Big End of Week

We woke up this morning to the wonderful surprise of snow. It continued to fall most of the day. My usual snow loving dogs preferred to spend most of the day curled up on the bed but I did coax them outside for a few moments ...

Meanwhile Angela stayed snuggled up in her bouncer with the new blanket she got from Primary Childrens at her last visit. She loves it.Yesterday we were blessed and got our H1N1 shots thanks to the diligence of Brad's mom. She tracked some down for us a week ago and we were able to run in and get them at a local pharmacy. Woohoo!

Thursday Sammie came in with a mouth full of broken glass. Somehow a glass Starbucks bottle ended up in our yard and broke. So when I realized what she had in her mouth I quickly set Angela down and went after Sammie to get it and check her poor mouth. There was blood on the glass but her mouth didn't look bad. After I got the glass I could I realized I didn't hear Angela downstairs. So I went down to find this ...


Angela hugging a pillow and loving A League of Their Own. It was so cute. She was so happy. So after dinner we came back to finish the movie :)

All Good News

Yesterday Angela and I went to visit the Cardiologist for the first time. She was the perfect angel. I am so incredibly grateful for Heavenly Father's help! She fell asleep moments after getting her in the car and all the way to the hospital. She was a little apprehensive when she had to have a chest X-Ray, but only cried when they had to turn her on her side away from me. Then we had an EKG done and Angela was so amiable. She didn't even cry or get upset when the thirteen sensor stickers had to be removed leaving her poor chest red as a strawberry. She even helped pull off a couple.

The doctor was so kind and said that he would like to do an ultrasound of her heart to check on everything, but because it was almost 5pm he most likely wouldn't be able to find a tech to stay. Not to mention that most will not do infants and almost all will not do infants unless they are sedated. But he said he would try and walked out to go check. When he left I said a quick prayer and boy was my prayer answered! An incredibly sweet woman stayed late and talked to Angela while she performed the ultrasound. She was so patient and didn't mind Angela's wiggles at all. What a blessing!

We got the chance to look at her Sleep Study results from the end of October and I still can't believe it! Her second sleep study done at the end of August showed an average of 117 apneac events an hour with the lowest oxygen saturation reaching 68%. This was not good at all. They say the average baby should have no more than 1 event per hour and should not drop below 90%. Well her results showed that her last test done on oxygen and on her tummy (like she is at home) showed only 7 events an hour with the lowest drop in oxygen saturation being 92%! It's a total miracle.

The Cardiologist said her chest X-ray showed her heart at normal size and her lungs clear. He also said that her EKG and her ultrasound looked good. She still has the small hole between her left and right atrium but we are hoping to be one of the 80% of people who it randomly closes for. Otherwise even with the hole, the leaking in the heart wasn't even enough to measure! And her heart is not thickened due to pressure differences, and in fact the blood pressure in her heart looks fine! Another miracle!

And on the way home she slept almost the whole time, even through terrible, awful traffic only to wake up hungry less than a mile from our home. Even the dogs were a total blessing as we got home several hours after their dinner time.

So at this point it appears we are free and clear for right now from jaw surgery. We are keeping our fingers crossed and prayers strong as we wont know about the REM sleep results until we talk to the sleep doctor in December, but Angela is doing so well! I don't think we could have had any better news! The recommendation is to lower her oxygen level, which we wont do until all doctors agree, but things are looking great!

We are so grateful for all of your prayers and support and hope to bring you more good news about Angela as she continues to grow and develop.

And her measurements are:
Weight: 13 lbs 6 oz
Length (soon to be height): 24 1/2 inches

A Medical Summary

Updated 11/11/09

I wanted to post a summary of our experience with Angela's Pierre Robin so that others with the same issue could see what we have gone through so far:

My daughter was born 5 weeks early this year. She was born septic and with the Pierre-Robin Sequence (PRS). It's not a disease or an illness but a grouping of physical characteristics including a cleft pallet and small jaw.

While she was diagnosed with PRS by a Geneticist at Primary Childrens they did not know of the link between PRS and sleep apnea. It took a RN who was a former sleep tech to recognize and confirm what we had suspected all along - that my daughter momentarily stops breathing in her sleep.
In fact after her first sleep study she was characterized as having "severe sleep apnea" even though the NICU didn't even recognize it nor accept it for weeks. They said that it wasn't real because her alarms never went off. What they didn't know was that there is a 20 second delay in the programing of their monitors and as her apnea happened in mere seconds it didn't sound.
As soon as we had the horrible sleep study results they scheduled the tongue lip adhesion. I prayed about it and it just didn't seem right to me. When I was around my daughter while she was on oxygen in the NICU it seemed to stop the episodes, but since they didn't do the sleep study with oxygen they didn't see that.

I called the surgeon and told him how I felt and against the doctor's orders, but with the surgeon's blessing, we canceled the surgery and sent her home on oxygen (30 days after birth). It turns out that with all we know now according to the sleep doctor/pulmonologist and the Ear Nose and Throat Specialist (ENS) that the tongue lip adhesion wouldn't have made any difference.

Well we went back for a follow up sleep study without oxygen and somehow the surgeon didn't read the results and said it was okay to pull her off oxygen. It was because the study had said she "showed great improvement." It wasn't until after my pediatrician called concerned about the study results that we knew something was wrong.

I called the surgeon back and he, after rereading the study, wanted to do the jaw surgery. But after the Ear Nose and Throat Specialist (ENS) saw it (which he in the NICU had said my daughter couldn't possibly have an obstruction) said she needed a tracheotomy.

After praying about it everything felt wrong. We went to see the sleep doctor/pulmonologist and got more of the whole picture from him. He says the results from her sleep studies, while off oxygen, show my daughter still has sever obstructive and central sleep apnea with hundreds of episodes every sleep period. The problem he sees is that her REM sleep and the blood pressure in her heart have been affected. By her brain perceiving a block it has cut the amount of REM sleep she has so it can focus on her breathing which, if allowed to continue, may disrupt her future cognitive abilities. Also by perceiving the airway block it doesn't pump blood to the lungs and causes a pressure build up in the heart. This can cause irreversible thickening.

The sleep doctor said that if she showed heart damage or if her REM sleep results did not improve while on oxygen that we would have to do the jaw surgery as he feels that she is too young to have a trach if we can avoid it. He says that an infants chest walls are not strong enough and can cause even more difficulty breathing with a trach.

We went to see the Cardiologist and my daughter's heart, thankfully, looks fine. She still has a small hole between the left and right atrium, but the amount of pressure difference and leaking is too minimal to even measure. Her heart has not thickened and is otherwise normal.

The latest sleep study done on oxygen and on her tummy, like she sleeps at home, showed a drastic drop in the number of apneac events. She went from well over 100 an hour to 7! And her lowest oxygen saturation on her previous sleep study was 68% and this last one was 92%! While we are still waiting to get the results pertaining to the amount of REM sleep she got, we are hopeful that the jaw surgery can be avoided.
One thing is for certain though, that we will be fixing the palate at about a year of age. We just keep praying and enjoying the wonderful little person that we now have in our lives. She is so incredibly special and we so grateful for her.

Rockin and a Rollin

Angela has been able to roll from her side to her back and back and forth for a long time now. A couple of days ago though I put her in her crib and she went from her tummy to her side for the first time! Look how proud she is!

Then a day later I came in to get her from her nap and she had rolled from her tummy to her back!As most know Angela has to sleep on her tummy so her not rolling over earlier was a true blessing. We are still truly blessed as she hasn't rolled to her back during the night yet, just after naps.
When she starts rolling over at night we'll be looking for some sort of inspired solution, but until then we are just counting our blessings :)

Avery's Blessing

This Sunday our new little niece Avery was blessed. Brad went with the whole family to the church and got to participate in the blessing.

Avery looked beautiful in the amazing dress that Grandma A made for her.

We can't wait for Angela to wear one of Grandma A's incredible hand made blessing dresses for her blessing (probably April of next year, still TBD). Angela and I joined them later for a lunch party to celebrate.

I was bummed I didn't get a picture of the two little girls together, oh well. :(

Look at what we saw when we got home ...

What a fun and busy weekend we had! I'm looking forward to a "normal" week this week. Hope you all had a great holiday too! My little baby loves her nightgown cocoons :)

Trick or Treating

Brad and I had a long discussion about what to do for Halloween ... do we stay at home and pass out candy? What do we do with the dogs? The baby? Does he go to his parents to watch the football game? Do we go over to their house for traditional chili in pumpkin bread bowls? But what do we do with the dogs? Brad had the brilliant idea of taking all of us, including the dogs, over to his parents so the dogs wouldn't terrorize the neighborhood kids while at home, we would get to have chili dinner, the dogs would get to play with their cousin dog, and as only Brian and Tonya would be over at his parents we would cut down on germs. So we did the lame neighbor thing and put the candy out on the front porch. Next year guys! Really, we'll be around next year! So we all piled in the car ....Then the dogs got to play ....Angela got to see some cousins ...Aunt Jenn...Grandad ....Aunt Tonya ....And mom got to eat some yummy chili while Dad watched football. It really worked out well. I was bummed though that we missed out on seeing all our adorable neighborhood kids. Next year! Hope you all had a happy and safe Halloween!

Happy Halloween!

5 months old today ...




Look who came to our photo party ...
HAPPY HALLOWEEN!