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day 3

September 6th, 2009 Nell Turgeon 4 comments

Well, it looks like we might have finally started to turn a corner. Up until this morning the doctors were just trying to keep Faith stabilized. Now they can switch modes and start trying to be more proactive. They started today by putting her on lasix. This drug is a diuretic that will help get rid of the extra fluid build up. In order to keep her blood pressure up, she has been taking in more fluid than she has been able to put out. She has responded well to this, so the doctors have been able to reduce the amount of FIO2 (fraction of inspired oxygen) and respirations. Her O2 saturations are still good and they are just trying to be patient before they take another step. If Faith is able to maintain her blood pressure and the amount of O2 in her blood gases increases, they will start to wean her off the vecuronium. This is what we are shooting for tomorrow. Most likely when they get her off the paralytic, she will digress temporarily. She will need to learn that she doesn’t need to fight the respirator. Also, once she is off the vecuronium, she will need to be stable for a while before they try to reduce another form of support. We are hoping that we can at least get rid of one piece of paraphernalia each day. We’ll see how tomorrow goes. Nell and I both appreciate all the prayers, and we’ll do our best to keep you all up to date.

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post-op day 2

September 5th, 2009 Nell Turgeon 2 comments

The surgery went well considering all that was done. They did fix the coarctation as well as the AV canal defect. The operation lasted about 7 hours, and it was about 12 hours until we were able to see Faith again. It basically all went according to the plan that was laid out in the previous post. There were a couple of things that the found once they started the operation that needed to be fixed. The first was that the right ventricle walls were not relaxing open the way that it should. Some of the bundles of muscle tissue had connected both the posterior (back) and anterior (front) walls. The surgeon cut the bundles allowing the right ventricle to open fully. This wasn’t a big deal for the surgeon when he saw it.

The second unexpected event during the course of the surgery was when the amount of tissue available to reconstruct her mitral valve. As the surgeon went fix it, he had to get creative in order to do so because there was a lack of the muscle tissue. Typically there are three different classifications for mitral valve leaflets. Unfortunately, Faith’s didn’t fit into any of the classifications. Because of the original condition of the valve, we knew there was going to be some amount of leakage (murmur). Mild leakage is not necessarily an issue, moderate leakage can be controlled with medication, and severe leakage may require another surgery. At this time, the leakage is moderate, and they are monitoring it. The doctors are anticipating Faith needing blood pressure medicine to help. Other than those unexpected events, everything went well.

Last night, things started to get a little crazy. Faith is a very strong little girl, but sometimes it works against her. All day yesterday she fought everything that was trying to help her. That caused her blood pressure to be all over the place. They finally had to give her vecuronium, which is a paralyzing agent. She is also on versed, morphine, epi, dopamine, and a few other meds that I can’t remember. Basically she is as “happy” as she can be considering all that she has been through.

Between the hours of 9 and 11:30 pm, it was all hands on deck. The surgeon and cardiologist both had to come in. There were three doctors and four nurses working on our baby. The goal was to find what was causing her blood pressure to go all over the place. The Cardiologist did an echocardiogram and both he and the surgeon intently watched the monitors looking for something that would explain what was going on. What they found is that even though her heart was keeping the same amount of beats per minute, the rhythm changed ever so slightly. In order to keep the same rhythm, they have her hooked to a pacemaker. This is not permanent. Once she is able to handle it on her own, they will disconnect the pacemaker.

The other concern last night and today is her lungs. She does have pulmonary hypertension, and her lungs are very sick. The left upper lobe was somewhat collapsed yesterday, but has been getting better. There is still a lot of fluid surrounding the lungs and they are very wet from the two major heart surgeries that she went through. They will not be able to start getting rid of the fluid until her blood pressure is stable. She will receive more lasix to assist with the removal of the fluid once she is consistently stable.

Her blood pressure has been cooperating a little. It still needs to be about 10 points higher. In order to keep her blood vessels dilated and her lungs relaxed, they have put her on Viagra. Originally they were going to use straight nitric oxide. They also lowered her core body temperature from 37.4 degrees Celsius to 36.2 degrees Celsius. Both these adjustments seem to be working. Hopefully she will continue to allow these things to help her and she wont fight them; which she should considering the fact that they have her pretty well conked out.

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Surgery Day

September 3rd, 2009 Nell Turgeon 2 comments

Today is the day that Faith finally gets her heart repaired. Nell and I are actually a lot more relaxed now then we were last night and this morning. It was kind of fun getting her ready in Pre-Op. They have little hospital gowns for babies. She went back in the OR for anesthesia around 8:30. Now we will spend the rest of the day in the waiting room. It probably won’t be until 5 or 6 tonight that we will finally be able to see her. After that they will keep her sedated for another 48 hours to make sure that everything is working properly.

Yesterday we spent 5 hours around the hospital getting her registered and her testing done. Basically Nell and I got an honorary medical degree from all the information we received. The process for today’s surgery is amazing. The first step in the process after anesthesia is to perform another echocardiogram. This one will be done internally. They will run a tube into her stomach and look to see if they need to correct the coarctation in her aorta. They don’t want to fix the aorta if they don’t have to; it adds more complexity to the surgery. The tube will remain in her stomach for the entire procedure. That is what they use to monitor how well the patches are in place.

Even though they are going to double check the aorta, they are going in with the expectation of fixing it. Once the decision is made to fix the aorta or not, they will begin opening her up. The aorta will be the first part fixed. For that, they will actually take her completely off bypass and ice her body down to cool her body temperature about in half. For about 20 minutes there will be no blood flow to her entire body. They can do this for up to 40 minutes before causing any neurological damage. When they fix a coarctation, they actually cut out the narrowed section and pull it back together and stitch it up. At her age things are very elastic so they don’t have to put anything in to fill the gap. Once the repair is completed they will put her back on bypass and warm her back up.

Next they will start working on the inside of her heart. They will start by placing a Gore-Tex patch between right and left ventricle. Because the ventricles are high-pressure chambers they need a patch that is stronger than any of her other tissue. The patch between the right and left atriums will be made of her own muscle tissue. The lower patch is the most critical. For that patch they have to stitch around the AV Node. If the AV Node is damaged, Faith will always be on a pacemaker. Chances of that happening are less than 1%.

The last part of the procedure is to reconstruct one of her valves. Right now it is as if the valve is made up of three leaflets instead of two. They will stitch two of them together. After that they will wait an hour or so to make sure there is no internal bleeding before closing her up completely. They will bring her up to the Pediatric Intensive Care Unite (PICU) for recovery. It usually takes 1.5 – 2 hours to get her all set up there before we can see her. When we do get to see here, there will be a lot of tubes and wires. We’ll see what they all look like around 6 pm.

Nell and I really appreciate all of your prayers. We will continue to keep you all posted as we receive updates throughout the day.

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August 27th, 2009 Nell Turgeon No comments

We received a call yesterday from the surgeons office. They need to move Faith’s surgery to September 3rd. We will keep you all posted as we get closer to Faith’s surgery and recovery.

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I never knew ‘busy’ until now…

July 23rd, 2009 Nell Turgeon No comments

So..we’ve been just a tad busy lately. I’ll try to write a brief update on the highlights before Faith wakes up to eat again.
Faith has been doing really well! She has an appointment with the pediatrician, nutritionist and physical therapist once a week. So that in and of itself keeps us busy. We’ve finally gotten her feedings figured out so she’s been gaining more weight now like she should. She now weighs 9lbs 5oz. She had her core evaluation for Early Intervention on Monday and did very well. There were only 2 areas where she was mildly delayed and only by like 2 or 3 points each. Our coordinator said that if she didn’t have a dx Down Syndrome she wouldn’t have qualified for Early Intervention services because she did so well. So that was really encouraging. She is doing well with PT and we work with her throughout the week as well.
We actually went to the cardiologist today and the appointment went well. She had another echocardiogram so they could see if anything has changed. The cardiologist said that since she has some pulmonary hypertension and since she’s a little bit bigger now it might be good to do her surgery sooner rather than later. He’s going to discuss everything with the other doctors on Faith’s team and see what everybody has to say. We should be getting a call from him tomorrow to let us know what’s going on. He’s pretty sure we’ll be looking at her surgery for the end of August.
Matt is running around like crazy between everything with Faith, his school work for his masters program, and helping get everything ready for the Erie county fair in August. Hopefully he won’t be quite so spread out once this set of classes is done and the fair is over.
Alrighty, she’s waking up and she’ll be hungry…so time to go!

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7 weeks and 2 days down

July 10th, 2009 Nell Turgeon No comments

So, it has been just over 7 weeks since faith was born. It is still amazing to me to think that God has entrusted us with her. Nell and I are so much happier having her home.

The last few weeks have been jammed packed with appointments. Thankfully everything is still about the same as it was when we left the hospital 5 weeks ago. Right now, we have started physical therapy and visits with a nutritionist. The physical therapy is to help Faith gain some more muscle tone to deal with the Down Syndrome. The nutritionist is working with us to help Faith gain some more weight. It is very difficult for Faith to gain weight because of her heart condition. We are getting there though.

Other than the weight gain, nothing health wise has changed. Faith has changed so much though. She is awake a lot more. They are surprised how awake she is because of the heart condition. She also likes to be held, ALL THE TIME. It makes it a little difficult to get things done because she will fall asleep in your arms, and then as soon as you put her down, she starts crying. Good times.

We appreciate everyone’s continued prayers. We all have faith that God can still work miracles.

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finally home!

June 5th, 2009 Nell Turgeon No comments

After 2 long weeks driving back and forth from the hospital, we are finally all home together! We spent Wednesday night at the hospital rooming in with Faith to make sure we were comfortable with the monitor and O2 she would be coming home with. Yesterday, we all came home from the hospital together. Faith is doing very well, and we’re getting used to managing her monitor and O2 at home. I think being around it so much at the hospital helped with the transition home. We had a good night last night, Faith ate well and everybody got a good night sleep. We have a quite a few doctor’s appointments lined up through this month, so we’ll stay busy.
The nurses in the NICU were great! They took such good care of our little Faith, and they all loved her. It made Faith’s stay at the hospital a little less stressful…plus Matt kept them all in line lol. It was nice to have nurses who put up with Matt’s sense of humor…kept the mood and atmosphere more upbeat.

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a family at last

June 3rd, 2009 Nell Turgeon No comments

For the last two weeks, we have had to leave Faith at the hospital as we go home to get some sleep. Today we finally get the opportunity to spend the night with her. It feels like the first night we are a real family. It’s an awesome feeling. I am so excited for this to be a regular thing.

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finally a break!!! it only took 12 days ;)

June 1st, 2009 Nell Turgeon No comments

Today we received our first glimmer of hope. Until now, there was no foreseeable end in sight. We had no plan in place and we didn’t know what we were really working towards. Today, that finally changed. The cardiologist did an echocardiogram for the first time in a week. The Patent Ductus Arteriosus (PDA) is still open, but it is slightly more closed than it was for the last echo. The good news is that the cardiologist does not see the coarctation as life threatening. He feels that this can be monitored from home. If she does come home, she is still going to need oxygen, and she needs to get rid of the feeding tube. All of the nurses are working towards this. It is finally a break that we have been looking for and something to work towards. We are praying now that she will be able to come home by the end of this week. As of now, things are looking good.

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So we wait

May 30th, 2009 Nell Turgeon No comments

Waiting has become a normal part of our rutine. Every day we sit with Faith wondering what is going to happen. So far it has been 10 days and still nothing had changed. We continue to wait to see if she is going to need surgery before she comes home. Right now, we are waiting for the cardiologist to come in and check on Faith, and so we wait.

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