Sunday, January 30, 2011

Life as it is now....

Just thought I would do an update on Kaitlyn and how the week is going. Or how I am surviving, might be more like it!

Kaitlyn has done pretty well. Just a few times of her sats dropping and having to turn her Oxygen up high. She recovered really well though. It's a balancing game that I hate. When she is awake she just really needs a wiff of O2 now. But when she sleeps she needs more. She will be awake in her bouncer one minute, and fall asleep and the alarm goes off the next. But I am getting better at keeping a constant eye on her monitor so I know when she is dipping and fix it before it goes too low. It is amazing the difference in her with the O2. She is MUCH more alert than she ever was, she stays awake for longer periods of time, and she sleeps 4 hour stretches at night. It's been wonderful.

On the other hand, since yesterday she seems to not be feeling well... or feeling worse than before. I don't know what it is. I am really glad she has a doctor appt with her Pediatrician tuesday morning. Hopefully her ears and lungs are clear now and it's nothing serious. She also has an appt tomorrow morning with a Pediatric Ophthalmologist to get her eyes checked out. I am kinda nervous about that appt. I would really like to hear there is nothing wrong and she just needs to get bigger. We'll see, I guess.


Now for Kaitlyn Survival 101 this week.
When she was in the NICU she got hooked on those Soothie binkeys. It took a month to get her to take something kind of simliar to it, but one she could keep in her mouth. While she was in the hospital last weekend we lost her binky and the only option we had was....yep you guessed it... the Soothie binkeys. She was in heaven. When we came home, she kept spitting her other one out and when I would give her the Soothie ones, she would be happy, but could not keep them in her mouth. I was at Babies R Us on wednesday and found these GumDrop Paci's made by the same company. I bought a package and the rest is history. If you can tell from the picture, they are curved and fit her face so she can keep them in. Awesome!!!




Now for the other change I made yesterday. When I found out I was pregnant, I needed lots of things, including bottles. My sister had these VentAire Bottles I had given her to try with my niece. When she offered them back I jumped on it since I wouldn't have to buy bottles. After having Kaitlyn home for 2 months.... I remember why I hate them so much. They come apart in 6 pieces. I have to take them completely apart to wash them and put them back together. It was so time consuming, especially when I had so much to do.


So when I went grocery shopping last night I bought the cheap Parents Choice bottles and let me tell you it was the best thing I did! No more taking bottles completely apart, washing them, putting them back together, worrying about the bottoms leaking. Pure Bliss I tell you! And since her reflux is so bad anyway..... having a bottle that vents is not making any difference except taking up too much time to clean.

The one thing I really do miss is my rocking chair. We had to have somewhere to put all Kaitlyn's Oxygen stuff and I wanted it to be somewhere that would reach from our living room and into our bedroom where she sleeps. It is getting so amazing how much medical equipment we have in our house now.

This is the Suction Machine we have to suck her nose out. Lately I am getting more formula out of her nose than snot. I am going to have a talk with her doctor on tuesday about what this means and where we go from here.


And last but not least..... this is what we woke up to this morning. Josh had stashed a marker in his room yesterday at some point and had some fun. Good times.


Wednesday, January 26, 2011

Hospital Stay

Kaitlyn is home. Halelejah!!!! It was a long 3 1/2 days in which I did not get any sleep.

She is doing better. She is slowly recovering from her RSV and Pneumonia. It's been so surreal to me that she ended up with RSV. We had it drilled in our heads from the NICU and her Ped that she was high risk for getting it and we did everything we could do to prevent it and she still got it. I am glad that I have learned to trust my mommy instinct and got her in before it got really bad.

We got a suction machine to keep her clear and let her lungs heal. Even though she is home, she is not well yet.

She also came home on oxygen.

This is not RSV related. Her being in the hospital was a blessing in disguise. She has a problem with keeping her oxygen saturation up while she is asleep. I knew there was something going on with her and why she sleeps so horrible from the moment we brought her home from the NICU, why she sleeps noisily and gasps alot. The Ped. thinks it is preemie related and therefore we have no idea how long she will need the oxygen. She was monitered on a cardiac monitor the last 36 hours of her stay and they were able to determine that there isn't something drastically wrong. Good news! She is on a little flow of O2 when she is awake for now and then we turn it up when she is asleep because she needs more. In about 3-4 weeks we are going to wean her off while she is awake. The dr thinks it will be a few months of oxygen when she sleeps. If it goes longer than that, he will start ordering more tests. But for now both him and the other Ped thinks it is preemie issues that didn't get resolved or caught in the NICU. All I know is that she sleeps so much better now. I might actually get to catch up on some sleep soon and feel normal again. Yay!

She also had a Barium GI test done to check for abnomalities in her anatomy that might be causing all the vomiting and spit up. Everything came back normal with a diagnosis of severe reflux. We may or may not do further testing in the near future for that. We started adding Rice Cereal to her formula to thicken it and it's helped a tad bit.

THe only other news I have is that she is finally 8lb! She is 8lb 2 oz to be exact and just a smidge under 21 in. long.

We did get an appt with a pediatric opthalmalogist for next monday. There are alot of concerns with her eyes and if she can see well. I will update after that.

For now...here are some pictures of her from her hospital stay. Also a video at the end. Enjoy!





















video

Saturday, January 22, 2011

RSV... Really??!!

My baby is sick.


She has RSV. I am worried about her. Not as much about the RSV, but other things going on. When I know more I will update.



Even her brothers are concerned.... I think. LOL!

Keep her in your prayers right now if it's possible.

Wednesday, January 12, 2011

Sleep? What Sleep??

I miss sleep.

Over the last week or so, my thoughts are consumed with how I can get more sleep. LOL. Having a newborn is very sleep-depriving. Having a newborn with bad reflux? That is just plain exhausting.

Kaitlyn was switched from the Similac Sensitive for Spit-up to the Similac Expert Care Alimentum 8 days ago. She had started to have diarhea when she came home from the NICU, and it just progressed to something awful. Her Doctor said that diarhea is more concerning than the vomiting/spit-up. So that is why we switched her. And it worked!! She is back to normal and seems much better in that regard. The problem is that her formula is no longer thickening in her tummy and comes right back up. It is sometimes almost comical how much puking I deal with everyday. She goes through several outfits, blankets, burp pads daily. I am not being overly dramatic here either. She can shoot that stuff a few feet sometimes. I know she is miserable and I am too. But as far as her health is concerned we needed to get the diarhea under control asap. We take every precaution we can to help her keep it down, such as not laying her flat ever (except diaper changes), we hold her completely upright for at least 15 min if not 30 after each feeding, and she spends alot of time.....

Here during the day,

Here at night, (it's a travel/portable swing in our bedroom)

And now here.

I used a wedge to create a elevated bed for her in the crib, but it was becoming increasingly obvious that it was just not enough. After the last 2 nights of only getting 15-30 min stretches of sleep all night, I decided to do some re-arranging. I am borrowing my sister's Bouncer Seat since the one we were given was not as supportive for such a tiny newborn. So I put that in her crib today and it will stay there.

And here is where she spends her time in our living room when she is not in the swing. Finally at 7 1/2 weeks old with just a little extra blankets for support, she can use this bouncer seat. So it will stay in our living room. She sleeps well in the bouncer seat during the day, so we'll see if I can get her to sleep better tonight now that the same one is in our room. I sure hope so. I am exhausted!


Notice her bouncer seats are covered with blankets. That is so as she pukes/spits up all day, it won't get on the bouncer seat, and I can just replace the blanket with a clean one. It takes alot of blankets to keep things going around here. I don't have one in her big swing right now, but we cover the front of her with burp pads and it seems to work. Her travel swing is actually toast...I ordered a new one and it is arriving this friday. So it is not covered in blankets either, but usually is. I have used that travel swing with Jordan and Josh, and my sister borrowed it for her 2 kids so it has seen better days. It was used and abused and did it's duty. But I need something portable that I can fold up and take with me if I ever want to hang out somewhere over a naptime. This is the reality of having bad reflux kids. You can't lay them down flat or they gag and choke, so you have to have a plan in place for when you aren't home. I used the travel swing with Jordan and Josh and it was a lifesaver. Oh the things I go through to do 'normal' things. LOL!!
So anyway, to make a long story short, I am being ruled by puke right now and I hope we can find a better balance when we go back for her 2 month appt on the 24th of January. Her Dr said as soon as we got the diarhea under control we would work on the vomiting. She is already on Zantac for reflux, so I am not sure what the next step will be. It's been really sad to see her going through it. It comes out her nose all the time... she has to be miserable. So once again, we wait and see what we can do next.

Friday, January 7, 2011

The Month in Review

I know there has been a lack of posts lately. I promised I would do my best to keep this blog updated, but I didn't count on the many things that have came up.... and adjusting to juggling 4 kids.

Also, I am really sorry for the lack of pictures..... but guess what??? We got a new camera for Christmas!!! So these pictures are taken with that camera and I am finally happy with non-fuzzy pictures (as long as I have the settings right).

So get comfortable, we have had a lot going on!

Scott is doing good. Still working and liking his job. He just recently got a new position at work and he loves it. He has also enjoyed the break from Cub Scouts between having a new baby and the holidays. But now he is getting geared up for the year.

Trevor is also doing pretty good. We started him on a new med over the last month and I think it has helped. It's hard to know sometimes. But he is also recovering from the stress that the holidays bring. I am glad school is back and we can get a good routine going now.

Jordan is doing good too. He is loving having a new sister. He asks to hold her alot and will always run and grab things for me or do something for me while I am busy with her. His new obsession is having me make his chore lists and trying to see how fast he can get everything done. I love this obsession, it's been great for me!!

I am doing much better now. Since my last post, I got an infection in my C-Section incision site and that set me back quite a bit. But I am finally almost 7 weeks out (on sunday) and I am feeling about 90%. I have been careful not to do too much heavy duty too fast so I can avoid any other setbacks. It's nice to be me again though. I am tired of course. Kaitlyn has had some minor problems and so she hasn't been sleeping well. But th at is pretty routine for a new baby anyway. I am getting better at adjusting to the lack of sleep.

Now for Josh. He is doing alright. He has had a rough few weeks and I hope things improve pretty quickly now. I took him to the Dr. 4 weeks ago to have these bumps looked at he has had on his stomach for the last 4 months or so. I can't remember the name of what it was, but it's like a virus in the skin. Since at that time they were dormant, it was better off to not treat them. But since that appt, they have enlarged, gotten red, and he complained all the time about them. During this same 4 week period, I cut way back on his G-tube feedings to see how he would do. He also had been sick since about 6 weeks ago and could not seem to get well. Last week he started having some really off days... meaning very irritable, bad balance, paleness, ect. So I took him back to the dr 2 days ago for everything. We decided to treat the bump things and be done with the whole thing. His dr had to put some stuff on it and basically it burns them off. By wed. night they were huge, red and blistering. It's been awesome. Now you know why I did not want to have to treat them. So that was done. But I didn't get any good news. He lost 2 pounds in 4 weeks. His Ped is pretty sure the reason he is not getting better (his runny nose ect.) and was going downhill was because his body was not getting enough calories again. I felt so awful. It seemed like he ate pretty good..but when I thought about it, I realized he would ask for lots of food but just took a bite or two of everything. So really he wasn't getting much food. So I have started doing a long feeding in the afternoons for like 4 hours and making his wear his backpack again. He doesn't mind and he is not in his booster chair for 5 feedings this way. He has an appt at the Feeding Clinic down at Primary's in 3 weeks. We'll see how he is doing then.

This is his tent with a tunnel that he got from Santa. He loved it once we coaxed him into the tunnel. He was scared at first, but loves it now.

Now for our sweet Kaitlyn. All in all she is doing good. She has had some things going on related to her prematurity. Her little system is just not maturing as fast as we would like. She has had pretty much straight diarhea for the last 4 weeks, spits up and projectile vomits alot. She was started on reflux meds about 4 weeks ago and that only helped slightly. She does weigh 7lb 9oz now and is 20 inches long. So she is growing and her Dr is pretty sure it's not something serious that we need to head to a specialist for. This week we switched her formula from the Similac Sensitive for Spit-up to Similac Alimentum. That is the hypo-allergenic kind... one step down from what Josh uses. And really expensive (try 25$ per can). Already she is improving with her diarhea and fussiness. But her spitting up is really bad. The old formula would thicken in her tummy and she would keep it down better. This new formula does not come in an option to have it thicken so she is pretty much puking left and right. She goes through several outfits, burp pads and blankets a day. The Dr had said he was more concerned about the diarhea than the puking, so we are addressing that first. Since it seems to be working, we will work on the spitting up next. Either adding another med, or changing the one she is on. At least things aren't going straight through her anymore. Hopefully these things will resolve in the next few months. But we have to follow the typical preemie rules and realize she might not 'catch up' for longer than that. At least we have been down this road before with Josh, so it's not so frightning for me. It's amazing how laid back I am about the puking. I just clean it up and move on. Sad thing for me to get used to, huh?
But she is doing pretty good otherwise. Scott and I have some concerns about her eyes, but we have waited to address them until her 2 month appt to give her some time. Hopefully nothing comes of that.
Here are some pictures of her from the last couple weeks.

These next pictures are of her and my neice Evelyn. They are 11 months apart. My sister bought this adorable onesie for her at the beginning of my pregnancy. It says "All mommy wants for Christmas is a Silent Night". So cute. She got the same one for Evelyn and we wanted to get pictures of them in their matching clothes. Evelyn was even so good for the pictures and let us sit Kaitlyn next to her and not hurt her. It was so fun to do this!!!! I am having so much fun with girl things and enjoying the difference this time around.




So there you go. Now you know why I have been MIA lately. It's been challenging, but I think I am finally able to get back into the swing of things and a new routine. I should be better about posting now that the kids are back at school and life is calmer (as calm as it gets for us here).