Friday, June 26, 2009
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
...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
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
Friday, June 19, 2009
Wednesday, June 17, 2009
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
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
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
Sunday, June 7, 2009
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!;)
Thursday, June 4, 2009
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
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
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!!