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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.

Monday, April 30, 2007

Mom Rocks

I have noticed a trend, and that is that Brynn's Posts are significantly longer than mine. She is truly the one that is amazing, and I just coast along in her footsteps. I had to go back to work today, so Brynn stayed at the hospital last night, and I came home. What a feeling to be alone in our home, with Ryleigh in Orem, Brynn and Alex at the hospital, I really missed them all. So to let you know of Alex he did well through his surgery yesterday, he only had to be on the bypass machine for 34 minutes, and seemed to come off it well. We saw him about an hour later, and noticed an immediate difference, his hands and feet were not at all blue any more but were now pink and warm, and the coloring in his whole body seemed to be better. His saturation levels are a lot better, and it seems for now to be a success!!!!!!!!!!!!!!!!!!!!!!!! We know at any time things can change, but are so grateful that all went well through this procedure. We have felt so close to him and closer as a family through this whole event, and I really noticed today at work away from my family that I long to spend time with them. So in keeping with tradition I will finish, don't want ruin my reputation of being short with words. One more thing we love the comments, but have no idea who (J.) is, would you please reveal yourself!!!!!!!!!!!Thanks Jeff

Saturday, April 28, 2007

Challenges!


We have had a hard couple of days. Sorry that it has taken so long to update with the news. Well, Alex couldn't raise his saturation levels, they have been watching him very closely but they finally decided to do a bedside exploration. This was scary enough. They we able to determine that his lungs had started to become unswollen faster than his heart. His sternum was beginning to collapse on his pulmonary artery on the right side; and on the new piece they added to his heart called the Sano, on the left. So they put a strut into his chest that held open his sternum. Alex made little progress. They needed to find out why at this point he still wasn't improving. So yesterday they ordered a cardiac cathiterization. This went through his groin, up through his chest and into his heart where they injected dye to see what blood flow looked like and what the structure and function of his specific heart was. At around 3:30pm it was disappointing to find out that his new Sano had a pinched end and Alex would need yet another surgery(Yes, that is 2 surgeries in a matter of 4 days.) We were scheduled to go right down and Jeff rushed to find someone who would help him give Alex a name and a blessing. Which was beautiful. Things around here tend to change by the minute because a little while later they needed to do a more critical baby and we waited to find out when his surgery would be. At about 9:15 pm Dr. Hawkins came in a asked Jeff and I what we would like to do (if they should do the surgery that night or if they should wait until the morning). We both told him that he should make the call. He decided this morning would be best. Jeff and I went home last night, to try and sleep. We must have been exhausted because as soon as we hit the pillows we were snoozing. We got up early, this morning to spend time with him before. Alex is in surgery right now. What they would like to accomplish during this surgery is similar to the last but there are some changes. For one thing, they do not need to repair his aortic arch; this was accomplished in the first surgery and looks very good. They do not need to stop his heart. They put him on bypass but it is mostly precautionary. They will be doing a repair on his Sano. They will either cut off the defective portion and reattach it to his heart, or they will totally remove it and place a new one. Jeff and I both agree, we had so much time to prepare for the first surgery and felt like we new what was in store, but this part has been so hard. We can't imagine what it would be like to be undiagnosed. We will try and update with more info as we find out things. However, it might be crazy. We just hope and pray for our little man that he will make through and recover well.

Thursday, April 26, 2007

The critical hours



We have gone through most of the critical hours now. Just one more day to have that label. Alex is just trying to remain stable today. They don't want to do anything too fast because that can be bad too. He has done some great baby step things today. He is down to 60% oxygen from the ventilator, he is draining well and been tolerating the meds well. He has stayed above the use of the pacemaker and his sats are looking pretty good for a mixer. I know that sounds pretty weird to most of you, but some will get it. I got to give him his first sponge bath. He loved it!!!! He must be like the rest of us and love water. I even rubbed his hair into a mini mohawk. This is a picture of him in his room with all the attachments. Ry had a great day with grandma Homer and is home with us tonight. It is really nice having her with us, so I can snuggle her. She saw me pump for the first time and wanted to try it out. Jeff and I are getting rest and really doing pretty good for just having a baby. Our Ob got strep and wasn't able to deliver Alex, but can I just say, he has been amazing. He called almost everyday to check on us and he has been great. Thank you for all that you have been doing for us. We feel the prayers and know that Alex is doing so well because of the love of all of you. So thanks.

Wednesday, April 25, 2007

Post from the mommy

What a huge day it has been for our whole family. It feels a little like being dragged behind a horse. Grandma and Papa Clawson took Ryleigh to the Zoo and she had a blast looking at all the animals. Jeff and I spent most of the day in the waiting room. Now we are just watching over our little boy. The hardest part for me is feeling torn between our two beautiful children. At least I know she is in good hands with the grandma's and grandpa's. Alex is very different looking after surgery. He is swollen and now has so many things hooked up to him, but he is stable and doing good. Dr. Hawkins had to come up and cut into his tape and suction some blood that had pooled. It wasn't continually bleeding it just wasn't draining. Everything else seems to be going good this hour. It changes hourly and some things are very hard to understand so I won't go into too many details. You can see right into his open chest at his heart pumping away. He is amazing. I feel very close to heaven right now. This is an amazing journey, we are so blessed to be able to see and feel all of these things. You should be envious of us.....

Out of Surgery

Just a quick note to say that Alex is out of surgery. He is now back in the PICU. We haven't seen him yet, but should be able to shortly. The surgeon said all went well, but he also said we are not out of the woods yet, meaning that the recovery is probably the most critical part of all this. Thank you all for your love and prayers for our family. We will continue to let you know how Alex is recovering!

Tuesday, April 24, 2007

Everybody Loves Me






Alex has been so blessed to have so many visitors from those that just love him. We are so greatful for the support everyone has been to us. Alex is doing wonderful. We found out that his surgery will be tommorow @ 8:00 am. We have tried to spend as much time with him as possible. I can't think of anything greater than sitting with him and holding him. We also have really loved having Ryleigh coming to visit her little brother. She had an opportunity yesterday to get a hospital doll that she could color a face on, put bandaids on, put medicine into an IV in the dolls arm, and dress it in a hospital gown. We are so thankful for the programs and people here at the hospital that are so wonderful with Alex but as equally wonderful with the rest of the family. The last 2 nights Brynn and I have gone home to sleep, it has been so wierd to have 2 children now and not have either one at home with us. Thank you so much Grandma & Grandpa's for helping with Ryleigh! We are here all day to be with our little one, after surgery we will not be able to hold him for a few weeks, so we are trying to get our fix now. So we will wait until tomorrow to update this and hope and pray for a successful surgery.


Sunday, April 22, 2007

New today!

We had really great day. This morning Jeff and I went up to see Alex. He had a great night and we did too. Except for the fact I had to get up a few times to pump. I am loving that by the way. (can you see the sarcastic look on my face) then we went back to the room for lunch. We got some advice to order lots from the menu, and we even ordered two big granny b pink frosting cookies. (Thanks Kathy and Rob) We loved staying at the U. It was a different experience because I wasn't on a normal postpartum recovery floor. There were a mix of different patients on the same floor. Then this afternoon I was released and we went home for showers. We came back this afternoon. He is still doing very well. He has the most adorable bear, that has a pulse sound, like he is still in the womb that he totally loves and makes him feel really comfortable. Thanks for thinking of us Matthis's. He is just so snugly. We got to hold him again today. Every time I feel soooooo lucky. We are just waiting now for the nurses to switch out, then I am going back in. We will know more about his surgery tomorrow, nothing is for sure yet. We will keep you posted.

Saturday, April 21, 2007

Big Day!

Well we have had a big day, I feel really good. I think I am doing even better than when I had Ry. I didn't even rip or need a stitch. We went up to see Alex this morning, shortly after he got his pic line in. He is doing great. We had the family up for a special blessing and to see him. The hospital is still a little confusing for me to figure out, good thing Jeff can figure things out. We are just relaxing now..... Lotsa loves

Latest Pictures






It's A Boy






Yes our little guy is finally here. He was born at 1:12 am, 7 pounds 5 ounces, 20 1/2" long. Can't wait until he is 6'4" like his dad!!! The Labor part was really the pits, but the delivery was fairly easy, just like it was with Ryleigh. At 12:45 the baby's heart rate started doing crazy things, so the nurse decided to check Brynn, only to find her ready to start pushing. She pushed through one contraction, and about three pushes later Alex was here! They hurried and suctioned his nose, he let out some crys, then was rushed through the window into the NICU. At about 4:00 the life flight team brought him into our room in a huge isolate, we got to be with him for a couple minutes then I got to go with them across to Primarys, where he is now hooked up to all sort of machines. He is doing pretty good, and is breathing on his own for the most part. We will probably go visit him again in a few hours, hopefully we can get some sleep? Thanks to all of you for your prayers, we have made it through a lot so far.

Friday, April 20, 2007

& Still Waiting

Well they broke Bryn's Water at about
5:30, and said she was at 3+. They are
really busy here at the hospital tonight
so we don't see much of the doctors,
but are hoping to be checked again
any minute. We had a small scare
after they broke her water she started
to feel nauseous and they lost Alex's
heart rate for a bit, they put in an
internal monitor to check him, and
all is well. We are sure anxious to get
him here.



still sitting

we are still sitting here.... waiting for something to happen. dilated to a 2. I just got on the pit..... hope you love the play by play.

Hopefully Today


Hello Everyone, I am sitting at Brynns bedside, waiting for "things to happen", nothing really has happened yet, they are giving her some medicine to help her cervix soften. So we will keep you posted. They say that the medicine will will sit for 4 Hours and they probably won't do much until after that, so it looks like we will have a pretty uneventful morning.

Wednesday, April 18, 2007

Almost here!

With not much time to go I am starting to feel anxious. I hope with all my heart that things will go as good as possible...

Saturday, April 14, 2007

Last dr. visit

We went to our last Ob appointment yesterday. I haven't done any changing. I was a little sad because I don't want the induction to be hard. But......I will do what ever it takes. So unless they want to get me on the pit. I will go in at 7:30 am on Fri the 20Th. If they do want to give me a little something to get me going, I will go in Thurs. night. This time next week we will have a baby. The order for everything is as follows. Shortly after Alex is born and if he is stable enough, we will get to spend a few minutes with him between 5-20. Then he will go on the prostiglandin. He will be in the NICU at the U for as little as a few hours or up to 24. Then the life flight team comes down to get him ready to transport to Primaries. If there is lots of room at the PICU he will go there if not he will go to the NICU until room is available. He will have a series of test to check to see if there are any other abnormalities and to see if he got any infections or bacteria from birth. If everything is looking good then his surgery will be scheduled for sometime that next week. And we will go from there.

Sunday, April 8, 2007

Old Paint





I love Gardner Village for the historic sight and for all of the neat little places to take pictures. Ry loves it because we go to the hostess store and buy a bag of bird food (about five loaves of 3 day old bread) for a buck and take it to feed the ducks and coy fish in the pond. So these little pictures are of her Easter dress. Love the boots Jen!!!!


We also want to spend as much time having fun with her as possible. So we went to the Bees baseball game on Friday. We had a great time, Eating roasted peanuts, riding the free train and playing in the bounce houses. Oh! and watching the game.... I didn't last through the whole game, something about being large, we did have fun.

Thursday, April 5, 2007

The light at the end...

Well, We finally got our date. I started laboring last night. The contractions were coming about 5-8 min. So I had Jeff drive me to Cottonwood to be checked. I was just about to turn around and leave when they told be they would have to take me by ambulance to the U if they couldn't stop the contractions. With a little morphine I was feeling very good. And the contractions stopped. Today I have been really tired because of the drugs, but glad that it is stopped for now. So I bet your wondering..... April 20th. Two weeks from tomorrow. I am dilated 1 1/2 centimeters and 40% effaced. So We hope to make it until then.. Anyway.. Our ward is doing a fast this Sunday and we feel so blessed and loved. Thank you everyone who have thought of us, prayed for us, and taken our names to the temple. We are indebted.....

Monday, April 2, 2007

Hoppy Easter!!!




We all wanted to wish you a Happy Easter. Ry, Arlington (her cousin), and Uncle Marc!!!! I think Ryleigh was about Arli's age when we took this picture of her. Crazy that they kind of look alike.
I also wanted to say thanks to all my clients out there. I am sorry if we didn't get you in before I was done. Today is the last day I did appointments. What will Ry do with a full time mommy. She won't have to entertain herself while I cut hair. It is quite the sight to see me trying to maneuver around this large belly. I keep bumping into everyone with it. Plus standing for long, wears me right out. It will be nice to have a break. I will miss seeing everyone. Feel free to write a comment or if you would like to check up on us my e-mail address is homerz218@yahoo.com . If you call you most likely will get the answering machine. I'll try to get back soon.... I of course will keep things as current as possible on the Blog...