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.