Life at home

Hi All,

Sorry I have not updated for a while life has been busy trying to adjust to life as a mom of three and getting use to the midnight feedings again. Even after being home for a couple of days Luke and I felt a little shell shocked trying to believe all of this has just happened. If we didn't have to give Norah medication  and the incision on her chest you wouldn't think anything had ever happened to her. So now its just adjusting to having her home. At first it felt like we were bring a newborn home but she is so alert and looking around that we realized she is actually already almost a month old. Lilly and Claire are adjusting well and just love her. Claire always asks if she can pet her head and Lilly will just sit and talk to her. Both the girls had little colds this week so I have been pretty strict on letting them get too close but they did each get to hold her.

 Norah has been dong great since we have been home. She has been eating like crazy. We were told to try and feed her every 3-4 hours. The first night I set my alarm clock just in case. However Norah has this covered and wakes up just fine ( A little too fine) on her own. She is easily taking in an adequate amount. I was a little nervous about how Norah would take her medication but she does just fine as long as we take it slow. 

It has defiantly been a busy first week home. Luke's brother got married this weekend so we were especially happy to be out of the hospital for this. Luke was the best man and Lilly and Claire were the flower girls. My mom came and stayed with Norah and took the girls later that night so Luke and I finally were able to spend some time together when everything was right in the world again and it felt great ( thank you mom again). Thank you again to everyone that has sent your kind words of encouragement and prayers they do not go unnoticed.

God bless,

Luke and Amanda

 

Great Grandma came to visit and hold Norah

 

 Grandpa Saari holding Norah for the first time

Overcomer - Heading home

Hi All,
Well Luke and I received a nice surprise this afternoon. After 2 minor surgeries one major open heart surgery, Norah being intubated for almost a week, multiple medications and blood transfusions, chest tubes and 8 games of word we were discharged home at 1:45pm this afternoon just 12 days after surgery. Shout to the lord. Praise GOD!! Norah has been eating well and gaining weight so out the door we went. We were thinking that we would not be discharged until tomorrow so it was so nice. Our first afternoon home went all right. Lilly was so excited at dinner she stated " Well now our family is back together again." Had to hold the tears in on that one! Please pray that Norah continues to recover well at home and Luke and I maintain our sanity now being parents of three.

http://www.youtube.com/watch?v=z29olPjFbqg

 Going home hat

Dreaming of home

Hi All,

Well Norah and I are spending another day chilling in the hospital watching football today. She met her goal for feedings and we were able to avoid putting the feeding tube back in. For some reason or another though the night nurse let Norah sleep from 1am-7am and never woke her to offer a bottle. So she took enough to avoid a feeding tube but not enough to go home tomorrow. To say the least I was quite annoyed but I was able to keep my mama bear growl to a minimum. I think the surgeon got that covered for me, because he also appeared quite annoyed by that fact as well. I feel pretty confident after hearing him talk the staff that it will not be happening again. So needless to say she will not be going home tomorrow because they still want her eating more and gaining a little more weight ( GRRRR). The docs are saying now maybe Tuesday or Wednesday.  So patience patience patience. For now we will just snuggle in the hospital and be grateful for the progress we have made up to this point.
http://www.youtube.com/watch?v=pJXFakzZLXk

Go Vikes!

Tubeless

Hi All,
Well for the moment Norah is officially tubeless. Norah took down a 50ml bottle this morning and was able to get her feeding tube pulled this afternoon. PRAISE GOD!!!! Now we just need to keep doing what we are doing and hopefully we can get home. Norah also had a follow up echo yesterday and everything with that came back well. The docs are really pleased with how well her repair went.  The surgeon came around this morning and patted me on the shoulder saying "we are getting close." Since Norah is such a peanut she is set up to have a car seat evaluation on Monday to make sure she fits in the car seat and her sats do not drop. We also decreased her Lasix again today as well. We are so grateful to be at this point of just working on building up strength and stamina for eating. Hopefully she can keep up the good work! Thanks once again for all of the kinds words and prayers. Surely God has heard our prayers.
God bless,
Luke and Amanda

http://www.youtube.com/watch?v=du0il6d-DAk

 Norah's no tube hat!

demoted

Hi All,
Well it has been a busy past couple of days. Norah is officially no longer an ICU pt as the surgeon put it, we have been demoted. Never thought that would be such a great thing. Norah is getting better day by day. We are officially off all IV medications and her last central line came out this morning. The only thing we still have in is the NG tube down her nose for feedings. Our next big hurdle will be feedings. To go home Norah needs to take 45-50ml per feeding. At first that didn't seem like to much but she only has the endurance right now to take 15-20 mls at a time. The rest go down her NG tube. Norah has been pretty fussy as well. Most likely related to starting the feedings and getting her belly working again. She seems to be much better today but the nurses keep saying to get our sleep now because she is a feisty one! Of course in good ol' Amanda post partum fashion my body decided not to fully cooperate. I ended up in the ER the other night due to bleeding and a uterine infection. They were able to treat me in the ER and I was able to be discharge that night. I am doing better and luckily the antibiotic I need to be one was actually one that Norah was on after surgery so I don't need to worry about her reacting to it. They had to drag me out of here practically kicking and screaming yesterday, but after a days rest I am feeling much better. Thank you again for all of your prayers and support. We are hopefully looking at being discharged next week some time but it all depends on Norah and when she decides to eat. Hopefully her Mickelson appetite will kick in soon :)

 

Making progress

Hi All,
Norah has had a busy couple of days. Yesterday we were able to wean her off some of her heart medications and one of her sedation medications. Her arterial line and last umbilical line came out.  Both Luke and I were able to hold her a couple of times. Today she was weaned of her steroids and the last heart medication. They took the pacer wires out of her heart. She now is getting a lot of her medications down her NG tube. She is still on a Fentanyl  drip and we are slowing weaning that off too. We tried that a couple of days ago and she started going through withdrawal from the narcotics so we are taking that one really really slow. She did start sucking on a pacifier as well. I had been working all day at it with no luck, then of course Luke came in and tried and she took it right away. So I guess she is a daddy's girl like the other two. If we are able to get her O2 down today later this afternoon we can maybe attempt a bottle. Norah does not do well with fast changes and we have changed a lot the past couple of days so I don't want to rush anything. Her poor skin in all red and blotchy as it appears she has an adhesive allergy, other then that she is making a lot of progress. Hopefully we can maintain it and continue to move forward. Thanks again for the continued prayers and kind words.
God Bless,
Luke and Amanda

 

HI All,

Sorry I didn't get to update the blog yesterday we had a pretty big day. Norah decided to give her dear old mom a break yesterday and decided to cooperate. Her chest X-ray looked good in the morning and she tolerated being weaned on the ventilator so Ms. Norah was able to get her breathing tube out yesterday afternoon! She did beautifully yesterday afternoon and ok through the night. Her respiratory rate picked up a little bit today and she developed a moderate plural effusion on one of her lungs. We are going to continue to monitor her closely and continue the diuretics and hopefully resolve with out any further intervention. But because of that we have to hold off and starting any type of bottle feeding. We are continuing the feedings through the tube down her nose. We tried a pacifier and so far wanted nothing to do with it. She has pretty much lost of suck swallow reflex so it sounds like an occupational therapist will be coming by tomorrow to start working on getting that back.

Lilly and Claire are doing alright. They miss me terribly and it makes this all the worst. I have no idea whether to go home or stay here. I have been home a few time and they did come down yesterday for a long visit and had fun meeting Norah and playing with the toys. Now we are just praying to maintain the progress we have made and hopefully move forward tomorrow.