Wednesday, April 29, 2009

Blessed / details of the appt.

Between emails, facebook and this blog...I'm feeling really blessed. Thanks so much for everyone thinking of us. I know that we're always thinking of our friends and family but something like this happens and all of a sudden, everyone makes it known that you're thought of. It's so nice and means more than you can imagine. ...I think some of our family worries because we're out here in Utah alone. Trust me, we're not alone. We have very good friends that will step up the minute we ask and plenty more that are there without being asked. In this technological world, we are in touch with everyone and we have daily encouragement. I'm in touch with people that I hadn't known for years, and this blog brings new friends all the time. Even better, I'm in touch with people who are either going through this or have been here and know what we're dealing with. I'm just feeling thankful this morning and wanted to make sure everyone knew...you all know who you are and I thank you.
Well, yesterday's visit to the U went very well. Our genetic counseling appointment was fairly short. All of the results to amniocentesis came back normal. The counselor took a quick family history from us and let us know that he saw nothing that raised his eyebrows. He was very kind and just stated what we'd already learned...basically, that CDH does not have any definitive cause. It is simply something that happens and the genetic counseling world is working very hard to find out ways to better understand why this happens. Good luck to them. It is noble and I understand nothing of what they do and am just grateful they have ways to assure us further that we're dealing with an isolated problem. ....Once we were done with that appointment, we were whisked back to our waiting room to meet with Dr. Silver. I was weighed, very happy because I hadn't gained even a pound, which is fine because I'm now being seen every two weeks. I had a midwife check Ireland's heart beat and ask routine pregnancy questions of how I was feeling and did I have questions. I preferred to wait to ask Dr. Silver, but she was efficient and knowledgeable in her own right. I saw her as part of my appointment because all of my routine pregnancy appointments as well as any additional care are being dealt with at the U now. It's nice because I do not have to go between two different hospitals. ...Anyway, Dr Silver arrived on a white horse (yes, this man is my hero right now) and sat down to talk with us. I immediately started with my questions. 1. We will explore dates of when to be induced as we near the end of my pregnancy. He'd like me to carry Ireland as long as possible and apparently, I'll be seen two or three times a week towards the end. 2. I will not necessarily have a C-section. He actually prefers for me to have a vaginal birth because he said vaginal birthing actually facilitates her problems by squeezing fluid out of the lungs as she comes through the canal. 3. I can freely have an epidural and this will not harm Ireland further. For those that disagree, we are all entitled to our opinions. I consider any birth natural seeing how a baby is coming from the mother's womb. Period. I could care less if a child came from your tummy or your vagina,...whether you used drugs or not...it's all natural to me. 4. Tristan can come and see Ireland when she's born. Any other children are a no-no. I have decided that Tristan can be with me during labor but he'll have to wait until he has his own children for the grand moment. But as soon as she's born, I'd like him to be able to come in the room. Apparently, my birthing room will have a window to another room where all of Ireland's doctors will be. The minute she is born, Dr. Silver will hand her through the window where she'll immediately be incubated (still truly figuring out what this word means) and stabilized. From there, they'll wheel her by me so that I can see her and then they'll be off to the NICU (neonatal intensive care unit). Mikey and I have agreed that he'll give me a kiss and follow Ireland. Tristan can stay with me at this point. 5. I asked if my diet should be changed in any way and he said no. To continue a normal diet and that nothing I do will effect amniotic fluid levels or anything else really. 6. We asked about Ireland having an MRI. He said that we could if it made us feel better but currently, they are getting very good pictures from the ultrasound. I'll continue to get ultrasounds at least monthly and if more organs seem to be moving into the chest cavity, then he said we'd probably get a MRI at that point. (once Ireland is born, she'll most definitely get a MRI herself.) Currently he sees the stomach and some intestine in her chest cavity but nothing else at this point. He also said that the ultrasound was so well that he really felt that the heart was going to look good during our echo cardiogram. 7. I asked about holding Ireland and spending time with her in the NICU. He said that holding her may take time but that the view of the hospital is that touch is important in healing babies and that I can expect to be welcomed by staff to touch her and be by her as much as I want. He said that if I'm tired, that the NICU tends to take very good care of parents that want to be there and for me not to worry about places to stay. And Tristan will have restricted hours but can visit with either Mikey or myself...other children are off limits and visitors will also have restricted hours and may not necessarily enter Ireland's room. .....Well, once we monopolized his time, once again (even though he is kind and laughed when I told him that I wasn't comfortable calling to ask a simple question...he insists that he'd prefer me to call about anything rather than worry....see why I love this doctor)...anyway, once done, we were off to our echo cardiogram appointment. After a small series of hallways and elevators and hallways, we arrived at the pediatric cardiology department over at the Primary Children's hospital (conveniently next door rather than across town, nice, huh?). Well, Dr. Silver had already made us feel good about this hospital and the appointment. He said that bottom line, rather than having hospitals throughout the state that could care for CDH babies that it was decided to have all the experts at Primary Children's. This helps with insurance approving the care and it keeps the knowledge concentrated here at Primary. ...Okay, back on track with the echo cardiogram. This test is a detailed ultrasound directed at Ireland's heart. It took about half an hour to 45 minutes because Ireland was jumping around so much. The only discomfort was me laying on my back and not wanting to move because I knew that Ireland wasn't staying still and I didn't want to cause even more movement....well, the tech wasn't allowed to say anything to us and it had us somewhat worried because the test was taking so long. Once she was done and the doctor came in, he immediately said that he wanted to take a few more pictures. Two more minutes of worry. Well, once he began to speak, it was all good news. Ireland's heart is definitely moved towards the right side of her chest but all 4 ventricles appear to be working properly and all the attached veins and such are also appearing to work properly. This is one more hurdle that we sort of passed. We asked if her heart was crushing the right lung but the doctor said that this is highly unlikely. Her heart is towards the right but not at an angle completely over her lung and not even at an angle that would even compromise growth of the right lung. This was very good news because of course, her left lung is being crushed and her right lung is what she'll need to be strong at first. The doctor let us know that he'll most likely check Ireland after her birth but that it's good news if we do not meet again. We would only need to see him if she would have to go on the ECMO (big bad lung/heart bypass machine) which of course, we really don't want to go there.
Well, that was our day. It was about three hours for all of that. The efficiency at the U is pretty amazing. We truly expect to have a major wait at times because clearly they take their time to answer our questions and common sense says that they're also answering questions for their many other patients. Compared to our last appointment, there was hardly any other patients there this time. That must be good...less sick babies coming into the world maybe?
Anywho, next appointment will be in two weeks. It'll be an ultrasound, routine checks and question and answer time with our hero, Dr. Silver. He'll be beginning to coordinate meetings with those that we need to know at Primary Children's and here soon, we'll take a tour of the neonatal department. We're feeling so good right now. We're trying to keep our feet on the ground because we know that despite all good news, there is still a very serious and scary thing we're facing. It's hard to find that balance but we figure we might as well embrace all of the good news we get!!!

8 comments:

  1. So glad you got good news and everything went well yesterday, we were thinking about you and praying for good news all day. Love ya! I love this blog, what a great outlet for you, and to let everyone know how the little darling is doing.

    Bonnie

    ReplyDelete
  2. Hi Chanda, in response to your incubated comment, did them maybe say intubated?? If that's the case that means that they will immediatley put a tube down to her lungs to take control of her breathing. Most CDH babies have this done right away. It just gives the dr's control so that things don't get out of control. It sound's like you have all of the right questions and that you're holding up to about the same extent that I did! I love catching up with your thoughts and feelings daily. Such a nice way to have this for Ireland when she grows up to look back on! Almost like us finding Grandma's dear diary...lol! Take care Bobbi

    ReplyDelete
  3. I am so glad you got good news. And it sounds like you have some of the best DR's you could ask for. Will keep you and your family in my prayers.

    Chrystal

    ReplyDelete
  4. Bobbi,
    I hope you check back on here...I'm not sure what I did with your web page....anyway, you're totally right...it's intubated...something about the word seems that I'm not saying it right. Hope all is well with you and your family!

    Bonnie, You're the best. I love knowing that family is out there looking out for us. Can't wait for my girl to have her first picture with your girls!

    Chrystal...I'm lucky because I do respect these doctors and have faith in them too. Not everyone feels so confident in their care or their babies care from some blogs I've read...can't imagine that!

    ReplyDelete
  5. So glad you got good news. Sending big time prayers.

    Love, Stephanie
    Brooke and *Kamryn's Mommy

    ReplyDelete
  6. Wonderful news that Ireland's heart looks good and strong!! Also good news that the amnio came back fine too. You are in good hands at the U of U and Primary Children's...they are wonderful and will do everything they can for your little girl. The nurses are amazing too, one of Ian's primary nurses as become like family to us and we have stayed contact. Ireland is in my prayers that she keeps getting stronger with each passing day.

    Hugs, Tracy - Ian's mom

    ReplyDelete
  7. Hi Chanda, Mikey, Tristan and baby Ireland.

    So sorry it's taken some time to look at your progress here. Please know that you are always in our thoughts and hearts. We'll be keeping a closer eye on you here in your blog. What a wonderful way to keep friends and family informed.

    Love You
    Dawn and Greg

    ReplyDelete
  8. I do check here Chanda! I will send you my blog link here... and anyone else who wants to check it out. It's not very interesting as they get older, but its my life :) and the less exciting it is right now, that just means that there is nothing wrong...for a change...lol http://bobdoble.blogspot.com/

    ReplyDelete