Prayers for Rachel and her Baby Daniel

One of the moms from the Breath of Hope group lost her son, Daniel, in utero on Monday. She delivered him yesterday. Please keep this mother and her family in your thoughts and prayers. It is a sign of the seriousness and fragility of these little ones and their condition.

Our "little" girl is big!

We had our appointment yesteday with Dr. L, our perinatologist. He did a growth estimate since he had 4 full weeks of measurements to go off of. Liviana is in the 79th percentile and already weighs approximately 4lbs. 2oz. She is doing great on her growth. I will be 31 weeks tomorrow. Of course, U/S estimates of weight and growth at this point in pregnancy are just that, estimates but it is certainly a great sign. My fluid still looks great and he said it is not even in the above average of the normal range. This is a great sign.

I mentioned in our last message that Dr. L. wanted me to get a steroid shot at this last appointment. I did alot of research on the subject, talked with other CDH moms and talked with our pediatric surgeon and neonatologist about the issue. The general consensus from all was that it was not necessary since we are not in a premature labor imminent situation. There is no reason to think I would have Liviana early and her CDH alone is not a reason to plan through inducement to have her early. She is better off inside of me.

We met with the neonatologist again after our appointment with Dr. L. He was again very optimistic and reassuring. He said that the fact that her heart is so far off to the right, although it seems like it should be, is no reason for concern. He said these little ones are amazing at how they adapt and do fine even with their heart in the wrong place. He mentioned that when it was discussed and looked up they have had about 15 CDH in the last 3 years (which is great) and that they have about an 80-85% success rate with those babies they lose having other anomolies which we don't believe Livvy has.

I also wanted to update you on our meeting last week with the Pediatric Surgeon, another Dr. A. He was great and he is the only one of the three in the group who does the repair surgery laparoscopically which is less invasive and leaves much less scarring than the open surgery. They will not do it laparoscopically if the hernia is too large but it is an option with Dr. A. which is great.

Thanksgiving was great. Mom, Brad's parents and Tony and Crissi all visited (not all at the same time though). It is nice how everyone comes to see us since we can't travel :). Other than that things are progressing fine although we are stressed with medical bills, not having someone to watch the kids when this all happens and other miscellaneous stuff. We are joined a church near by and hope that through that and other avenues we can meet some more people here in Omaha since we will need the support in the coming months.

I hope everyone enjoyed their Thanksgiving holiday. I can't believe how quickly this year has gone and how quickly this last few weeks of pregnancy are going. I'll update again soon.

Update from last two appointments

Hi everyone,
I chose not to post an update last week from our appointment because we are going every week now and I thought I would try to combine two or more rather than an update every week unless there is important information to pass along.

Last weeks appointment was pretty uneventful. He said Liviana and I got an "A" for the week. She looked fine considering her movement and heart rate. There was not any increase of fluid which is good. I have mentioned before that is a risk with CDH and can cause other problems as well. He decided we would see him every week from now on. Sure hope that insurance comes through :).

I got a lecture on not doing too much (he does know we just moved, right?) and resting, etc. I tried but it really did not happen much. While Aria and Miles were with us at the appt. they didn't seem to listen to his suggestions for their momma. Despite my lack of taking it easy and not doing too much I feel great, just like my other easy, breezy pregnancies.

This week he checked her heart and fluid level and everything again. All still looks good. She is not showing any fluid in her abdomen and I am not having increased amniotic fluid which indicates she is still able to swallow at this point. Her heart is pushed so far over to the right and he talked about the possibility again that the neonatologists and surgeon may opt to deliver early if it appears her heart will begin having difficulty functioning. I so hope that does not occur for MANY reasons but he threw out 37 weeks as a possibility. That is only 7.5 weeks away! I know that she is better off inside right now and it is also better for her heart and lungs to go into labor naturally. She is currently breech but she flips all the time. If she is still breech when we have to deliver it is an automatic c-section which is not the best thing for her at all. She needs that vaginal birth to benefit her lungs. While they could do a breech delivery they don't want to chance any distress on her that can be avoided.

He said he would like to administer a first round of steroids to me at our next visit, which will be on the 26th of November. These are to help with her lung development. It surprises me he is wanting to do it so early, given the research I have done. I will discuss it with him more on the 26th and see if there is a reason we cannot wait until 34 weeks instead. I cannot believe we are getting so close. It is such a mix of excitement and fear that is hard to describe. The neonatologists are going to meet with us at our appointment on the 26th and I will look to them for input on the steroid issue also.

Dr. L said that my uterus is likely bruised given the pain I am having at the middle/top of it. Of course, this prompted another lecture about activity, etc. Miles has been sick and wanting to be held frequently and I think that is probably where the aggravation came from. There is nothing I can do about it accept rest, which I will TRY to do, I promise.

We meet with our pediatric surgeon on the 20th. I was mistaken about the date/time of our meeting with them. I will update everyone again after that appointment.

Aria and Miles are both coming off of a nasty cold they picked up at the Rainbow House. It was inevitable that they would catch something given the community living situation we were in. They both had a right ear infection (Miles first and only Aria's second) but that seemed to clear up pretty quick.

Some of you know that Miles burned his hand on October 31st on the clothes iron at Rainbow House. We took him to a follow up with our new pediatrician and she referred us to a burn specialist. She was worried about it scarring in the fold of his hand and limiting his movement. We were so worried. We met with the burn specialist last Friday and they said it looked great and was totally healed, no worries. It has taken him this full week to get more comfortable using it, even though he did not have a wrap on anymore. He would keep it clinched and not open it to pick things up. He got used to using his wrist on that hand when he was needing both hands for something. He is doing much better now. He is so accident prone. If there is somewhere to get hurt he will find it. He really needs a helmet and padding.

Aria and Miles were such angels at our appointment today. I was worried because Brad could not be there, as he had an appt. scheduled for him an hour later in Lincoln. They sat there while the doctor did the ultrasound. Aria likes to look at her baby sister on the screen and asked "what's that" about 10 times. Everyone likes them so much and they really were so, so good and made the solo appointment easy on mom.

I think that is all for now. Thanks for stopping by and reading. I hope everyone has a great Thanksgiving break. Aria turns 3 on the 25th, can you believe it? Take care and be safe during this Thanksgiving time.

These are pictures of the kids playing outside at Rainbow House. Crissi took them when she was in town helping me out.