Sometimes life's okay

Were to even begin? I think that saying, "We're Okay" is a good start.

I never knew I could experience such happiness and sadness in a single situation. Brig's funeral was beautiful. It was perfect, just like him. I loved that Aubree was climbing up and down Joe and I while we were giving our talks, and I loved that Ryah tried to grab the microphone while the kids were singing there song. I've come to terms that life is funny, and you really need to enjoy it and find purpose in every journey, even the hard ones, but especially the easy ones.
It's hard to accept that life moves forward. I'm really glad that it does, it's just hard. I feel lucky to know I will eventually get to raise him, but for the time being I get a little thrown off still with no baby in hand. You have to let life move forward and find purpose and meaning... to find happiness. I feel we may have lost Brig for the time being, but have gained so much more in return and for that I am thankful.There are things that I have felt and learned that I never would have comprehended before. Brigham taught me very much with his short life here on earth. I know these newly gained experiences have already helped me be a better person and will continue to help me to remember my purpose in life. So with that I say thank you Brig.

Thank you everyone who came, and who wished that they could have come. If you missed his graveside, the picture above is all the kids letting go of their balloons for Brig. Sweet Klaire gave her balloon a kiss and said that she was "sending" it up to Brigham. We have amazing family and friends and I really can't thank everyone enough. I love you all.

Our sweet angel Brigham

Brigham Paul Denhalter

Born to Joe and Chelsea Denhalter on October 26, 2011 at 2:18 pm

Our sweet little lion man passed away November 16, 2011 at 2:05 am

Words can't describe the sweet tender moments we were able to spend with Brigham. I feel so blessed that I was able to have him for three wonderful weeks. I look forward to be reunited with him when the time comes!

I love you Brigham, thank you for teaching me so much in the three weeks you were here. You may have had a weak body but I know you are a mighty and valiant spirit. I feel so lucky to be your momma. I can't wait for the day when I get to hold you in my arms again sweet son! Until we meet again.

Saturday at the pioneer park chapel we will hold a viewing from 9 to 10 and then briefly Joe and I will speak and the we will head over to the cemetery. All who have been touched by Brig's legacy are invited to come. Thank you everyone for your support, love, meals, cleaning, and so much more. We love you.

my brave little lion

So here is a picture of Brigham a week after his first open heart surgery. He was so wide awake and alert. This little boy is so brave. I respect in so many different ways.

The lion represents our strong little Brig. Each of my girls have one to remember Brig while we are in the hospital and Brig always has one either in his bed or right by his bedside. They use the lion to prop up lines, tubes etc. whatever needs to be held up. The lion describes Brig perfectly... He is so tough and such a little fighter with such a big will power. I love my little lion boy so much.

 updates on how the surgery went: They did find a couple of small insignificant leaks, but nothing major where they could see the fluid actually draining out like they were hoping. They did do the pleuradisis while they were in there.(irritated the lungs for swelling to minimize leakage). That seemed to help the chest tube drainage, but he is now having a very difficult time with damaged lungs. His lungs were already bad to begin with, so now he's have a hard time recovering from it. Last night was a really rocky night. They have kept a close eye on him all day and have kept him heavily sedated with a paralysis to keep him from moving at all. He has a low blood pressure so any type of movement or irritation makes his blood pressure drop even lower. His body isn't quiet receiving the blood that it needs to. They've put him on a few more meds and upped his EPI five times the dose it was at. This helps contract the heart and it pushes out more blood. He hasn't progressed at all today which is discouraging. We are waiting to see how the night goes and hope and pray it takes a turn for the better. I love that cute little face so much! He's so amazing...I wish everyone has the chance to meet him. He is so strong and is putting up the fight of his life. I won't put any pictures of him on now because he's in pretty rough shape. but at least you get to see him and his awesome scar from his first surgery.

Love you Brig. Keep the fight little lion man!

so much uncertainty

This picture is from last Tuesday. They let me hold him a day after they put his PDA stint in. It is always a treat to hold this little man. I have not been able to hold him since this pictue. Little Brig has a mind of his own now. Every time there is too much noise, or if they have to move him, all his alarms start beeping and his numbers/heart rate go crazy.I am so grateful for the times I do get to hold him. It is a privilege.

As far as how he is doing... From a cardiologist standpoint, he's pretty good. But for the past week he has been putting out a large number of fluid from his chest tubes (Chglous effusion). Normal is around 50 to 70 cc every twenty four hours, and Our sweet little man is putting out 530 cc. They can only put back 400 cc of fluid in. They doctors have been quite concerned because he is loosing plasma which carries all the nutrients such as proteins, white blood cells, fat and antibodies. He's starting to look a little too skinny. They were hoping it would start going away on its own, but he's shown no sign of improvement for the last week.

Today they decided to take him back down to the OR open him back up and look to see if there is a cut on the lymphatics. We are hoping and praying that this is the problem! If not we have to wait it out and see what happens. They were thinking of giving him a medication called Octreotide, but there hasn't been great reports with it and it doesn't come without its problems. The other option was to do a pleurodesis where they basically irritate the lung walls so they swell and then they would hope the lymphatics would restrict and therefor restrict the drainage. The reason they don't want to do this is because they would just be damaging lung tissue and his lungs are already pretty damaged. So today off to surgery again!

Our poor sweet little Brigham has been through the ringer. We know it's a process and we are hopeful everything turns out right. I love this boy so much. He's finally starting to wake up a little and it's really hard to hear he has to go back under and be cut open again.

Once again I ask for you to pray for Brig, pray that the doctors can figure this thing out. Thank you for all who have prayed in our families behalf. I can't say that enough. We have felt your love and prayers.

i love when that smile lands on my lips

I can't express how much I love this man. I hope Joe doesn't mind me sharing this picture, but I do want him to know he is so appreciated and loved. I kind of skipped a lot of parts of Brigham's birth and I think this picture sums it up. The worry, concerns and tears that filled the room. Me in the back ground sobbing and Joe reverently standing by his broken son. I can't even imagine this experience with out him. He has kept me so optimistic and sees everything in an eternal perspective. I am grateful for his worthiness to hold the priesthood. Now more then ever it seems we rely only on our Heavenly Father. We have grown so close to our Savior and each other. It really has been quiet a neat experience. Joe is the best dad to our girls and sweet son. He is also the best husband to the lucky me. I remember a note Joe wrote to me when we were first married and he told me we would have experiences and trials in our life that would be hard, but if we came together hand in hand with faith in our Savior we would be able to endure them. How true this is and has become! You would think at this point in our life it would be hard to laugh and enjoy the moment, but as you know Joe always has a way to keep it light and fun (so we laugh and enjoy the moment). He is constantly making me smile and always giving me sweet kisses. Thank you babe for keeping my hope and faith at a peak. I hope I can return the favor. The days have been bright and our son has constantly fought with his tiny body. Brig is lucky to have such a great daddy. He will learn many things from him. And one day Brig will find a beautiful lady who will love him as much as I love his daddy. How blessed I am to have these two guys in my life. One little and mighty, one big and mighty. I love you Joe.

day 10

Sweet Little Brigham is doing so much better today! The first couple of days after surgery were so rocky. His numbers were crazy his heart rate was crazy, his lungs were deflated and his kidneys didn't seem to want to work! He was so swollen and looked terrible. The doctors here are amazing and are really working everything out. He is doing really good today. By really good I mean he's still not in great shape but much better. I will put up a few pictures of him when he's a bit less swollen. The news today is his creatnin levels are coming down, which means his kidneys are working a little better, the goals are to slowly ween him off a few meds, and are hoping to start giving him some breast milk (thank goodness, we are running out of room in the freezer). We are so encouraged by his improvements and we know the Lord is truly watching over our son.

On a different note...

Today I was thinking, you know those things you get tired out by when you have a baby?

Waking up ever few hours to feed.
Nestle them in bed with you as you feed.
Put cloths on and change those cloths when the poop out of a diaper or spit up.
Rock them for hours until they stop crying.
Hearing them cry.
Watching them open there eyes and look up at you.
Changing their diaper.
Swaddling them and holding them close to give comfort.
Watch them sleeping peaceful in a blanket.
Circumcision.
Family time (normality).

I will never take these things for granted again.

As for now, I consider myself pretty lucky that he is here on earth with our family. One step at a time. I just have to remind myself.

Thanks for all your prayers. We feel them and we feel everyones love and support! Thank you thank you...

a miracle indeed

I don't even know where to begin with this post... I've been putting it off because I can't even begin to tell the story of our sweet son without getting overwhelmed. I can say this has been one of the sweetest and scariest experiences. I will try not to put the graphic pictures on. So you see I only put up a few.

Part of his story:

Brigham arrived at 2:18 p.m. on Wednesday October 26, 2011. I was induced around 10:00 am. After 15 minutes of being fully dilated and fully effaced waiting on doctors I was ready to push. Two pushes later, he was out. weighing 7 pounds and 22 inches long. I can't and won't go into details, but it
was a very emotional birth with lots of doctors, nurses, and the transport team. I can't put into words the fight our little Brig put up. His story is truly a miracle. He is such a tough guy and we have been able to spend six wonderful days with him so far! Joe has been updating on his facebook if you want more details about the past six days.

The highlights...


survived delivery
survived placing of stent one hour after delivery.
no significant organ or brain damage.
I got to hold him.
six days close to Brigham and close to the Lord.
Brig received a name and a blessing.
survived major open heart surgery with heart and lung bypass at 6 days old.


I hope to continue to keep adding on to these highlights. Thank you everyone for your thoughts and prayers. We have been so blessed with so much support and help! We love you!


Brigham, we love you son. You have been so tough! Keep fighting sweet boy. I am so amazed by you and have loved having you and being close to you. Your little body has been working so hard, keep fighting Brigg! Your mamma loves you!

love will not betray you.

We are still waiting in anticipation. Everyday I wake up wondering, will this be the day? And without fail the day comes and goes with me feeling good but swollen. Of course because I moved down to the valley at 37 weeks means he won't come until he is suppose to. (which is ok)  I am just really to that point of being so done. Although I know he is safer in then out, I'm to the point of d.o.n.e. There are only 6 days left until the actual induction, so now I've reached the thought process of...well it's coming now or in 6 days, why not now?! But I guess I will have to be patient and wait.

The girls and I have been doing things to keep us busy and I try to keep my self in rigorous activity not only to pass the time but to secretly put myself into labor...(doesn't work) It does pass the time which is nice. My poor Aunt Lois didn't know what she signed up for when she agreed for us to stay here until the baby comes. She has been a full time babysitter between appointments and me running errands. We greatly appreciate her. There has been so many wonderful people who have helped Joe and I. People taking the girls for play dates, taking me out for lunch, talking to me for hours just listening to me pour out my heart and people who send texts just to let me know they are thinking and praying for our family. It has been such a humbling experience to receive so much love. It truly amazes me the things people have done for us. I won't mention names or the generous things, but I have really learned people are good. Truly good. It makes me want to give so much back. Maybe one day I will be able to as for right now, I can just thank you everyone who has prayed for us, thought of us, or gave me encouraging words! I love you.

The heart means something different to me now. One being an obvious reason for our son's heart condition. The other being the love Joe and I have felt through all of this from eachother, from family, friends, and even from people we have never even met before. Love is real, for I can feel it endlessly.

 I can see the beauty of love it was made to be.

words just won't work

I've sat here at the computer trying to think of what I can say to express what I feel. I see his sweet face and everything becomes too real. Today at my doctors appointment I was dialated to a two and 70% efaced. Our sweet little Brigham will be here before we know it! There are so many thoughts that repeat over in my head and so many emotions that I never knew I  could feel. I litterally feel like I am being tugged back and forth like a rag doll between two ideas. I feel so uncertain for things that are certainly going to come. I feel unprepared for being a mother even though I already have two children. I can't make sense of my body although I've been living in it for 23 years. I guess you can call me confused. I can't really feel one certain emotion and that in itself is hard for me. I know as time comes I will feel a flood of emotions and one by one feel each of them at their own specific moment. As for things I am certain of...

 I have made the move down to the valley. After much debating I told myself I really needed to be here. Now that I know I'm already dilating and thinning I think it was the right move. I know that it doesn't mean he is coming soon, but I also know that it doesn't mean he will go full term. They have me schedualed for an induction on October 26, at 8:30 am if he does't come before then. He is head down and spine up all ready in birthing position. so I have 16 days left and the countdown begins. Joe and I are taking this one day at a time. Thanks to the talks in church on Sunday my outlook for the next few months will be, "Come What May and Love It." I know the Lord is on my side and I know with this all things are possible.

Here we go sweet son of ours...
I can't wait to  meet you and hold you in my arms.
 I love you today, tomorrow, and always never, ever forget it...

pictures to prove it.

I love my cute kids including the one who I have not met officially.

the facts.

You might have to read this post slowly to understand it.

 Yesterday Joe and I had several meetings with different doctors and kind of got a feel of what will take place at Brigham's birth. There were many options and different roads for us to take for the course of his arrival and instant course of action they must make for his poor heart. The past few ultrasounds there have been no new surprises which has been wonderful.
 
 Each time we go in the techs taking the pictures are sweet enough to print us a few out of our handsome little man in 3D. That is my very favorite part of going down to the appointments. He has the cutest chubbiest cheeks and is now measuring 5 lbs. 4 oz. He is in the 20th percentile for where he is suppose to be, but I am proud of him for making it to be this size! (I will take what I can get) They plan to induce me at 39 weeks if I haven't already gone into labor on my own. I am moving down to the valley on the 10th and will be there for the remaining time until we can bring Brigham home.

I will be delivering at Banner Good Sams.
I will be able to have a normal vaginal delievery if he is in the right position.
He will be immediately monitored, sedated, intubated and transported to PCH. 

 We met a new face, Dr. Martin. He is a specialized baby Dr. who explained to us the benefits and downfalls of ECMO.(heart/lung bypass machine) We were very well informed and feel like we have made our decisions on ECMO for our baby. For Joe and I, the downfalls outweigh the benefits.We have learned it will take more time putting him on the ECMO machine then just intubating him and transporting him by ambulance to Phoenix Childrens. (this being the major reason) There are many many other factors that play into ECMO that just don't seem to work out for our son, so right now it is safe to say we will not put him on the ECMO machine right when he is born. If he needs to be put on it later after he is transported; after he has the stint placed and ready for his first open heart surgery and it will be helpful, then we are ready and willing to try it.
 If our sweet son isn't doing well and there is just no way it's going to happen for him, our plans are to just hold him and love on him. I believe his time here on earth should be spent with his mom, dad and sweet sisters. It has been so hard my whole pregnancy not knowing all of the situations that could occur. Finally it feels like it has winded down to two. We are hoping for the best for our son. And I'm not  exactly sure what the best is for him right now, but I do know it is one of two things. And I have completely turned it over to the Lord, I have given up trying to figure it out and solve the problem. Like in the conference talk, by Robert D. Hales, he said, " The Lord answers prayers when we are ready. Sometimes prayers come little by little and if we are sincere in our prayers they will be answered sometime, somewhere." I have truly come to that realization of little by little. I know I am not alone in trials, heartache and confusion. I have been very blessed to know other heart moms and I have heard so many touching stories that have touched my life forever. And I can't ever seem to forget what a wonderful husband I have who has been so helpful, comforting and worthy of the priesthood.
 I really feel blessed by this whole experience. Sometimes I feel a little crazy and overwhelmed, but mostly blessed.
I love my son, I love his chubby cheeks and I can't wait to hold him in my arms and give him kisses.

This post is personal, but I am really trying to keep family members and those who have been following Brigham's story updated, I hope it helped.

i'm one scared cat

Today I am 35 weeks. Only 4 weeks until induction or sooner if I go on my own. Last weekend I watched my sister give birth to her fourth child, Kelsea. She is beautiful in every way and it was such a bitter sweet experience to witness. I've watched all of Krista's births and they have all been so amazing. She first of all does so good, and then the spirit that comes into the room when these little babies enter the room. So that was the sweet experience. The bitter experience of it all was realizing, wow this is going to be happening in another month for me and it's not going to be as peaceful and sweet...It's going to be scary and unpredictable. Yes, yes, yes, this isn't my first time at the birthing rodeo. I've pushed two babies out before..that is not the scary part. The scary part is not knowing if my son will be ok or not.

I really had a hard time the next two days after that. I'm sure the lack of sleep didn't help, but I just kept thinking about how I won't get to hold my baby when he comes out, I won't get to see him for 3 seconds without tubes all over him and we are going to be in two separate hospitals, how am I to be with him if I am recovering in the hospital next door? To say the least I was scared. I finally told Joe my feelings because I'm pretty sure they were literally eating me away. He is so good for me. He got me in the right thinking and it was so nice just to get those feelings off my chest. I am scared to death and so unprepared for whatever is to come. For now I am trying to focus on the positive instead of the negative.

Anyway, enough on feelings. My home/yard is coming along so nicely! I love it. I love being home and I love looking out my front window and having the view that I have. Here are the pictures of my lovely outside!

The before:

The After:

pick a name for wonderful

We have finally decided on a name for our sweet little guy. It's funny we had so many different names we liked but could not put one to our sweet man, none of them worked. So after visiting Boston and doing our procedure at the Brigham and Women's hospital I fell in love with the name Brigham.

 Brigham Paul Denhalter

 I didn't even have to convince Joe of it. I told him this was what I thought his name should be and he said, well then that's his name. Joe probably just got tired of me trying to get his name right so just agreed:) But we got it right this time. I frequently talk to him and calling him Brigham feels right.

As for now I have Dr. visits at least twice a week. I am now 34 weeks and I'm still not totally prepared for anything. At my last appointment there were no new shockers. Which was a nice change. They are still a little baffled as to where the fluid went. Anyway as far as delivery and hospitals we have some more decisions to make...

We will be delivering at Banner Good Sams, right there next to Phoenix Children's Hospital. We were trying to get them do deliver me right at PCH so our son could go straight to the cath lab to get his stent in to stabilize him before the first surgery. But they said it was too dangerous for me, if I were to need something, a blood transfusion, an emergency c section or anything, they wouldn't have the right tools/people there to do it... so BGS it is...
This honestly scares me to death. They are probably going to have to put Brigham on a lung/heart bypass machine to transport him. It's called ECMO. We are running into troubles all over with this. I won't go into details, but it's going to be a very difficult process for our sweet boy. As decisions are made I will explain further. We are hoping by some miracle his blue and red blood are mixing on it's own so we can just put him on a breathing machine and incubator and rush him over to PCH. I know it's a repeat, but I know Heavenly Father has a plan... It's so much easier to bear when you can trust in someone who sees the whole picture. Because right now I feel like I can only see a glimpse of the picture. It has been hard to understand, but as time keeps being tossed my way I think I will keep getting better at understanding whats going on and what will happen.

I have some really cute pictures of our little guy, but I don't have a scanner... Hopefully soon I can get them up so you can see how handsome he it:) Just like his daddy

two seven

 Dear Joe, I like your. I just had to let everyone know why I love you so much. The reason I love you so much is because you always are keeping it light and fun. There are so many reasons why I love you, but I think this is the one that made me fall head over heels for you. You make my world a million times better. Thanks for always making me smile, even when it's hard. 

I hope you have a happy birthday babe! I love you!

(sorry everyone I had to delete the picture, Joe told me it was inappropriate) haha...

news for the day

The one thing I can say today is the Lord is watching over us.

 Monday I had and ultrasound and stress test at PPA (Phoenix Perinatal Associates). The stress test went well, but the ultrasound was showing fluid around his lungs. This became a great concern for the doctors so they wanted Dr. Stock the cardiologist to take a second look. So I had to stay another day and on Tuesday, he confirmed there was indeed quiet a bit more fluid around the lungs then they had ever seen in previous ultrasounds. The couldn't figure out the cause, HPLH babies don't usually have this kind of problem. They thought it was signs of possible heart failure, possibly the stent rubbing the heart and causing a blood leak into the lung cavity, or his body just responding to an over worked heart. The Doctors had began to tell me we might have to deliver within the next two to ten days. I felt overwhelmed and so scared. I did not want that to happen, I knew he wasn't going to have a chance if this were the case. I called Joe weeping. I knew I had an appointment on Thursday (today) but did not want to stay in the valley. I had to come home. I needed a break. I had not been home since Boston and needed some time. I was so overwhelmed and mentally exhausted. So I packed all my things up and came home. 

I'm pretty sure half the way home I prayed and cried in confusion the other half. But I made it home, I got to see Joe cried a little more and felt so much better.We saddled up the horse, took the girls for a ride and enjoyed the rest of the night together. I needed so badly to be home with my husband. I rely on him so much for that solid support and love that he gives me. Wednesday was a wonderful day. It felt normal and routine. I loved it. I never loved a grocery trip to wal-mart so much and never enjoyed to clean my house like I did yesterday.

Today (Thursday) I got up at 5:30 am got dressed and headed to the valley for my 9:00 am appointment. I had my stress test, then went back to the ultrasound room to see where the fluid was at around his lungs. So the tech came in took pictures, said she thought the fluid looked about the same but wasn't sure. Then the doctor came in because he thought he might have seen a little bit of fluid around the heart and wanted a better look. SO... I waited in anticipation as we both sat quietly as he took pictures, thought...and took more pictures.

He turned to me with a look a bewilderment and said,
"the fluid that was in his lung cavity is no longer there.
I don't know what happened because he had almost 6 cm of fluid there and now, there is nothing"...
He could not give me an explanation, but I don't think I needed one.

 I don't know all of Heavenly Father's plan (actually any of Heavenly Fathers plan), but one thing I do know is he is watching over me and our sweet son. I know he knows my thoughts and feelings, my anxieties and fears. Almost instantly when the doctor told me the good news, I felt a heavy weight lifted off my shoulders. I'm pretty sure I was grinning ear to ear.

So guess what, good news did come our way!

                      The much needed daddy daughter time, cutest hubby ever and sweetest girls ever!

One for the records

Today is the day I get a free moment to write down all that happend in the last two weeks.

 Yes, we did go to Boston.
 Yes, the procedure did go through.
 Yes, it was a crazy experience.
 Yes, I am glad we did it.

 After the hurricane we got everything set up again and went for it. On the way there we were nervous and excited to be able to help our little guy in some way. Nervous as to how it was going to work, but hopeful. After we got to Boston we got set up in our little tiny bedroom. Joe slept on a twin air up mattress and I slept on the twin bed. We almost didn't fit. We had a good laugh about that. We feel super blessed we didn't have to pay for it and that was what we had to remember. The night we got there Joe walked down to a Red Sox/ Yankees game while I stayed in and went to sleep. I was so exhausted and you know Joe...he's a mover and a shaker:) I'm glad he got to enjoy that because the next two days were Dr. appointments.

 Thursday we met Dr. Tworetzsky. He is the fetal cardiologist who was directing the procedure telling the others where to poke the needle and point the ultrasound. We also met Dr. Benson who was the radiologist in charge of the ultra sound during the procedure. Dr. Norwood who was the neonatologist who was on stand by in case I were to go into pre- term labor. Dr. Wilkins-Haug who was the other cardiologist directing the needle in my belly, then into his heart. Dr. Marshall who was another cardiologist watching and giving input. Gee the anesthesiologist. And Dr. Lock, who was head of the department. Then, we got to meet a couple of the nurses who were taking care of me and helping with the procedure. Ginny, who was wonderful and helped me relax and Kathy who helped get everything ready but was not actually in the room.

So as you can see it was a busy day meeting a few of the worlds greatest doctors. I probably would have passed out if it weren't for Joe holding my hand through each meeting. We sat in a conference room going over once again all the risks and benefits and all the possibilities. That night we went back to our room. tried to relax, watched a movie and tried to prepare ourselves for the next day. Surgery day.

Friday, September 2, 2011.
 I anxiously got ready Friday morning. We had to be at the hospital and 9:30 am. I got into a hospital gown slipped into my hospital bed and waited for the "team" to be ready. They had asked Joe and I if we wanted to help a news team do a story and Joe and I agreed. It was the ten year anniversary since the first in-utero intervention and we happened to be there that weekend doing a surgery! (lucky us) We found out there has been 142 in utero interventions(different types of interventions) that have been done and ours was number 5 with the atrial septum intervention. 3 successful, 1 where they couldn't get the stent in and ours. We talked with the news team for an hour or so and told our story, told about our experience and all the wonderful people who have been so willingly to help us, and told them about our sweet son. After we were done being interviewed the Doctors started piling in getting everything prepared. Then it was time... I kissed Joe goodbye and they rolled me into the operating room. I remember a camera in the room which was for future feedback for the doctors, I got my epidural and started getting really nervous. I was so nervous I felt like I was going to throw up. They had me lay down and they asked if I wanted a seditive to help me relax and I was all for that. It was a race between the throw up and the relaxer. They next thing I knew I was out.

I woke up half way through the procedure with Dr. Lock yelling they had dropped something. I could feel the tension in the room and was wondering what the heck is going on. They were talking to me, telling me to hold my breath. Then telling me to take shallow breaths. I was so confused and worried something terrible had gone wrong because of the one Dr. who was telling everyone to shhh...and bossing them around. My arm kept falling off the table but the anesthesiologist assured me it was ok and kept putting my numb arm back up on the table. He kept telling me to take shallow, short breaths. Gee was the only one really calming me with all the tension in the room. After the room had calmed a bit the Doctors began telling eachother good job and I felt a bit more relaxed, the procedure was done and the baby and I were both ok. They rolled me back to my room and there I found my sweet Joseph anxiously waiting for me with red eyes and a worried look. He came right to my side held my hand and started asking questions. I told him the experience of waking up with the Dr. yelling and trying to remember their conversations. Dr. Wilkins came in and we then learned what went on in the operating room.

 The procedure...

 Dr. Tworetzky and Dr. Wilkins came in explaining to us what had happened. They had the baby in the right position, stuck the needle in my belly, then into his heart right into the atrial septum. They blew the balloon up and over inflated it and the balloon popped. So they had to get another one from the cath. lab. and retry. This time they inflated it to the right setting, went to place the stent in, and dropped the stent. The stent then got lodged the the wall of the atrium and they could not get it out. They all agreed they don't believe it would go anywhere and it would just be taken out with the first surgery. So our sweet son has a stent floating on the wall of the atrium. So they did get the atrial septum open with the balloon, but could not get the stent in place to keep it open.

 Well the next day we did a fetal echo and saw the hole was already closing up again. Dr. Tworetzky was hopeful it would stay open longer, but dissapointed it was already closing.
My second echo when I got home showed no sign of blood flow again. I felt so dissapointed and sad for our sweet little man. Now we are back to square one.

Joe and I came to an agreement we gave it a try and it did not work, but we do have that piece of mind that we tried. This sweet son of ours knows we love him and now we won't look back and say we wish we would have went to Boston.

Recovery was a piece of cake. I was up walking around 30 minutes after the procedure and just have a couple little needle pokes in my belly. Sunday we went down town Boston went to a movie, walked around Boston common, had a picnic in the park and tried to enjoy the day. We were anxious to get home and ready to see our girls. I am grateful for the experience Joe and I had to go and do this in utero intervention. We feel so blessed and have had so much help from family and friends. We came home and it was so nice to see the girls be in our own bed, sleep next to eachother and have our own personal shower. It has truely been quiet the ride, but we have grown together as a couple more then I could ever imagine.

I keep telling Joe we are too young to have to make these kinds of decisions! I have lots more news but I will save that for Thursday when I get more details. Thank you for all the  prayers. I have felt so much strength and comfort. Every time I feel like breaking down somehow I am able to press forward! I know Heavenly Father is watching over our little family and knows our fears, and our needs. I don't know whats going to happen to this sweet boy of ours, but I know there is a plan in place. I am just glad to have the knowledge of the gospel in my life.

Here are a few of the pictures from Boston

                                                               The game Joe went to...

                                                          Our day of meeting doctors.

                                                            The famous Boston childrens hospital

                                                               Harvard Medical School

                               Our bedroom. my bed, and Joe's bed is up against the wall:) Spacey eh?

just like a hurricane

For some reason we just can't seem to get this Boston thing right... Thanks to hurricane Irene, we are out of commission to fly out Sunday to Boston. All flights were canceled.

We are back to square one. I talked to Dr. Tworetzky today on the phone and talked and re-talked over the risks and benefits of doing the in utero surgery.  I came to the conclusion that whatever we do there are going to be risks involved. If we do the surgery we are taking several different risks. If we don't do the surgery, we are also taking several different risks. So there is no way around the risks we have to make for this sweet son of ours. We had talked about me getting to far into my pregnancy to do the surgery and if the surgery didn't happen soon, it's not going to happen at all. They don't want to put me into preterm labor and make all the complications worse so we came to the agreement that I needed to get it done this week or take the risk and not get it done at all. So as for now our new flight arrangements are set for Wednesday Aug 31 and the surgery will be Friday the 2 of Sep.

It is almost comical that there hasn't been a hurricane near Boston for 20 years and the weekend we plan to go there one hits. It really feels like a bad joke that I don't get. I hope someday I will understand all this a little better, because right now I am really frustrated, nervous, anxious.. and confused.

Joe reminded me today we have so much to be grateful for though... I just have to remember those things instead of focusing on all the little things that seem to be dragging out and making me feel so frustrated. I really need to enjoy all the good in my life right now, because Joe is right...We have so much and feel so blessed to have so much good in our life.
Maybe we can make it there on Wednesday, this time I'm not going to get my hopes up!
Thanks to this guy my chin is still up and I still feel sane. Thanks Joe for making me feel like I'm the only person in the world! I would would be still crying about a flight change if it weren't for you:) I love you babe

hand in hand

For those of you who don't already know our insurance did go through and was approved! Joe and I are so relieved and nervous. We leave to Boston for our little mans first procedure on Sunday August 28. We will be doing assesments and testing/appoinments all day Monday, then Tuesday will be the actual procedure, Wednesday will be recovery and as long as everything is going good we get to fly home Thursday. Quick and easy...(right?) Pretty amazing what they can do and how they do it.

Each day that goes by seems to make me more and more nervous...I know Dr. Tworetsky is an amazing surgen and knows what he is doing, but still you place so much faith in these people and just pray that it will help. One thing that seems to never slip my mind is that our Heavenly Father is in charge and His will will be done. I feel very comforted by this and relieved by it in every way. Like I said, I'm still so nervous and have so many questions.

So if you remember Tuesday we would really appreciate your prayers! Thank you everyone who has helped us so much with the girls and with lining everything out, you have made this a tremendous amount easier!

pre school already?

Ryah started pre school on Tuesday: I have the weirdest mixed emotions about this. I'm sure every mother goes through this. I am so so thrilled she is going because she is so ready for something new and so ready for "school". I am also so weirded out that she is big enough to go to pre school. She absolutely loves it though and loves. Mrs. Tarrah...

All morning I kept telling her Mrs. Montgomery is going to be your new school teacher and she was so excited. So after I picked her up from school I asked her, " How did you like Mrs. Montgomery as your new teacher?" She said, " She wasn't there, it was just Mrs. Tarrah." Oh how that girl makes me giggle. She loves going to school and loves her hello kitty back pack. It is really nice for me to be able to spend some one on one time with Aubree! I think Aubree loves it too.

The pictures of Ryah all dressed in the blue is the outfit she wore to the first day of school, and of course she picked it out. I would have probably made her change if she wasn't so thrilled about how well she did with all the matching blue...I just didn't have the heart to tell her otherwise. She made it cute though:) And the other pictures were her second day. I thought she looked so stinken cute so I had to take more pictures. And of course my sweet Aubree Kate looked to adorable too, so we had to take some pictures of her. I love those cheesey grins and beautiful blue eyes! I'm one lucky mamma!

Happy pre school days Ryah!

something:

something embarrassing: Today, Ryah somehow managed to stick her head into the back of the plastic chair in sacrament meeting and get it stuck. Yep...the whole meeting stopped and turned back to look as she began crying and then screaming. It wouldn't have been too bad if she would have been able to get it out, but no...she was freaking out way to bad and it took a minute as she screamed and as sacrament meeting was silently staring at us...

something sad: Joe left to go fishing today and I am home without him a couple of days. My bed feels too empty when he is gone. Maybe I'll sneak Ryah and Aubree in with me.

something cute: My mom asked Ryah if Joe and I had talked to her about her baby brother. She said yes in a sad/serious tone, and my mom then asked, "what is wrong with him"? Ryah then turned to my mom and said in a devastated voice, " He has a broken neck"...(as she was placing her hands over her neck). It was worth a try right? I got a good laugh out of it.

something irritating: sitting in the doctors office for two hours because Aubree is sick, and getting checked for 5 minutes then him saying everything looks great, keep her fever down and watch her diarrhea... uh, DUH! Thanks Doc.

something gross: Aubree pooping in the tub and trying to clean it out! Thanks sweet baby...

something funny: Missy at game night trying to act out Jack Nicholas, with her hands held up to her eye like shes looking through a door or something, and Greg guessing a gynecologist... (really Greg?) Oh the roar Tom got out of that...then he had to add on of course, I won't go into details...needless to say, it was funny.

something I'm frustrated about: still waiting on insurance to clear for the Boston procedure.

something sweet: Heath bars and mint chocolate chip ice cream.

something nice: My husband, he just finished the outside of our house and it looks so good. I can't believe all the things he does! He really is superman I think...I really really really love him

dealing with people like us

Today we got some really great news! There is a wonderful foundation called the Ellianna Grace Foundation that deals with people who undergo in utero surgery and who have to fly to Boston, and stay for a week or so. They deal with people like us. So as long as Boston is a go we will have one plane ticket paid for, our hotel expenses paid for, a food card and a taxi voucher back to the air port.

I can't express in words, the load and burden lifted off our shoulders... It humbles me to know how kind and generous people are. I know we are being watched over and can feel so much comfort and peace through all of this. If you want to find out more about the Ellianna Grace Foundation their site is, www.elliannagrace.org or go to their face book page  www.facebook.com/ElliannaGrace. Brita the founder has quiet the story. You won't regret reading it. Anyway, thank you everyone for your prayers. We have truly felt them! We have been so blessed throughout our lives, and I feel we will continually be blessed if keep trying to do what is right. I know we don't always have the answers, but I do know we have a Heavenly Father who loves us, and so many gracious people supporting us and praying for us.

Here is my 28 week picture, it feels so silly to post these pictures, but I know I will want to have them for later! So sorry you have to put up with them:) They are more for me then anything...

sweet son of ours

So we were able to meet with Dr. Stock, the fetal cardiologist and we absolutly loved him, and were so pleased to work with him. We found out a few more interesting problems developing with the baby which they were concerned about. His atrial septum has begun to close off. This is considered the highest risk type of hypoplastic left heart syndrome. The atrial septum is basically the hole in the heart which all babies have that closes up shortly after birth. This hole is vital for babies with HLHS because the left side is non working and the atrial septum is the hole allowing blood flow to his body which the left side is suppose to do. Dr. Stock has spoken with another cardiologist, and spoke to a surgen in Boston about our situation and they are in want to perform an in utero catheterization. This will allow them to go in to the babies heart while he is still in utero and place a stint in the atrial septum to open it back up and to keep it open. On top of all of this my fluid levels were high at 25cm, which is dangerous to the baby and to me if they get too high they will hospitialize me, put me on steroids and deliver the baby as soon as his lungs are more developed from the steroids. I have been really trying to hold it together, but I feel like its one thing right on top of another. We are hopful, and love this sweet son of ours. We know he is perfect in everyway, and feel very blessed to have him as part of our family. Yesterday was the day we told Ryah of her sweet baby brother. She was watching Joe and I hold eachother crying and she came up to ask me why I was so sad...It's hard to tell a three year old her baby brother has a broken heart, we tried to explain he will be a special brother and she will have to be an extra big help to mom and dad and baby brother. She was pretty concerned and kept asking me throughout the day if I was still sad. She is such a sweetheart, she kept giving me hugs and kisses which I really needed. As far as right now, we are waiting for our appointment Friday to make any decisions. They have us schedualed in Boston for August 14, but they are giving us a few days to decide on weather we want to do the surgery in utero or not. The other thing the Boston group told us is they would like to do the three surgeries after birth there if we get this opening of the atrial septum done there. I know the Lord will guide us in our decisions, but we really can't make any set decisions right now. Hopefully come Friday we will know a little bit better on what to do. The good news is my placenta has moved up and is no longer a concern! It is still lying low, but it's up enough that we don't have to worry about it! The other wonderful thing that happend to us while we were there was we got to see our beautiful, perfect son in 3 and 4d. Here is one of the pictures we got. I love and cherish this picture. Isn't he sweet?



waste not

So this is what we do every single day. It is so much fun and the kids love it. Tom and Angie are the greatest to put up with us all the time there. Being in Snowflake is so much fun. We have the pond right next door, four wheeler rides, great great neighbors, and the weather right now is beautiful.

here is a picture of my belly...So this is for you Klo, and all who want to see the sweet baby bump at  a whoppin 24 weeks.

I swear this pregnancy went by so so fast all the way up until we found out about his heart problem. And now each day inches by, it's the weirdest thing. I feel like I should be having a baby pretty soon, but I still have a long while. (hopefully) Now that things are settling down and I'm getting used to everything I'm going to be dealing with, I'm really trying to enjoy my days with the girls. It doesn't help that they always want to be at grandma's house from 6 a.m. to 6 p.m. (sorry Jackie) So we are over there when we are not at the pond. Lately I have really been realizing how much I need to be with my girls because I know, when this baby boy gets here it's going to be hard getting good time in with them. They have been so fun and big time stinky pants too. Aubree thinks she is so big now...she has to do everything herself, just like her big sister.

As of now, no big decisions have been made, we meet with a financial counselor within the next few months...and need to decide on a surgeon for our sweet boy. Thank you Andrea for pointing us in the right direction for a good surgeon and for good praise on his fetal cardiologist. It's reassuring to know these people are amazing at what they do. There is defiantly so much to think about... but right now, we are just enjoying the summer time and using our free time for fun...