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Faith turns 2yrs old!

May 20th, 2011 Nell Turgeon No comments

Well, I am officially the mother of a 2yr old. Faith turned 2yrs old today! I’m still having a hard time believing it. We didn’t really do much today to celebrate. However, I sang happy birthday to her quite a few times. Also, I’m working on her response to “how old is Faith?” and it’s a work in progress. I made pizza for dinner, which might just be her favorite food…I think it’s a toss up between pizza and hot dogs lol. She is getting to be such a big girl. She’s walking around like crazy. I still don’t think I’d classify her as an independent walker quite yet, but she is so very close! Another thing she got to do today (besides eat pizza) is have (mostly) free reign of the house. Up until now, she has pretty much been confined to the living room, only because she likes to get in to trouble (I know, you’re thinking “not Faith, she’s perfect just like her mommy”). So, today I decided to be brave (or stupid) and leave the gate open for the living room. Faith actually did really well listening and staying out of trouble for the most part. She really enjoyed being able to explore the rest of the house with a little more distance from her watching mommy. I think it actually encouraged her to walk more. She was deciding on her own to walk from one end of the room to the other, and doing a good job with it too. *Sigh* such a big girl.
Memere and pepere are coming tonight to spend the weekend with us (mostly Faith lol). Aunt Sarah is coming down tomorrow. She is making the cake for Faiths party on Sunday, and I’m excited to see it because it’s a surprise.
Speaking of memere and pepere, I’m pretty sure they just pulled up!

On a side note, I don’t want to sadden this day, but I do have a story to share. I found out through facebook that a friend who Matt and I went to college with was an uncle today for approximately 17hrs. His brother and wife found out at their 20 week ultrasound in January that their son had a form of anencephaly. This is where the top portion of the baby’s skull is missing. This condition has a 100% mortality rate. These babies live anywhere from 2 minutes to 10 days after birth, if they even make it full term. Their son, Corbett, was born via scheduled c-section today and was able to spend 17hrs with his parents here on earth before going to be with Jesus. Their story reminded me today how precious each moment is that I spend with my two little girls. I am so blessed that God has entrusted Matt and I to raise them. I kept thinking today that Faith could have just as easily been taken from our arms to God’s. Clara too for that matter, but Faith has a little bit more history. That Faith and Corbett share a birthday touched me as well, why, I’m not exactly sure how to put that into words. Corbett’s parents are leaning on God, and I know He will continually comfort them and bring them peace.

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Just another Saturday…

May 14th, 2011 Nell Turgeon No comments

All day the sky (and weatherman) has been threatening rain, but so far, nothing. I’m thinking the clouds can’t hold it in much longer though. It keeps getting darker, and it smells like rain is on the way.

Faith, Clara and I spent a couple hours at Grammie and Papa’s house this morning to let daddy have some quiet to get his school work done. This is his last day of these classes, so glad! I love that he’s getting his Masters degree, but I don’t love that school steals his time. The next few semesters shouldn’t be as bad since he’ll be taking fewer classes. He should be graduating in spring 2012.

I can’t believe tomorrow is his birthday already; and that he’s going to be 27, which means that I’m going to be 27 in 4 months…yikes! lol. We’re going out for dinner to the Cheesecake Factory tomorrow to celebrate our anniversary and his birthday. I’m really excited. I’ve never been to the Cheesecake Factory. I’m also excited because I’m pretty sure this will be the first time we’ve been out on an actual date with no kids since Faith has been born!

Speaking of Faith, I can’t believe she is going to be 2 next week!!! Part of me is like, yea, it feels like 2 yrs have gone by. But the other part of me is like, wait, what…no, she can’t be 2 already! She is doing so well. She’s really starting to walk a lot on her own. She’s taking about 6-10 steps consistently now. I’m sure she’ll be actually walking this summer. She’s also starting to talk a lot more and have conversations. Granted, there are only a few words I actually know what she’s saying. However, she knows exactly what she’s saying lol.

Ok, Faith just did one of the cutest most adorable things ever…praying it becomes a habit, but not holding my breath. She was all ready for bed and we were playing in the living room for a bit until bedtime. Well, she started reaching over the gate and taking books off the bookshelf. I told her to stop, and then I asked her if she was ready for bed. Here it is…she promptly walked over to her bedroom door, reached for the door knob and said “night night.” I was just about speechless. Then, even better, we went in her room, I read her some books, laid her in bed, and she went right to sleep! I am definitely speechless now!

Oh, and it did start raining…but it’s the nice rain. The calm kind that I love listening to at night.

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Beautiful Day

May 11th, 2011 Nell Turgeon No comments

Today was so beautiful, inside and out! After my darling hubby left for work at 645, I made Faith and I some breakfast while Clara was still sleeping. Clara woke up shortly after Faith and I finished breakfast. We all hung out in the living room for a bit, playing on the couch cushions on the floor (something I do nearly every day now so that Faith can’t climb over the back of the couch)!

Clara took a short nap while Faith and I had lunch. Cleaning up from lunch I realized we had no water (due to water main break). So, (since I couldn’t do dishes anyway) I decided we would all go outside, in hopes that Faith and Clara would take their afternoon naps while we went for a walk. And, what do ya know…they did. Both of them slept for about 2 hrs. I walked around the park, played fetch with Echo, walked up and down the sidewalks, back to the park again…round and round I went. I loved it! The girls were sleeping, it was wonderful to just be outside in the warm sunshine air. When I finally grew tired of walking, I headed back to our apartment where I sat on the steps and the girls continued to sleep for another 20 minutes or so. All in all, it was fabulous! I got just enough sun to have a glow, but not really a sunburn. You see, when I spend time in the sun, I’m usually either sunburned or not…there’s very little tanning for me and my white skin lol!

When hubby got home he brought a delicious little chocolate cake and a bottle of wine to celebrate our anniversary a little early (knowing that his work schedule on our anniversary tomorrow may have him getting home a little later). All in all, today was close to perfect!

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what a year…

January 8th, 2010 Nell Turgeon No comments

I know it’s been quite a while since I’ve written a post in here. Those of you who have been following our blog know it has been a rather eventful year. As I reflect back on what has transpired over the past 12 months, I still have a hard time taking it all in. I think to say that it has been a roller coaster of emotions is an understatement. Sometimes it all feels like a bad dream. However, when I’m giving Faith her medicine every 6hrs or so, I’m reminded of everything that has taken place to get us where we are now. As joyful and painful as it all was, there were a lot of good things that came from it. The biggest one being that God worked a miracle in our precious baby girl for everyone to see. We also have new friends in the doctors and nurses who took care (and are still taking care) of Faith.
When you plan on starting a family, you never think that things won’t turn out the way you picture them. You know things won’t be perfect…you just expect somewhat ‘normal’. Especially when you start planning months ahead of actual pregnancy, and make sure you’re doing everything possible for your baby to have the best start before it’s even born. You even go so far as to plan the month you want the baby to be born (and it actually worked!). However, no matter how carefully prepared you are…there are just some things you have no control over. Like finding out at your exciting 20 week ultrasound that there may be a problem with your baby’s heart. Then being sent to a specialist in hopes that is not the case, only to find out it is in fact true. We’re not talking a little hole, we’re talking two pretty big holes. Holes that are definitely going to need surgery once the baby is born. To top it all off, the type of heart defect is not always, but quite commonly associated with Down Syndrome. So you go to the doctor’s appointments and the specialists and continue to gather an overload of information. Then it dawns on you, do we want just any surgeon repairing our precious baby’s heart? The next thing you know, you’re 8 months pregnant and moving 423 miles to be close to a hospital and surgeon known for their success in this area. God had a hand in all of it, from my OB knowing an OB in the area we were moving, to our pediatric cardiologist having gone to school with one of the pediatric cardiologists who would be taking care of us when we moved. Talk about Divine intervention and the unexpected.
Right after Faith was born she spent 15 days in the NICU. That was rough, but God brought us through. She came home on 24/7 oxygen and pulse oximeter (which kept track of her O2 sats and heart rate and alarmed if the parameters were exceeded). That was rough, but God helped us maintain our sanity. We had appointments with the cardiologists, pediatrician, nutritionist, physical therapy and speech. That was exhausting, but God gave us strength. We were getting a little excited, and definitely nervous as her surgery date approached. Excited at the prospect of her most likely not needing the O2 and pulse oximeter when she came home from the surgery, nervous about…well, about the surgery. From here you’ll have to go and read our September/October posts about the surgeries (yes, plural) and stay at the hospital. And yes, that was rough to say the least…but God was with us all the way. I never could have imagined until we went through it that God can give you such peace in the midst of such pain. To all those who kept Faith and our family in your prayers…THANK YOU!!! It means so much to us that people all over the world have been praying for our family.
Even though Faith came home with the O2, it was not for long and she is completely off it now and doing wonderful. She does need medicine about every 6hrs (though I try to stretch it out during the night so we can all get a little more sleep).
I cherish every day I get to spend watching and helping our little girl grow stronger and learn new things exploring her world (though that doesn’t mean everything is always easy).

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better late than never

November 5th, 2009 Nell Turgeon No comments

I know it has been a while since the last time Nell or I updated our blog. It has been crazy for the both of us. Faith keeps Nell busy all day. Her medicine and eating schedule is enough to wear anyone out. Every six hours she has to receive some type of medication. She has also found it to be more fun to take a nap while she is supposed to be eating. This has forced Nell to cycle between food and medicine from 5 in the morning until 11 at night. The only real break she gets is the six hours between her 11pm and 5am doses. Even though this can be extremely exhausting, neither of us would trade it. We are so happy that she is home.

We have made some progress over the last three weeks too. Since coming home, we have been able to take her off the oxygen during the day. Nell appreciates this the most. She’s not tied to the living room all day. Faith has also resumed physical therapy. Since she started back up a couple weeks ago, she has made significant progress. It’s amazing how quickly she is making up the ground she lost while in the hospital.

We continue to thank God for healing her. It has been a miracle that Faith has come this far. When we visited the doctors last week for a follow up, they were all amazed at her progress. Her lungs have continued to heal and her heart is still looking good. We have appreciated everyone’s prayers for our little girl. It has had a tremendous impact on our whole family.

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4 Weeks Later

October 1st, 2009 Nell Turgeon 1 comment

Today is day 28. We have now spent an entire month at the hospital. It has been an amazing journey. Over the last few days, we have seen some amazing improvement. For the first time, the doctors listened to her lungs and thought they sounded normal. We have also seen a number of medications and pumps disappear. At one time, Faith had eleven different pumps, now she is down to three. God has just done tremendous work healing our daughter.

Today is also special because it was the first time in four weeks that Nell was able to hold her. Both of them were incredibly happy. It was actually very cool to watch. The volume of air going into Faith’s lungs increased significantly as soon as she was in Nell’s arms. We are both praying that she will be extubated tomorrow and that she can be held on a regular basis.

 

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Still Holding On

September 25th, 2009 Nell Turgeon No comments

Today Faith continued to cooperate. The doctors were pleased with the progress that she was making. It is slow progress, but steps in the right direction nonetheless. The staff is still not planning on things going very quickly. Yesterday they painted her door. It is much more colorful. The social worker wants us to bring in pictures to decorate her room. It’s hard to want to decorate because it’s like you are giving in to her being there for a while longer. By not putting anything up, we are able to hold on to the thought that she will come home sooner. We’ll see how it goes over the weekend. Maybe if things continue the way they have over the last day, it won’t be much longer.

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day 19

September 22nd, 2009 Nell Turgeon 1 comment

It has been six days since Faith’s last surgery. Her heart appears to be doing well, but her lungs are still very sick. She has developed the same bacteria’s in her trachea that were there before the last surgery. The doctors have been working aggressively to treat it, but that has required a substantial amount of fluids.

This has made it difficult to heal the other damages to her lungs. In order to help with some lung recovery, her chest has been left open, and she has a patch holding it together. The idea is to allow her heart and lungs more room to work under less stress.

Some good news is that the secretions in her lungs that were once bloody have been clearing up. Unfortunately at this point, there are so many other things going on. It is like a vicious circle. She needs the oxygen, but at the same time it can cause more damage. The doctors are working really hard to balance everything, but it is going to be a long process. It could easily be another month that she is here, but there is no way to tell at this point.

Faith’s heart has been doing better. Her blood pressures have been more consistent, and the rhythm has been perfect. She hasn’t needed the pacemaker at all. The only time that her heart has been wacky is when she has a fever. Once her temperature gets to 99.5 degrees, her heart rate goes up and blood pressure drops. Since they have been treating the infection, that hasn’t been an issue. As of now, she is on four different medications to treat all different types of infections. Once they close her chest, they’ll be able to discontinue some of the antibiotics.

The plan right now is to go slow. They are working to get as much fluid off as possible. This will hopefully help her lungs enough that they can decrease the amount of air pressure needed to oxygenate her lungs. Once the pressure is low enough, they will close her chest. From there, they can look at a number of different options that aren’t available to someone with an open chest.

As this continues, we ask that everyone continue to pray. The fact that she made it out of the surgery so well is only by God, and Nell and I are asking Him for more miracles. We are both anxious for her to get better, but right now there doesn’t seem to be any end in sight. The both of us believe that God is going to do something awesome. All through the pregnancy and up to this point, we have told Faith that God has something awesome in store for her. Now is just the start.

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Round 2

September 16th, 2009 Nell Turgeon No comments

Today Faith is goin­g in for another surgery. Her mitral valve has some severe leakage, which the doctors believe to be the biggest cause Faith’s current condition. The surgeon is going to go back in, and either try further repairs or replace the valve all together. The replacement valve will be made of pyrolitic carbon, and it will be 15mm or 17mm in size. The 15mm valve is a custom valve that is made specifically for this operation.

This surgery, however, does not come without significant risk. At this point Faith’s lungs are very sick. They have not been able to significantly recover from her previous surgery because of leakage in the mitral valve. With her lungs so sick, there is a high probability that she will be unable to come off bypass because her lungs will not be able to take the trauma of another surgery. Thankfully there is a portable bypass machine called EKMO. It is not perfect, but it at least gives Faith a chance to recover. Statistically, babies that have “normal” heart anatomy after surgery (Faith fits in this category) have about a 50% chance of ever getting off of it. Another risk in valve replacement is that it can cause abnormal heart rhythm. This would require Faith to have a pacemaker for the rest of her life.

The good news for us is that we have a number of things working in our favor. First, we have a lot of people constantly praying for her. God holds the entire universe in his hands, and he is hearing every ones prayers. Secondly, her heart has been working great other than the leaky valve. This makes everything a little easier. Lastly, her kidneys are working very well. That is important in her getting off of EKMO if it is necessary to put her on it in the first place. Her kidneys need to be able to get a lot of fluid off her in order for to get better.

The surgery is today at 7:30. Nell and I will work diligently to keep everyone up to date. We both appreciate all the prayers and support. Please continue. It will only be by God that she eventually comes home with us.

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day 6

September 10th, 2009 Nell Turgeon 2 comments

We have been in the hospital for 1 week now, and nothing has really changed. The last two days have been the hardest. It looked like Monday was the start of turning the corner, but Tuesday was a couple steps back. Thankfully,Nell and I are not going this path alone. It is rough at times, but God continues to give us the strength to keep moving forward every day.

One thing God has taught me so far is that often times; we feel that we trust God. We convince ourselves that the faith we have in our own abilities and the abilities of others is true faith in God, but honestly, it isn’t. It isn’t until we find ourselves in a position where there is nothing that we can do, that we truly put our faith in God. Over the last few days, the doctors have had no answers to Faith’s condition. Each day, they look at x-rays of her lungs, look at the results of her tests, and schedule more antibiotics, but nothing has changed. There is no explanation. The only option left is to put it in Gods hands.

Nell and I ask is that you all continue with the prayers. We have a long road ahead. We made a quick trip home to get a new set of clothes today. We got sick of cycling through the same 3 sets of clothes. The both of us know that things will get better here. Faith just has a very distinct way of taking her sweet time with everything. She did the same thing when she was in the NICU. We will keep you all posted as God keeps revealing His plan.

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