Friday, June 26, 2009

10 Pounds and Fortunate.

No, Bennett does not weigh 10 pounds but that's the magic number we are waiting for. We saw the cardiologist today and once again Bennett is doing great! He weighed in at 8 lbs 9 0z at the cardiologist and 8. 12 at the pediatrician today (don't think the lady at the cardiologist weighed him correctly) but whatever, he's gaining.

The cardiologist was pleased with his weight but would like to see him pack on more of course and quickly so we will be fortifying his milk to increase his caloric intake. He said once he reaches 10 pounds he would like to go ahead a schedule the surgery- when he said this my stomach flipped! Today was the first time I felt EXTREMELY nervous thinking about Bennett having surgery. For some reason I haven't thought much about it until today when the doctor said it won't be much longer. While the doctor was talking I was looking at him but could only picture Bennett hooked up to numerous machines and tubes and I felt a little panicky! Poor Bennett has no idea what is coming his way and I know he needs it but the thought of him going into the hospital to have open heart surgery is terrifying. I've seen the pictures of other babies that have gone through this so I feel some what prepared in that aspect but it's still scary to think about.

So we see the cardiologist again at the end of July, unless Bennett starts to become symptomatic. By then he should be 10 pounds and if he gets to 10 before the end of July I will call and they will go ahead and try to get us in with CHOP. It will then depend on CHOP and their schedule, so we could be looking at anywhere from 2-4 weeks from the time we schedule it. I'm thinking the end of August. We are also hoping to get a particular surgeon, "the best"-we've been told so we will pray that he is available at the time of surgery.

The pediatrician visit went well, she thought Bennett looked great and she worked on getting that stubborn umbilical cord off! It's still on there!! His tear ducts are still a little goopy so we will continue with the ointment and hopefully they will clear up soon. She also prescribed Axid for his possible reflux-GRR! I used to sell Prevacid and both girls were on Prevacid so I am totally comfortable with this medicine but I just knew this doctor was conservative as far as drugs go so I didn't argue with her and we will try it out. He's not spitting up or crying while he feeds just arching some so that's why I didn't push it. We'll see if it even makes a difference.

I've realized how very fortunate we have been with Bennett. My pregnancy had no complications, his birth had no complications, no NICU, so far he is not showing any signs of heart failure, he is eating well and gaining weight- no feeding tubes, no oxygen, nothing. I know many of these babies with Down syndrome and heart defects do not always have an easy start and we are just so thankful to God for the way things are going for Bennett so far. I know it could be much worse and I feel for those that are going through that or who have gone through it in the past. I've experienced both ways- having a sick child in the NICU (Ainsley) and a totally healthy child with no issues (Harper) so I've learned to not take it for granted when things are going the way the are supposed to even with the Down syndrome and heart defect that Bennett has.

Having these 2 appointments today and getting a good report was perfect because tomorrow we are off to VA to see my family and my sister whom I have not seen for a year!!! She and her family live very far away and I am so excited for her to meet Bennett and to visit with her family. Ainsley is very excited to see her cousins, Micah and Ty so I will be sure to have plenty of pictures to share when we return. I hope everyone has a great 4th of July next weekend!

Tuesday, June 23, 2009

We Finally Made It To The Pool...

...It just took us over an hour to get out of the house! Getting ready to go went something like this:

  • Feed Bennett
  • Change Bennett's Diaper
  • Pump, because Bennett tends to do better with a bottle
  • Allow Ainsley to pick out swim suits and then argue with her about the fact that the suit she picked doesn't really fit her anymore and it is now Harper's.-(she won this battle)
  • Decide which suit best covers the almost 20 pounds I still need to lose-none of them do! (My cover up stayed on the entire time!)
  • Do I need to shave? Oh, forget it!
  • Change Harper's Diaper
  • Apply sun block on the girls and me
  • Change Harper's Diaper, again
  • Change Bennett's Diaper, again
  • Pack pool bag with diapers, wipes, towels, sun block, toys, goggles, Dora and Barbie kick boards (of course!), sun glasses, swimmies, swim vest, snacks
  • Try to get Ainsley to go to the bathroom
  • Take the dogs out
  • Get directions to the pool
  • Pack car with chair, bag, stroller and kids
Whew, we were off, finally! Just trying to get to the pool was exhausting but once we got there it wasn't too bad. I did need to feed Bennett so that was a little tricky trying to feed him and watch mainly Harper at the same time. The swim vest I had her in at first was more dangerous than helpful as it would pull her down into the water more so I took that off and put her in the swimmies. Of course Ainsley cried at first about how cold it was after I sternly told her that she better have fun and not complain after everything I went through to get us there! Here are some pictures from today (sorry, I was using the small camera-not very clear)...

No, those are not all of our toys- we bring 3 small toys and they end up playing with all the other toys that are there instead.See what I mean about the suit? Barely covers her top!
Bennett was easy- he even looks like he may be smiling in his sleep! I have a little fan attached to his car stroller and he seemed very comfortable!

Yes, I broke down and got them popsicles, anything to get Harper sitting in one place so I could rest a little!

So the good thing about this pool is that my friends go there so there is always someone around that can keep an eye on your child while you're tending to another. I seriously don't know how people do it with more than 3 and then when you have 3 that are all moving but can't swim, I don't even want to think about it! I'll deal with that when the time comes I guess. I love being a mom!

Sunday, June 21, 2009

Bennett Was Wondering...

Straight and spiky...
Or cool and curly...

He just thought you'd like to know, he has options;)

Friday, June 19, 2009

Bennett's Early Intervention Evaluation and Vitamin Therapy??

Today Bennett was evaluated for Early Intervention and yes, he automatically qualifies whether he's doing what he's supposed to or not so that's good! An occupational therapist evaluated him and said he had great leg tone and arm tone, he's tracking objects good, reflexes were good, he follows a voice and she said he's even starting to smile but he just needs a little better head control. He holds his head up fairly well when he's brought up to a sitting position but he still flops it forward some and she'd like to not see that as much.

She studied his hands and Mike mentioned to her that Bennett does not have the common Simian Crease that is often seen in individuals with Down syndrome. She was a little surprised and also said he didn't have many of the facial features that can be seen (I think it's hard to see them in newborns anyway, but whatever). She asked if we knew what type of DS he had and I told her that after the amnio we were told it was the standard Trisomy 21 so really there is no chance that it would be Mosaic, I don't think anyway. (Mosaic DS, for those of you that don't know, sometimes does not present with all the physical features of DS and some people don't even know they have it because sometimes delays are not as noticeable but all in all it's still DS).

We also discussed his feeding issues and she asked if he was spitting up and I said no and that I was surprised that he has not shown signs of reflux. She noticed him arching a lot and said he may have a little silent reflux and to keep an eye on it and suggested different positions to put him in while sleeping like sleeping on his side with a towel rolled up behind him- this position will also help with not developing a flat spot as well as less work for his heart if he's put on his right side. We would need to be watching him of course so this position is not good for night sleeping. She also showed me how to press on his chin while eating, rather than push up under it, which is what I was doing, to give him better jaw support while feeding and to help with it leaking out the sides of his mouth. Here he is sleeping peacefully on his side ( he was exhausted after she was done with him, poor little guy!)
So for now she recommended an OT to come out to work on his head control as well as his feeding issues. She felt he looked good and seemed to be doing very well for a 4 week old-not that they do much anyway but I will admit I was a bit nervous as she evaluated him, hoping he would do the things she was looking for. I can't imagine how it will be as he gets older and where he will be evaluated to see if he's meeting more difficult milestones.

She also mentioned that she has seen vitamin therapy to work wonders in the children she's worked with. I know this is a tad bit controversial- although I'm not sure why but we will at least look into it to see if it's right for us. If you have input on this, good and bad I would be interested to hear it!

Wednesday, June 17, 2009

A Stubborn Umbilical Cord And A Bennett Update

First, I wanted to say we had a nice time this past weekend with Grandma and Grandpa! It was a short visit, they live 10 hours away so we don't get to see them as much as we'd like but Mike is working on getting us closer to everyone again so hopefully it won't be like this for long! We didn't get a lot of pics either:( But Grandma thoroughly "spoiled" Bennett and held him almost the whole time which I'm sure was fine with him and me:)

So Bennett's umbilical cord has still not fallen off. Is that strange? He will be four weeks on Friday, seems strange to me and I felt like I couldn't wait any longer to put him on his tummy to work on his neck muscles. He's doing good with it and out of the three, he's by far been the most content on his belly. The girls hated it and could barely tolerate the 10 minute tummy-time that I had them do everyday when they were infants. So hopefully Bennett's umbilical cord will come off soon, seriously, why is it still hanging on?? Here he is doing some tummy-time...

Friday is Bennett's first evaluation by Early Intervention. Originally when we met with the case manager she mentioned if Bennett didn't qualify when they evaluated him the first time, (meaning, he would be doing what a typical 4 week old does, whatever that is) that they would put him on a tracking system. I thought to myself "what?" "Didn't qualify, he has Down syndrome though, why wouldn't he qualify?" I later read in the book that she gave us, that children with Down syndrome automatically qualify so I'm not sure what she was talking about but all I know is that the people doing his evaluation are not leaving our house without setting up some kind of therapy. I'm sure it was just a mistake on her part so hopefully we won't have any issues regarding this.

Other than his umbilical cord not wanting to detach, Bennett is doing good! He is gaining weight and is now over 8 lbs, finally! We are struggling a little with nursing though and going back and forth between that and bottles. We may need a feeding therapist to watch him, he chokes some and milk comes out the sides of his mouth. He also just doesn't get enough when he nurses and I know he's working twice as hard to not get as much so I'm not sure what to do. The pump and I are no strangers though, I have had to pump with all my kids, I was just hoping Bennett could be different in that aspect since he did so well the first week but I'm afraid not. I've also started him on "The Baby Whisperer" schedule which I lived by with my girls when they were babies and it worked very well. If you can't tell, I'm a tad bit type A and having my kids on schedules makes me very happy! So far he's following it very nicely and still sleeping through the night! I know, you probably think I'm crazy trying to put a 4 week old on a schedule but it really has worked with my kids and makes our lives so much less stressful!

Anyways, Ainsley will be taking a little over night trip to some fun places on Friday with Grammy, Granddaddy and some other friends, Saturday is Relay for Life with my Mom's group and Sunday is Father's Day so it will be a busy weekend for all of us. Next week is packed with doctor appointments and Mike is back to work, so me and the kids will be going to all of these appointments together, sounds fun, huh? We'll see how that goes...

Monday, June 15, 2009

Plastic Cups And A Plastic Pool=FUN!

We have yet to go to the real pool this year, in fact I don't even know what it looks like! Several of our friends belong so I sent the check in and I'm assuming it will be a nice pool. In the mean time, we pulled out this old, plastic, leaking pool that we bought for Ainsley when she was 6 months old, pretty pathetic that the girls are crammed in this tiny thing and we haven't used it since Ainsley was a baby but as most kids do, they made the best of it! We gave them a couple of plastic cups and they had a ball! Who needs a real pool when you can play in a tiny tub in the back yard?:) And I'm pretty sure Harper is okay without the water wings! There's nothing more fun than dumping water all over your little sister's head!!

This is her face after I told her that wasn't very nice...

Harper loved it though and dumped water on her own head!

They could have played here all day!

Finally, taking a break ...

So I'm really hoping we can make it to the real pool this week so Ainsley can practice her swimming! We'll see how the week goes, this is our last week with Daddy home during the day, then it's back to reality!:(

Sunday, June 14, 2009

The Meaning Of Bennett...

People often ask me if my kid's names are family names and I always say no, but they are now! Not that we don't have nice family names, I was actually considering using Anderson before we settled on Bennett (we would've called him Anders, Anderson is my mom's maiden name) or Cooper (Cooper is Mike's Grandmother's maiden name). I am very particular about my names- obviously I like different names and I tend to like "surnames". I also like my names to "go" with each other as far a a sib set goes, so Ainsley, Harper and Sara or John just wouldn't do (although Sara and John are nice names of course, just not right for the sib set, in my opinion).

So when we found out about Bennett having Down syndrome, for some reason I changed my mind about Anders and Cooper, plus Mike was not totally on board with these names, in fact he was not on board with any names that I had been nagging him about for the past 18 weeks!

The name Bennett had been on my list from the beginning but for some reason it never made it to my top list. So when I opened up my baby name book to search for a new name for our son I came across Bennett again. Bennett means "Little Blessed One". I instantly thought this is the name. Although part of me thought, (I was still in my grieving stage) he's not blessed though, he has Down syndrome. How can anyone think he will be blessed? Again, it had only been a few days and I was still so upset, I couldn't even think past the diagnosis of Down syndrome and what it might mean for our lives. I thought, sure he will be a blessing but is he "blessed" when he has Down syndrome? I know this seems harsh but when you are in this situation, at least for me, it was so hard to see past the negative aspects at first.

The more I thought about it though I felt like this baby was blessed with something different. I felt like maybe he would be blessed with the gift of bringing out the best in people possibly, and I found out he had, even before he was born! Possibly he would help people see past a diagnosis and show them that sometimes what we perceive as hardships are really blessings in disguise! Sound familiar?:)

So even though our Bennett doesn't have a "perfect" heart and it needs to be repaired and even though he has Down syndrome, which in the world's eyes may be far from "perfect", he is blessed, I believe, with something so special and now I truly believe he was meant to be here. For months I have felt guilty about pushing Mike into this pregnancy but as many have told me, this baby was in God's plan and I can finally see that. I know in God's eyes Bennett is perfect and he is my new perfect. I'm so glad I can see that now!

We have received many lovely gifts from people lately and we are so appreciative of them! I recently received a very sweet gift from an old friend of mine, Jen. Jen and I have been friends since maybe the fourth grade or so and we reconnected through face book over a year ago. She sent me this medallion and I love what it says...

On the back it says: "God bless this child, Bennett Patrick, May 22, 2009"

God has blessed this child indeed. He has blessed our lives with this "Little Blessed One". I can't wait to see how Bennett will show others how he is blessed!

Tuesday, June 9, 2009

Heart Update

We saw the cardiologist this morning and he was pleased with Bennett and how he was doing! Bennett weighed in at 7.14, so back to his birth weight and the doctor was very happy with this. I was hoping for over 8 but I guess if the doctor is happy then I should be too. He said he could hear a slight murmur, which he didn't hear on the day Bennett was born. He said this wasn't a big issue just that if the murmur gets louder it could indicate that he's becoming symptomatic and we would proceed with meds. If Bennett needs to go on meds he would have to go into the hospital for 24 hours so they could monitor his blood pressure- they would put him on lasix as well as BP medication. He also said he would like to see Bennett up to 10 lbs before surgery- we've got some work to do!

I told him about the other night and how Bennett went from 10:30pm-6:30am (by accident-I had my alarm set to wake up to feed him around 3am but I slept through it!) He said as long as he continues to gain and not lose weight then I don't need to wake him!! He said we should have two words for Bennett- "Thank You!" Meaning thank you for letting mommy and daddy sleep!!! So we will see how that goes. I have a scale, as you know, and while promising not to go crazy with it, I will keep a check on his weight for a few days and see if we can continue to let him sleep that is if he sleeps and doesn't wake up. He wants to see us in 2 weeks, hopefully Bennett will be over 8 lbs and continue to be symptom free!

On another note we had the girls with us and the little portable DVD player is a life saver! The girls were wonderful and happy to just sit and watch Dora, of course, while mommy and daddy talked with the doctor. All in all it was a good visit and I really like the cardiologist- very friendly and so sweet with our boy!

We've had some yucky weather lately (thunderstorms) so we're inside today : ( We've got plenty of toys though to keep the girls busy. Ainsley likes to be just like mommy with her sling and baby- so cute!

Here's are strong boy "playing" with his toys! So nice to see him alert and awake!

We are hoping to get to the pool this week-I'm less than thrilled about getting into a bathing suit right now though! But Ainsley loves the water and I'm interested to see her in the pool since she did really well at swim lessons. I bought some water wings for Harper though- swore I never would- being a swimmer and all-"my kids won't need wings, they'll learn to swim, I never used them" Well, Harper is not like Ainsley (cautious) and quite frankly I'm a little afraid to just let her be in the water without anything, while trying to keep my eye on Ainsley and Bennett- she may need a life jacket too! I'll let you know how that goes!

Sunday, June 7, 2009

I'm A Sling Wearing Mama!

First off, I wanted to thank all the people that commented on my last post- it's so nice to know I'm not alone in how I feel and that there are others that have been here before. I think right now I'm going to focus on the positive things like the fact that Bennett is home with us, he is for the most part healthy and happy and although his growth may be slow, at least he is eating! I guess we just need to take it day by day and not focus on the future so much. We really do have so much to be thankful for!!

Now, on to my latest purchase: I was never really into wearing slings when I just had the two girls but while I was pregnant with Bennett I thought it may be a good idea to try one because I was picturing outings with everyone being difficult with the big infant carrier. A nice friend of mine offered hers because her son never liked it and I've yet to try that one- but I will because I ended up purchasing a different one as well and so far Bennett loves it!

It's called the Baby K-tan and I'm sure some of you have this or are very familiar with it. What I like is that the makers of it are parents of a child that has Down syndrome as well as a child with a heart defect. Supposedly, the Baby Bjorn is not the best carrier for kids with DS because it causes their legs to "frog out" and doesn't help with tone. The Baby K-Tan is great though for any baby or child- not just those with DS or heart defects. You can carry the baby in all different positions so it's good for bigger kids too.

Here we are with the Baby K-tan:

So outings are much easier because I can be hands free and Bennett doesn't take up any cart space- more room for stuff! (Mike might not like this!:) And he gets to be close to mommy and snuggled up, plus covered from germs!! Anyways, just thought I'd share, too bad I don't get paid to promote this product!;)

Tuesday we will be going to see the Cardiologist for Bennett's first visit of many. The plan for now is to see the Cardiologist every 3 weeks and he will check to see how Bennett is doing and decide on whether or not he needs medication first before surgery to allow him to put on some weight and hold him off a little, or to proceed with surgery. The doctor we are seeing is wonderful and is well known and highly recommended in the area so we are very comfortable with what he decides. I will keep everyone posted on the outcome of his appointment.

Thursday, June 4, 2009

How Am I Doing?

Many have asked how I am doing, I guess they mean as far as recovering from the c-section. I'm recovering well, the section was not fun and I don't want to do it again but the recovery has been good and I'm feeling (as far as my body goes) great!

But I want to be honest, I've always tried to be honest on my blog, every once in a while I feel sad. Not sad like I don't want to talk about it or like I'm depressed about it. I've known for over 5 months that Bennett would have Down syndrome and I handled it pretty well I think but now that he is here, it's real. And every time I think about it I get a little sad. I'm don't want him to have Down syndrome and there are parts of me that still think it's not fair. I hate that this is something we will have to live with and that this sweet baby will have to overcome challenges in his life and I don't want that for him. I think it's hard when you know what the future may hold- as far as delays and statistics verses with Ainsley and Harper I don't know so I just assume everything will be fine with them. How can I assume everything will be fine with Bennett when there are facts starring me in the face that he will be delayed and that he will be a little different from other children?

Now I'm not saying "what if, what if" I'm just saying I'm no superhuman here and I'm just a little sad, it's okay to be a little sad, right? I still love him more than anything but I just wish that things were different right now. I hope this doesn't show a lack in faith, it's not that I don't trust that God has a plan for us and I still feel Bennett will bring many blessings to our lives, it just makes me a little sad sometimes to know that he has Down syndrome. Maybe as time goes on, my feelings will change.

Tuesday, June 2, 2009

Marley, I Mean Blitzen And Me

If you've seen the movie "Marley and Me" and you've had a dog, it probably made you cry. I recently saw it and yes, it made me cry and yes, I felt bad about how I act towards Blitzen, sometimes. Blitzen is not nearly as bad as the dog Marley was and if he was, believe me, he'd be LONG GONE- I have no where near the patience that the owners of Marley had.

However, Blitz has his issues, go here if you'd like to read about these issues. His most obvious and annoying one is his licking and I know it's not his fault- poor guy has a yeast infection- gross, I know. So Mike took him to the vet today and he is on all sorts of meds (nothing we haven't been on before- we've been down this road many times!) but now to add to his meds he has to wear a cone around his head! He's already skiddish so this doesn't help towards his "weirdness"- I don't think that's a word but that's all I can use to describe the dog. Mike thinks the cone will solve my issue (getting extremely annoyed at Blitzen because he's constantly licking) and Blitzen's issue (constantly licking which in turn causes the yeast infection on his skin). So far it's working and he hasn't managed to pull it off but Blitzen is not happy about it and I'm dreading when I have to actually put the thing on him because he can get a tad aggressive when you try to make him doing something i.e.: take a bath, get down from the couch, telling him to leave a visitor alone because he loves people and the list goes on.
I know I've mentioned this before, the dog drives me crazy but Mike reminds me so much of the guy in "Marley and Me" so I put up with it because I guess it could be worse!

On a totally different note, Bennett is doing much better with nursing today, so maybe he was tuckered out from yesterdays appointment. Thanks for all the encouraging comments! I will not let the "What Ifs" sneak into my head!!!

Monday, June 1, 2009

Trying Hard Not To Obsess!

Today we went in for a weight check for Bennett and they said if he gains then we won't need to see a doctor and if he doesn't gain then we will have to see the doctor. So Mr. Bennett gained 1 huge ounce (7.12 now up from 7.11- 7.14 was his birth weight.) So they had us wait to see the doctor. Typically they like to see a baby gain 1 ounce a day so I was expecting to see him weigh around 8 lbs now but since Bennett has a heart defect and DS they are not expecting that with him, I wish they would've told me that before! The doctor was not concerned with his weight and thinks he looks great and said by listening to his heart she wouldn't know that he had a heart defect- this is the first time this doctor has seen Bennett.

I asked her if she felt I needed to start supplementing with higher calorie formula or wake him from his nice 5 hour stretch at night and to my surprise she said for now, no. She really felt like he was okay. So why am I starting to stress just a tad? Well, he's beginning to become an even sleepier eater and anyone that has nursed before knows how frustrating this can be! I feel like it is my sole duty to put weight on this baby before his surgery but how can I if he just wants to sleep!?? Today he has been his sleepiest as far as feeding goes and Mike thinks it's because we were at the doctor and she poked and prodded at him but now I just don't want him to lose weight. (Sorry if you are getting this twice through email- I accidentally pushed publish)

I told her I have a baby scale- yes, I have one because I became an obsessive mom with Ainsley and her weight. If you've ever had a baby in the NICU for an extended amount of time and weight and feeding have been an issue, you know where I'm coming from. So she said that if I wanted to, I could weigh him- but just once a week- not every day- I will try my hardest not to weigh him every day because honestly I don't want to obsess over this I just feel like I'm doing everything I can before having to turn to a bottle and I want him to nurse because I read it helps with speech later on (works on the muscles around the mouth more). I just don't want to give in yet but I want him to gain weight!! I think I'll give it another week and see how he is doing. Otherwise he has plenty of wet diapers and seems perfectly content-if he only knew how he was driving his mommy crazy with his sleepy feeds!!