w/ oxygen. He seems to be breathing a lot easier than he was pre-vent. He is a lot happier.

He was awake for quite a bit during my visit. It was nice to see him alert and looking around. I worry about all the sedatives they give him. He has shivers a lot and it concerns me. His nephrologist thought maybe he is having withdrawals. Something I don't want to hear about my 1 month old baby.

The nurses only have orders to give him Tylenol, so that is good!

I was able to hold him. It has been a week since I held him last and it seems like it has been forever. He seemed happy to be held. I'm glad he knows his mamma.

We ended up not having the meeting w/ the Dr.s yesterday. It has been rescheduled for Monday. So we will see what comes of the conference.

There was something new today. Tino is getting a thyroid medication. I guess he was low on a couple of things which could affect his blood pressure. So somehow it is related to his thyroid. I have to research that a little more.

He did start his feeds again. They are starting slow. He is only getting 1 cc over a hour. When I called earlier this evening he had been taking it well. But when I asked if he has thrown up any I jinxed him. Right after I asked that question he threw up. The nurse and I think he is getting rid of all the mucus he accumulated because of the vent. I hope that is why.

Otherwise he is looking better. Like my baby boy again w/ his big beautiful eyes.

Until tomorrow.

Wednesday, July 29, 2009

Surgery went well

Tino did well today with his minor surgery. He no longer has the huge hemo cath hanging from his tiny chest. One less thing hanging from his lil body is great. I'm hoping he loses the vent tomorrow. He does not like that tube stuck down his throat. Who can blame him?!

I just pray he is strong enough and ready to breathe on his own.

The kids and I had a nice time at the beach today. They had a lot of fun playing in the water and building/digging in the sand. It was nice to talk to other people rather than hospital staff regarding medical stuff. No offense Amy and Christy (Tino's primary nurses) if you are reading this. I do enjoy your company and so does Santino!

I do have to admit I was very anxious this morning about not visiting my lil boy. I knew John was going to be there with him, so that helped. Plus my kids were excited to spend the day with me. How can you go the summer w/out a day at the beach?

Tomorrow we have a meeting with all of Tino's docs. I'm hoping for some positive news and a good game plan to get him home with us. I will let you know how that goes.

Tuesday, July 28, 2009

Taking out Hemo catheter tomorrow.

Tino was doing better today. They were able to wean him back to a rate of 12 on the vent. They were thinking they would be able to extubate him later today or tomorrow am. But, the surgeon wants to remove his hemo cath. She is worried of chance of infection. So that means no G-tube anytime soon and remaining intubated for surgery.

His nurse last night tried to start feeds again but didn't work out so well. She was only giving him 6 cc's but his tummy didn't like it and threw it up. So the docs don't want to feed him until he is extubated. Who knows when my hungry boy will eat again.

He looked a little better. The nephrologist put him on a new mixture of dineal (25 cc's ea. of 4.25 & 2.25). It seems to be working, he is not as puffy. His skin looked a little bluish, but they didn't seem to be concerned. I hope having that extra fluid off helps him recover from whatever was going on w/ his lungs. I so worry about his lung development! Being w/out amniotic fluid for 10 wks inutero I'm sure was not good for him. It is a miracle he has made it this far.

Tomorrow daddy will be visiting w/ him. I have many people suggesting I take a day of relaxation. I will be taking the kids to the beach w/ some friends. I'm going to do my best to enjoy myself. I'm sure I will be worrying about him having minor surgery to remove the cath. His daddy will be their with him and his Father above watching over him. Keep him your prayers that he tolerates it well.

In His Grace,

Monday, July 27, 2009

He is back on the ventilator :(

The past few days my lil guy has had a tough time. He started having labored breathing which got him put on a nasal cannula. I didn't handle that very well. I knew he was having difficulty breathing but to have a set back like that is hard. The cannula ended up not being enough for him so he got reintubated. This happened Sunday around 1 am. I received a call from the nurse practitioner at 1:30 am. As you could imagine I had a hard time sleeping after that. He had been doing so well a couple of weeks ago and he has just gone down hill so fast. He had his digestive issues now this. It has been rough seeing him go through this all. He is doing better now that he had help from Mr. Ventilator. The doctors aren't sure what caused his breathing to become so labored. They have done all kinds of tests on him and nothing negative has shown up. I pray that his lungs are okay and aren't giving out on him.

When I was visiting with Tino today he had another little episode where he stopped breathing. The nurse had given him some morphine to relax him a little so the Occupation Therapist could work with him. Well a little while later the OT is working on his arm and I notice his face turning purple. I quickly tell the nurse and she turned his vent up and fortunately he started breathing again. That is just a bit scary when he does that when he is on a vent. So now I'm nervous to have him extubated. I cry when he is intubated now I'm a nervous wreck having him extubated. Just can't win.

The nephrologist is talking about putting a Gtube in Tino soon. This will require surgery on his abdomen so that means they will have to stop PD for a bit to let the site heal. Which then requires him to be on hemo again. He is not going to like that. I'm not sure how soon he will be having the surgery. Having surgery means they will have to stop feeding him again and have to reintubate him. My poor lil man.

That is all that my brain can remember for today. Hopefully I will have some good pictures of him soon. I didn't want to take any today with the vent tube and his swollen face. We have enough of those.

Good night!

Tuesday, July 21, 2009

Having digestive issues

Today started out a little crummy for me but it got better once I saw my lil Tino. I was just having a very emotional morning. It is funny that I felt this way today because just yesterday I wrote a comment on another blog how relaxed/anxiety free I have felt in a long time. Well that all flew out the window sometime last night.
Some are probably wondering how I can feel relaxed when my baby is in the hospital. I just don't feel stressed by little things that used to make me so tense. All that matters to me now is my family and their well being. I know my baby is being watched over by our Creator.
Back to why I was so emotional this morning. Santino was doing really well for a week or so and just last Friday he had a couple of set backs. I think it just hit me that there will probably be many setbacks and who knows when he will be able to come home w/ me. It is hard understanding everything that happens w/ him and the severity of it. The Dr.s and nurses deal w/ this all the time so when something happens it is no big deal to them but as a mother everything is a big deal to me. What caused this anxiety in me was that they stopped feeding Tino last night because he had spit up and his spit up was a greenish tinge. He spit up last night also and it was brown. So what the nurse told me was that the coloring means he hasn't been digesting his food all the way and it has been sitting in his tummy. So they stopped his feeds to let what he does have left have time to digest. They also started him on some meds to help get his system going and to help reduce the acid in his stomach. Hopefully tomorrow morning they will begin feeding him again.
When I was w/ Tino today he was a little crabby from being hungry but he settled down pretty easily. I got to hold him the whole time I was there so that was good. He seemed to enjoy it. I wish I was able to stay w/ him all night to comfort him. When I called and checked on him this evening he was snoozing. That always makes me feel better and less guilty. I hate when I call and can hear him crying in the background, that just breaks my heart.
Seeing him and holding him eased my anxiety. Looking at his lil face he looks like a healthy baby boy. I'm so blessed to be able to hold him, kiss him, talk to him, and look at him. I have to remind myself and be reminded sometimes (Lisa) how blessed we are to have him here with us and the fact that I get to do all those things. I do get scared that he can be taken away but I have to cherish each day I have with him.
That goes for my other two also.

Saturday, July 18, 2009

Avoided another surgery

Santino had been doing really well the last couple of weeks. The docs had been increasing his PD dwells and his feed intake. He seemed to be handling it well. Yesterday his primary nurse thought he looked a little pale and thought he should be looked at. They did a xray on him and saw that he had a bunch of air outside of his abdomen and around his bowels. This concerned the Dr. and she thought he might have a possible tear in his bowel. In order to correct that they would have to do surgery on him that afternoon. Of course I was upset thinking of my baby having to be cut open again on his little tummy. Well my tears didn't last very long. The surgeon took a look at the xray and Tino and thought he looked fine. He wasn't too concerned w/ it and thought it was just air coming from his PD catheter. To make sure they continued w/ xrays every 4 hrs to check for any changes. The xrays only showed improvement. So he is clear from having surgery. Unfortunately Tino was not allowed to eat this whole time until early this evening. He handled it like a trooper. He was a little fussy but not totally inconsolable. The nurse fed him tonight by bottle (6 cc's) and he guzzled it down. I was very happy to hear that. It just hurts seeing him so hungry and not being able to feed him. I will be able to sleep a little easier tonight knowing he has some of mommies milk in his tummy. I hope he sleeps a little easier as well.

Thursday, July 16, 2009

Missed my baby today

I miss my lil peanut everyday but today was the first day I haven't gone to see him. I mentally prepared myself for today a few days ago. I needed a full day to run errands and do some housecleaning. I did a lot better than I thought I would. I only cried a little this morning when I called to check on Tino. He had a very kind and understanding nurse so she helped put me at ease. I only called every 3 hours, not too obnoxious. He had a very good day. He slept, ate, and pooped like any normal baby. Which is great!
The simple things we can take for granted. Those simple things are extraordinary to me now. Each little progression Tino makes is just so amazing. The fact that he is here w/ us is amazing! I still am in awe of him and of our Savior who obviously had a major part in our son's existence. My son has a purpose to be here w/ us and who knows if we will see the outcome or understand it. I think he has already touched so many people in different ways even if they have not realized it yet. I hope they do. When I was pregnant I prayed to God everyday that he allow Santino to remain w/ us and be used for His greater good. I don't know if he will be a "Samuel" but whatever God has planned for us. I pray for strength, patience, understanding, and the willingness to make whatever sacrifices of myself that need to be made. I know we have a long road ahead of us and each day I have w/ my baby will be great. I hope Santino thinks it's great also. Who knows what I'm saying makes any sense. Some of the thoughts that go thru my mind? I hope I don't sound too out there! I think it is time for bed.
A little night cap:)
" Therefore by Him let us continually offer the sacrifice of praise to God, that is, the fruit of our lips, giving thanks to His name. But do not forget to do good and to share, for with such sacrifices God is well pleased." Hebrews 13:15,16

Wednesday, July 15, 2009

Santino tries nursing!

My lil guy and I had a nice visit today. He was awake and alert when I arrived. He was just looking around w/ his big eyes. I was excited to hold him because usually he is sleeping when I'm there. When the nurse handed him over to me he started rooting around for my breast (sorry men if this grosses you out). So the nurse suggested I try a dry feed w/ him (I had just pumped so no milk would come out and choke him). He latched on fairly quickly and was very content for about 15 mins until he fell asleep. It was such a great feeling to have him want to nurse and be so comfortable in my arms. I could have stayed there all day like that. He was so cozy in my arms. John was sad that he missed that experience.

Unfortunately my time was up. I only had 2 1/2 hours w/ him today. The time goes by sooo fast. ( I can't believe in 2 days Santino will already be 4 weeks old (38 wks gestastion)) I had to get home to relieve John of his duties so he could go to sleep for work tonight. This is just the second day and it is okay so far. It will get to us soon though. We are like a tag team. He comes home from work and I walk out the door for the hospital. I get home and he heads to bed. Tomorrow I will be staying home to spend more time w/ the kids and run some errands. It will be very hard. Last time I tried staying home Santino decided to stop breathing and scare the heck out of us. Santino better behave himself tomorrow. I did get a little teary leaving today but the nurse was very nice and encouraged me to take tomorrow off and try to relax a little. I'm sure I will keep myself busy so I don't have to be thinking about Santino constantly. Yeah right, who am I kidding! Wish me luck.

Some updates on his meds. His PD fluid was increased to 40 cc's and his milk feed was increased to 43 cc's. He is handling the formula well that is added to my breast milk. We'll see how he does w/ all that fluid in his abdomen/stomach at once. When I was there he did vomit a little. I did just get done changing a huge poopy diaper so all that jostling around made him sick. My poor baby. I think he felt better after his movement and throwing up. He was calm looking around and listing to his music. When he is calm like that John and I just want to cuddle up next to him. Hopefully soon enough!

Monday, July 13, 2009

John is back to work

My husband went back to work tonight. He has been off since Santino was born. We have been very spoiled having him home these past 3 1/2 weeks. I'm sure it is going to be hard on John. I couldn't imagine having to work right now w/ all that is on our minds. Tino has been doing very well the past few days so it does make it a little easier. We just pray he keeps moving forward.

The VCUG that Tino had on Friday went fairly well. Tino got a little upset being held down and having water poured over him (to make him pee). Overall he tolerated the test pretty good. The test concluded that his ureters are dilated, he has reflux of both kidneys, and he has post urethral valves. We all pretty much knew this already but they had to confirm it w/ the vcug.

We spoke w/ the urologist also and at some point he will be doing a vesicostomy on Tino. This requires putting a little hole below Tino's belly button so his bladder can drain out into his diaper. It doesn't sound pretty but that is what needs to be done.

Tino's PD is going well. His feeds are good. He is up to 30 cc's of breast milk. I believe tomorrow they will fortify the milk w/ formula to give him some extra calories. The nurses are trying to bottle feed him when he is awake. He still hasn't gotten the hang of it yet. The occupational therapist says that is normal for babies this young/premature. She was happy that he sucks so well on a paci. We'll keep working on the bottle feeds. That is really about it. He did get moved into a big boy crib. He has more room to stretch out now and have some toys to look at. I pray he continues to have good days like these. I feel so blessed to have him here with us and to be able to hold him and smell his sweet scent. Each day is so precious.

Thursday, July 9, 2009

Santino is breathing on his own!

We haven't had too much excitement the last couple of days. Which is a good thing! Monday's scare was enough to last awhile. Good news though , Santino is off the nasal cannula and is breathing well on his own. He only has the ng tube in his lil nose (that is how they feed him). He also has a IV in his scalp but no breathing tubes, yeah! We can see more of his cute face now and are able to kiss his cute lil lips.

Tomorrow he is scheduled for a VCUG by urology. With this test they put a dye in thru his urinary catheter and is shot up to his bladder/kidneys. Images will then be taken to see where the dye travels to. I know w/ Anthony this test was done to see if he had reflux from his bladder to his kidneys. Anthony did not like these tests (he had 2 as a baby). I hope lil Tino is cooperative and doesn't get himself all worked up.

That's all that is happening so far. His PD is going well. There is no leakage at the site. The draining of fluid is going as planned. He seems to be tolerating this form of dialysis much better than Hemo. I like to see my baby content. He has been sleeping very well the last couple of days. He slept thru our visit today. I'm hoping tomorrow we get to see him awake for a bit.

We shall see.

The picture above was from yesterday. So cute sucking on his pacifier!

Tuesday, July 7, 2009

Santino gives us a scare!!!

On Sunday's post when I said "we will see what he has in store for us tomorrow" I was hoping for something positive. Santino decided on the opposite. John arrived yesterday morning at the hospital when Tino decided to stop breathing. John was met by a Dr. explaining to John that the baby had stopped breathing and they were intubating him again to get him to breath. John called me right after talking to the Dr. so I could go to the hospital. Before we hung up he was updated that the baby was breathing and they had a pulse. I was very happy to hear that but was a complete mess. We are fortunate to have very caring and giving people at church who have offered to watch our kids. So I called the Majam family and they came over right away to watch the kids for me. Thank You Pat & Allison !!!

Back to Santino. What happened was, he was on dialysis and was getting agitated as usual so they gave him some Adevant to calm him. Well the med calmed him a little too much and he stopped breathing. They quickly got him back on oxygen and stopped the dialysis. He regained his color fairly quickly and wasn't in any kind of distress. When I got there he was sleeping very peacefully and I couldn't tell anything had happened. I spent most of the day w/ him and he was very tired out. Around 6pm they decided to extubate him and put him on a nasal cannula again. He was still on the cannula today and was doing well.

The nephrologist decided the hemodialysis is getting to be too much for him to handle so she decided to try peritoneal dialysis again. This afternoon they began PD again and it seemed to go well. His catheter site wasn't leaking and he seemed to be draining well also. I was very happy to hear this. When I was with Tino on Sunday he looked so pale and thin from the dialysis I was worried something like yesterday's incident was bound to happen. I'm glad he is okay now. The Dr.s will definitely be keeping a closer eye on him.

Today is Santino's big brother Anthony's 6th birthday. We had a small get together w/ some of Anthony's friends. He had a good time playing in his pirate pool, playing board games, pinata, and having a root beer float. Parties are tiring , I'm wiped out!!

Sunday, July 5, 2009

Santino breathing on his own!

My lil boy and I had a nice visit today. John and the kids stayed home so I could spend more time with the baby boy. But John gets to visit on his own tomorrow :(.
I arrived at the hospital shortly after Tino finished w/ dialysis, so he was zonked out! After about a hour of just staring at him the nurse let me hold him. We cuddled for almost 2 hours. It was nice to have him in my arms again and just stare at his cute little face. He gave a little smile while he was sleeping . He didn't want to wake up for his momma. I don't blame him, after having 800 cc's pulled from him between today and yesterday. He can sleep all he wants.

After he was put back into his bed the nurse decided to try and take him off the nasal cannula. The thing kept popping out of his nose anyhow. While I was still there he seemed to be breathing fine on his own. That will be good if he is free from that from his face. He does not like tubes on his face! I hope when I call and check on him he is still breathing unassisted. We'll have to praise God for that!!

That was the excitement for today. We'll see what he has in store for John tomorrow.
Good night!

Friday, July 3, 2009

Daddy's turn to hold Santino!

Our lil guy had a break from dialysis today. So John was able to hold him when we arrived at the hospital this morning. Tino was very content in his daddy's arms. It was very sweet to watch. Daddy even got a little sleepy with his baby boy. I was a little jealous but I was able to kiss him more :). John was very happy to finally hold him. They spent a good hour together.

While we were there the Dr. decided to take Tino off the ventilator. We weren't able to watch, thank goodness because I would have been a nervous wreck. It went well. They do have him on another form of oxygen (Cpap) but it just goes in thru his nose a little vs. the annoying tube down his throat. ( He looks like a baby elephant w/ the tube. ) It took a while to settle him down after that. We finally heard a small cry from him. It is a hoarse cry from having the tube in for so long. John and I took turns comforting him. When we left around 2:30 he was asleep. At 6pm when we called and checked on him he was still sleeping. I was glad to hear that because we wanted to stay and comfort him but had to get home to the other munchkins.

The feedings that they did yesterday didn't go well. He ended up spitting them both up. The nurse said he has a lot of air in his tummy so it might of made it upset.
Tomorrow will be another day of dialysis. He was swelling up again from not having the treatment today. We shall see how he does tomorrow.

Thursday, July 2, 2009

Daddy changes diaper

Today was a okay day. Tino had another round of dialysis and it wiped him out. I guess he was pretty agitated during the treatment and worked himself into exhaustion. When we got to the hospital he was sleeping peacefully and we didn't want to disturb him. So John wasn't able to hold him today :( . We are hoping he will be able to tomorrow morning. John was able to change the lil guy's poopy diaper. As you see in the picture.

The docs are thinking of skipping dialysis for tomorrow, depending on how he does tonight. He will have a little time to rest. The neonatologist is considering extubating him off the ventilator tomorrow. I'm a little nervous but will be excited if Tino is able to handle breathing on his own. The nurse has said during dialysis he gets himself so worked up that he does need that extra help w/ oxygen. So we shall see what happens.

They took him off of the milrinone because his heart rate was high and blood pressure low now. His arterial line from his belly button was taken out and a new one put in his right hand. He had both his hands wrapped up so I wasn't able to hold his little fingers. I did kiss his cute little toes. Oh, I got to feed him thru his gastric tube some of my breast milk. They only gave him 3 cc's to see how he handles it. That was about it for today. Hopefully we will have a picture of John holding lil Santino w/ the next post.

Wednesday, July 1, 2009

I got to hold my baby!!!!

Today was much better than yesterday. Santino looked like a cute lil pink baby. Yesterday his coloring was still pretty pale from the night before. Besides Tino doing well his wonderful nurse decided it was time I got to hold him. We were having a conversation and it came up that I still had not held him. So she went and spoke w/ the doc and they decided I needed to hold my boy. I was a little nervous w/ all his tubes/lines and ventilator. I guess this is their job and the nurses are used to maneuvering around all that stuff. I was able to hold him for about 1 1/2 hrs. He slept very peacefully in my arms. It was nice to see him so calm and not agitated. Tomorrow will be daddy's turn as long as Tino is stable. I know John is really looking forward to holding his boy.

Tino did have another round of dialysis today. I'm not sure how much fluid was pulled off but he is just below his birth weight. So that is good. He still has a little bit of edema and his blood pressure is still a little high. So they will do another round tomorrow. If he is doing well with that the docs may go every other day. They may start a small feed thru a gastric tube tomorrow.
As far as the infection, the docs are still not positive. The cultures should be done by tomorrow to get a better answer. My husband is going to have to take over now to explain what it is they think was causing his yucky night. John's EMT class paid off for us!!
The nurse and the neonatologist explained that some of the baby's problems over the last couple of days may have been due to poor perfusion (exchange of oxygen and carbon dioxide and other elements at the cellular level), rather than some sort of infection. They started Sonny (Tino) on a medication called milrinone yesterday. Milrinone is a vasodilator, which basically means that it causes the blood vessels to relax and dialate, allowing more blood into the vessels, thereby improving the perfusion of the cells. The vasodilatory effect of the milrinone also helped in lowering Tino's blood pressure, which was mostly at acceptable levels today.
I'm still not sure I totally understand it all. I'm glad John does!

Tuesday, June 30, 2009

Rough day for Santino

I had a bad feeling when I got up this morning but was trying to stay positive. Mom's intuition was right.
John and I arrived at the hospital around 11:30 today and they had just begun Santino's hemodialysis. The dialysis was fine. The nurse though had to give him a blood transfusion and antibiotics because she said he was very pale when she arrived this morning and obviously not feeling well. They had to increase his oxygen as well because his breathing was really labored. The docs/nurse believe he is fighting some type of infection. They haven't been able to pin point it yet but they gave him a bunch of antibiotics to fight whatever it is. It is so hard seeing my baby so uncomfortable, especially after seeing his beautiful eyes yesterday. I wish I was able to lay next to him and comfort him. He is still very sensitive to touch and noise. I forget that he is a preemie since he was born at such a good size. I pray the antibiotics work and he fights whatever it is.

The dialysis went well. They were able to pull another 290 cc's of fluid. He looks like a regular baby now. He actually looked thin to us because we were getting used to seeing him so swollen. I hope tomorrow is a better day for him. I know we will have our ups and downs but it still is hard. As a mother we just want to comfort our little ones and it is so hard when we can't. All I can do at this point is pray and pray some more.

Monday, June 29, 2009

Eyes are open!!!

Today was a exciting day! We finally got to see our baby boy with his bright eyes open. He was very active today w/ a lot of squirming and moving of his arms. The nurse suggested I buy him some mittens to keep him from pulling on his tubes. He is not a happy boy with those tubes on his face. Who can blame him? Yes, he is still on the ventilator. The docs are waiting for better numbers from his blood gases and a couple of other things. Maybe soon.

He had another round of dialysis today. It went well. They were able to pull off another 400 cc's from him. That is a total of 900 cc's in the last 3 days. That is a lot of fluid!!!! He will have another treatment tomorrow.

The kids went w/ us today. They behaved themselves, thankfully. John and I were both pretty tired. We have friends that have offered to watch them the next couple of days, so that will be nice. I'm going to wrap this up now so I can finally go to bed at a decent hour. Goodnight!!

Sunday, June 28, 2009

Hemodialysis is working!!

Today was the second day of Hemo for Tino. He looked so much better. Between today and yesterday they were able to pull out 500 cc's of fluid from his lil body. He is back to his birth weight. He still has quite a bit of edema (swelling) but nothing like 2 days ago. We were hoping to finally see his lil eyes open. He was trying but was only able to see a little sliver of his eye. The docs are hoping to take him off the ventilator tomorrow. It depends on his blood gases between tonight and tomorrow. I'm a little nervous but it will be nice to see his face free from that big tube. The poor guy kept gagging on it today. I'm sure he will be very happy to have his mouth/throat free. If that all goes well they are also talking about starting him on some feeding. Tomorrow may be a big day for him.

We have our other two back w/ us today. They spent the wknd at their Poppy's house. They had fun renting movies, swimming, and eating ice cream. It seems like they are handling everything pretty well. They spent a little bit of time w/ their baby brother today. They are both very sweet with Tino. Anthony is even sharing his favorite blankie w/ him.

We should have some good news to share tomorrow. Keep us in your prayers.

Saturday, June 27, 2009

Another surgery for lil Santino

Yesterday was a rough day for our lil guy. We thought we were making some progress w/ getting his chest tube out . Then on our way to visit we got a call from the NP that his PD catheter was leaking again. So they stopped his PD dialysis and were going to put in a catheter to begin Hemodialyis. I was freaking out a little worrying about my baby having surgery involving veins/arteries. The procedure took about 45 mins and it went well. They ended up putting an adult size catheter, so it looks pretty huge sticking out of his abdomen. We were planning on visiting w/ him for a little while, when his new catheter began bleeding a lot!! John says it wasn't that much but it scared the heck out of me. The nephrologist ended up being called in at midnight and she decided to give him a blood clotting med. to stop the bleeding. So finally around 1 am it seemed to be working. The nurse strongly encouraged us to go home at this point to get some rest.

Tino began the hemodialysis this morning and it went well. The treatment itself was about 3 hours. He looked a lot better. He wasn't as puffy and swollen. He was also a lot more active. He actually pulled out a tube from his mouth and was pulling at his oxygen tube. The lil stinker. We got to see a few lil yawns from him and couple of sad/crying faces. We don't hear a cry from him because of the oxygen tube in his throat but we can tell from his lil red face. We are hoping by tomorrow we will finally see him with his eyes open. They have been swollen shut this whole time. We are praying for another good day tomorrow.

Wednesday, June 24, 2009

Visit Santino w/ kids

We went and saw our lil tough guy for a little while today. It was difficult visiting him w/ the kids. They wanted to see him but only lasted a few minutes in the NICU. They like holding his little hand when they see him and get excited if he squeezes back. It is wonderful seeing my kids together.
Ysa was very interested in all the machines that Tino is hooked up to. She was staring intently at everything and listening to what the nurse had to say. She may be my future Doctor. She is very sweet and said she wants Tino to be able to come home without having to bring the medicine with him. So do I.
Tino was a little more puffy today. His abdomen was very swollen from the fluid sitting in him. It looks so uncomfortable it just breaks my heart seeing him like that. He was off pain meds today so I was able to see more movement from him. He moved his little hands around and the nurse said he was grabbing on to the lines. I hope we see more progress tomorrow when we visit. Any little improvement will be wonderful. Tomorrow is John's bday so it would be a nice gift to him to see his lil guy have a little milestone.

Home w/out my baby

I came home last night from the hospital after 4 nights. It felt strange waiting out front for John to pick me up w/out holding my lil Santino. We handled it better than we thought we would. We know he is in great hands w/ a wonderful and caring team of nurses and doctors. I was happy to get home and see my other two babies who I have missed. I'm not sure they missed me so much getting spoiled by grandma.

Lil Santino is hanging in there. He had surgery on Monday night to put in his catheter to begin Peritoneal Dialysis (PD). That was a rough night thinking of my lil boy getting cut open and having yet another tube stuck into his body. He did very well with the surgery and they began dialysis that evening. He is getting treatments of 20 cc's ? every 30 mins. The fluid output is not as high as they would like to see it so they are increasing his dextrose (sugar) to pull out more fluid hopefully. The nurse also said they may increase the dwelling time to 1 hour vs. 30 min. The surgeon had to see him this morning to change his bandages because there was a little bit of leakage from the catheter incision. It seems to be okay now. There are so many little things to worry about and keep us on our toes. I know it is going to be a long road ahead of us and this is barely the beginning.

I know our Lord will give us strength when we need it but there will be tough times. There is joy knowing Santino is strong and fighting but there is also times of feeling guilt what we are putting him through. The first couple of days in the hospital we weren't so sure what would happen. We didn't know if his lungs were developed enough, if his kidneys would produce urine, if his heart was strong enough and if he would have the physical strength but he has pulled through. I prayed and prayed that we were making the right choice for him and not a selfish choice for our own comfort. They only thing we can do is leave it in Gods precious hands and hope for the best. Our savior is the ultimate healer and I believe He will bless our beloved Santino.

We are getting ready to go visit Santino now and smother him with more kisses. I can't wait for the day I can finally hold him in my arms. I will keep you posted with his progress.

Santino's mommy


Saturday, June 20, 2009

Santino's here!

Here's a quick update, on behalf of my wife:

Santino apparently got tired of being cramped in Mom's belly with no amniotic fluid, and decided that today was the day he would grace us with his presence. I'll give you the quick facts and let Yvette fill in the details once she is able to. Santino was born at 1:35 pm yesterday (6/19/09), via an emergency C-Section and weighed 6 lbs/2 ounces. As we expected would happen, they had to intubate the baby immediately and put him on a ventilator. Despite the fact that he's on a ventilator, the doctors are encouraged by the level of lung function they have seen so far. There was some trouble getting a catheter inserted at first, but the urologist was finally able to get it in and drain the fluid from Santino's bladder. In a couple of days we should know if his kidneys are going to be able to regain any of their function now that the pressure in his bladder has been relieved. Other than the various tubes and lines sticking out of him, he actually looks pretty good now. Our other 2 kids were able to visit Santino in the Neonatal Intensive Care Unit, and Yvette was able to spend a little bit of time with the baby after she was released from the recovery unit. I've posted a few of our first pics and we will add updates as Santino's case progresses.

Wednesday, June 17, 2009

Santino's 20 wk ultrasound

Well today was another Dr. visit. I had to go back in for a second shot of steroids to help mature the babies lungs. Usually women who are going into preterm labor are given this but I guess they felt it wouldn't hurt lil Santino to have it as well. I can't stand shots but whatever will help out the lil guy. I'm 34 wks today and counting. I can't believe I only have 5 wks to go. That is if Santino decides to stay in that long. I hope I can make it. I slept horribly last night. I can no longer sleep on my side. I have to sleep propped up with a bunch of pillows. I have been getting unpleasant cramps/contractions if I lay on my side. I don't know if lil guy is hitting a nerve or what. It just sucks! I hate to complain though thinking of him all cramped in my uterus with no room to move. I said I wanted to share our story of Santino so I'm going to do my best to start from the beginning. I have a tendency to ramble so forgive me.
I had my 20 wk u/s on March 9th. John wasn't able to go with me because he got tied up with work. I was excited to see our growing baby but I was also a little nervous that the tech would find something wrong with him also. When I went in I let her know about Anthony's condition and to make sure this lil one was clear of that. I had a little bit of fear of recurrence but thought really what are the odds of it happening again. LUTO/PUV is like a 1:500 chance, like it would happen again! I had more fear of having a autistic or down syndrome child. So I left the u/s feeling okay. I had a couple of cute pictures of lil one. We didn't want to find out the sex so that wasn't known at the time. One of the pictures I had kind of bothered me because I could see the babies bladder and it looked a little large to me. I wasn't sure If I was just freaking myself out or there was something to be worried about. I found out soon. The next day when I went to pick up Anthony at school I rec'vd a call from the Dr's office. The NP said I have the results of your u/s. When do they call with results, unless it is not good?! She says well it looks like the baby has hydronephrosis(enlarged bladder), a enlarged kidney, and olygohydramnios (low amniotic fluid). So what your telling me is he has the same thing as what my son Anthony had? She says well sort of but potentially a lot worse. Great!!! So she says I will be seeing a perinatologist (maternal-fetal medicine Dr.) for a more thorough exam. End of conversation. I get Anthony quickly before I break down crying at my kids school. We walk to my friends apt since I had just dropped my car off to get a oil change. I remember just being in a daze and just thinking Why? why is this happening to us again? Anthony and I show up at my friend Martha's and I just have to finally let my tears out. I'm still not sure what everything I was just told means and I'm thinking how am I going to tell my husband. I know it is going to crush him. We had barely gotten over our miscarriage the year prior. Martha was very sweet trying to help me remain optimistic. She still is and reminds me how great our God is. I waited for John to get home before I told him and we both cried together and asked Why? We called the perinatologist and weren't able to get an appt until the following week. How could they torture us for that long? They didn't seem to think there was any urgency while we are dying inside. While we were waiting that long week we searched the internet like crazy. Of course everything out there on LUTO/PUV is scary and has a fatal diagnosis. John was also able to find some helpful info on inutero surgery. Going on the internet is a very dangerous thing for the emotions. I cried a lot that week and prayed! I'll have to continue another day with our visit to the perinatologist. That was a experience. I have orders from my hubby to put my feet up, watch a movie and eat some ice cream. I have a great husband!

Tuesday, June 16, 2009

My other PUV boy

Today I go in for another NST (Non stress test). I have been doing these tests since 28 wks. I haven't tired of them yet because it is so good to hear lil Santino's heartbeats. There is always that fear that something may happen to him inutero but when I hear his strong heartbeat it is reassuring. The doc always asks if I'm measuring kick counts and I say constantly. Santino seems to know also when I worry because he will give me a strong kick or a big stretch.
Anthony will be joining me today to the Dr. while big sis is with a friend. I did have to promise him McD's for lunch. I think he will enjoy hearing his lil brothers heart beating. He is very excited to meet his lil bro but also knows that he is very sick. Anthony is always praying for him and almost brings me to tears sometimes when we are at the dinner table praying. He is a very sweet boy. Anthony has a understanding of what his lil bro is going through. Anthony also had PUV as a baby but was not diagnosed until he was 2 wks old. He was in the PICU for 8 days following surgery to ablate the valve. It was very scary at the time but nothing like what we are experiencing now. Anthony was able to recover very well from his condition and it was believed it didn't happen until later in my pregnancy. He does only have function of his right kidney and has to take medication 3x a day. He is a trooper taking his meds but now the request is to have it with chocolate milk which I don't blame him because it does taste horrible. He also has to have check ups every 6 mos with his Nephrologist and Urologist. Which require a blood test and ultrasound. He still isn't keen with the blood test but he thinks the ultrasound is funny. The big question is why did this happen again to one our baby boy's? We don't know and so far the Dr.s we have met don't have a answer for us either. They haven't ever seen a recurrence in families like this before. Well I can go on and on but I have to get to my appt. I'll continue on this later.

Sunday, June 14, 2009

Journey with our little Santino

Well I'm in my 33 wk of pregnancy now and a lot has happened since we first found out we were expecting. I will back track as much as possible for those that are interested in any info on these cases of PUV. A quick update on what is happening w/ our lil Santino. We are expecting a little boy who has been diagnosed with LUTO/PUV. This condition causes a blockage so the baby is not able to urinate causing a lack of amniotic fluid. I have not had any amniotic fluid since 24 wks. Without any amniotic fluid the babies lungs may not develop properly. The other big health issue will be renal failure. From this point on it is just a waiting game until he is born and what the doctors can do to help him. He is growing well which is reassuring. My last appt. ( wk and 1/2 ago )with the perinatologist, Santino measured in the 97th percentile and weighs approx. 6lbs 3 oz. He will be a big boy if we make it to 39 wks. The Dr. also saw chest/lung movement. We are not sure what all this will really mean ultimately. I have been getting some really uncomfortable contractions since Mon. night. They haven't been consistent though, which is good. I am nervous about the delivery but anxious/excited to meet my precious baby boy. I am doing my best to remain optimistic but also realize there is the great possibility he will not remain long with us. We continue to pray for his lung and kidney development.