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Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Saturday, June 30, 2007

Preschool Help!

This was the best way to get such helpful info on my preschool dilemma. I think what I will do is not a formal preschool but a home-school type. Then because I fear she is spending so much time with me and in front of the t.v. I will do a little dance or tumbling class.. Thanks for the ideas....

Friday, June 29, 2007

Not much to report!

I know this may not seem like a big deal to the rest of you out there. But, Jeff and I feel it a break through. Alex slept in his bed last night. Well for most of the night... Yeah!!!!!!!

Monday, June 25, 2007

Just keep on keep'in on

Alex Snoozen in my arms
This is Ry in her favorite hat!~~!
So it has been a crazy couple of weeks getting adjusted to the little man and trying to get a feel for how our lives have changed. We are getting more sleep and it has been nice. He loves to sleep in our bed. That makes both of our children. He is just gaining weight and is up to 9lbs 8 oz. as of last Friday. We took him to church on Sunday. I went late and left early. It was nice to be there again. Jeff got released from the Young Men's and he is sad to have that change but I feel like he pours everything into his callings and when he couldn't because I needed him so much, he beat himself up about it. It was nice to see him take a deep breath of relief. Like I said before we have seen the specialist about Alex's development he is finally smiling a little if we coax him and he can hold his head up for short periods of time, we also got some ideas about how to get him strong before the next surgery. Speaking of that. We still don't have a date pinned for it. However, we go to see Dr. Su again on July 16Th and he will tell us more about it then. They do want him to be at least 11 lbs and eating well. They also have been watching his oxygen because that is another factor that will determine when his surgery will be. He is doing great with his feeds and such and we are just trying to keep him safe from his big sister. THE STORY: So all the parents know that if you have to use the restroom you better hold it or let the baby cry and take your toddler with you. I needed to remember that today. I went in for what I thought was two seconds. Alex had just fallen to sleep and I lay him down on a blanket on the floor. I ran in and he started to cry. Well, Ry calls to me that he needs me and I tell her I know and then I hear what I think to be her struggling to lift him. I yell that she better not pick him up... TOO LATE. She promptly dropped him and started to cry. I ran to his aid, he soothed easily and I begin to tell her that she can't pick him up. He couldn't have fallen more than 10 to twelve inches and on carpet but I still called the pediatrician and my mom. He is fine, I guess that is what big sisters are for. Other than that she is a delight and I feel guilty that she used to do so many things and go so many places. I just have to remember that this is all short term and he will be well soon. We are so blessed to have had him during this time of year. I think I would go crazy staying inside all the time... Hey I also wanted to through the idea of preschool out there. I think Ry would do well and I needed some ideas. Or if anyone has ever done Joy school I have questions about that too.

Wednesday, June 20, 2007

hold me!!!!!!!

Alex Love love loves to be held.. Jeff and I take turns holding him while we sleep at night. He sure doesn't let us get much done. We had a pretty busy week last week with his immunizations and his cardio appt. and home health. This week hasn't been too different with an evaluation for his development. It is crazy and exhausting. But, this seems to be the new normal and I am not sure when we will get sleep again. We love having him home
This is Ry thinking she is the Dr.
She can't keep her lips off him.. She loves giving him kisses and telling me he needs me.

Thursday, June 14, 2007

starting slow

I just wanted all those clients out there to know that I am starting hair again really slow. I will be doing it one or two nights a week and on Saturday..... So if you need a haircut or color just give me a call and we can set up an appointment, Thanks everyone.... Brynn

Tuesday, June 12, 2007

Busy

I feel as though we have gone none stop since our little buddy came home. He is a handful of work as is his little sister. We are happy to do it all. Right now my friend Chelsea is over holding him so I could have a shower and write this really quick. He went to his pediatrician on Friday and everything checked out well, then yesterday he went to his cardo appt. with Dr. Sue. He said Alex is looking great and on track for his next surgery. They look for a couple of different things. The babies weight and how healthy they are. They also need to do a Cardio Cath that will tell us if he is a candidate for the procedure. They also want us to watch his color if he tend to be really blue they would consider doing the surgery very soon. He is eating well from a bottle. The Dr. said we might be able to take out his feeding tube in a week, but he needs to be taking everything including meds PO. He is up to 8.4 lbs and growing more and more. He goes for his immunizations tomorrow. Ry seems to think having her baby home is pretty cool, she tries to help with everything and is really being a good girl.... Thanks again for all the prayers. He is sleeping a little better, so we are too.

Friday, June 8, 2007

second round

Alex came home yesterday. Needless to say Jeff and I didn't get much sleep. We are glad he is doing well. He also went to his pediatrician today and she said he looks great. These posts might be a little short considering how little time we have to do this but... at least you know how things are progressing.

Tuesday, June 5, 2007

Milk mustache

Do you hear the trumpets announcing????Alex passed his swallow study today. It was darling to see him strapped into an upright chair and acutally watch the fluids go down. He had a white mustache after the study.... He is also doing well on good ol' enfimil.... These are huge steps to him getting better. He is tolorating his feed of formula and I actually placed his ng tube today. It was really scary but I managed to do it without totally ticking him off, It will also interest you to know that you can use KY gelly for a plethera of things....Like placing the NG. We are making leaps and bounds this go around and the dr.'s are impressed. I finally feel like we have a little happy baby instead of a sick little boy. We aren't quite sure of the time frame for home yet... But soon... Brynn

Sunday, June 3, 2007

Hurty bum

So Alex's bum is soooo raw. Luckily we have had the best nurses today and tonight. They have done everything to make him and us feel good. We love the nurses here. He did end up moving to the third floor this morning. We even found out that he loves the nuk binkies. The nurse loaded us up on a few. It was nice to have a visit with the Patton's today. Knowing these other heart families makes such a difference because, we are able to ask questions that the Dr. can't help with. Ry is staying in Orem and loving it. We aren't sure when we get to go home, but I am a little scared. Everyone tells me that is normal. Well I will try and update as we get more info.

Saturday, June 2, 2007

Good Times-Hard Times

I know it has been a long time since Dad has written on the blog, thanks to Brynn you all can stay caught on our situation. It is interesting to hear everyone say how strong we as parents are, but we have just come to deal with the situations that we are faced with because there is no way around it. I must admit that on Wed. when we had to bring him back to the hospital I thought I was going to loose it. Even with all the things Alex has gone through nothing has been as hard for me as seeing him on a full size bed in the ER with about 15 people around him trying to get him stable. We were so relieved to see one of the doctors from the PICU come into the room, and we knew that he was going to be OK. It makes me a little jealous to see parents at the store or around with newborns and it has really made us appreciate Ryleigh's good health and also the good care that Alex is getting. We are so happy to have these two sweet kids and their special place in our family. I am so grateful for a wonderful wife who helps us all to keep it together during this time in our lives. We love our family and all those who have helped us during this time, especially for grandparents and aunts and uncles who are so willing to watch Ry at any time. We love you all and thanks again for all your prayers. As for Alex he is doing pretty well today. Just relaxing and slowly getting better. He is totally off oxygen which is huge, he hasn't needed any since yesterday afternoon. He gets a little agitated when he has a BM but a little Morphine or Lortab seems to settle him down. We keep praying for him to get better so he can once again come home with us. Jeff

Friday, June 1, 2007

Found it!

We found out what caused Alex to become so sick. It is an infection called clostridium difficile or c-diff. It is an infection of the colon and often the normal gut flora get eradicated by using an antibiotic, which Alex was on for his bacilia cereous. The c-diff is present in your colon and when the flora is gone the c-diff colonizes and causes really bad gastrointestinal pains and diarrhea. Well Alex had gone potty soooooo much that he was dehydrated and that made him very sick. So he has been on the new antibiotics to kill the bacteria that all started with an antibiotic. Yeah, crazy. He is doing better and I can tell he is, because he can finally rest more comfortably. We just need to keep an eye out for the rest of us so we don't get it because it is contagious. Any way I will be glad when they move us to the floor which they have talked about happening tomorrow.....