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?