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