Giddy…..

Giddy is the word that best describes how I have been feeling since I got the call on Tuesday that Finley would not be needing immediate surgery. Giddy. Euphoric. Joyous. I have just held Finley in my arms and gazed into her sweet face and cried happy tears and yelled THANK YOU to God more than once. What an amazing answer to prayer.

AMAZING!!!

The results were inconclusive. Her common bile duct is slightly larger than normal, but not as large as it should be to clearly be a choledochal cyst. So they are just going to continue to watch it. The Nurse said that probably wasn’t entirely the news I was hoping for and I said – it was perfect. I can wait forever if it means Finley doesn’t have to have another surgery. God is revealing himself in the waiting.

Thank you for praying for Finley… we are so blessed by your prayers and I hope you are as blown away as I am by the fruit of those prayers. Wow. Giddy.

My little ladybug Finley...
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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.

Day 2 post-surgery

She is holding pretty stable which is such a blessing! There have been some ups and downs (collapsed upper lobe of her right lung this morning due to blockage – but they already resolved that and it is inflated back up) but everyone seems to be very positive and encouraging about how she is doing for her second day after surgery.  She has been down to as low as 35% oxygen and is tolerating being handled pretty well- which means her PH hasn’t come back with a vengeance post-surgery.  The main concern has been her CO2 levels, which are now being managed well and are back down, so they may start trying to wean the vent back down so that we can try to get back to the conventional vent. The surgeon says that once she starts pooping again they will start introducing breast milk to her – which could be as soon as the next few days!

I know she is still a critically ill baby, but I feel like I can already see the light at the end of the tunnel – and even though I know we still have a long road ahead of us (they say we could still be here another month) I just feel God’s hand protecting us.

Thank you for all your continued prayers, support, and messages – we are so very thankful for everyone in our life and we just feel so blessed. And all those of you that don’t even know us, but have been holding up our family in prayer – I am humbled and moved.  Thank you.

The Day After

Finley is back on the high freq vent – slightly higher settings now to try and blow off her CO2 levels. Again, they say this is to be expected given the trauma of surgery and this was her problem from the very beginning. So it is natural that we start here again. Nurse Debbie last night said that since we got this under control last time, she would expect that as she settles in and begins to recover from surgery, this should subside again. So prayers for her to continue to stabilize and be able to eliminate her CO2 again. Pray for her body to recover from the shock of surgery and heal. Her right lung didn’t look “too good” on Xray this morning – which I think means it hasn’t expanded yet and started to work, but that can take some time as well.. So we wait.

“Be still….”

4:47 PM UPDATE: Finley has had a pretty stable day and they are pleased with how she is doing post-op. They haven’t had to increase the vent settings any more and she is responding well – her CO2 levels are back in the 60s and her oxygen needs were even down to 38% for a while.  I am hopeful that each hour, each day she just keeps getting better and maybe she’ll be able to get her first taste of breast milk in a few days.

Successful Surgery!

I am overjoyed to announce that Finley’s surgery went really well! The surgeon was able to do it thorascopically and he said that Finley’s vital signs and numbers were really good throughout the surgery.  God is AMAZING! God is good – We are  sooooo happy!

The short version: She had stomach, intenstine and spleen up – but they moved down really easily. Her moderate sized hole was repaired with a plug. She had more lung hiding behind behind the organs – so she has a decent amount of lung!! He thinks she should have a easier recovery because of this, but of course gave the caveat that every baby is different and you can’t predict what they are going to do, but he felt very positive about the surgery and her recovery.

That’s all I have in me for now – I am in shock and overwhelmed with happiness that we have made it through this second LARGE hurdle. I know we still have a lot ahead of us, but I am going to rejoice in all the blessings of today. God has truly met us in this and I have felt God’s love and his promises throughout this journey so far and I know he will continue to be with us. Thank you for all your prayers – you got us through today.  We feel so loved and protected.

UPDATE 10:50 PM – She is doing pretty well, but her CO2 levels are very high (120) so she may need to go back on the high freq vent for a little while. They say this is not unexpected… Hopefully it will be for a short term and in a few days we will be back on the regular…