Gonzalez's Heart

Thank you Steph T. for updating for us. We have been SO tired and it has been hard to even turn the computer on.

We just got back a little while ago from our appointment. We were there for about 2 1/2 hours. Dad and Mattie watched Ashley and Ethan and then after the appointment we went back and had dinner with them. The kids will be staying overnight with them tonight and then Kelly will pick them up in the morning and is coming to visit for the weekend. That will be nice.

The appointment went well but the "mystery" is UNSOLVED. Jaden had an echo done and then we met with Dr. Bass. We was very thorough and very pensive. He said the echo looked pretty good. He did not like it completely because he likes things "perfect" he said. Jaden's heart was not functioning as perfectly as he would hope and expect it to after the surgery. However, it was not bad and nothing to be alarmed or overly worried about. He was very concerned though with the symptoms that Jaden is having and the fact that it is 2 1/2 weeks since his surgery and he is just as miserable since the day he had it. He had suggested that we check Jaden into the hospital today. With much hesitation, I asked why. He said, "I think we will need to have the Neurologists check him out and start looking at areas that are less obvious to us." He said not much of anything will happen over the holiday weekend with tests. So I asked him if we could just come back Tuesday. He said that would be fine because he did not believe Jaden to be in any danger that would truly need him to stay in the hospital at this time.

He mentioned that Chip was in the hospital and that he was going to maybe make his way up to see us. I asked Dr. Bass if he could call Chip and tell him we wanted him to come talk to us. So he called Chip and Chip came up with in 10 minutes. Chip did his own evaluation and then the 2 Dr's, Sal, Jaden and I talked for about 15 minutes. It was nice because we were getting 2 Cardiologists for the price of 1 ;-) So together we all came up with it would be safe to take Jaden home and then to come back at 9am Tuesday morning and admit him. We have an appointment to admit him then for Tuesday. Dr. Bass will be talking with the Neurologist Tuesday morning and they will determine our next step. We will for sure be getting an MRI and/or a CT Scan done. We will definitely be doing many things to ensure something simple was not overlooked.

When we were about to leave Dr. Bass said, "you definitely have a lot of people scratchy their heads now." It is so weird how Jaden is having some major complication going on in his body, yet no one can figure it out. All of his tests come out good, yet he is MISERABLE!

This will be very hard on all of us since we thought we would not be back in the hospital for along time. The kids will have a really hard time knowing that Jaden and I will be leaving again. Hopefully this will be a very short stay and someone will have had God hit them over the head with the solution. God is definitely challenging us all here and is making us work to our maximum capacity. Jaden could have a very simple problem, a very major problem or it could just be growing pains and all of the sudden he is fine. Only God knows at this point. I am sure anxious though for the moment when God decides to share it with someone else.

Thank you for the continued prayers. Love to you all and hope you all have a great holiday weekend as we bring in the new year.

Gonzalez's Heart

Hey there! Steph T here posting an update for our little superstar. =) (Steph G told me I could).

Yesterday I called Steph to see how she has been feeling. A little bird told me that they had a bug. Not to mention that 3 doctors appointments in 1 week has them run a little ragged, they are also quite sleep deprived. I offered to bring her a meal, coffee, or run to Target for her. Surprisingly, she opted for some Chicken Noodle Soup (and later sent Sal for the coffee, of course). I took the soup over last night and was tickled pink to get a chance to chat with my friends plus get a look at Jaden.

Their Wednesday appointment with the doctor was a little more helpful than the others had been. Through the appointment Jaden was in a good mood, smiling, etc, but when they laid him down to get him dressed, he started crying. The doctor then realized that this is what Steph & Sal had been talking about. She agreed with them that "this is no bug." She looked him over again, trying to see if there was anything obvious. They decided that Jaden needs to go in to see Chip and got an appointment scheduled for next week. Since he has woken up from surgery, Jaden insists on laying only on his side to sleep. So he sleeps with his head elevated and on his side, with his knees drawn up to his chest. He does not tolerate being on his back at all.

Yesterday (Thursday), the home care nurse came by to check on Jaden. She was not at all pleased with how he looked. (Don't we love her for sticking up for Steph?!) She insisted that he needed to see the cardiologist now, not next week. So began the phone calls to work something out. Of course, Chip is not available today (he is working down in the cities), so he actually referred them to a different cardiologist. He said they would have all of Jaden's records sent over, and that Chip himself would put his work aside and come over if needed during the meeting (how is that for a change?). That appointment is this afternoon. Please pray that God would give the doctors wisdom as they look at Jaden, and possibly be able to solve the mystery that is going on.

Now for how Jaden looked to me. :) When I got there, he was sleeping. Eventually he woke up (yeah, I stayed a while). The first thing I asked was if he had a fever. Steph said, "No, he's just actually pink!" That was so wonderful to see--pink cheeks on our superstar. He was fussing pretty hard, but once Steph made a bottle and took him in her arms he snuggled right into her and calmed down. Wow, does he love his mama! He dozed in her arms and when he woke up again, he seemed more content, but it wasn't the Jaden that I'm used to seeing! With every breath he took, he seemed to have a little grunt as well, as if in pain but tolerating it. He also had his knees curled up almost the whole time he was awake--totally not the "bouncing baby boy" that wears your arms out. He did smile and play for a few minutes, and then it was off to bed again. I am a stranger to him, and he kept eyeing me down to make sure I wouldn't poke him and I did get a smile from him as Sal said goodnight and carried him off to bed--yay! I sure can't wait until he's feeling better!

Finally, another rave for Fifth Gear and Sal and his dad! Our car has needed the catalytic converter replaced for some time (due to a hole in the pipe). Their speedy service had my car done in only one day. It is so much quieter now and no more stinky exhaust in the car! Yay! :)

Hope everyone has a great day!

Gonzalez's Heart

We wanted to wish you all a very MERRY CHRISTMAS!!! We are all doing well and were very glad to get to be home during this time of year.

Jaden is doing so so. He is not sleeping well and has been still having some sort of pains. We think it is something abdominally. He has not been eating well and has not had enough wet/soiled diapers. We took him to his Dr. appointment Friday and they did not like how he was doing so they made us come back Saturday. They were a little more pleased with how he was doing. They want us to come back Wednesday for another check up. Hopefully he starts doing better. They did say if he would not improve that we may have to go back to the hospital.

We will not be going down that road. So we need a lot of prayers to get him to a more stable place.

Thank you again for all of your support and prayers. We will continue to keep you posted with how he is doing.

Love to you all, Steph

Gonzalez's Heart

A really quick note to let you all know we are at home. We have spent all afternoon settling in trying to unpack and work on laundry. Jaden has not been feeling well at all and is still in a lot of pain. We have obviously not kept up with the pain meds like the hospital.

We will let you know tomorrow how the rest of our night goes. Ethan is turning 5 tomorrow and has a Christmas pre-school program and then we are having a little b-day praty for him afterwards. Hopefully Jaden will not be having too much pain.

Talk to you all tomorrow.

Gonzalez's Heart

So far so good. Jaden has not had another fever yet and they did pull his last RA wire. So if he does not get another fever or if nothing else happens from now until tomorrow morning, we will get to go home. Sal is coming tonight and Lana is staying at home with the kids. Hopefully all goes as planned and we will be rolling home in the afternoon tomorrow.

If we leave tomorrow, I will not be posting until later tomorrow. So as many of you have said before, "no news WILL mean good news."

Love you all so much and thank you from all of us!! Sal, Steph, Ash, Ethan and our fighter Jaden.

Gonzalez's Heart

Jaden has been doing pretty good. Yesterday he spiked another temp. in the late morning. After that he took a nap. When waking from his nap, he was content and looked pretty comfortable. For the remainder of the day he did well which was a huge accomplishment for him. We took another abdominal x-ray last night because he looked bloated and still was pulling his legs in. They saw a lot of gas so we put him on some gas drops last night and he looks quite a bit better today.

He has been hanging out this morning playing a little. He seems to be getting over this mess. Let's hope he continues to improve and does not get another temp. So far we have gotten nothing back from his labs that would keep him here. If we keep getting nothing back and he gets no more temps. then hopefully we will be on our way closer to the door out.

Jaden is watching Sesame Street right now and seems pretty interested in it.

Hope you are all getting your Christmas shopping and preparations done. Enjoy this time of year.

Gonzalez's Heart

The plans have changed many times with in the last 2 days. At one point we were going to go home today and then at another point we were going to go home tomorrow. Now we are not sure when we will get to go home.

Friday night Jaden's eyes were a little glazed like, and one had a little discharge. I pointed it out to everyone and we were watching it. Then Saturday morning both his eyes were like that as well and his ear had a rashy look to it. Since Friday afternoon until now Jaden only wants to lay on his left side and when he lays on his back he cries really hard. Then yesterday afternoon we did a rectal temp. to try and help stimulate him to poop. We then discovered he had a temp of 101.7. He had also been sleeping all day Saturday so we knew something was not right with him. We sent in blood work and saw that his CRP's were elevated which is to help with inflammation. This can be common after surgery so we were not overly worried. By the end of the day yesterday he was pretty miserable.

So today he has been very uncomfortable all day long. He has had a hard time sleeping because he is not comfortable. We have checked his ears, did a nose scrape, urine check and all has come up good. We did an echo yesterday, a chest x-ray this morning and an abdominal x-ray today. All looks well. We are hoping this is just a little bug that will work itself out. Well, just a little while ago we took another rectal temp. and that came up with 103.6. With a temp that high, obviously Jaden is feeling horrible. After that temp. we sent in more blood to be checked again.

Now obviously we will not be leaving tomorrow due to his temp. shooting so high. We will wait to see what his blood work comes back with and determine what we do from there. So we need strong prayers that nothing comes back and his temp. works it way through. We were here in November for 3 weeks and 10 of those days were just working through the antibiotic treatment. My goal is to just get home by Christmas Eve. So we have a few days to get this out of his system. I will update you all tomorrow with what we find in his blood work.

Love you all!

Yesterday they took out all of Jaden's chest tubes, his pacer wires and one of his RA lines. It took a little while to get all of that out and Jaden was not happy. One of the chest tubes was extra difficult as the skin had grown over the stitch that held it the skin. We had to cut the skin a little bit in order to get at the stitch.

Now we are watching his fluid out put and his eating. (No Sara, he does not have a feeding tube). He still is retaining fluids and his face is still somewhat swollen. He is much happier now that the chest tubes are out and he has eaten a little better and played a little bit.

I bought him an elmo balloon yesterday and he keeps giggling at it and wants to put it in his mouth which of course is impossible. He has been licking it some which is second best to getting it in the mouth.

They have mentioned we can leave with in the next day depending on his fluid, eating and how chest x-rays look. I am of course anxious to go home but am nervous as this has gone so quick. He just had surgery on Monday and they already are ready to have him go home. When he is ready to go home I will know.

Below is a slide show from his pre op x-ray from last Friday, the pre op waiting room and the family waiting room on Monday to yesterday. Some of the pictures may be hard to look at.

Jaden's 2nd surgery.

Gonzalez's Heart

Jaden had a pretty good night last night. This morning Kelly and I got here and he woke up and gave us a little smile. He was up for about an hour just kind of hanging out. I even held him for about 5 minutes and then he was way to uncomfortable so I put him back in his bed.

He just went back to sleep. He is doing a lot better with his pain and being a little more happy. He did not eat much last night but this morning has already taken 4 oz. Hopefully today can be a really good day for him and maybe they can take out at least one chest tube.

I just wanted to say again how wonderful the RMH is. Two days ago I had come back there late from a long day at the hospital. I walked in my room and found a little gift from them. There was a cute poem talking about "On the 12th day of Christmas the RMH gave to me..." It was really cool to find after my day. Then yesterday there was another gift. They will be doing a gift everyday I am sure...

There were also plates of home make Christmas cookies in big ziploc bags sitting on the counter for us to help ourselves to. This morning there were breakfast bags that different groups always make and drop off there. This time, there were little keychains that stated things like love, family, etc. This place just makes life so much easier when staying at the hospital. It is wonderfully decorated with Christmas decorations and many different Christmas trees. It is a place you could be happy at if you can't be at your own home especially for Christmas. They have a little gift shop and Sal and I went there and got the kids t-shirts that have a huge pop tab on with a very little person holding it above their head. On the back it says, "support the RMH which supports the families which supports the children." It is so cool. All of those proceeds go directly toward the house. If you ever want to give, I would definitely give to this place!

I know they have a wonderful Christmas planned for the families with a ton of wonderful gifts for the children. I was telling Sal the other day that if we lived in the cities and I were to get a job, it would definitely be with this organization.

Thanks for the prayers. Love you all!

Gonzalez's Heart

We moved to the floor yesterday afternoon. It was a good transition. All of the nurses were happy to see Jaden again but this time with his surgery behind us. Jaden had a paparatzzi following him all the way to his room. Then they all kept coming back to look at him. One of the nurses said she had never seen him so quite and still.

We are still trying to control his pain and find the happy medium. His 3 chest tubes are all still in and this mornings x-rays showed he still had quite a bit of air in his lungs. They checked the tubes and the connections were a little loose which would be why the air was not being pulled out. They tightened the tubes and increased the pressure of the chest tube box thing which is what helps to suck out the air and fluids. We will do another x-ray later today to check on the air in the lung area.

He has not been eating much for the last day and a half. Hopefully he will start to feel better today and start eating again. I still have not held him yet as he is in so much pain. The aide was just doing his vitals and she got his first smile since surgery. I told her she was fired. He was supposed to smile at me first. But I guess he is a flirt and when a pretty girl comes along he has to put on his charm ;-) It looks like Jaden is coming around...

Gonzalez's Heart

Jaden is doing really well. He slept most of the day yesterday and last night. When he wakes up, he is very uncomfortable. They are still having a hard time getting his pain meds to the right place and that is hard for us to see him totally out of it or in complete pain.

He is very stable and looks really good this morning. His face is still pretty swollen and when he wakes, he rubs his face because it is so uncomfortable for him. He can only open his eyes a little bit.

They talked about moving us to the floor today. That is always a hard transition because you don't have the one on one care. It will be good though as he will be bothered less and it will be much quieter. I will let you know if anything changes and when we move over to the floor.

Thank you all for your continued support.

Gonzalez's Heart

We had an eventful night. Since Jaden is SO strong, the morphine was not helping him. So they had decided to put him on a constant morphine drip. This ended up being too much and his sats kept dropping. So they had to use a drug called narcan which reverses the morphine some. He was very angry and agitated so they also gave him a drug called chlorohydrate which takes the edge off. This has helped a little but he did not get much sound sleep. Right now he is sleeping really well and has been for a good hour or two.

He is pretty swollen today which is pretty common. He has not been out putting enough urine so they started his lasix back up to help him. His hemoglobin and potassium are both low so they are giving him a blood transfusion and some potassium which helps the heart contractions better.

Now for the lines. During surgery they had to put the line in his neck because that was the only option we had left. They pulled that out right when they were done with surgery. They also got one periphial line in his hand for a "just in case," and a line in his groin. The main lines which he is supposed to be able to keep his whole stay are attached directly to his heart. They are called right atrium lines (RA). So the RA line has fallen out of the area they need it to be. They should be able to just move it around a little to get it back where it needs to be. It could have fallen a little also because he has so much extra fluid in him at this point. We will have to watch that and work on fixing that. Right now the nurses are switching the antibiotics to the other RA line to hope that this one is still in the right spot.

So nothing to major at this point but not completely stable or where we want him to be.

Gonzalez's Heart

Jaden is stable and looks really good. He is asleep and they will extibate him as soon as he comes to a little more.

Sal and I were about to go in to see him and the nurse stopped us and said we had to wait a little longer. She had said one of his lungs had collapsed a little and they needed to put in another chest tube to help release the pressure from the air that had collected around his lung. They said this should not be a problem and the chest tube will solve the problem. Having to go in after the surgery to add a chest tube does not make it any easier on any of us.

He is a trooper and is super duper CUTE!!!

Gonzalez's Heart

Dr. Harrington came out to talk to us at 2pm and said everything went well. She said they got the lines in fine and they would bring him up for us to see him in about a half hour. Sal and I just went to go see him and they kicked us out for about 30 more minutes. The anestesiologist came into the lounge and told us very confidently that things went well and he was very pleased with it all. He thanked me for the prayers and said I should be here all of the time to pray for his other patients. It was really cute.

So far so good. Tonight is the critical recovery time so we will stay here in the lounge overnight to be very close.

Thank you all for your wonderful prayers. Love, Sal, Steph and the kiddo's

Gonzalez's Heart

Jaden is now off of bi-pass. He was taken off around 12:35pm. Dr. Harrington will be out to talk to us in a few minutes. Then after that they will be rolling him up to PICU and we will be able to see him. I just got a phone call and my dear friend said, "you will feel much better after you see him." After hearing that, my hands got all sweaty and I was nervous and anxious to see him.

I have a cold so I will have to wear a mask when seeing him. Hopefully it goes away really fast so when Jaden is extibated and wakes up, that he can see my face sooner then later.

Gonzalez's Heart

Just an update, Jaden is now on the bi-pass machine while they are working on his heart. We want him to get off this as soon as possible to help ensure no complications. Everything else is going well so far.

Gonzalez's Heart

So far so good, 8:40am they made the incision. So Raj got it done and got the lines in that were needed. Thank you Raj. So now, the prayers need to be directed to Dr. Harrington and the rest of the team.

It is a very bitter sweet moment. They got the lines in but now his chest is open and they will be working on his heart.

Gonzalez's Heart

Good morning to you all.

Jaden had his special (pre-surgery) bath last night and then Lana and I made an ornament one with his hand and another with his foot. We had a good night with him.

He slept wonderfully and slept through our walk to the hospital. We got here at 5:30am and then we went back to the room to start the check in process. Jaden was really happy and then took a nap through all of our paperwork. The anesthesiologist came in and I told him of the problem we had the last time around. He was very friendly and I felt very comfortable with him. His name is Raj. So started praying hard for him. Without him getting the lines in, we won't be able to move on with the surgery. He came back in after talking with Dr. Harrington our surgeon and I told him I was already praying for him and he said that is good to know.

We will let you know more...

Gonzalez's Heart

Well, tomorrow is the big day. Jaden has made it through the weekend without getting sick. Thank you to all for those prayers as God has clearly answered them. We will have a very short night tonight as I am sure we will not get much sleep and then we have to be to the hospital by 5:30am. The surgery is supposed to start at 7am. We will need lots of prayer for the surgeon's wisdom and calmness, as well as her team. On top of that, we REALLY need prayer for them to be able to get the lines in that they need and for there to be no problems with them. The team met on Friday to discuss Jaden and the complications he has had with all of his lines. They have discussed alternatives and have a plan that they will be taking. Hopefully with all of this discussion before hand, everything will be smooth sailing.

We will be updating multiple times through out the day so when you check, you may want to check previous posts.

Thank you again to all as your support has helped us through this so much eaiser.

Love you all, Steph

Gonzalez's Heart

Jaden and I came down to the RMH today. I had called yesterday in the morning and they had a waiting list of 6 families. They did not think we would get a room for awhile. By the end of the night, they called with a room. God was definitely watching over us. So Jaden had his pre-op physical today at 1:30.

They checked O2, EKG, blood pressure and of course they had to do lab work. I had warned the lab tech that he is a very hard stick and she assured me that she could get it. I gave her one try. She tried, and as I knew would, she failed. So we called the nurse practitioner, one who works in the heart cath. a lot. She tried and got it the first time but then it started to spasm so she had to pock again because she could not get enough out of the spot she was in. The next time, it did not work at all. So we then calmed him down a bit and tried for the fourth time. That time it worked.

It was very hard for me as it was starting already. Complications and set backs. The appointment was supposed to be a short one and ended up taking 3 1/2 hours. But how I see it, it took 4 times to get his lab and then it was fine. This is his 4th scheduled operation this time around, so it should all be fine. Right?

Well, we thank you all for your continued support and prayers. It means so much to us to know we have so many prayers coming our way. We just need to keep him healthy through the weekend. Sal and the kids will be coming tomorrow and the surgery is still scheduled for Monday morning. We have to get there at 5:30 a.m. and it is scheduled to start at 7 a.m. We will keep you posted if anything changes, otherwise we will let you know Monday as things unfold.

Thank you again and pray hard!!!

Our Christmas tree cutting.

Thanksgiving at the hospital and Ronald McDonald House.

Gonzalez's Heart

We are home!!!

Thursday, a little bit before we were all going to go over to the RMH, Jaden's line blew out. It was such a horrible feeling. I knew we were going to need to try and put another one in. I was not looking forward to what we were going to have to go through again. Vascular Access came to make sure the line was no good. The guy that came up was going to try to put a line in and I said that I needed Ray to do it. He is one of the few that could do it in the past. So Ray came and we all prayed and he got it the first try. I was so relieved. So Jaden went down for a nap and we all went over to eat. There was a perfect spot for us all to eat and PLENTY of food.

After everyone left I called the hospital and they said Jaden was fine and playing in the hallway with all the nurses. So me and the kids went to bed.

Grandma came in the morning so I could go over to the hospital. When I got there, we found out that his line had blown out yet again. At this point he only had one more dose of antibiotics so we decided that he would just get a shot for the last one. The shots are not as effective but the Dr. thought for just one, it would be fine. Grandma and I packed up the RMH room and cleaned it. We then came over and packed up Jaden's room and left. Jaden loved his elevator ride down. It felt wonderful to bring him outside again.

We had a beautiful, sunny drive home. Jaden is still adjusting to being home and with the excitement of the kids. He gets a little overwhelmed and when ever I leave the room he freaks out. For now, the date for the next surgery is December 11th. I need to check on a few things before I agree to that date. I will let you know in the next couple of days if it remains.

Love to you all, Steph

Happy Thanksgiving!

Hope you all have a blessed day and enjoy your family and all that you can give thanks for. God has been good to us and we are all able to be together today.

Jaden is doing well and happy. So far, we still should be able to go home tomorrow. I can not wait to be home and be in my bed and have a normal Gonzalez family life again.

Thank you all for your prayers. Love, the Gonzalez family

Gonzalez's Heart

Jaden has settled in really well here at this point. He is back on his schedule for naps that he was on at home. The last few nights he has done good as well and when he wakes up, he eats and then goes right back to sleep. Before, he would wake up and cry for along time because he did not know where he was at.

Yesterday we went all day and his line had not blown out. We were very excited. Then when I started to put him to bed last night, his arm was wet. So I thought he just bit through the cord with his new baby tooth that he has. So I called the nurse in and she changed the cord. She went to flush it and sure enough, it was not the cord but rather the site. The hole had gotten larger and the flush was leaking out the edges. It is good because we did not loose that vein but we had to put another line in. So Vascular Access came up to put one in with their doppler. Well, it took 3 times to get it in. I felt horrible for Jaden but after a lot of big hugs he was fine. Vascular Access felt awful. His face was all red and he apologized to me. He tried really hard and I knew he was really concerned about doing it the first time.

Our family will be having some gobble gobble at the RMH. They have a lot of volunteers who will be their cooking all day. Right now the community fridge is filled with lots of Turkeys. We will take turns coming to visit Jaden. Then hopefully we will get to go home Friday or Saturday.

Hope you all have a great day.

Gonzalez's Heart

Where do you think that Jaden and I are? Where do you think Sal and the other two are? If you guessed that Jaden and I are still at the hospital and Sal and the other two are at home, then you guessed right.

After meeting with infectious disease and the cardiologist team, we were left with two options. The first is to have Jaden get a PIC line tomorrow. This option has some negatives. This would be much harder on Jaden as he would need to be sedated and put under anesthesia. He would also have more chance of getting infection from the line. We would however get to come home Tuesday. The second option is to keep the perifrial line he has and hope it lasts awhile. This option, the line will probably blow out so we will need to put another line in when this happens. Jaden has been an extremely hard baby to get lines in. This would be easier on Jaden but we would have to stay in the hospital until Friday or Saturday.

As of now, we have decided to stick it out in the hospital. This seems to be the easiest on Jaden. We will make that final decision tomorrow when everyone is back to work and we can get more information on our options. So we will most likely be spending Thanksgiving at the RMH. Our families will come here and join us. RMH is having a Thanksgiving meal and it is open to our extended families as well.

That is all for now.

Gonzalez's Heart

I hope you are all doing well. The Dr's. had decided that we would most likely get to go home tomorrow. Late this afternoon they came in and said they had found a third bacteria. The antibiotics that Jaden is getting will not work with the bacteria they found. So tomorrow infectious disease will be coming in and they will figure out exactly what needs to be done and if we still can leave tomorrow. They are a little concerned because last night his sats were hanging low. Hopefully he has a great night and then tomorrow we can figure out a good solution so we can get home and have him recover there where he is comfortable.

Will update more tomorrow.

Gonzalez's Heart

Gonzalez's Heart

So here is the scoop. We had two lines in Jaden's arms to work with and hopefully make it through the weekend. Well last night one of the lines went bad and his arm got swollen. So we had to remove that one. So today in rounds they all put their heads together and decided that what we will do providing nothing happens from now until then, that Sunday in the morning we will give Jaden his last dose of antibiotics and then they will let us go home. No PIC line will be put in providing all goes as planned. We will then get his last 2 doses of antibiotics by shots. The clinic we go to or home care will give it. Not sure which one yet.

They are trying to get me a surgery date by the time we go home. They said in between Thanksgiving and Christmas sometime. I said I would like a date even if it is tenative. So we will be rolling home in just 2 days. I am so excited. I am nervous at the same time as the kids bring home many bugs from school and activities daily. I need strong prayers that he does not catch anything while we are back home. Obviously this will delay the surgery yet again.

He is doing well and we have been taking many walks on this level as we are not allowed to go anywhere else. He loves to be out of his room and especially loves to flirt with all the nurses. He has actually gotten back on his schedule for sleeping which is amazing.

Thank you all again for your great support and all of your prayers. It means so much to us. I was just telling Steph T. today that I can tell the difference between the families that do not have God in their lives and the ones that do. That ones that do not, walk around with a bad attitude, always seem upset and are always complaining. I was talking with one dad and I told him that God has chosen for his baby boy to have these complications to teach us something very important. He told me he does not believe in God or that way of thinking. I told him I was sorry and that I would tell him these things anyway. He said that was fine. What a way to be able to minister.

I am going to try to get a little nap in while Jaden is taking one but wanted to let you all know what was going on.

Gonzalez's Heart

Jaden is doing well. He is not to crabby anymore and is able to eat much better. He still has some discomfort especially when eating, but overall is happy again. He does not have the Roto virus but we are still waiting on one lab to come back so they are keeping him in isolation. This is better anyways because he gets over stimulated very easily and having a roommate is to much for him.

He does have bacteria in his blood, urine and spit. It is through out his entire body and they are not sure how he got it. My guess is the OR and they just don't want to take blame for that. They are going to have to put a PIC line in him to finish off his antibiotics. This will go in the arm and attach at the heart. Depending on what they find today will depend on if they let us go home with this line until treatment is done or if we will stay here. They will probably be putting the PIC line in tomorrow. Because he is such a hard one to get lines in, they will come to his room first to do an ultra sound to make sure it will work. Our surgeon's nurse, Chirstie who is wonderful, has requested the best person to do this procedure so hopefully there will be no problems.

Monday and Tuesday I so rudely cancelled visitors because I was way over the top and could not handle the stress. I have now settled into our new situation and we are open for visitors again. Sorry to all who I turned away..

Hopefully by day end we will have an action plan and know what we do from here.

Love you all!!!

p.s. For those of you who are bright eyed and bushy tailed, KSTP will be broadcasting live tomorrow from 6-7am from the Ronald McDonald House. Ronald McDonald and Rusty Gatenby from KSTP will be here and they are making breakfast for everyone. I may go down but not sure if I want to be on TV :-) I am interested in the yummy breakfast though.

Gonzalez's Heart

I have posted a few times today so read below for a update.

We are now on "the floor" which is a area for just sick babies. Nothing extreme. We are still in isolation and they have started antibiotics to help get rid of the organism's in his blood. They are checking for a virus called "Roto" something which is why we are in iso. We still do not know how long we will be here for and if he has to stay through out his antibiotics which is 7-10 days. I will let you know as soon as we know more.

When we left picu, all the nurses were gathered around his bed in the hallway telling him how cute he was and they would miss him until he comes back in the next week or so. Then when we opened the doors to come to this wing "5A" three of the nurses instantly remembered us from when we were here the first time. They were all swooning over him. The funniest thing is, we are in the exact same room and even the exact same spot as before. Funny how things all work out.

Will update more when I know more.

Gonzalez's Heart

We are still waiting on a few labs but we have some results.

Surgery is now cancelled for the 3rd time. He has multiple organisms growing in his blood probably due to the arterial line. This could be a reason for the crabby pants, fever and so on. So they have started him on antibiotics. We will know later if the surgery is postponed for a week or 2. If it is a week, Jaden and I will stay at the RMH to hopefully help eliminate any other set backs. I will know later today but wanted to update you on the cancelled surgery.

Gonzalez's Heart

Sorry I forgot to tell you, his clot did clear up and that is good and ready to go.

Now we just need to get him healthy again. They moved us into an isolation room last night and are checking everything we can think of. I will let you know when all the results come back.

Gonzalez's Heart

Sorry for taking so long to update. We have had a busy couple of days. Jaden had a really good night last night but the past 2 days he has just not been himself.

Today he has started to show us signs of what we were trying to figure out for the last few days. He has had a rectum temp. from 100-102. He has had runny diapers, not eating well, threw up once and is EXTREMELY crabby. He is only taking cat naps so is falling behind on his sleep.

We checked his ears, nose and throat and found nothing wrong. They sent in his blood to check and see if they can find any infections. At this point they are not finding anything. His O2 level has been low so they have put him on some oxygen which has helped.

Overall, he his sats look good but it is very evident that there is something brewing. Please pray for this bug to work quickly through his system.

Jaden wanted to say goodnight to everyone. We just took this picture and wanted to share it.

We will be staying in the PICU until the surgery because he has lines in him. Since it is so hard to put them in him and that is the reason we had to delay the surgery and now we are having some big issues, it is not worth taking them out to do it all over again.

Sorry for the very long and not correct sentence. I hope you all understand.

Good night to you all. Talk to everyone in the morning!

Gonzalez's Heart

Jaden had a pretty good night of sleep and then this morning he was very crabby and uncomfortable. He had not had a bowel movement for awhile and when he ate he looked very uncomfortable so I told the nurse I thought he needed a suppository. After getting that he filled his pants a whole lot and since he has been much happier.

They did another ultra sound on his leg and found the clot has not changed at all so they will now switch to a stronger medication called TPA which should help better. Because it is so strong they will switch after 12 hours back to Heparin. So Dr. Harrington (surgeon) came in this morning and said she put Jaden on her surgery schedule for Friday the 17th. Hopefully the TPA will kick into gear and help to get rid of the clot and then we can do our now 3rd scheduled surgery.

We will not have any new info. until after the next ultra sound which will be tomorrow.

Gonzalez's Heart

Today has just been a waiting day. We have been watching to see how Jaden's blood flow is in his right leg. It has seemed to improve but just a very little bit. We will be having another ultra sound on it tomorrow and then decide what we do next.

Since Jaden kicked out one of his lines last night they had to put in another one. So I made sure that whoever was going to do it brought their echo machine so we could get it in the first time. They came to do it and did get it in the first time. My hands were all sweaty by the time they were done because I was so nervous they would not get it. After they put the line back in, they turned his sedation drugs down and then waited for him to start coming to. Once he started coming to, he was ready to get off that bed. So we then quickly got him ready and extibated him. It felt so good to have him off the ventilator and breathing on his own.

He has been very crabby as I am sure his throat and who knows what else is really bothering him. We have been snuggling with him all afternoon. We will know tomorrow when the next surgery will hopefully be.

Thank you for all of your posts and all of you who are checking the site. It keeps us going and strong. Love to you all!

Gonzalez's Heart

Forgive me if I mumble through this but it is in the middle of the night and I had not been sleeping for more then 2 hours before they woke me up to update us.

Jaden's right foot and leg had not been getting good blood flow since after he was in the OR room. This could be from one or both (the heart cath. procedure and/or them getting in the artery instead of the vein yesterday). Our nurse Sally, had called the anesthesiologist who had been working on Jaden pre-op and he was not concerned. I however, had my motherly instincts kicking in strong. All evening I kept asking everyone, "are you sure this is ok?" I told them I was not comfortable with how it was not improving well enough. So a very thorough resident Dr. listened to me and decided to call for an altra-sound (which Sally thought unnecessary) just to make sure nothing was going on. Well there is something to be concerned about.

What we already knew was Jaden was occluded from the right femoral artery. Usually this is not a problem and it clears up on its own. The normal flow through the artery is about 60-80 cm and Jaden's is about 5 cm. At this point, 5 cm is enough so that his leg is not having big issues. However, it is to small that they want to clear it up before they do surgery. So the plan of action now is to wean him off his ventilator and extibate him as soon as they can. They will then give him a blood thinner at that point and wait for it to clear up which could be quick or take days. He will need to stay in PICU the entire time on this blood thinner. So the prayer we need is for Jaden's artery to get better flow so we can proceed.

So the nurse on tonight told me I did not look to surprised. I told him that Jaden was a little stinker and he does what HE wants to do. I also told him that God has planned for this and he is to wait for some reason or another.

Another tricky thing that Jaden did was he kicked one of his lines off of his foot. Now don't forget, he is being sedated with fentanlyl and versed. They had to increase the amounts even to even more because when it starts wearing off, Jaden is to strong. He also gets VERY mad and then his blood pressure rises very high. That just shows everyone who is truly in control and what a strong little boy Jaden is.

I will let you know if there is any new news and I will update after he is extabated.

Gonzalez's Heart

As of 11:30 am Jaden went back up to the picu. The surgeon pulled him out of the operating room. The surgeon came out to talk to us and told us that she was not going to do the surgery today.

After about 4 and a half hours they still could not find the correct vein even after bringing in an interventional radiologist. They thought they had got the line in the vein and found that it was actually the artery which is not what they wanted. By this point his legs were totally blue and he was very cold so the surgeon said she would not proceed with the state he is in.

So tomorrow at 7am they are going to bring him to another OR where they have more specialized x-ray equiptment to hopefully get the line in the right location. The only other option if they can not get the line in the right spot is to put it in the neck which could cause a lot of problems with blood backing up so they don't want to do this. After they get the correct vein or take the alternative action (which we will pray it won't result in this), they will move him into the the cardialogist OR room to proceed with the heart surgery.

Thank you for your continued love. Jaden I know, is feeling the power of all your prayers!!!

Gonzalez's Heart

We got to the hospital at 5am and took Jaden to start getting ready for his surgery. They took him back and would not let Sal go this time to be with him when they put him under. That was hard for me to know that he would be awake, alone and in a strange room without one of us. So we then came to the waiting room and have been waiting for the operation to start. They will let us know when they are ready to start. So far mom, dad, Mattie, aunt Robyn, tia Kelly, great aunt Diane, tia Wendy and tata Jose have been here. The volunteer in the waiting room has already learned we are an exciting and fun family. She asked if it was safe to offer Sal any sugar.

The anesthesiologist just came out to update us and let us know that they have been working for 80 minutes now trying to get all of his lines hooked up. They need to put one in his groin area to put blood through in case of an emergency. Both his groin vessels are occluded (blocked) so they are not able to put a line through it. So this is taking a long time and they had a specialist come from the hospital to help with the x ray machine to help guide him with the line. He also said that worse case scenario would be that they would put the line through his neck. They prefer not to do it this way. So the surgery will not start for awhile longer until they are able to figure out how/where to put the line.

Gonzalez's Heart

We had a really good confident nurse last night so I was able to go to the RMH comfortably. They do not have a place for us to sleep in the PICU and the family lounge was so full that someone had to sleep on the floor. I came back really early this morning and they said the night went good but that Jaden was a very light sleeper and woke up at least 5 times. They all held him and he went right back to sleep. The nurses all love him and always talk about how cute he is and "who would not want to come to work when they get to play with a baby like Jaden." That makes Sal and I feel so good. I also know he will be taken really good care of because he is so loved and spoiled here.

He overall looks wonderful and is doing very well. However, his sats are still a little low and the cardiologist has been concerned so they did some lab work to see if anything was going on that they could not see. Sara, to answer your question, they did have him on O2 and they actually had it higher then they normally do and it did not seem to help.

One of the residents just came in and said since we are staying at the RMH and are so close to the hospital that they are going to let us leave. So they will work up the paperwork and we will get to go. YEAH!!! Jaden and I will take the long way back and enjoy the day together. After all of this though, I was reassured how hard it is going to be after his surgery. Jaden is so active and wants to play with and explore everything. He will not want to be help down and hold still. He will get very angry. I am already knowing that.

So that is the good news for today. Surgery tomorrow AM. Pray hard.

Love to you all, Steph

Gonzalez's Heart

So today ended up being pretty hard. The procedure/surgery for the heart cath. went pretty well. The Dr. said that his artery was so small they had to go over the shunt in order to see what they needed. This is not done too often so they sent him to PICU which he will stay overnight. The Dr. had said that he is definitely ready for his surgery and if we had waited another month he would be a very blue baby.

So we went to extabate (take out his breathing tube) him and his O2 was sitting around 50% which was not good. They got very nervous and there was a whole lot of staff standing around his bed for a long time. They started talking about intubating him again and I told them that talk was not aloud in this room. We all laughed at my great comment through tears. After getting a heart cath. they need to keep his leg still and straight so they had him on a board. Because his sats. were so low they decided to take him off a few hours before they normally allow so he could sit on my lap. Finally after calming him down and getting him to rest, his sats. shot up to mid 70's where they are supposed to be.

He is awake and very uncomfortable right now. We are giving him a bottle but then we have to leave the room for a little because they are doing a procedure on another little baby. So I will be done for now and let you know how the rest of our evening goes in the AM.

Gonzalez's Heart

Jaden's echo, EKG and physical went well today. His O2 level was a little low though. Tomorrow we go in early for his cath. The Dr. told me today all of the possible problems that can happen when getting a cath. done but explained the importance of having it done. He also said he likes to see his heart babies stay in the hospital overnight due to the many issues that can occur. We will know tomorrow afternoon if we are having to stay overnight.

The kids are on their way here right now and had a pretty bad morning this morning. When they left last night, Ethan started crying really hard and told me I had to go home with them. It is amazing how much they understand what is happening. We give them to little credit. Lana will play with the kids all day tomorrow here at RMH. Hopefully they will not be to difficult for her as they are very over stimulated and on a sugar high here when here.

Keep the prayers coming, we really need them. Thanks for all of your love...

Gonzalez's Heart

We are here at the Ronald McDonald House. We got a call yesterday afternoon saying that they had a room for us. So we packed up last night, finished this morning and headed down here first thing. We have already played in all of the fun areas and are about to walk by the river. We are in room 138. It is a great relief to know we have a room and will not have to worry about that. I had called Friday and they had no rooms and no expected departures. God answered our prayers and took that burden away from us.

Tomorrow is Jaden's echo and I think they will be doing all of his lab work, x-rays and we will meet with the cardiologist here. Tuesday we have to be to the hospital by 6:30 am and Jaden will have a cath. done. We will be on the 5th floor in a room until they feel he is ok to leave. If he has any bleeding from it he may have to spend the night. Let's pray for no problems. I do not want to have to spend the night there just yet. If all is well, we will go in for surgery Thursday morning. I will start updating daily or as often as I can to continue to let you all know the status with him.

Sal, the kids and Lana (our nanny) will be coming back and forth this week and then will stay Wednesday night until Sunday night. The kids are already off the walls and being very naughty. They definitely are being affected by the stress we are all feeling. It is already difficult and Sal and I have had to stop for quite a few hugs today. We are trying very hard to be positive and calm. Outwardly we are but the kids can feel our inward emotions.

So we are off to enjoy the river. Hope you all had a great weekend.

Love, Us

Gonzalez's Heart

Things have been very busy around here. We are preparing for Jaden's surgery figuring out schedules and when Sal and the kids will come down. We are also trying to stay healthy which has taken a downward spin in the past 2 days. Jaden had been having a runny nose since Sunday and then last night was up coughing all night and had a lot of stuff coming out of his nose. Today he has been fine but we all know that night is the hardest when being sick. We need a ton of prayers coming at him to be done with this by next week. Ashley was also coughing last night and this morning. She of course is always kissing Jaden and holding him. So they probably got sick from each other which at least is a cute way to get sick.

As some of you know, Sal and I are opening up a small ma and pa mechanic shop. We are very excited but have all of the preparation and planning for that going on at the same time as preparing for surgery. So needless to say it has been stressful. We actually get the keys today and will be going there in a few minutes. We have our first customer coming in first thing in the morning (The Theis's). We are not completely ready for business to start coming in but have planned on the Theis's so we have what we need for that.

We are so excited for this new addition to our business. I am sorry, we at this time are not doing oil changes. Many of you have been begging for it but have not decided to add that on to our shop at this time. We have spent many hours brainstorming about names and trying to decide what would be the best one for us. Our FedEx business name is Frontgate, so with some help from many others, Steph had come up with taking the F and G from Frontgate and came up with Fifth Gear. (Sorry Wally). So we are Fifth Gear Repair Inc.

Thank you all for your support with our family. We love you all!

The Gonzalez's

Gonzalez's Heart

So the anticipated date has finally been scheduled. Jaden will have an echo, kath and physical Nov. 6 & 7th. His surgery is scheduled for Nov. 9th at 7am. We will have to be there at 5am. When I received the date over the phone, I was so nervous. After hanging up, I broke down and cried. It was like reality hit that Jaden had to go through heart surgery again. But it also means we are one more step closer to him being done with his 3 surgeries.

We need some major prayers going now. We need to pray that Jaden remains very healthy from now until the surgery. He needs to continue to gain weight in these next 3 weeks and get much stronger so his surgery goes perfectly. We also need to start praying for the sharp knowledge, skill, safety and well being of the surgeon (Dr. Harrington) and her team. If Dr. Harrington is not feeling 100% the day of the surgery, her focus may not be as good. So if you could all start praying for these things that would be so wonderful.

We will continue to keep you posted with Jaden's health and any prayer requests we need. Thank you all again for your continued support and prayers. We know it is by the grace of God that Jaden is here with us today and we continue to thank him daily for our wonderful family.

Much love to you all, Steph

Jaden's 6 month, Ethan's 4 year 10 month and Ashley's 6 year 8 month photo shoot.

Get Your Own! | View Slideshow

Gonzalez's Heart

So we had another appointment with Chip yesterday. Chip thinks Jaden looks good and will be fine waiting for this next surgery. We still do not have a date a month later, however, it will now not be until November sometime. I will be personally calling to the U of M on Monday to set a few people straight.

I am not going to go into to much detail of our appointment and my confronting Chip of his practice other then I will say he was more unprofessional then any other person or situation I have experienced. Being in the military for 8 years, living in California and having multiple jobs, I have encountered a lot. He basically bad mouthed and cut throat everyone involved to include basically telling me I need to get a new pied. Dr.

Everyone was to blame but himself and he not only talked defensively for 45 min. at about 60 mph but he swore multiple times (not at me) but in his general outbreak. It was so intense in there that you could have started fireworks. Wendy (Sal's sister) went with me and she could not believe the kind of manner he conducted himself. He has some major issues he needs to deal with. He would not listen to me and at one point we were both talking at the same time. I was very calm, professional and said it as it is. I told him that I know many of his patients and they all feel the same and I am speaking for them all. I told him I wanted to communicate this to him so he did not lose his practice and so he could try to change his way of running his clinic. However, he was not interested in a thing I had to say. Wendy thought I was way to nice to him but said even if I had been more aggressive it would not have made a difference.

After this next surgery, I am going to move forward and take some extreme actions against him which is very unfortunate.

So when I have a date, I will let you know. Until then like Kelly posted, we need to keep our energy in a positive manner so we can get through this with another A+. So please keep the prayers coming for a calm heart for us all. We also need to pray for Jaden and our family to stay healthy so that when surgery is scheduled that we do not have to push it back due to illness.

Much love to you all, Steph

Gonzalez's Heart

It has been almost 3 weeks since our appointment with Chip the cardiologist and no word on the surgery. I had our home care nurse Jenny figure out what is going on and she got a hold of the scheduling person at the U of M for the surgery and found out that Chip never turned in the orders. The lady said this has happened with him before. We have had many, many issues with Chip but have not said to much to all of you. This was the last line and I am going to file an official complaint. He has stepped way over the line on this one. We will work on getting a date set tomorrow (Jenny and I). Hopefully we can get something accomplished.

Jaden is doing well and luckily has not gotten sick yet but Ethan has. We are sanitizing our hands 24/7 to try and help to not spread anything. If Jaden gets sick and the surgery has to be post-poned, I will put all the blame on Chip. Pray for a healthy family and for the surgery to be scheduled so we can move on.

Love and thanks to you all for the continued support.

Steph

Gonzalez's Heart

We are still (not so patiently) waiting to hear when the surgery is going to be. We have heard nothing and even called the cardiologist to see if they have heard, which they have not. Jaden is still spitting up a lot and his pied. wants me to take him in so they can see what is going on since it is such a large amount.

We had a great weekend at the cabin. The weather was perfect and we spent the entire weekend outside. We raked, cut wood, went on walks, had a bon fire and added Jaden's name plaque to the family trail of names down the driveway. We even did our dogs name to the trail. It was a lot of fun. Enjoy the slide show below of our weekend and we will keep you posted.

Love to you all, Steph

Fall family fun...

"Pampered Cheeks" by Steph Theis. Photos by Angela.

"Pampered Cheeks"

Gonzalez's Heart

Jaden had his cardiology appointment last Wednesday. The appointment took a little over 3 hours. Luckily Steph T. was taking care of Ethan and Adina picked Ashley up from school. His echo looked really good and his chest xrays came out good as well. His lab work had no signs of any problems in it and Jaden over all looked really good to Chip. His sats have been in the low 70's for a few weeks now so that seems to be where his "now" normal is at.

Chip said he would like to have the surgery in October. He put in a request for the first week since he will be at the U of M that week. I have not yet heard from scheduling so do not know when it will be. It will come up in a blink of the eye. I am trying to find a nanny or someone who can help with the kids pretty much full time while I am gone and for a little while when I get back as we have to be very, very careful with how we handle Jaden for 6 weeks after the surgery. This is going to be hard but dad and Mattie have already looked into some options and we have found a few possibles.

Please keep us all in your prayers as we prepare for this next step. It has already been difficult just thinking about it. The surgery is supposed to be a lot easier this time around but we are also a lot more attached to Jaden. They say on average the babies get out of the hospital 10-14 days after this surgery. We will see how quick Jaden wants to run out of there. We will pray for no complications and a quick recovery so we can get out of there fast. We will stay at the Ronald McDonald house again. And of course visitors are welcome. For those of you who have just started reading the blog, you can go into the archives on the right of the screen and there are many different sites that I and/or others have posted which gives out great info on Hypo-Plastic Left Heart Syndrome. There are also many pictures, slide shows and a montage that you can look at.

Above is a slide show of "Pampered Cheeks" first photo shoot. This is Steph T.'s new business and all of the babies are babies that are sporting her awesome diapers or whose mom's have been taught by Steph how to make them. It was a lot of fun and Angela who took the pictures on the slide of our family pictures took the cute pampered babies butts pictures. Hope you enjoy these fun pictures.

We will let you know as soon as we know when the next surgery is scheduled.

Love, Steph

Gonzalez's Heart

This past week has been pretty rough. Jaden has been very very crabby and is spitting up a ton. When Jenny (homecare nurse) came on Thursday and weighed him, he had only gained one once in two weeks. That is 13 ounces to little. His sats were a little low and she was concerned at how uncomfortable he was with his spitting up. We got in to the Dr. on Friday and got bumped up two weeks to see his Cardiologist tomorrow. Friday the Dr. actually talked to Chip on the phone and the two of them decided to wait on any tests until we see Chip tomorrow. They did put him on Zantac and doubled his Reglan to help with all his stomach stuff. I will let you know tomorrow what Chip says and how the appointment goes.

We do need a lot of prayers for Jaden and for our family. It has been very stressful on Sal and I. In return the kids have been a little off the wall. We are all tired as the stress drains us so much. The Dr.'s keep telling us that it is the other Dr.'s area of concern so we are not getting any kind of answers. If it were not for Jenny and her help, I am not sure what we would do. We just need one of the Dr.'s to step up and say, I will take care of it and help to figure out what is going on. We have none of that.

Jaden is crying so I better be off. Love to you all.. Steph

Gonzalez's Heart

OK, so naturally when all aspiring actors give a show it is normal to get a little stage freight and they forget their lines. Well Jaden got a little phone fright and he got the hiccups. So the breaks you hear is not the phone cutting out but his hiccups. You even get a squeal out of him. Enjoy the noises of little Jaden.

Gonzalez's Heart

I know many of you have been waiting to hear the news from the swallow study. I am sorry it took so long for me to update, but we have been very busy setteling into our new schedule.

We woke up a little earlier on Wednesday to get to Jaden's swallow study appointment on time. We dropped Ashley off at Adina's house so Ash could still go to school. Adina also picked her up and then brought Ashley to her gymnastics class. We then dropped Ethan off with Tammy in Maple Grove. We then went to the appointment. Jim, who worked with us while in the hospital remebered us very well and conducted the appointment.

Jaden had not eaten since 6am and by the time they started it was almost 11am. Jim was very impressed at how happy and content Jaden was especially not having eaten for so long. He also commented on how GREAT Jaden looked. So they started the test using thick Barium as if it was his thickened milk. After seeing him do well with that, they then tested Barium at a thin state with 3 different nipples. They used a slow flow cross tip and circle and a fast flow. He also tested him with a consistency of rice cereal and a spoon. He did wonderful. Jim said he knew exactly what to do with his tounge and swallowing and was very pleased at how well he could coordinate this all.

The end result......... (drum roll please). He did not aspirate. YEAH!!!!! We were all so proud of him. So this means that I can start nursing him. However, we need to wait and test Jaden with a slow flow nipple first for a week to make sure he can handle it and then to make sure he does not start to show any signs of aspiration. After a week of trying with the bottle, we then will transition into nursing. We will have to still bottle feed every couple feeding to keep up the higher calorie intake. We were going to start right away but were waiting on hearing back from Chip "the cardiologist." Of course I told Jim he was probably in Jamaca or something and good luck getting hold of him. We still have not heard back from him (no surprise on this end), so I am just going to start tomorrow.

It will be hard though to nurse because my supply has gone so low. I have started drinking "nursing mothers" tea and taking natural supplements that is supposed to help increase my flow. It seems to have helped a little but Jaden may not get what he needs so may get frustrated. It will probably take a lot of work and calculation to make sure to not pump too close to when he needs to eat. I will have to get him on a tight schedule as well as myself to make sure it works.

So all great news here!!! Hope you are all doing well and again thank you for all of your prayers. God has heard. We need prayers now for Jaden and myself to get where we need to be so he can nurse. It has been 5 long months of pumping and I am so ready to be able to hold my baby and feed him the way God intended.

Love, Steph

Gonzalez's Heart

Jaden has been doing well this past week. He is still not eating as much as he had been prior to his immunizations, but he has at least increased his intake to more comfortable amount for us to see.

We had a good time at the cabin but by the end of our stay, Jaden was definitly ready to be home. It was perfect weather and we hung out, went on a walk, played games and had a great big firework display. That was pretty fun.

We are going to Jaden's swallow study tomorrow at the U of M. Please keep us in your prayers as we are hoping that he is not aspirating anymore. I think he is but a miracle could happen overnight. We will ley you know how it goes.

Thank you all for your continued support. We are still looking into immunization information. So yes Robin P. I would love to talk with you and see the information you have already collected.

Love, Steph

Gonzalez's Heart

Things are going much better now. Jaden has been steadily gaining weight again and he is getting back up to his normal feedings. He still has a hard time consistently getting down what he should be and he is having some reflux still. He is as happy as ever and is getting ready to start running. He wants to just get up go. He is always trying to sit up or stand up and if he is not doing that, he is usually kicking his legs. Robyn said she did not think she has seen him with out him kicking his legs all the time.

We are going to the cabin this weekend. It will be nice to have a weekend away. Ashley started school this week and has loved every second of it. She is a little wound up as she is readjusting to the new schedule. Ethan will start pre-school next Tuesday. The school did have a play date for the kids today for an hour to get to know each other. That was really cool. Ethan will be going Monday through Friday until 11:30am. Jaden and I will finally get some really good alone time together. I am really looking forward to that.

Because Jaden had such a bad reaction to his immunizations, I decided to do a lot of research and ask a lot of people how they felt about them. In my research I have found some really disturbing things. There are so many negatives to getting them and so many unknowns. Cancer has been linked to them as well as many things such as Autism, ADD, ADHD to name a few. When a child just receives the shots, others around them are more able to get that particular illness. Many of the shots are live, therefore can be spread more easily. Plus they say if you are already fighting with something that it is sooo hard on your body to add this to it. So I will be doing a lot more research because we feel that we may not give our kids any more immunizations. We are praying about it and will not move forward with it until we know forsure. If anyone has questions and would like to know more, feel free to ask me.

Hope you all enjoy your long weekend. We will post pictures from the weekend.

Love, Steph

Gonzalez's Heart

Jenny came this morning to weigh Jaden and check his sats again. He was good all around except his weight. He had lost 20 grams since yesturday. With this, his cardiologist wanted to see him in the hospital and be feed with the NG tube. I however did not agree so declined that offer. They said if I was comfortable with him not being monitored all weekend then there was no other option. D.U.M.B. thinking on their part. Jenny will come Monday and at that point see where he is at and then we will recommend to Dr. Martin that he sees a GI specialist or get some GI x-rays. He may simply have developed major reflux or there could be something else wrong. We are not willing to just brush it off and assume we know what the problem is so we will do something further.

The site that Steph T. posted on is trying to "pass a Joint Resolution of Congress to declare February 7-14 as National Congenital Heart Defect Awareness Week!" This will help in many levels and is very important for families like us. Please go to this site and send a letter to our representative. The link listed will walk you through the steps. There is a letter at the bottom of that page that you can copy and paste. Then make sure to obviously personal the blanks. It will only take a few minutes. Thank you for your support. You can periodically send it multiple times and tell others to do the same. http://tchin.org/aware/letter.htm

With much love, Steph

Gonzalez's Heart

So things are a little better today. Jenny his homecare nurse came again and he went from low 70's to high 70's for his oxygen level. He is also doing a little better on his food intake. He still is spitting up quite a bit and he does not normally do this. This does concern me still. Jenny has been authorized from the insurance company to come every day as we monitor his weight and food intake. Hopefully, we will pop out of this little rut he is in and resume back to normal intake.

Thank you for the prayers as we know we need God's hand to get us where we need to be.

Love, Steph

Gonzalez's Heart
So, we need some prayers to come our way. Since Jaden's immunizations last Thursday, he has not been wanting to eat. He is eating on average 12 oz. a day. He should be eating anywhere from 24-32 oz. a day. He starts to eat and then after about an oz. he gets antsy and does not want it anymore. I called his home care nurse Jenny today to have her come over and take a look at him. He looked good all around. His O2 was a little low and his nail beds were a little duskier then normal. But overall, nothing to cause him to not want to eat.

Jenny called our cardiologists nurse to have her talk to Dr. Martin. He said he does not seem to have any cardiac issues so we should contact his pied. (Dr. Hu). We did that and she was not sure what to think about it all. So we are having Dr. Martin and Dr. Hu talk tomorrow to see what the next step should be. Hopefully they will connect and decide what will be best for Jaden before anything gets even worse.

So we need prayer to find why the sudden change in appitite for Jaden and what we can do to fix the problem. His weight is down which is bad but he seems fully hydrated and is having good pee and poo diapers (in our new homemade diapers from Steph Theis's "Pampered Cheeks" business (http://www.pamperedcheeks.com)...

I will let you know of any new news as it comes. Thanks for your prayers.

Gonzalez's Heart

Jaden had a busy week. We went to see the cardiologist on Monday. Jaden had an echo, chest x-ray and lab work done. Dr. Martin said he was looking very well and his echo looked very good as well. Jaden was kicking his legs so much that they had a hard time seeing one of his shunts. They were able to see that there seemed to be no leaking so they were fine with the results. They were pleased over all.

He then had his 4 month check with his piediatrician on Thursday. Dr. Hu was very pleased with how alert he is and how well he controls his body movements. She also said he looked wonderful. He had to get his immunizations. Last time he did fine with them. This time though the nurses had to remind him to breath because he was so upset. He was fussing all night last night and has had a slight fever. He was not to pleased getting them I guess.

We will all have to get flu shots this year and he will also get a siniges shot. This is for RSV. They take antibodies from a large group of people and combine it to help bodies adapt better. These are very expensive shots because of the complexity of them.

We have a lite weekend planned. Just staying around the house to catch up on some well needed rest for all.

Love to you all, Steph

Overall Jaden is doing really well. He has been sneezing and coughing for a little while so we will have that checked out at his next appointment. We were supposed to go to the cities this week for his swallow study. But the scheduling people down there messed up so we have to reschedule. This is the appointment which will determine if he is ready to nurse yet or not. I feel he is not going to be ready, but I am praying that my instincts are wrong (which they usually aren't.)

He meets with his Cardiologist next week and we have an echo, chest x-ray and lab work done to see how he is growing.

We will be going down to the cities on Saturday to help dad and Mattie move into their new condo. Kelly will be watching the kids for us while we help.

Hope you all have a great weekend.

Love, Steph

Jaden's Journey

Enjoy these photos of Jaden's first few weeks of life. There are some pictures that may be hard to look at. Click on the picture above to re-direct you to the video.

I created a Slide Show! Check it out!

I created a Slide Show! Check it out!

I created a Slide Show! Check it out!

Thank you to everyone for making Jaden's "Celebration of Life" party such a great time. We had just over 100 people stop by to show their support. Also, thank you to all who were not able to make it but kept us all in their thoughts and prayers through out the day.

Of course this was one of the hottest days of the summer but we had a large canopy and a nice breeze so it did not feel so bad. We had 2 different music groups there. We had The Rena Haus band http://www.renahaus.com . They were wonderful and played a great variety of music from blues to folk to country. We also had a quartet called "After Midnight" http://www.myspace.com/aftermidnightquartet . In this quartet was Steve, Jaden's primary nurse whom our family has become very close with. They were absolutely wonderful and put us all in complete relaxation. Thank you to both of these wonderful groups.

As well as having live music, we also had a dunk tank which everyone loved and it was a nice way to cool off in the heat. Plus, Party Time Inflatables also brought a huge octapus bouncer to jump in http://www.partytimeinflatablegames.com.

It was a completely perfect day. Thanks again to all for your support wether in person or in mind. Here are pictures from the party. Hold your cursor over the picture to read the caption.

Jaden is doing wonderful and now weights 11lbs. 2oz. He is truely a "superstar". Yeah for Jaden.

Love to you all, Steph and family