Wednesday, October 20, 2010

It's Not Getting any Easier!

I've been asked by several people if it is getting any easier, and told by others, who have no clue, "Oh, it will get easier."  The people who are telling me, not asking me all come from people who have not had micro-preemies.  Yes, it does get easier for full-term babies.  They start taking their bottles more quickly, then they move to feeding every 4-5 hours, then they start sleeping through the night, etc., etc. etc.  These things all happened with Brenna, but those things are foregin to us now.  I want to ask these people who say with so much certainty that things are going to get easier, "How do you know it's going to get easier?  Did you have micro-preemies or even preemies for that matter?  Do you have any idea how difficult it is to manage 5-6 doctor/therapy appointments per week for each of your twins, try to find time to mix bottles, spend an hour to an hour and a half feeding them every 3 hours, keep your house clean enough to live in, try to find time to do the exercises recommended by all the therapists, and maybe fit in a shower?"  But then I decide that would be rude and they are only trying to be nice, so I just nod my head in agreement.

While I don't have to worry about them as much as I did (Thank God!), our schedules seem to be getting more demanding than less.  My frustration level is through the roof.  We are working with Early Childhood Intervention, a state program that provides therapy services to children under 3 years old who qualify.  After about 3 weeks of phone calls, we finally now have a speech therapist who works on feeding issues with both of the babies and works on Cade's oral aversion with him.  She is great and has helped a lot.  The coordinator is not so great.  When I asked about getting physical therapy services for the twins, she told me that she didn't really think they needed it without ever having a physical therapist even touch them.  I had to tell her that they are 24 week babies.  Of course, they need it!  They, at least, need to be seen by a physical therapist to determine if they need it.  I had to seek private physical therapy and discovered that Cade has torticollis, which means his neck muscles are tight causing a right side head preference.  She has been working with him on this and says it should be better in a few months.  When I told the ECI coordinator about this and asked again if they could send us a physical therapist, she told me that I shouldn't expect the babies to do what a 6 month old baby does which I already know.  Does she really think I don't know that ?!?  Then she told me that a way that I could save on co-pays with the private therapy was to have them just see Cade and then do the same things with Camdyn.  I wanted to scream, "They are not the same baby.  They are TWO different babies with different needs." So frustrating!  The most frustrating part is now that we are about to move into our new house, we have to completely change ECI programs because we will be in a different county.  I'm sure I have a ton of frustration ahead of me.  This means that we are going to lose the speech therapist who we like and who knows how long it is going to take them to get us a new one.  I have found an occupational therapist through a private company that is going to see Cade also two times a week to work on feeding.

I posted a while back that I wasn't going to complain about the babies not taking their bottles.  I had overheard so many parents in the NICU complaining that their babies wouldn't take their bottle when I didn't even know if my babies were going to live.  I said that if we get to that point, I wouldn't complain about it.  Well, I want to take that statement back.  I had no idea that we would still be dealing with it at this point and it was going to be such a battle for us.  I thought they would get it a few weeks after their due date.  After all, the other babies in the NICU all seemed to get it by their due date.  I was giving mine a little more time taking into account that they were earlier than most.  I am so thankful that this seems to be our only major issue; I know things could be a lot worse.  So while I am grateful that they escaped so many preemie issues, I can't deny that I feel frustrated.

Babies' Update:

Camdyn is doing much better.  In fact, she is completely off the ng tube !!!!  She is working on taking all of her bottles.  She still gets very tired at the end, and she is really tired during the night feeds, but she is making a lot of progress.  It still takes 45 minutes to an hour to feed her.  I hope she will be able to get faster at this.  She now weighs 11 lbs.  She is doing great in motor development.  The physical therapist said she is actually a little ahead of her adjusted age (2 1/2 month) milestones and that she will only need to be seen once a month to follow her development.  It is so cute when she stands assisted or pushes up on her hands and looks around because she is still so tiny.  You wouldn't normally see an 11 lb. baby doing these things so it is pretty cute.

Cade had another ENT appointment last week.  She said that his left vocal cord has drifted slightly more to midline and that the right vocal cord was very active.  While that wasn't a significant change, it was still good news.  She said that was probably why he was able to pass his swallow study.  We have been putting flavor on his pacifier and that has really seemed to help his gagging.  He started today with the speech therapist trying to take a few swallows from a bottle.  He managed to take 2-3 swallows, and when he did this I cried as if he had just won an Olympic medal.  I was so proud of those 2-3 swallows!  We were given several exercises to do with him to help build his oral muscles.  I am so hoping that this all is going to work.  He now weighs 14 1/2 pounds.  He will still see the physical therapist weekly to work on his tight neck muscles.  This was most likely caused from being in the NICU for so long.  We also are going to be getting Cade a Doc band (helmet) to shape his head.  This is not a medical necessity, but I want him to have a nice "dome" (as Daddy calls it).  It is misshapen from laying on his right side so much in the NICU.  He'll have to wear it for probably 2-3 months.  Our insurance doesn't cover this, but I still feel like he needs it.  His head is very flat in the back and his forehead is more prominent on the right side.  If I don't do it, I'll always think I should have.  It's best to do it earlier since it is easier to shape the head.  After 12 months old, it doesn't work very well.  Stay tuned for some pictures of my little man sporting his handsome helmet.

Both babies will be getting their first Synagis shots on Nov. 1st.  This is the RSV vaccine.  I am going to be able to breathe just a little easier once these begin.  If they were to contract RSV, it would be much less severe with the shots.  If they were to get RSV without the shots, it would be life-threatening.  They have to get 5 shots - one each month Nov, Dec., Jan., Feb., Mar.  The shot lasts for about a month.  Insurance does cover this which is awesome because we wouldn't be able to afford it otherwise.  Each shot costs $2,500.  Multiply that X 2 for each baby = $5,000 per month.  Multiply that X 5 months = $25,000 in shots!  Wow!

So, if you have read through all of this long post, you have finally made it to the good stuff.  There is a lot of good stuff.  I may have sounded frustrated, which I am, but I am also enjoying my babies so much.  We are having a great time between all those feeds!

I'm under all those babies somewhere.  I could sure use another arm.

a proud big sister

This was so cute.  Brenna was "reading" to "girl baby" and "boy baby".  She would "read" one page to Camdyn, and then go to the other side of the living room to "read" one page to Cade. (excuse our messy house - we're moving soon)

Camdyn showing off how big she is.  Look at how much she is pushing up.  I am so proud!  I bought the little dress she is wearing when I was still pregnant.  It is a size 0-3 months.  I thought it would be perfect since she was going to be born in the summer.  And, even though, she was born in the spring, it just now fits.  At least, she is finally out of preemie and newborn clothes.  I had to hurry and let her wear it before it gets cold.

Here we are sporting our new triple stroller.  I went with my friend, Andrea, who I met in the NICU (she has triplets) to the Austin Mothers of Multiples consignment sale.  We had so much fun.  Lucky for me, a triplet mom was selling her stroller.  I saved more than $200 from a new one.  I was so excited!

Last but definitely not least, you all have to check out the precious pictures that my good friend Jennifer took of my kiddos.  They are adorable.  She did such a great job and was so patient.  Thank you Jennifer.  You are amazing!


Lachelle said...

I'm still praying for you Michelle... I know this is so much to take but you are doing it with such grace. I admire you. Hang in there! I absolutely LOVE the pictures your friend took of the kids and you. They are wonderful.

Lisa Kestler said...

I am so happy ya'll are all doing so well, even with the ups and downs. Your babies are precious! Heidi is now 6 months old. She was born one week after the twins. Cade is bigger than she is! She weighs 13.5lbs.

Take Care,

Anonymous said...

Michelle, honestly it definately doesn't get easier, but it does get different...there are always challenges they just change as the baby grows :-) And, when you finally overcome one challenge you feel great...then you go on to tackle the next. My child is almost 7 and we went through countless ECI therapists and coordinators. We never had a good coordinator (i know not what you would want to hear) but we had some AMAZING therapists. Just stay on them and if your coordinator isnt do anything or responding call the ECI office and demand a new one. That is your right and they will respond! Hang in there!

Megan said...

First off, those pictures are absolutely amazing! What beautiful children you make! :)

I am so sorry to hear that you have a bad EI case manager person- ours is sooo soooo wonderful (however our medicaid case manager is a complete dud). I hope that with the new county you will get a new person??

Congrats on all the good eating news! You're all making progress! Yay!

TNT said...

Hi Michelle,
I of course, no nothing of what you're going through, but think you've really handled every minute of it beautifully and eloquently. I know your time is at a premium, but if you'd like a blog to reference, the kids had classmates at the French immersion school who are boy/girl twins and micro-preemies of 26w5d.

They just turned 5 on Sept. 15, so they'll enter kinder same as Cecily next fall.

Gail's blog is For further similarities, she too, is a local businesswoman and the owner of blackmail boutique on South Congress. Her blog frequently mentions significant challenges and changes, so perhaps it will bring you some comfort or simply provide you with another reference point.

Gail has "several" years on you (as you'll see on her blog), and has also faced her own health challenges, and yet she continues to motivate and inspire those around her much in the way you have with your blog.
Best to your Bunch, Tracy

Kelee Payton said...

Oh has been so busy I haven't had time to read your blog until now. Your babies are so beautiful. I was so surprised when I saw the pic of Camdyn. I can't believe she is pushing up already. What a strong little girl!! I just want to eat them up! So happy to hear they are doing so much better and I know God will give them so much strength to continue to grow and be the best little micropremies ever. Sorry that everything is so frustrating, but it wouldn't be right if it wasn't. We love you guys and keep on fighting the good fight. Tell Jimmy "Hello and keep on smiling."

agcat01 said...

Every time I think of you and your sweet babies, I am reminded of your nights. Most moms get up to feed their babies a couple times a night until they are 4 or 5 months old. You did it for that long, and they hadn't even come home yet. Now that they are home, you pick up at their "beginning". So the Turner baby and his momma are praying for your nights....for as long you have them. A rested momma can deal so much better with all that she is given; blessings and challenges. With all that you do handle, thank you for letting us know and walk with you in prayer.

Donna Mossholder said...

Ummmmm yea you haveTWINS....that alone is hard enough if they had no medical issues but holy are also working on top of all of this and moving. I am surprised you are still standing. Wish I could help somehow. We have been sick so we have been laying low but email me if you need a meal anything. I so feel for you!!! (((((hugs)))))))

Annie Johnston said...

Hi Michelle, We remember you from the NICU. We were the triplet family across from you at NAMC. Your kiddos are so beautiful, and the progress they have made is amazing. We are going through eating problems with one of ours as well. We are finally starting to see gradual improvements.. Kuddos to you and all your hard work. It will surely pay off!