Tuesday, September 26, 2006

"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

Tuesday, September 19, 2006

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

Wednesday, September 13, 2006

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.
this is an audio post - click to play

Sunday, September 10, 2006

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

Tuesday, September 05, 2006

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