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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.

Tuesday, February 27, 2007

Band-Aids fix everything!


We just wanted to try and add photos. I am surprised how easy it is. Ry loves band-aids.. They really do fix everything.

Saturday, February 24, 2007

Remember when I told you......

I thought I was in the clear, I thought since everything else was kind of "not right" I wouldn't have anything else to worry about. I failed my Glucose test horribly. Your normal sugar levels are supposed to be 120. Mine were 169... You should never ever be over 120 if everything is working correctly. I was bugged. I begged my sweet friend, Jen, to watch Ry for the dreaded 4; that turned into 5 1/2 hour, in-office test. After sitting there so long and getting poked 4-ish times (two times my veins rolled) I was done. I haven't got the results back yet... But it sure would explain why I feel like garbage. If I don't have gestational diabetes then I am a lot more tired and uncomfortable than I remember with Ry. I'll have to let you know what the results are.

Tuesday, February 20, 2007

Well, today was the big day. We went to our second visit at Primary children's. I have had such mixed emotions during this time. Mostly not knowing what to anticipate, plus trying to come to some kind of conclusion with Jeff on what we should do. I received a blessing from Jeff and Nate England(good family friend) last night and it was probably the only reason I got some sleep. We dropped Ry off at papa's house, our appointment was at 3:00 pm. They have you check in 1/2 hour early and do any paper work, and we were soon called into the ultrasound. They have this tiny room to lay in where they dim the lights and take so many pictures of the baby. It is so cool how they can see things so clearly. In my mind I wasn't praying that everything would somehow be miraculously better, all I wanted and was praying for was that they would be able to see things clearly. LoriAnn is the gal that always does the Echo and is very nice. She spent a good 35 minutes looking. Dr. Su was with another HLHS family and needed a little more time. So we spent 30 minutes waiting for him. It was totally fine. We talked and played games on our phone/PDA. LoriAnn even came in with chips and water for us. Then Dr. Su came in and looked things over again. We always go into this very nicely decorated room to talk. It has a comfy couch and is overall just a nice room. Dr. Su discussed all the things with us then. And.... Alex's condition hasn't really changed all that much. There are still things going on that are very wrong. But.... What Dr.Su did say, was that he was hoping a few things did not happen that didn't. He was concerned that the LV would work like a sack, holding on to stagnant blood or other fluids. This would increase the size of the LV and put pressure on his Right Ventricle. His RV needs to be working the very best it can, because the left isn't. SO it was good news to hear that the LV is still the same size and shape it was before and not doing any harm to the right side. This is really all that we "saw". Everything else remains as it was. We also met with the coordinator, Kelly Kelso, she acts as a liaison for us and the hospital. She took us on tour of the hospital. Now we will not be walking around, not knowing were to go. She took us up to the PICU, and we saw the most beautiful little boy. They show you what a heart patient looks like. He must have had 15 machines attached to him. They had closed his chest just yesterday. It was amazing. I had done very good up until then. But, as soon as I saw this little boy I started to cry. The nurse told us, when his mommy came to visit they wanted her to try really hard to not talk to him because his heart pressure would sky rocket, at 10 days old this little boy could recognize his mommy's voice and get so excited. We spent about 31/2 hours there today... After that we came home and went to mutual. So....... We are doing well, tired from the day, but really well. We go to the next appointment in 4 weeks. We will meet the surgeons then, take a tour of the U, have another Echo and hopefully be one our way to meeting Alex. Tomorrow I will be 30 weeks... just a few more to go.... Love you all, thanks for your prayers and support.

Friday, February 16, 2007

Sugar!!!!

We went to the Obgyn today, just another routine check-up. I did the glucose testing. It is always an adventure for those of us who LIKE sugar, to avoid it for a day.(Am I right Deb?) And because we try to cater to Jeff's work, and schedule appointments as late as possible so he can work as late as possible, it felt like ALL day (those chocolates were calling my name). The doctor is amazed, Alex seems to even be measuring large. We listened to this incredibly strong whoosh whoosh and you would think we were all being fooled by how good his heart sounds. My health looks good, the glucose test results should come back next week. Other than that... Everything is fine.
So I have a question. We have taken Ryleigh with us to every appointment because I feel like this is such a special time for our family that she shouldn't have to miss hearing the heart beat, and visiting with the doctors. She is just as much a part of this as me or Jeff. My question is; am I wrong in bringing her? Should we find a sitter for her? Will this all be traumatic for her? Do you think she cares right now?
I also wanted to comment. I guess NOT comment. I have learned over a series of events, including infertility, miscarriage, and now this.. that I will never judge another person on what their choices for their family should be. Whether it is to have kids, to not, to have more, to do anything that involves any choices that are not rightfully mine. It's not fair. I will just be happy that it isn't my choice. I will be glad for them and wish them the best. I added this because I got the very well meaning, older lady, from the old ward at the grocery store say "well, your young, you can still have as many babies as you want. Or maybe you should just be happy with the one you have."- Don't get me wrong. I tell Heavenly Father daily how grateful I am for Ry, but Alex is still here and I am honestly really scared about going back on Chlomid. If that is what Jeff and I prayerfully decide to do. So although this comment may scare you. Remember, I know where her heart was, and I know that she was trying to be comforting... But I will not comment.
Well I will keep updating as we are.

Thursday, February 15, 2007

talked!

I talked to the lady (Katrina) who establishes our insurance today, what a crazy job. She told me about a 43 year old mommy who is delivering her HLHS baby today. The family decided to do in home comfort care. This is one of our four options. I feel like is so permanent to take the baby home. In case I haven't explained all of our options I will re-write them and our feeling thus far. 1- Termination of the pregnancy. Obviously we are not choosing this one. 2-In home hospice comfort care. I would deliver at what ever hospital and take Alex home to keep him comfortable until he passed away. Like I said, we would really have a hard time with this. 3-heart transplant. We would need to move to deliver in California or Colorado be there until a neonatal heart is available and then wait for recovery. This couldn't work for us because I need to be closer to family. And the chances of getting a heart are really next to nothing. 4- the surgeries. Now there are no grantees that the surgeries will work. He will be in a lot of pain. We just still don't know much. Anyway.... Katrina, was very nice. She has been working with these types of situations for a long time. There are a lot of people involved in making this better.. thanks.

Tuesday, February 13, 2007

CHD Week

This week is now officially CHD awareness week. Governor Huntsman signed the paper work just in time last week. It is exciting because it means more people will be aware of the diseases that effect so many families. I am amazed at how new the research is. They have only been doing the Norwood since the 70's which means all survivors are in their 30s. We hope they live as long as any other person. Oh, the Norwood is the official name of the three surgeries Alex will need. To get involved, we asked our youth group to make valentine kits for the kids at Primaries. I asked if they could come and help the kids make them. With the hippa rules, any little cold could make the kids sicker. We understand. The other thing was they asked we don't bring any treats, most of the kids have dietary restrictions and it is really hard to tell them no. They told me that some kids are so desperate for something that they will eat the colored macaroni off art.. it broke my heart...no treats, got it... So the doctors and nurses will get the cookies. Hope you all have a fantastic Valentines Day.... And remember when you see hearts this week think of baby Alex and the other kids who are affected by CHD....

Thursday, February 8, 2007

A little talk

My little Ryleigh is sleeping.... I had a few minutes to myself before something else distracts me... I wanted to write about this talk I read. I received it from a dear lady, client, and friend. Linda- she's in the Mo-Tab with Diane. Anyway, after reading this I had such great peace that I wanted to share it, or parts... "A Heavenly Manifestation Given to Heber Q. Hale; President of the Boise stake." - I am going to paraphrase until it gets to my favorite part. Basically he was staying at a friends home, he is usually a very light sleeper and was not disturbed in the slightest. He remembers passing into the world of spirits. Although they did not call it death they called it something like new birth. He then says how similar the spirit and mortality world are. He was shone many things but my very favorite part is when he said "My mind was quite contented on the point that mothers will again receive into their arms their children who died in infancy and will be fully satisfied; but the fact remains that the entrance into the world of spirits is not and inhibition of growth, but the greatest opportunity for development. Babies are adult spirits in infant bodies." he goes on and describes more of the things he sees and right as he is leaving he sees women preparing apparel. And he knows it is in preparation of someone to come. He then was admonished "If you knew the joy and the glorious mission that awaits him here, you would not ask to have him longer detained upon the earth. The will of the Lord can be done on earth as it is in Heaven only when we resign completely to His will and let His will be done in and through us. On account of selfishness of men and the assertion of the personal will against the will of God, many persons who might otherwise have been taken in innocence and peace have been permitted to live and have passed a life of suffering and misery, or debauchery and crime, and have lived to their own peril. Man and women and children are often called to missions of great importance on the other side, and some respond gladly while other refuse to go and their loved ones will not give them up. Also many die because they have not the faith to be healed. Other yet, live long and pass out of the world of mortals without and special manifestation or action of the Divine Will. When a man(baby) is stricken ill, the question of prime is not, " is he going to live or die?" What matters is weather he live or die so long as the will of the Father is done. Surely we (I) can trust him (Alex)with God!" And lastly he says, " To a righteous person, birth into the world of spirit is a glorious privilege and blessing. The greatest in the family of the Father have not usually been permitted to tarry longer in the flesh than to perform a certain mission. They are called to the world of spirit where the field is greater and workers are fewer. This earthly mission may, therefor, be long or short, as the Father wills.

You can probably see why this was so special to me. It helped so much. So we have had a lot more normal days and feel really good about everything... If you want to read the whole thing It is all amazing.

Wednesday, February 7, 2007

Down to the nitty-gritty

Monday, for family home evening, we went to "Build a Bear" and built Alex a bear. It is darling with sweet little patches all over. The best patch is one in the shape of a heart over the heart. We hope he loves it. I have never been there before. It was really neat to let Ryleigh choose which of the bears she likes, help stuff him, wash and brush him(her ultimate fave part) and give him a name(Jordan, daddy picked that one out).She loved the whole thing. When we got home she ran right to the nursery and we put him in the crib. The next morning she checked to see of he was still there for baby Alex. She loves the thought of being a big sister.

Well, I gave the time line of events, so now I thought I would share the nitty-gritty of the dr. apt. at primaries with all the technical jargon. If you don't understand, it is really okay... of you do, and it helps you to understand our sweet baby better... then good. Also, there are a couple of sites with pictures that really helped me if you google hypoplastic left heart syndrome (HLHS).

The first thing the doctor explained to us was how a normal fetal heart works. This happens by receiving blood, nutrients and oxygen from the placenta it enters the heart via the inferior vena cave and into the right atrium. Within the right atrium there is a special fetal flap called the PFO.(we'll get back to that) then it goes into the ventricle and through he pulmonary valve and out into the lungs. From the lungs it goes to into the left atrium down to the left ventricle through the aortic valve and is then pumped to the body. Also in a fetus there is another fetal flap called the PDA(patent ductus arteriosus)this is a bypass from the pulmonary valve straight to the body, bypassing the lungs and the left side of the heart. You still have blood flow there, however fetus's live in a wet environment so they don't need all of that blood to go to their lungs. So...... Then he explained that in Alex's case he has 1. a dilated left ventricle 2. poor function of the LV 3. small mitral valve 4. Aortic valve is atretic 5. (Back to the PFO) it usually opens one way like a door, in his case it flutters, allowing blood to go back and forth from the right and left atriums, which is okay because it is taking pressure off his lungs 6. Back flow of blood through the aorta. So that is why this is so complex.. There is not one condition to solve there are many. So crazy. Plus some of this could change because he is still growing so much. Which is why he won't be considered HLHS until after he is born.

Clear as MUD? great! Post any questions....

We don't go to our next apt at primaries until the 20th of Feb... So we will know more then.

Sunday, February 4, 2007

From the Start

Well I said I would start a blog and here goes nothing. I think that because this is a blog for Alex it will be easy to let you know what he is or isn't doing and just feelings that we have been having and so on. I wanted to start from the beginning and write a sort of time line so that you know what we know and we are as clear as possible so far. SoIguess I will start with that...

August 25th- Home pregnancy test is positive.... baby on the way

September 22nd- First doctor appointment with Dr. Jarrett ( heard heart beat)

September 29th- Second doctor appointment with Dr. Jarrett asking for referrals because our insurance was changing.

November 2nd- First doctor appointment with Dr. Larkin

November 30th- Doctor appointment- Beg to find out sex of baby before Christmas....It's a Boy!!! Ultrasound tech has some concerns about his heart, but not sure.

December 26th- Official ultrasound-Every part of baby looks healthy and perfect except left ventricle. Dr. Larkin refers to Primairy Children's...

January 9th- Aunt Averee's birthday- Echocardioghram at Primary Children's reveals how serious Alex's conditions are.

January 26th- OB appointment- everything looks good- measure normal- heard heart beat....

That is it so far....

I will try and update as I learn more or if I think of something.... Thanks again to everyone.