Month: December 2010

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.

Here we go again….

Yesterday morning I noticed that Finley was breathing a little wierd. Sort of gasping, taking shorter breaths than normal, and acting extremely fussy whenever I tried to lay her on her back. I called my Pediatrician and they had me come in right away. Two chest X-Rays later we were on our way to Dr Bliss’s office because there was some concern that there was some “haze” in front of the left lung (later to be determined as intenstines) and they wanted to assess her themselves. We were admitted by afternoon and were told that depending on the ultrasounds surgery would be either within 36 hours, or even next week. Sometimes these reherniations are considered elective surgery. Not for us though. But that’s ok… I can feel God’s hand in this because today is Dr Bliss’s LAST DAY. Remember when I said maybe we were done with needing him? Well, we weren’t and God made sure we were back in the hands that he chosen to save our daughters life. Tuesday Finley was fine – I didn’t notice anything out of the ordinary. Wednesday, there was something off and I was trying to decide, “do I call the doctor, or am I being hypervigilent?” I decided better to be hypervigilent and “that mom” rather than ignore something important and I am glad that I did.

Spent the night in the Peds ward with Finley- waking to pump every 2-3 hours and feed her sugar water. Poor thing wasn’t allowed to nurse from 10:00AM on and she was not happy about it. I feel bad for the people we were sharing a room with. Finley has such an amazing spirit – she can smile and even laugh in the midst of all of this. She is such a smiley, happy baby. Oh ya- and still a fighter. First try to put in an IV took 7 tries. The veins kept blowing. Around 3AM she decided she was done with that IV.  Jon went with the team that time because I couldn’t watch again. He doesn’t even know how many tries it took- but I know they came back 50 minutes later.  Everyone kept remarking how strong she is – at one point there were 4 people holding down my 13 pound baby. That was probably the worst part of yesterday.

I am being long winded – I guess blogging is helping me keep my mind occupied. She is in surgery with Dr Bliss right now. He was going to enter through the belly (laproscopically) which is supposed to be an even easier recovery than the thorascopic (chest) approach. He will either fix it with a patch or he did mention sewing skin to skin- so I am praying for God to “show off” again and make it so that this time Finley doesn’t even need a plug or patch, but he is able to sew the diaphragm back to itself.

I taped Finley’s Jeremiah 29:11 verse back on her crib. She also has a few of her friends that were with her on the journey last time again (ladybug bear and monkey). And most importantly, God is here with us. I felt so weary and weak last night- but I am already feeling stronger. Thank you prayer warriors for lifting us up. For your intercessions on Finleys behalf- again.

Be still……

Praying for – smooth surgery with NO complications. The ability for Dr Bliss to do this laproscopically and not open her up, praying that he doesn’t have to leave to do another surgery (there is a boy in the NICU that might need emergency surgery and he mentioned he might have to leave Finley if that is the case), for a repair that will NOT reherniate EVER again, and for a miraculously fast recovery.  Amen.

2:30 PM Update: Finley had 2 holes that required repair. Dr Bliss placed a Gortex patch over both holes, and went a little bigger to reinforce it better. Finley is in recovery and we are waiting to see her now… Surgery took about 5 hours – he said she really made him work but she did great. Once again, we are so thankful. I am overwhelmed by the prayers, love and support we have received today.  Thank you. Again. 🙂

Just praying now for a smooth recovery – for her bowels not to be too upset and to start working quickly.  No post surgical complications.  For her to be able to return to feeding quickly. I have a feeling my little superstar is going to impress us once again…. with her divine intervention.

Best gift ever…

I am so thankful. I keep reflecting on that in the final days of 2010 and am in complete awe of the journey we have been on.

January 1st, we began the year with me pregnant and oh so sick. All I could think about was just getting through that first trimester until I hit that magic spot when the medicine finally starts to help me.

March 31st  is the day when we found out that our baby was a girl (we had already agreed on the name Finley, so we looked at the ultrasound and said her name with joy) and then 5 minutes later we heard the words “congenital diaphragmatic hernia” for the first time.

April 7th, we met Dr Bliss.

August 12th, Finley arrived and began fighting.

August 30th, Finley had her repair surgery.

September 29th, Finley came home.

October 8th, they diagnosed a Cholodochol Cyst – that would be gone 3 days later.

We have been witness to several miracles and I am humbled and so grateful for all that God has done for us. I have learned so much this year and I am a changed person because of our journey and because of Finley and for that I am thankful. I appreciate all the people that have walked, loved, and prayed with us this past year. My heart aches for those that lost their babies this year and I will continue to pray for all the CDH families.

The best gift ever is the two, healthy, beautiful daughters I have been blessed with. I don’t need anything more in this life than this wonderful family and friends I have. Family, people – that is what is important. How we can touch and carry one another through the difficult times and rejoice together in the good.  Thank you God for being there for us in so many ways throughout this year.  I am excited for a new year which will bring many new milestones for both girls and I can’t wait to share them with all of you!

Developmental follow up Appointment

On Friday, Finley had an appointment with Pediatric Developmental for follow up which consisted of a play session “testing” to see what Finley could (and could not) do, physical exam, and  going over a questionnaire which covered what I am seeing at home.  Overall, she did score well and there are no obvious areas of concern right now. She did get a referral to physical therapy because she still tucks her thumbs more (right more than left) than she should (which makes grasping toys more difficult) and we want to get on top of that now so that it doesn’t hinder her development. Also, we were told based on her anatomy and reflexes Finley shouldn’t use a jumparoo or exersaucer until she can pull herself to standing because they can hinder her physical development.

Of course, we had to stop by the NICU and see some of our nurses. I met a gentleman who, 20 years ago had a 1lb 1 ounce baby daughter in the NICU (She went home after 6 months).  Now he comes every year to play Santa to the NICU babies. He put it best, once you spend time here – they become part of your family.  I have lots of love for everyone at Emanuel!

Date night tonight with the hubby. We may actually get to have an entire conversation. And tomorrow, a date with Rowan to see The Nutcracker.

Finley is now 13 pounds, 5 ounces!

4 month birthday!

Amidst the flurry of holiday activity at the Dooley Household (Getting Christmas cards ready to send, baking Holiday Cookies, etc) I thought I would pause today and blog on Miss Finley’s 4 month birthday today.  4 months old – wahoo!! We have been home longer than we were in the NICU at last. Today’s photo is from our most recent photo shoot with the talented Michelle Redfield of Casual Camera Photography. I really have nothing new to add since my last post- Finley is just doing awesome. We have her first follow up appointment with Emanuel Pediatric Development and Rehabilitation on Friday to check her for developmental milestones and try to detect delays early. Hopefully that will go well and they won’t find any major issues.  I think she is just perfect, but perhaps I am biased?

Baby Hollis had his surgery on Friday and is doing well! Need prayers now for him to continue to heal, be able to come off the vent and begin eating.

Today is National Children’s Memorial Day. CHERUBS is asking everyone to please light a candle at 7:00 pm in your time zone in remembrance of the children lost to CDH. Today also marks the one month passing of Heath, please remember these families in your prayers today.

4 month well child appointment (one week early)

Miss Finley

We had our 4 month well baby check today and got a DTP vaccine and her Synagis vaccine.  Her pediatrician is very happy with how well she is doing developmentally as she is already doing most of the 4 month items and even some 5 month things. I keep hearing “if I didn’t know already what she had been through, I just wouldn’t believe it.” How that makes my heart burst. She weighed in at 12lbs, 12.5 ounces and 24 3/4 in long.  She is just a little bit below 50% for weight and solidly in the 50% percentile for height and head. The Dr is happy with her growth. I feel like we won the lottery that she is doing so amazingly well.

It feels like we left the NICU a lifetime ago even though it only has been about 2 months. After the appointment, I was thinking about the day the doctor was trying to tell me we were running out of options if she didn’t respond to the Viagra and how ECMO might be off the table soon and how he was trying to tell me that things didn’t look great and look at where we are now. I am so thankful. Is rejoiceful a word? 🙂

Philippians 4:4 Rejoice in the Lord always. I will say it again: Rejoice!