17 Weeks

This post doesn't have pictures.  I just don't have time right now.  I'll post some soon.  I do have a lot of really cute pictures on my camera.

The babies are now 17 weeks old, and we still have no idea when we might get to come home.  It seems it will still be a while.  I have definitely been having a lot of breakdowns lately.  The ENT came to scope Cade, and it was determined that he has bilateral vocal cord paralysis.  The doctors are all still trying to figure out the cause of this.  It is most likely not from the PDA surgery because that usually results only in left side vocal cord paralysis.  He had an MRI and it was normal which we were very happy about, but it doesn't shed any light on the cause of this.  He will be able to vocalize; the problem will be with breathing.  Depending on how open or closed they are, he may not be able to get enough air.  There is a possibility that he would need a tracheotomy which has left me feeling devastated for days now.  Although, I know that this is not a life or death sentence, it has felt that way to me.  I know that it's not like they told me he has cancer or some other terrible disease, but I just can't accept that he may have to have a tracheotomy.  Yet, I know that I will have to accept it if he needs one.  I want him to be able to breathe.  In some cases, traches are necessary, and in others, they are not.  It's just so hard because I thought we had passed the point of needing one since he has been off of oxygen for so long now.  Spontaneous recovery of vocal cord function can happen in about 60-65% of the time (from what I have read on the internet), so we are praying every day that this will happen.  The doctors are pretty much stumped because they haven't seen any cases of bilateral vocal cord paralysis.  The head of the NICU said she will be consulting with other doctors and ENTs this week.  We are praying for yet another miracle. 

Jimmy has dealt with this so much better than I have.  I asked him why he wasn't as worried as I was, and he told me he didn't see any point in it.  He said as he sees it there's not much we can do about it, we still have our son, and we will deal with whatever we are given.  I wish I could think like he does, but I'm not at that point.

I was excited to see that his MRI was normal.  I need to focus on the things he will be able to do instead of what he won't be able to do.  He won't be a football star, but he can still go hunting and fishing with his Daddy.  He can be a musician.  He can be an artist.  He can be an architect, lawyer, or doctor (or practically any other profession).  There are very few people who make a profession out of being a football star.  I just want him to live a happy, fulfilling life.  And, I suppose you can do that with or without a tracheotomy.

God, we pray for a miracle.  We pray that you give full mobility to Cade's vocal cords.  We pray for what the doctors call "spontaneous recovery" and what we call a "miracle".  I pray for strength for myself to get through this and to learn to accept the things I can not change.  We pray that Cade will not need a tracheotomy.  I know that I need to leave this in your healing hands and quit worrying myself sick.  In your name, Amen. 

16 Weeks Old

Daddy with Camdyn and Cade. Daddy's had a long day at work, and the babies have had a hard day staring at their mobile, learning to eat, listening to stories, and doing "tummy time" (which they hate, but I make them do it.)

Cade (above) wearing his adorable crocheted bear hat and Camdyn (below) wearing her adorable kitten hat which my friend Allison made for them.  Aren't they so cute?

I think Cade's look here is so funny.

I think Camdyn is telling Cade a secret here.

My little monkeys cuddling up in their new monkey blankets that Cory and Katie made for them.  They are so cute.

The babies are now 16 weeks old.  They are doing well, but Mommy is getting very impatient. 

Camdyn now weighs 5 lbs. 7 oz.  She has progressed to eating orally every other feed which is awesome progress.  Next, she'll go to 2 oral feeds, 1 gavage (through the tube).  The next step will be oral feeds every time.  That's the goal.  Who knew eating was so hard?

 

Cade now weighs 7 lbs. 11 oz.  He has fat rolls!  Yay!  We love fat!  He is still getting only 2 bottles per day and having trouble with that.  He still needs to work on becoming more coordinated. 

We thank you God for our precious miracles.  We are having so much fun with them now that we can play with them, hold them, and interact more.  I pray that they will make a lot of progress with eating in the next week.  I pray that they will be able to come home soon.  We thank you for the progress they have made and ask that you continue to strengthen them and watch over them.  Amen.

My Babies Live at NAMC

Today (7/25) was supposed to be my due date.  Cade and Camdyn have now been in the NICU for 112 days; that is 16 weeks.  Everyone tells me they will come home sometime in the future, but it definitely feels like they have taken up permanent residence at North Austin Medical Center.

I filled out some social security papers for the babies a few weeks ago.  On the form, it asked, "How many children do you have?"  Without a thought, I wrote in 3.  That was the easy question.  Next, it asked, "Do your children reside with you?"  I had to think about this one because they are supposed to live with me, and they will eventually live with me, but they don't currently live with me.  Was I supposed to write "1 child lives with me, 2 do not"?  Then, it asked, "If not, where do your children reside?"  They live at the hospital in the NICU, 2nd floor, bed 24.  I wrote in the hospital's address at 12221 N. Mopac Expwy. Austin, TX 78758.  I had to look up my children's address.

Brenna told me the other day, "Mommy, when I was a little baby, I lived at the hospital too until I got big and you took me home."  I just answered, "Yes, sweetie, that's right."  I didn't even try to explain to her that she was "big" on day 1 and that I was able to tote her out of the hospital like all the other lucky parents who I seem to pass constantly in the hallways. 

What does it mean when your babies "live" at the hospital? 

It means you always have to make a plan to go see them (which visitors are going at what times since only 2 are allowed, who is going to watch Brenna, how you will fit in all the other things you have to get done on your list).  You still have to go buy groceries, do the dishes, do the laundry, fill up the car with gas, get oil changes, go to the bank, etc. 

It means that date nights change from "dinner and a movie" to "dinner and a trip to the hospital." 

It means that you can't just wake up and feed your baby; you have to plan to be at the NICU at the appropriate time, get ready, and drive there. 

It means that you have to remind the nurses that you want to be the one to bathe your babies.  And, again, you have to make a plan to be there at bath time.

It means that every time you want to see your babies you have to make yourself look at least as decent as you would to go to Wal-Mart (i.e. shower, brush your hair, brush your teeth, get dressed).

It means that you are the milk man (or woman).  You have to pack up your little cooler of breast milk to deliver fresh to the hospital daily.

It means that you can only be together as a family 15 minutes once a week.  That is how often Brenna is allowed in the NICU.

It means that when you do your babies' laundry, you put it in a bag to take to the hospital intead of in a drawer in their nursery.

I desperately want to be able to hold, rock, feed, dress, and bathe my babies at home without having to make a plan to do so.  I want to be able to sit on my couch with my husband and all three of my children for longer than 15 minutes once a week.  (And, I want to do all of this without taking a shower wearing one of my husband's t-shirts and no bra if that's how I feel!)

Sweet Music to My Ears

We heard some of the best news today - Both Camdyn and Cade have passed their hearing screens!  They can hear!!!!  When the doctor called with the good news, I cried with tears of joy and relief.  I am so happy that they can hear! 


When you have micro-preemies, you look at things differently.  I actually had the thought that if they can't hear, at least they can see.  You have thoughts like, "At least the brain bleed was only a grade I instead of a grade II, III, or IV".  You almost are expected to prepare for the worst.  We have been prepared for all the bad things all along so when we get great news like this, we are overjoyed!


I'm sure the babies are relieved that Mommy now knows they can hear.  I bought them both mp3 players and loaded them with classical music.  We've been playing the music for them since they were in isolettes.  Ever since I found out Cade failed the last hearing screen, I've been conducting my own experiments.  I would hold the music speaker to one ear and see if he would respond in any way.  I didn't know exactly what I was expecting him to do.  If he didn't respond, I would turn it up and try again.  Then, I would move to Camdyn and test her.  Poor babies; I'm sure they were talking to each other saying, "Why does Mom keep blaring this music in our ears?  We're trying to sleep!"  Now, they can sleep peacefully with the music playing softly. 


Thank you God for answering all of our prayers.  We are so thankful for the miracles you have sent us.  Continue to watch over them and strengthen them.  Help them to start coordinating the "suck, swallow, breathe" pattern so they can become more successful with their feeds.  We praise You.  Amen.

15 Weeks Old

Here's a picture of me and Brenna at the baby shower that Bridget hosted for me. It was very nice, and the babies got a lot of great presents. Thank you Aunt BB for the shower, and thank you everyone for the presents!

Here Daddy was changing Camdyn's diaper.  I had him hold his hand up to her to show how little she still is, and I had him hold her tiny foot below.  It is so cute!

Below was Cade's first trip out of the NICU.  I hope his next trip out is to go home.  He went downstairs to radiology for a swallow study to see what type of nipple, bottle, position, etc. would work best for feeding.  He was having a lot of problems with eating, and then he did great during the study.  I think he is just lazy sometimes and doesn't cooperate.

Here are my two sweet peas sleeping together.  They are so precious!

Update:

Camdyn hit the 5 lb. mark!  She weighs 5 lbs. 1 oz.  Cade hit the 7 lb. mark!  He now weighs 7 lbs. 2 oz. 

They had eye exams done last Wednesday.  They both checked out great with no signs of retinopathy for which we are very thankful.  The only problem was that Camdyn got really mad and had to go back on cannula for a while.  Luckily she was weaned back off of it today.  She really hates the eye exams.  They don't have to get another one for 2 weeks.

They get hearing screens this week, and we are praying they both pass.

"Since they are getting big, do they get to come home soon?"  I've been asked this a lot lately, so let me explain.  It's not really about size as to when they get to come home; it has a lot more to do with functioning - i.e. breathing, eating, heart rate, etc.  They are doing great breathing on their own, but they are still fed the majority of their feeds through a feeding tube.  The "suck, swallow, breathe" pattern is very difficult for preemies (especially micro-preemies) to grasp.  It will take some time for them to coordinate this pattern.  They both are allowed to breast feed twice a day, and the attempts at breastfeeding have to be 6 hours apart as to not wear them out.  That makes it very difficult for me because it means that if I want to breast feed them their allotted 2 times a day, I either have to stay at the NICU for 6-7 hours or go back at night.  I want to be able to attempt it twice a day because I figure the more they practice, the better they will do (and hence come home sooner).  Cade is getting two bottle attempts a day, and Camdyn is getting one.  The last few days Camdyn has done much better both on breast and bottle feeding.  I think it has "clicked" for her.  I'm hoping Cade gets it soon.  They have to take almost all of their bottle to get another one added.  We are working up to 8 feeds per day orally, either by breast or bottle.  So, it really is up to them as to when they get to come home.  We've been asked a lot if the doctors give us any predictions for their home coming.  The doctors really have no idea when the babies are going to be able to take all of their feeds by mouth and not desat or have brady/apnea episodes.  Sometimes when they are eating, their oxygen saturation will go down, their heart rate will dip, or they will forget to breathe.  Eating is a very difficult task for them.  (I wish it were for me!)  In order to go home, they have to be able to eat by mouth 8 times a day with no desats, bradys, or apnea.  

The doctor told me that sometimes she thinks this is the hardest part of the NICU stay for parents because it can be very frustrating, and you are so ready to take your babies home.  I told her that while it was indeed frustrating and hard to be patient, this is definitely not the hardest part.  The hardest part, by far, were those first few hours, days, and weeks when our babies were on ventilators and had lines and tubes everywhere.  During those days, I was sitting in the Ronald McDonald Family Room at the hospital and overheard another mom complaining about how difficult it was because her baby wasn't taking all of his bottles.  I remember thinking, "When I get to that point, I won't complain about something so trivial.  True worry is not knowing if and when your baby will be able to breathe."  So here we are, weeks later, at that point, and yes, it is frustrating, but it is a much better place to be.  I will work on being patient, and in the meantime, I will be thankful that my babies are breathing on their own and that we have made it this far.  After all, I now get to hold my babies, rock my babies, and breastfeed my babies.  I know the best part will be when they are home with me and Brenna and Daddy, but this is still the good part.   

Boobs- Part Two

Pivacy in the NICU is impossible to come by. Sure there are curtains that you can draw, but anyone can walk right in at any time - and they do!

I bought a twin nursing pillow when I was still pregnant. I had heard it was a "must have" for breastfeeding twins. When I was told that I would finally be able to start breastfeeding, I got it out of storage and hauled it proudly up to the NICU. It is covered in a fabric with a ton of twin sayings on it like "Double Trouble", "Twice the Fun", "Two Peas in a Pod", etc. It was like some banner yelling to passersby, "Hey, I have twins! Do you see this? I HAVE TWINS!" I haven't been able to push them in their double stroller and there has been no need to set up two of everything in my house when they have been living in the NICU for months. It seemed that this pillow was my only sign to the outside world that I had just had two babies. This pillow has manifested itself into a tangible indicator of my twins' birth, so I couldn't wait to try it out. After breastfeeding both babies separately for a while now, I thought I would give tandem breastfeeding a try. I took out the prized pillow, lined the babies up, and attempted to feed them. Of course, I couldn't take on this formidable task alone. True to the NICU invasion of privacy order, a nurse and her student nurse had to stop in to check on the babies. Instead of checking and then leaving, they just stood there. I'm not sure if they thought I was crazy to try so early, were waiting to see if I needed help, or were just interested in seeing if it would work. Whatever they were, they were not welcome. Can we get a little privacy around here?

After sharing this story with a fellow NICU mom, she told me she too had experienced the invasion of privacy. When breastfeeding her daughter, her nurse told her she had "good nipples". She was shocked and didn't know how to respond. What makes a nipple good?

I know the nurses probably see breastfeeding several times a day, so it is nothing out of the ordinary, but we aren't accustomed to having people stare at our boobs all day. And, we are especially not used to people making comments about our nipples. I feel like I may as well walk around the NICU topless and be on display for any nurses who have not yet seen my boobs. Who knows, maybe they have some comments to offer up.


P.S. The 100 days post somehow got out of order. You can click on it to the right to read it. July 13th was our 100th day to be in the NICU.

14 weeks old

Here's my sweet baby boy. He is filling out so much. He was supposed to be doing tummy time, but he decided to take a nap instead.

Here's my little sweet pea. She is slowly growing but still very tiny. I think she looks so cute in this little polka dot preemie outfit.

Brenna giving her "girl baby" (as she calls her) kisses. So sweet!

Here's Daddy holding both of our little sweet bundles.

Update:

Cade and Camdyn are now 38 weeks gestation or 14 weeks old. They are still in the same crib together, and it is so cute. They are always cuddled up together. I love seeing them together.

Cade now weighs 6 lbs 1 oz, and Camdyn weighs 4 lbs 7 oz. Cade is under the 50th percentile in weight now, and Camdyn is under the 10th percentile in weight. They changed their formula content to a 30 calorie formula. They mix 1/2 of that with 1/2 of breast milk. I have plenty of breast milk for them, but breast milk is only 20 calories per ounce. The combination gives them about 25 calories per ounce. It must be working because they both gained 3 oz. since last night! Usually, Camdyn only gains .5 to 1 oz. and Cade gains 1 oz. to 2 ozs. I can't believe Cade is now 6 lbs !

They both were seen by speech therapy today to work on feeding. They have had trouble with taking bottles. They did well today and are now allowed to get 1 bottle per day again. Hopefully, since they are a little older, they will start being able to coordinate the suck, swallow, breathe pattern.

They have follow up eye exams this week, and they may have hearing screens - Camdyn's first and Cade's follow up. Other than that, they will just be working on learning to eat and growing.

God, we thank you for all the accomplishments the babies have made. I am still amazed that they are completely off oxygen and so very thankful for that. We pray for another round of good eye exams. We pray that they both are able to pass their hearing screens. We ask that they will soon figure out how to eat orally. I pray for patience as I am getting very tired of having my babies in the NICU and want them to come home with me. In your name, Amen.