Two steps forward one step back

Hi All,
Well last night and today did not go exactly how everybody had mapped out for Norah. As the Doc put it "The plan was to get fluid off Norah and take out the breathing tube but somebody forgot to tell Norah that." Last night she developed what is called flash pulmonary edema most likely from the blood transfusion she received. Basically she developed a large amount of fluid in her lungs very quickly. She had slowly been accumulating more and more fluid through out the day yesterday as well. The docs had to hand bag her for a while and then start her on a Lasix drip and evacuate any attempt at trying to wean her off the ventilator. She turned it around after that but I took it kind of hard because she is a week old today and I was really really REALLY looking forward to holding her. They did switch her drip to a different medication and she seems to be responding better to that and peeing out a lot of the fluid. So the new goal is hopefully taking the breathing tube out on Sunday. I made sure Norah was aware of this plan now ;)

On the other hand we were able to take out the chest tubes, pacer wires and arterial umbilical line. We were also able to start giving her some of my breast milk through a feeding tube in her nose. That was nice to see and it makes it easier to get hooked up to the mother sucker ( aka breast pump) ever 2-3 hours. I have a love hate relationship with that thing. We also started Norah on some new sedating medication as she built up a tolerance to the Fentanyl. She seems to be resting more comfortable now.

Luke and I ran home today to spend some time with the girls. A nurse reminded me that Norah will not remember this but my other children will. I thought she had a good point so Luke dragged me out of here for a couple hours. I hate leaving the hospital with out Norah and I hate not seeing Lilly and Claire. So dang it if you do and dang it if you don't.

I was able to get a hat on Norah today for a short time. I opted for the bunny hat featured on the blog. It was the first hat given to me by my mom.

eyes open

Hi All,

Well Norah had a stable day. She spent most of it just recovering from surgery and slowly trying to get the extra fluid from her body and wean her from the ventilator. For the most part Norah's arrhythmias have slowed down but she is on medication for it. Once in a while she will have a little something. Only time will tell if this was just a post-operative thing or something that we will be dealing with for a while. None of the docs seem overly concerned at the moment about it and believe me I have asked every single one of them that walk through the door. Her hemoglobin was a little low tonight so she is getting a blood transfusion. Norah has opened up her eyes today and has been a lot more alert. I could finally see that she has greyish/ blue eyes kind of like Claires so I suspect they will turn brown.
Both Luke and I miss the others girls terribly. We have been blessed by my parents who were will to come and stay at our house and take care of the girls and try and maintain a sense of normalcy. Overall the girls are doing well. Lilly still loves kindergarten and I can tell already what a difference it has made for her. She is picking up on things so fast. The other night I had the opportunity to run home and spend a little time with them. Today my mom brought Claire to the hospital. She was able to see Norah again but mostly Luke and I were able to take her for a couple of hours and spend some time with her. You don't realize it but they can change so much in a week.

Tomorrow we will attempt to remove the breathing tube and chest tubes. Once those things are out we should be able to start loosing a lot of the medications. As of right now she has 16 different pumps going.

Once again thank you to everyone for the kinds words of encouragement and prayers they mean so much to us.

God Bless,
Luke and Amanda

Hi All,

Norah had her surgery today and according to the surgeon he said it could have not gone any better. Apparently she came right off of the bypass machine and her heart started right back up on it's own. She is pretty heavily sedated and has not really moved a muscle. She is hooked up to multiple medications. Shortly after getting back to her room Norah started have runs of V-tach, or a scary heart rhythm. The Doc said it is not uncommon for the heart to have some arrhythmias like her after surgery due to the heart being irritable. They started her on some medication to "quite down the heart." It has helped some but she is still have some runs of the arrhythmia. I nearly faint when I see it, but the Physicians are aware and are treating it but not over concerned at this point. The hope is that as her heart heals things will settle down  more and the issues will resolve with time. Norah will most likely be on the ventilator for a couple more days due to the rocky course she had leading up to the surgery. Since she has been intubated for so long already it will take time to wean her. They do not want to rush anything. Thank you all again for your kind words and prayers. We are so thankful to have this day nearly over and look forward to getting Norah healed and home.

Day of Surgery, No hats allowed today :)

First hat



Hi everyone, Still a pretty uneventful day. Surgeon came in again tonight and once again said Norah will be having her surgery tomorrow morning at 8:30. Norah was a little bit more frisky today and we even got a shot of her with her eyes open. When ever they try to look in her eyes in the past she squeezes them so tight they can not see them. Also we were able to break out the first hat. It's a welcome to the world hat. It was pretty big on her tiny head. 

 

 

 

 

Patience is a virtue

Hi All,

Well we received a call last night at 2:00 in the morning that Norah's surgery was canceled. Apparently the surgeon was in a different surgery yesterday from 7:00 in the morning until 2am that night and did not feel it was safe for him to proceed with Norah's operation today. The good news is that Norah is stable enough to safely wait another day. We understand the reasoning and obviously do not want a fatigued surgeon but we are both frustrated with the way things played out. I was pretty upset when I heard the news and the nurse could tell so she arranged thing so I could lay with Norah for a little while in her bed. It was bitter sweet. I was able to be next to her but just didn't feel close enough. Please pray for our endurance today and for my patience. As stable as she is now I know we can not truly move forward until she has the surgery, so waiting another day feels like another year. Also keep the little girl and her family a few doors down from us in your prayers. She endured a 20 hour surgery yesterday. I don't know age, name or diagnosis but I do know she is very very sick.
The new plan is for surgery tomorrow. We do not have a time yet. I feel like I will believe it when I see it.
Roman 5:3-5
We also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.
http://ronmoore.org/hope-rising-romans-53-5-devotional/


God Bless,
Luke and Amanda

making progress

Hi All,

Another solid day for Norah. We were able to get her off her epi drip and have significantly decreased her dopamine drip. ( Drips that support her blood pressure). She was also getting Nitric Oxide through her vent and that has been significantly decreased as well. I was able to help give Norah a bath and wash her hair. I was even able to kinda of hold her. The nurse let me lift her off the bed while she changed the sheets under her :) Tonight I helped change a diaper. All good things in my book. Surgery in planned for tomorrow morning at 7:30. The surgery will be any where from 4-8 hours. Thank you again for all of the prayers!!

Hi All,

Things have definitely settled down from the day before. Norah had a pretty uneventful day and we are soo grateful for that. Her sats have leveled off to the mid 80's and blood pressure is still holding steady. She still is on more support then most babies with her condition need so most of the day they have been trying to wean her down on the medication. They have been able to do that some but not to much. They placed the central lines and switched the ET tube. She tolerated all of that just fine. She is prepped for surgery.Plan will be for her to continue weaning off the medication and have surgery on Tuesday. Thanks again for all of the prayers and support. God has certainly heard our cry and has answered many prayers.

 http://www.youtube.com/watch?v=YLwHElK29MA

God Bless,
Luke and Amanda