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.  



 

 

 

 

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

She's here

Hi All,

Thought I would give a quick update. Norah is here she arrived 9/6/13 at 3:08 in the afternoon. I went in Thursday night to be induced. Labor and delivery went well and I am recovering just fine. She has Auburn hair and I have not seen her eyes open yet so I don't know what color they are. She weighed 6lbs 13oz.

Norah came out screaming. I only had to push once :) They were able to put her on my belly for a short time and Luke was able to cut the cord. She was shortly then taken to the next room with the resuscitation team was ready and waiting. Her sats were low in the 40's-50's so she did need to be intubated right away. They put some lines in and gave her the prostaglandin. Unfortunately that was still not enough and she needed to be brought to the cath lab immediately to have the septosotmy done. Luke went with her right away but I needed to go back to my room. I had some bleeding problems and needed to let my epidural wear off so it prolonged my recovery time. I did not get to see until 5 hours later. She was only suppose to be in the cath lab for 20 minutes but it turned in to 2 hours. The first balloon procedure did not provide a large enough whole and she needed to have the procedure done again to make the whole bigger. They still struggled with her sats but eventually they returned her to the NICU where she had a fairly stable night. She did need a blood transfusion and she is on two different medication drips among many other things to support her blood pressure and nitrous oxide gas to help with the  high pressure in her lungs. The high pressure in her lungs is not a common thing for her type of heart condition and has caused a lot of her complications.

She did not produce any urine overnight so they needed to place a foley catheter. Unfortunately even that small of a procedure was too stressful for Norah and her blood pressure dropped and sats dropped again and she never really recovered. The Neonatal doctor came to see her and decided to call the surgeon. The original plan was for Norah to have Surgery this Tuesday. The surgeon came to see her and decided to have her transferred to the Cardiovascular unit right away where the cardiologist and cardiac intensivist are here 24/7and they can monitor her more closely to decide if she needs her surgery sooner. As of right now she is borderline stable. Multiple medications and lab draws. They are going to place a few more central lines and exchange the ET tube from the one in her mouth to one in her nose. This way she was be totally prepped for surgery and they will be ready any time should she need it urgently. Things literally change by the hour. But we are told she is taking baby steps in the right direction.

Thank you all so much for the continued prayers and support they mean so much to Luke and I.