Relief, Elation, and Gratitude. Miracles do happen.

I did not lose any sleep leading up to Finley’s appointment.  I did not lie in bed worrying. I had peace. That, my friends… is prayer. Thank you.

Finley went in for her MRCP and X-Ray on the 2nd and did great. I knew before we left the hospital that her X-Ray looked great and no evidence of reherniation. (Cheers of happiness).  We were told we’d get a call on Monday to discuss the MRCP. Monday passed. I called Tuesday afternoon – I was trying to exercise patience. I was told Wednesday afternoon.  I called this morning.  Getting a pattern? It was frustrating, but I tried to remember there are much sicker kids that are pulling them in many different directions.The nurse relayed that the doctor didn’t think it was a cyst, but she would call and talk with me later. I was happy, but still had questions. We finally spoke late in the afternoon and wow. I am still spinning. She actually discussed the case in their Wednesday meeting and the whole panel of doctors was ‘unimpressed’ with the size of her bile duct. I am going to side track for a minute. Unimpressed? What funny terms doctors use. Personally, I am pretty impressed by all things Finley. But anyway, I digress. She said that even after conferring with the radiologist again, Finley’s bile duct is at the upper limit for a child her age. Did you catch that? Upper limit. That’s the upper limit for normal. She is still within a normal range, just at the upper end.  She went on to state that choledochal cysts are usually MUCH larger than what they are seeing with Finley’s bile duct. So I asked the questions that have been on my mind.. 1. Could her bile duct have been stretched by the bile obstruction in Oct of 2010.

She said yes. That is actually exactly what she thinks is the reason for Finley’s larger than usual bile duct and that it will actually all work out and become normal as she grows.

I asked if the bile blockage/obstruction.. sludgey bile was caused by the TPN and she said yes. So, as long as Finley doesn’t go on TPN again, that should not happen again.

If you went back to October 2010, you’d know that this pretty much is in line with what Dr Bliss thought. He didn’t think it was a CC afterall. It was Dr K, when he took over our case that took us by surprising saying he thought she still had a cyst after I subscribed to the miraculous healing theory. Though I didn’t agree with him.. he made me nervous with this idea looming out there. I think had I been on board, he would have operated on her and as the doctor said today, she is pretty sure if she operated, she would be taking out a perfectly healthy bile duct. This just reinforces to me that mamas need to trust their instincts. If you have 2 differing doctors opinions, make sure you get more opinions and trust yours too!

I cried many tears of sheer relief this afternoon. Just knowing that this doctor believed what I have been hoping, praying for – just is the best feeling in the world. Elated doesn’t even describe it accurately.  I am so happy that lightening didn’t strike my baby twice.  I know in my soul that Finley doesn’t have a Choledochal Cyst. Either she was healed, or it was never one to begin with. I know this is true.

So we don’t have to go back for a year.. She said we could go back in 6 months for my piece of mind, to which I said, I don’t need it. Finley will be happier with one year. Why subject her to tests just to ease my mind? If she was behaving weird, that’s one thing – but, just for me? No.  She said down the road we’ll even push to 2 years and once it is in fully in normal range, they won’t need to monitor it.

Thank you for praying for Finley. Words don’t even convey the true extent of our gratitude. Your prayers  mean so much. Thank you for loving our family.  Thank you God for answered prayers.

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3.1.11 (For lack of a good blog title today)

Finley is now in the 50th percentile for head, height and weight. A well proportioned girl!  Last weigh in (last week) she was 16 lb, 8 oz. She is loving solids and just gobbles them up. She tries to grab the spoon and feed herself already and is very interested in what we are eating and tries to grab that too. So far she has had oatmeal, squash, sweet potatoes, carrots, and pears.  And speaking of carrots – that brings me to a little side note. On Sunday, Finley started to vomit – 4 times within an hour which prompted us to take to the ER, since I don’t want to wait and see with things like this.  Vitals were looking good and they did an X-Ray which was also very clear and did not show any signs of reherniation. X-ray can miss a reherniation (if big things aren’t up yet) but since they weren’t any other strong symptoms they didn’t do the ultrasound.  She will get that at her next follow up with the Surgeon in April.

Since she didn’t have a fever or diarrhea they don’t think it was a bug – so not sure what it was.  Carrots are not very high on the allergen scale, but some people are allergic. This was her second exposure to carrots, and apparently most reactions occur on the second exposure. Or her body wasn’t ready to digest them. We will take a break from carrots and the Ped wants us to try again in a month or so and see if it happens again.  We have her a appointment with her Ped tomorrow for her belated 6 month apt, a vaccine and her Synagis.

My continued prayer with each breath I take is for her not to reherniate again – I think all CDH parents pray for this every day. Some days are easier than others to not obsess over it. Right now I think I need extra prayer to not worry about it.

I have put together a team for the March of Dimes, Walk for Babies on April 30th in Portland. If you are local, join our team – and/or if you are able, please donate. http://www.marchforbabies.org/team/t1526937 (Team name: Oregon Stroller Strides) I remember walking in this event last year, just weeks after receiving the diagnosis for Finley. It was very powerful seeing all the shirts in honor of children, and in memory of. This year I will walk in honor and celebration of Finley. (amen!)

Thank you for all of you that pray for us and love us. I am always so thankful for all of you.

 

Post Reherniation Check-up

We spent a lovely 3.5 hours at Emanuel this morning as Finley went to Diagnostics to get her ultrasound to look at her hernia repair and bile ducts, went to Surgeons  office, waited, got sent back to Diagnostics since they forgot to order Chest Xray, back to Pediatric Surgery office, waited, then got to see Dr K. They then wanted to send us back for blood work, but I opted for another day.  The good news is that everything looks normal on the hernia – no signs of reherniation. Her bile duct is still larger than the normal range – some debate on whether it was bigger than last time – probably the same size. That is something that long term could turn into something (I didn’t even ask to hear a list since I don’t need those things in my head) or could be nothing. They want blood work to check her billirubin levels to get a baseline so we will go next week for that, and then we go back again in 6 weeks for another ultrasound. Dr K said that when she is older and bigger he will do another type of scan that allows him to better map her anatomy, but for right now, in the absence of any changes or issues – we will wait and see. (And pray.) Everyone at the office just loves on her so much and she just loves the attention. When we are sitting in the room waiting, Finley is staring at the front office ladies to make them look at her and then she smiles. So all in all, a good visit and a huge praise to God!  My daily prayer is that she doesn’t reherniate again and for her bile duct issue to be nothing.

She is up to 14 pounds 9 ounces today, so she is gaining great. Another praise.

I would like to ask everyone to go and vote in the Pepsi Refresh Contest – the Idea would give $25K to CHERUBS to help CDH families… all you have to do is vote for the idea and get others to vote too.. we are in 21st place and only ideas in the top 10 will get funding. I just think about how fortunate we were to live 15 minutes from a hospital with ECMO and we had the support of friends and family. Many others have to travel hundreds of miles to be at a suitable hospital – that drains finances on top of the cost of the hospital stay. Please vote!!!

http://www.refresheverything.com/cdhfamilies

5 months old today!

My little peanut is 5 months old today! I am so thankful that we are marking this important date at home and not in a hospital. I am so thankful to have my precious baby at home with us. She weighed in at 13 pounds 11.5 ounces yesterday – so she is back to the weight she was at the Wednesday we were admitted to the hospital. Since the surgery she actually nurses longer, so I think hopefully, she might gain even better now. Each day it is getting easier to NOT worry and obsess over reherniation. If it’s going to happen, I can’t stop it. I just need to enjoy each day we have at home and am thankful for where our journey has gotten us.  Last night I was sitting on the couch with Finley asleep on one arm and Rowan nestled in the other arm as she watched a cartoon. I looked down at both my sweet girls and felt complete.

Bliss… Joy…Happiness….Gratitiude…

I/O

Exciting news…..

1 oz breast milk in at 6:15 PM

Code Brown at 6:40 PM!!!!!!!!!!!!! (I did take a picture since there has been so much talk about this and anticipation. One day she will be a teenager and hate me- but I will spare all of you!)

UPDATE 8:00 AM 1/2/11 – She is up to 2 oz and doing great!

Is it really New Years Eve?

Many people are planning their big New Years Eve celebrations, picking out clothes, deciding what to eat, what to drink, where to go…  we are waiting for our little girl to poop. My Facebook status update is asking everyone to pray for poop. As soon as Finley starts moving things along that means I can nurse her which will comfort her as well as get her stronger. But we need some action first. It can take a little while for the bowels to wake back up after being messed with, and the morphine doesn’t help – but Finley is an overachiever, so I am praying for it to happen quicker!

This morning, impatient Miss Finley decided she was done with her OG tube (stomach tube that is not fun to have down your throat) and after a night of slowly pushing it up with her crying decided to yank it out. Girl makes things happen.  Everyone was quite amused at her and since they were planning on pulling it later today it wasn’t a problem. We also got rid of her Foley catheter and since she is on such low oxygen (.5) will probably lose her nasal flow by end of day. She doesn’t really need it except for when she gets really mad and her oxygenation drops into the 80s.  After that, once she is eating, next out should be the IV’s. Poor girl has one in each arm. Then she will be once more tube free! She is recovering nicely from surgery her blood work came back good- numbers are back up. Fever was gone by later last night. She does have some fluid accumulation near the repair site, but that is normal as long as it eventually absorbs into her body and she doesn’t develop any infections.

I will have to update our 2010 timeline to include;

December 29th – Re-herniation discovered and hospitalization began

December 30th – Re-herniation repair & Dr Bliss’s last day working in Oregon. (LA Children’s and Cedar-Sinai are EXTREMELY lucky to be getting this doctor).

Happy New Year’s Eve everyone… .thank you for the many, many prayers in 2010. Here’s hoping that 2011 begins with our last hospital stay ever. May God bless you all.

**A few of you have asked for a Hollis update – Hollis is really well! He just celebrated his one month birthday and is now in an open crib and on a nasal cannula (Santa treated him right). He is going to be resuming feeds soon – so pray for him to learn to eat and nurse quickly so mama Kelly can hurry up and get her “Captain Awesomepants” home.