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!www.jenniferschattleblog.com.