Stuck

We went into the Friday morning echo with quite a bit of anticipation. On Wednesday the pediatric cardiologist was telling us that they would see how everything looks on Friday and possibly send Amanda back home that day. It has been a full week now of seeing the much improved results consistently. Although we kept telling ourselves not to get too excited until we officially got the word, it was impossible not to be excited about the possibility of being back home.

The perinatologist took a close look at things and said that he would like her to stay in there. Said that although things were very good they werent perfect and he wasnt comfortable sending her away from the daily monitoring and constant care yet. We were definitely crushed after getting our hopes up that it was almost a done deal. Everything that we saw looked exactly the same as the previous week. We believe it was just a difference in opinions between the doctors. The pediatric cardiologist was the one that really put it in our heads on Wednesday but the perinatologist was the one that wasnt quite ready to let us go.

We've just had to remind ourselves that if there is any doubt at all about our ability to maintain things at home then we should settle down and be glad to be there in great care. Easier said than done though. Amanda is at 33 weeks today and he threw out the 36 week number on Friday so we'll see what happens.

-Mark

Family testing

The doctors want our family to all get our hearts tested to see if there is anything in Amanda or I that could have been passed to any of the kids. I got my ekg last week and I took Avery to get hers today. The picture is her wired up to get the ekg. They were able to look back at Ryan's ekgs since he comes to the pediatric cardiologist yearly for his aortic stenosis condition already. All ekg's have come back good so far so we are extremely relieved by that. Scared the heck out of us to think about the possibilites of the other kids possibly having conditions also that were undetected. Whew!

-Mark

Memorial Day at home??

Since my last post things have almost been boring here but that is a good thing. Our results have continued the same great trend since last Friday with each day's echo continuing to show consistent progress. BGK's heart rate continues to beat at primarily a normal 1:1 sinus rhythym with no sign of any negative impacts at all. She is continuing to progress normally so we're loving seeing the medicines help and being more boring these days.

With all of the continued good news, the doctors have been mentioning to Amanda the possibility of getting to go home maybe by this weekend. They want to watch results through Friday and if all continues that will have been a full week of consistently stable heart rate. Although this sounds GREAT it is also slightly scary after having been under a microscope for a few weeks. We'll see what happens but it would be great for all of us to have Amanda back at home. Being at home would still require Amanda to take the meds on regular intervals, lay around quite a bit, and go see the perinatologist and cardiologist everyday or two. Laying low could prove to be quite a challenge for her but I'll be watching her closely and making sure to remind her often to relax.

I'll keep you updated.

-Mark

Wow!!

So, as you can tell from the pretty pink blog background, Amanda has been granted author rights as well and has access to add some posts at some point.

In my last post on Friday I mentioned that we were so excited to see the progress being made with Baby Girl Koch's (BGK's) heart rate. We have been afraid to get too excited until we saw more than one day's progress in fear that the next day could hold a setback. We have had two more echo's since then, on Saturday and Sunday, and they have both been even better. BGK's heart rate has been almost full sinus rhythm (aka "normal") both days! There have been no instances of tachycardia and only occasional times of 2:1 but mostly 1:1 rhythm. That makes 3 straight days of huge improvement, and enough for me to be extremely excited and encouraged!

Amanda is doing great and handling being here at the hospital in stride. She had me bring in the laptop and printer so she could handle some work and has been attending some of the hospitals educational sessions such as Moms 2 Moms and a class on C-sections. Amazingly, for as much as Amanda doesn't like Carly's dog hair at home, she has really enjoyed the Happy Tails dog visits both weeks. There was a lab that came in from the same breeder that Carly is from and jumped right up on the bed as you can see in the pic above.

Thank you all for the love and support. It is greatly appreciated.

-Mark

Progress!!!

So its been a few days since I last sent out an update on our status here at the hospital. Since Monday it has been pretty much status quo for a few days. Amanda has been taken the beta blockers while also taking both oral and iv magnesium doses to keep her magnesium level up above 2.0. I am so glad we have each other to discuss everything going on becuase we have to constantly remind each other of priorities. I find myself getting so wrapped up in 'project' of research and possible corrective actions that I sometimes lose sight of the fact that it is my little baby girl's life that we are working so hard for.

Going to our daily fetal echo appointment each morning we are full of anticipation to see how she (baby) is responding to the medicine. We are always a little fearful that things could have gotten worse overnight and always extremely hopeful that things could have improved. The first few days of the week the echo continued to show pretty much the same thing. Baby's heart was much improved from early last week but still continues to jump up into the high rate for a few beats every so often. I try to remind myself to be happy that there have been no other adverse reactions to the irregular heart beat occurring, but always a little bummed that we arent seeing the remaining blips of tachycardia go away.

On Wednesday the doctors all decided that we should try and new medication in addition to the beta blockers and magnesium. It is called mexiletine and is an anti-arrhythmic that works by targeting the sodium channels. We were a little concerned initially because many of the doctors did not have experience with this medication, especially for the purposes of a fetus. After talking to them and understanding the risks/benefits we decided to go with their recommendation. They informed us it would take a few days to full kick in and see the expected results.

At todays echo ultrasound the pediatric cardiologist and perinatologist did not see one instance of the tachycardic heart rate. They saw mostly sinus rhythm (normal) with some AV block 2:1 rhythm mixed in but no tachycardia. The heart size all looks good and there is no sign of any fluid buildup indicating any sort of failure. It was by far the best day yet and we were extremely excited to see some progress. At the same time, we are hesitant to get too excited about it but it certainly felt good to see positive improvements. We will be extemely anxious to see if these results can continue.

On another note, we celebrated our 9th wedding anniversary here at the hospital on Wednesday. Avery and I picked up some sushi and brought it to Amanda's room and the hospital got us an anniversary cake too. Thank you to all that sent the very nice cards, emails, and messages.

-Mark

Straight to the Hospital...

So when we got to the hospital they were ready for us and one of the nurses in the ‘High Risk Perinatal Ward’ greeted us with “Lets Rock and Roll!” as she got us shuffled into our room. The first thing Amanda noticed on her whiteboard was the list of activities to remind patients of things they can do to pass the long periods of time here. These were activities such as Happy Tails Dog visits on Fridays, Movies, Computer usage, Moms 2 Mom, etc. Amanda’s first response was “uh oh, this is a long term room” fearing that this could be a longer visit than a day or two.

They started treating us with beta blockers to try and reduce the baby’s heart rate as well as a two part steroid shot used to strengthen the baby’s lungs in case we were to have to deliver the baby sometime early. They have been giving the beta blockers in a smaller dosage more often in order to monitor the effects on Amanda’s heart as well and provide the ability to back off it if there are any negative effects on her heart rate. She has been given these beta blockers every four hours since then. They have also been giving her intravenous and oral dosages of magnesium to raise her levels.

While here we have been very with the daily ultrasounds and meetings with the perinatologists, pediatric cardiologists, ob-gyns, and pediatric cardiologists. It is a very strange feeling when each doctor that we speak with tells us that they are very familiar with our case and that there has been quite a few big conversations discussing it among the groups.

We will have been here a full week tomorrow. The positive news is that we have not seen the baby’s heart rate in that sustained tachycardia rate since last Tuesday. The heart rate is beating primarily in that 2:1 mode once again but does still continue to jump up into the 200+ range for a few beats every so often and then returns back down.

For the time being they want Amanda to stay here in the hospital to closely monitor the status. We will continue the path of trying to keep the baby’s heart rate as stable as possible in order to make certain it stays in Amanda as long as possible.

Background....

So, I have decided to create this blog to provide updates on the status of Amanda and our little girl baby #3. We have been emailing out updates to individuals and groups and this should help us to provide the updates. Please still feel free to contact us.

For anyone that isn't aware of the details around our current standing I will attempt to summarize. Around five weeks ago Amanda went in for a routine perinatal doctor checkup. At that time the Doctor recognized an irregular heartbeat that he thought deserved some further inspection by the cardiologist. He sent Amanda to give blood and then directly over to the pediatric cardiologist to look into it further. They found that our baby's heart had what they call 2:1 AV heartblock. This is a condition where the heart's upper chambers (atria) are beating two times to each one beat of the lower chambers (ventricles). The atria rate was holding steady at around the normal 130 range and the ventricle range was operating at about a rate of 70. In the majority of cases where the doctors see this it is due to an auto-immune disorder in the mother causing the deterioration in the baby's heartrate. Amanda has tested negative for these auto-immune disorders both times so that is now ruled out. We were to continue with weekly perinatal doctor appointments and pediatric cardiologist appointments every few weeks to monitor the baby's heart.

Amanda and I would look so forward to our weekly appointments to see what was going on because we have been so worried. During the week between appointments, outside of the baby moving around so much, we were left to only wonder what was going on. The heart was holding steady in that 2:1 AV block every week until this past Tuesday May 11th. When we went to our weekly perinatologist visit the baby's heart rate was beating very fast, between 230-280, and holding up in that range constantly. It was a very scary sight to see on the ultrasound. The ultrasound machines are unreal as you can clearly see each chamber of the heart working. On this day the heart just looked like it was going crazy. The good news is that we have found out a baby in utero can actually withstand a heart in tachycardia (very fast rhythm over 200 bpm) for weeks. He had us go to the hospital right away so we could continue to be monitored and medicine administered to try to stabilize the baby's heartrate.

At that point we had no idea if we would only be there a couple of days, weeks, or even if we would have to do an emergency c-section that day. I will follow up with the week's progression in my next post.