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.

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!!

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.

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.

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

P.S. Santino wants to say HAPPY BIRTHDAY TO HIS AUNT LISA!! HAPPY BIRTHDAY!!!

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.

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!

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.

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.