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.

Abbott Day

Hi All,

I know it has been a while since any updates, but luckily no news is good news. I had a gap with no appointments thus no news. My gap has now closed and I will be starting weekly testing for the baby.

Yesterday Luke and I had what the clinic refers to as our Abbott day. We had consults and appointment from 10:00 in the morning until 3:45 in the afternoon. The morning started out with a growth ultrasound, Biophysical profile and another Fetal Cardiac Echo. All three of these test are down in ultrasound. Norah is still in the 35% and they estimated that she weighs around 3lbs. The perinatologist was happy with this and had no concerns. I still can not tell you what the biophysical profile is but we had one and apparently it went well. I was excited because during the ultrasound the tech did some 3D images for me and I was able to see her face perfectly. It was like seeing a star in the dark sky. Her face looks perfect and she looked beautiful. I was so grateful she did that for me because I am pretty sure that was not on her agenda of images to obtain. We also met with the perinatologist and had a non-stress test. That test was normal and the Dr. really had nothing new to add. He was a very energetic man and I later learned that nurses refer to him as Wild Bill and I could see why. I had a hard time not laughing while he was talking to us.

We also did another fetal echo and at that time met with the pediatric cardiologist.  This was a different cardiologist then the ones I have seen previously. During the echo the Dr. thought he saw some new malformations but was not completely sure. He assured me that they were just technicalities and they did not really matter and would be treated the same. However, we later met with the cardiac surgeon who did not share the same opinion. Apparently if these new malformations exist Norah may not be able to have the atrial switch and would have to have a more complex surgery that may also need to be followed up by future surgeries. Also the previous cardiologist thought there was some pulmonary stenosis or PS present. That also would change things. However this last cardiologist did not mention it. So really I have no idea. In reality we have had three different echos with three different Cardiologist and they all saw something a little different. The surgeon explained that they would do another echo after Norah was born and that would give more definitive answers and would direct him on what surgery would be appropriate. He was hopeful the arterial switch would be the direction we would take and did not even go into detail on the other surgeries. I contemplated e-mailing one of the cardiologist to have them review the echos to give me a better idea of what was going on, but after some thought I realized Norah is going to have what she has, they will best know after she is born and no matter what they have a surgery to fix it so I just need to be patient. The one thing all of the cardiologist have said is that it does appear that Norah will have to go to the cath lab for the atrial septostomy. They cardiologist explained that this is not a planned procedure and would be more of an emergent thing and could take place anywhere from right after birth to 3:00 in the morning and they just do it when it appears Norah is starting to not do as well and her PFO is starting to close. That procedure would be done to stabilize Norah until her big surgery.

We later had a tour of the new Mother baby center, NICU, and Cardiovascular ICU. As of right now the plan is to let me go into labor spontaneously and I can labor in one of the nice rooms but I will have to actually delivery Norah in the OR just in case. I can see Norah briefly but then they will take her directly to the NICU. Luke can go with her but I will have to go back to the labor room and recover for about an hour. After that they said I can go to the NICU whenever I wanted to see Norah. Hopefully I will be discharge the next day and then I can stay with her as much as I would like. They even allow us to sleep in her room in both of the ICU's. We also met with the neonatologist. She explained to us what to expect while Norah is in the NICU. Norah will be in the NICU most likely until the night before her surgery where she then will go to the cardiac ICU and be intubated if not already and all of her central lines will be placed. We will spend the remainder of her hospital stay in the cardiac ICU. The docs explained that we can anticipate being in the hospital for 2-3 weeks all depending on how Norah does.

Right now I am 32 week and feel like I am in the eye of the hurricane. Despite being uncomfortable I am trying to just be patient. Norah is perfect while I am still pregnant and I am providing her with everything she needs. My next appointment will be next Thursday where I will have another Biophysical profile and non-stress test. Hopefully all goes well. Thank you to every body for the continued thought and prayers.

God Bless,
Amanda

GEE thanks

Hi All,

I thought I would give another quick update. I had another appointment on Tuesday. We did another growth ultrasound and Fetal Echocardiogram. They both seemed to go ok. The cardiologist is in the room when doing the echo and I didn't seem to care for this cardiologist as much as the last one. I am glad this was not the first doc I met otherwise I may not have been able to cope as well. She seemed very smart and knew what she was talking about, but her bedside manner kind of sucked. She talked over me the entire time to the ultrasound tech as if I wasn't even there. It was a little awkward. She was kind of short with the ultrasound tech on getting the pictures she needed. Bedside manner comes second in my book as long as she can help take care of my baby but I was in tears after she left. She gave me a short explanation saying they are just trying to figure out how sick she will be when she is born and if they will need to tear a new whole in her heart.( GEE Thanks) She explained that they have no real way of telling what baby will need to go to cath lab or not. As of right now it appeared the blood was mixing OK and she had a floppy atrial septum. As far as I could tell that was a good thing. I may or may not see this Doc again as they work in a group, but as long as she can take care of Norah I will deal with it.

We also had a growth ultrasound and met with a perinatal Doc. Norah is still on the smaller side in the 35 percentile. They said that was all right. Otherwise everything looked ok from this Doc's point of view. Unfortunately she came in shortly after my mini melt down from the heart doc and told me baby was doing great and I was the one with the problem right now. ( Gee Thanks) I think she meant it in a nice way but not the words I needed to hear at the time. She tried answering any questions I had but really had no new information to offer.

After that I had a regular check up. My blood pressure is doing good and although Norah is not gaining a lot of weight that is not a problem we share. I am growing just fine. I met with another perinatal Doc who also specializes in genetics. She brought up that Norah's head is measuring a little small on ultrasound but after meeting me she was not worried about it. She pointed out that my head is a little small in comparison to my body and she probably just inherited that trait from me ( once again Gee thanks).  Although being the one who has to give birth to her, a little smaller head did not sound totally horrible :)

My next appointment will be at 28 weeks where I do my glucose testing. I almost forget about the normal pregnancy stuff  I still have to do. Then I will have a really big day around 31 weeks. We do another echo and growth ultrasound and I will meet the surgeon and neonatologist as well as tour Abbott Mom baby center, the NICU and cardiac ICU where Norah will be. They said I should plan on being there all day. Luckily I have a nurse coordinator to set up all of these appointments and consults. Thanks again for all of the support and prayers.

FYI- The fish are still alive

God Bless,
Amanda

Updates, Claire turns 2!

 I had another appointment yesterday for the baby. It was a pretty simple appointment I met with a nurse and nurse practitioner for a transfer of care. I will no longer be going to my regular OB now I will go to a perinatal clinic. I have been deemed a high risk pregnancy. The title actually seems kind of out of place for me since I actually feel fine beside the usual back ache that goes along with being only 5'2" and pregnant. The appointment went well, I really did not learn any new information. They put some light work restrictions on me to help prevent any chance of pre-term labor since it would be so detrimental to the baby. The goal is to get her as close to her due date as possible as long as everything is looking OK. They drew my HGB level and vitamin D. I can already tell them they both are going to be low. My skin is practically translucent so it's safe to say probably I'm not getting enough vitamin D and my iron is always low when I am pregnant. But either way I guess we will know for sure. Sounds like I will have to just take supplements.  They don't measure the baby or listen for heart tones they just do a bedside ultrasound. Norah's heart was beating great and her size looked OK. The NP was able to feel the baby kick and she was surprised at how strong she was already. So I will take that as a good sign. My hat collection has been growing thanks to my lovely family and friends. God willing hopefully I will have more hats then days in the hospital.

Thank you to all of the family and friends that have been praying for our family. They have really made a difference. God has touched us and given us the strength to take on this challenge. I can now logically talk to people about Norah and her heart with out totally breaking down and I know that strength can only be coming from my Lord. I heard a quote the other day. " God will only give you what you can handle, I only wish he didn't trust me so much." Kind of made me laugh. I at church the other day we sang a worship song that brought me to tears and really touched me here is a link if any one is interested. It really speaks to how I feel and where I am at http://www.youtube.com/watch?v=O5_Z3ZZYLDc

Mean while as life goes on we have already added to the family. Claire turned two on May 8th and as a present she got two gold fish from her uncle. Named by Lilly, I introduce to you Dr. Seuss and Sally

You can tell we have tried the goldfish thing before because Lilly is already asking when are going to have to flush them down the toilet. I have to admit I am pleasantly surprised each morning when I see both of them still swimming at the bottom of the fish bowl.

 

Claire had a great time on her birthday and I can't believe she is already two.

Family picture at Claire's Birthday Party

 

 

Claire riding her new four wheeler she got for her birthday with Daddy riding his new lawn mower.

 

Lilly's birthday is Sept 3rd so we had to take a test to get her into kindergarten. Lilly took the test last week and we just found out that she passed and was accepted into kindergarten. She is so excited to go and we are so proud of her. She tested out at the level of a 6 year old and she is only 4. I just pray now that baby does not come before Sept. 3rd so I can be there for Lilly's first day of school and her 5th birthday. Norah is due Sept 7th so I will be cutting it close.

 

Thanks you again for the continued prayers and words of support they mean so much to us. My next appointment is next Tuesday. I will have a growth ultrasounds and another fetal echocardiogram. If the size of me is any indication I am pretty sure she has grown quite a bit :)

 

God Bless,

Amanda

 

 

 



The first Hat

Norah's First hat and booties from Grandma Saari with Lilly and Claire. Don't mind Claire's face. I had to make some pretty weird noises to get her to look at the camera.  

We met with the pediatric cardiologist yesterday and had the fetal echocardiogram. It was nice because the cardiologist was in the room for the echo. The cardiologist probably didn't like it so much because I started rambling off questions as soon as she walked in the door and while she was trying to look at the echo. I got the answer " well that's what we are looking for right now" more then once. However, she was very nice and very informative. Once again they confirmed that she does indeed have Transposition of the Great Arteries. We were told this is a fairly rare heart condition, but they see about 1 baby a month with this condition so they do know how to treat it and the surgeons are familiar with the operation. They confirmed that I will be delivering at Abbott in the new mom baby center where they will have a neonatal cath lab just doors down from where I will be delivering in the event they need to do immediate interventions. She said I am now a VIP patient. I didn't realize until now that could be a crappy thing. The operation she will need is called an arterial switch. http://www.childrensheartclinic.org/ProcedureIllustrations/ASO.pdf This is an open heart surgery that will be about 8 hours long. Basically they switch the main arteries around as well as the coronary arteries as they too are in the wrong place. This surgery usually takes place with in the first week. She may need a smaller surgery to keep the hole open between her atrium within the first hour of life depending on how she is doing. The cardiologist explained that they try and keep the heart in its fetal state until she has the switch surgery. We also met with a genetic counselor, after three strong NO's from both Luke and I the counselor finally understood that we would not be doing any genetic testing while I was pregnant.

For the most part Norah is fine as long as she is in me and the major problems arise once she is born.  Some research has shown that they may be getting a little less O2 then other babies but for the most part she is fine. It's nice to know that I can do something for her for a short time :). After the surgery Norah will be in the hospital for about 2 weeks. Her length of stay will mostly depend on how fast she learns to eat.

After she is released from the hospital most babies and children do great and the prognosis is very good, they only need to follow up with a cardiologist. That I can handle. The surgery has only been around since the late 80's so the oldest children who have had this done are only in there early 20's but are dong well.

My only job now is to make this baby grow. I have no new restriction. I wonder if this means I can eat more ice cream? I will be followed very closely through the pregnancy. I have an appointment almost every two weeks until she is 28 weeks, then I will be going weekly.

The kids don't really know anything yet. We probably won't even attempt with Claire. She still doesn't even understand simply commands like " don't out that in your mouth, or a simple No." We may explain things later to Lilly. For now I enjoy living vicariously through her that everything is great and we are having a new baby. Her innocents is priceless. 

Thank you all for the kind words and prayers. They mean so much to Luke and I. I know God will provide me with the strength to get through all of this, but I still don't have to like it and I don't :) It is weird because I remember studying this heart condition in nursing school during my pediatric rotation. Never would have I thought the child I would be caring for with this would be my own. Perhaps the Lord prepares us all in different ways.

God Bless,
Luke and Amanda

Why I'm here

Norah's Hats- Luke and I will be starting a new adventure. In January we found out we would be expecting our third child! My due date is September 7th. Our newest addition will be named Norah Kate. The pregnancy has been pretty normal up to this point. On Friday we had a routine 20 week ultrasound. That is when things became less routine.

 During the ultrasound the tech was having a hard time getting pictures of the babies heart. Finally after we finished the ultrasound we met with my OB. Everything looked good on the ultrasound except they found some abnormalities in the heart and we were referred to a neonatologist to have a level two ultrasound and meet with the specialist. We met with specialist this morning and had the ultrasound. Things still are not looking right with the babies heart. The diagnosis we are facing now is called Transposition of the Great Arteries. http://www.childrensheartclinic.org/DiagnosisIllustrations/TGA.pdf.

 Tomorrow Luke and I will be meeting with a pediatric cardiologist to have a fetal echocardiogram to nail down the diagnosis. The bad news- Norah will need open heart surgery shortly after birth to correct her heart condition. The good new- We found this on an ultrasound so we will be prepared. This can be corrected and the rest of the ultrasound up to this point is normal.

So why named Norah's Hats?- While doing research on the condition and looking at other mom's blogs with babies that are sick. Most of the babies had really cute hats on because moms could not put them in anything else. So I plan on getting some really cute hats to dress Norah up in while we are in the hospital. The collection has already started so if anyone comes across a cute hat let me know!

Luke and I are doing alright. Luke is my rock as usual and has been incredibly strong. I took the weekend to kind of fall apart, but now I have put myself back together. I blame it on the hormones. Please pray for strength to get through this. Pray for my two other children. I will post any new updates as they come.