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

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!