Monday, July 26, 2010

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.

Sunday, July 25, 2010

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!)

Thursday, July 22, 2010

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.

Wednesday, July 21, 2010

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!


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.   

Tuesday, July 13, 2010

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.

Monday, July 12, 2010

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.
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.

Friday, July 9, 2010

NICU (also known as Big Brother)

You probably never realize how many simple things you take for granted on a daily basis. This journey has taught me to appreciate every freedom we have no matter how small. Sometimes being in the hospital/NICU can feel like you are being watched and dictated by Big Brother. Now, I understand the need for doctor's orders. I know they are only looking out for the best for us, but regardless, it can make you start feeling completely out of control of your life.

It started in Labor & Delivery when I learned that I would have to get a doctor's order to take a shower. That shower approval was huge after being on magnesium sulfate, a catheter, IV fluids, leg compressors, and completely bed ridden for 72 hours. Next, I was given the freedom to take a wheelchair ride, by doctor's orders of course.

Then on to the NICU where doctors orders along with NICU rules dictate everything you can and can not do.

For instance, you are only allowed to show your babies to 4 visitors which must be the same visitors throughout your whole NICU stay. And, no it is not 4 visitors per baby; I tried that one. Shouldn't we be allowed 8 since we have 2 babies? By the way, Mom or Dad has to be present along with only 1 visitor at a time.

I am constantly wondering, "Am I allowed to do this?" If I stop by another babies' bedside to say hi to another mom, I feel like the nurses are frowning upon us as if that is not allowed. I look around to see if any nurses are around if I want to use the sucker thing to get the bubbles out of their mouths. I'm not sure if I'm allowed to do this. Is it okay if I use one of those little saline wipes to wipe the crust from their eyes or is someone going to come tell me that I shouldn't be doing that? Can I bring blankets from home to put in their crib? Is it okay for me to just lift them out of the crib or is a nurse still supposed to do that? Can I go get the comfortable chair two bedsides down? Can I go look for a breast pump on my own or do I have to ask a nurse every time I need one? I've adopted Nike's slogan in my decision-making, "Just Do It." I figure if I am not supposed to do something, sure enough, someone will be there promptly to tell me it is not allowed.

In the beginning, we were told when, how, and for how long we could touch our babies. (I understand they were very fragile, but it is nonetheless strange to be told how and when you can touch your babies' fingers.) As time progressed, we were finally given doctor's approval to be able to do kangaroo care. This actually had to be in written orders in their charts. Eventually, we were able to dress our babies. Again, written orders were necessary to do this. Breastfeeding also requires a doctor's order. Even though I had been breastfeeding Camdyn for 2 days already, the nurse told me that there were no orders for that. I told her I had already been doing it for 2 days per doctor's verbal approval, so she went and got written orders to continue breastfeeding.

With all these orders to do the most basic things like touching, holding, dressing, and feeding your own baby, you would think they would get their own orders straight. For those of you who have been reading my blog, you know how upset I was by the eye exam mistake. I also noticed at one point that Cade's cannula water tank had a sticker that said "change on Thurs." and it was already Saturday. Just the other night, the nurse told me that Camdyn was going to get feeds once every 4 hours. I had to tell her that the order must be wrong because she gets feeds once every 3 hours. She checked with the doctor and sure enough, I was right. That means she would have missed an entire feed that night, and she needs all the nutrition she can get. Now, I understand that people make mistakes and there are miscommunications (and overall I love their doctors), but if it is necessary for me to get permission to do everything, then they should make sure that they are giving them eye exams only when necessary, changing out the water in the cannula at the right time, and feeding my baby the right amount of milk.

Jimmy has joked that if we are there for much longer (which it will still be a while), that I might start writing the orders and asking the doctors to sign off on them. Not a bad idea! (just kidding)

Envy & Hope Walk a Fine Line

I have discovered through this NICU experience that envy and hope really do walk a fine line. We meet so many other parents who are going through similar situations but are on different phases of their journey.

When we were first admitted, we met a couple who had triplets. We watched as their babies were moved from isolettes into one crib together. I visited with the other mom in their "NICU suite" where their babies all co-bedded. In their bed were little tubs full of clothing. At that time, our babies were not even allowed to wear clothing or be swaddled. I envied that she was able to breastfeed her babies and that soon she would be able to take at least one of her babies home. I celebrated with them as they were able to take their other two babies home. And, while I envied all she was able to do with her babies and all of the progress they had made, I realized they were filling me with hope; hope for all the things I wanted for my babies. I recently ran into them again in the hallway to the NICU. They had come to show the NICU staff how big their babies now were. They had grown so much and looked so cute. This time I did not feel envy at all. All I felt was hope. I thought, "This too will be us in a few months. We will come back and show everyone how much progress our babies have made."

I also have met the parents of another set of 24 week twins who were admitted about 2 1/2 months after us. They came by our bedside to visit just the other night. I showed them how much Camdyn and Cade had grown. They were excited for us and couldn't believe how "big" they were. Their babies had just reached 2 lbs. each. They told me that they had just been allowed to hold them recently and that they had finally heard their son cry for the first time. Their daughter is still on a ventilator so they have yet to hear her cry. They asked me if we were able to breastfeed ours yet, and I shared with them that I just recently was able to breastfeed. They admired that our babies were in a crib together and mentioned that they couldn't wait for their babies to be able to be together. It was a strange moment for me because I had been in their shoes not long ago. While they may have felt envy for the things they are not yet able to do, I believe they mostly felt hope; hope that their babies will be out of isolettes, breathing on their own, breastfeeding, and co-bedding soon.

In the NICU, time moves at a snail's pace. You see things that you want so badly, but they feel so far out of reach. You think, "Will we ever get there?" Then you realize you are there but still have further to go. At some point on this strange cycle, you really are there, and someone else is looking at you thinking, "Will we ever get there?" So where does envy turn into hope? Is it all tied into one? Perhaps, sometimes it is envy and sometimes it is hope, but most of the time, I think the two walk hand in hand.

Thursday, July 8, 2010

100 Days


We have now spent 100 long days in the NICU.

In 100 days, we have together driven 8,000 miles back and forth to the NICU. That's around 440 gallons of gas which means we have spent about $1,100 in gas.

We have together scrubbed in approximately 800 minutes in 100 days. We have used approximately 300 scrub brushes between the two of us. Add our 4 visitors, and all together we have used a combined 400 scrub brushes. I sometimes have to scrub in twice if I go downstairs for lunch or come back at night. Between Jimmy and I that is 13 hours of scrub time. I have probably scrubbed in 8 of those hours alone. Can you imagine? That is equivalent to an entire work day of doing nothing but scrubbing in.

100 days means 12,000 minutes of pumping. That's 200 hours or an equivalent of 8 entire days of doing nothing but pumping. Again, can you imagine? All of you nursing/pumping moms know what I am talking about. It really does take up all your time.

In 100 days, we have probably made 400 calls to the NICU. We called very frequently in the beginning. Now, I just call in the morning to let them know when I am coming in and at night to see if the babies gained weight. I actually considered adding the NICU to my "A-list" phone plan (the 5 numbers you call the most).

We have spent 4 holidays in the hospital in the last 100 days. I spent Easter in the hospital on bed rest. The babies were born the day after. Then came Mother's Day, Father's Day, and July 4th - all in the NICU. We sure hope that we will not be spending any more holidays there.

In the past 100 days, I have put in probably 1,000 prayers to the man upstairs.

I am pretty sure that I must have shed a million tears of worry, pain, hope, and joy, maybe more, in the last 100 days.

In 100 days, the babies together have been through 2 oscillating ventilators, 2 conventional ventilators, 2 CPAP machines, and 2 nasal cannulas. They have undergone 2 heart surgeries, over 100 chest or abdomen x-rays, several blood draws, and countless breathing treatments. They have been seen by 5 neo-natologists, 4 therapists (speech, physical, occupational, and respiratory), 2 eye doctors, and numerous nurses. They have rested and grown in isolettes which cost the NICU $40,000 each. Camdyn and Cade have accomplished so much in their first 100 days. They have had to fight for their lives.

We have had so many firsts in 100 days which were magnified to us and celebrated even more. We rejoice with each ounce gained. We were overjoyed when they finally were able to come off the ventilators and amazed when they were only on cannulas. We felt a great sense of relief when we saw them breathing on their own with no machines. We felt pure joy holding them for the first time. We were excited seeing them able to wear clothes and be swaddled after being on skin control for their temperature for so long. I felt a sense of peace breastfeeding them for the first time. When we saw them together in the same crib after 13 1/2 long weeks, we felt elated. Every step has been so special since it took them so much effort to get there. We are so proud of them!

Every mile driven, second scrubbed, minute pumped, holiday spent, prayer spoken, and tear shed, has been every bit worth it to hold our tiny, precious babies in our arms. Every step we have taken on this long journey is one more step closer to bringing our babies home to be with their sister, Mommy, and Daddy.

Back Together Again!

My babies are finally together again after 13 1/2 weeks. (7/6) They are now in the same crib together, and they look so cute. They get to cuddle up next to each other. It is slightly easier to leave the NICU now because at least I know they have each other. On the 4th, all the open crib babies had flag blankets on. It was so cute. They looked like a little parade of patriotic babies. Notice that both Camdyn and Cade have no cannulas! They can breathe! All by themselves!

I have been waiting to take this picture since they were born. These are their micro-preemie hats that I had to order online. I knew Cade's would not be fitting at all soon, and Camdyn's is kind of tight. So, here they are together - my truly miraculous babies!

Cade being patriotic. He is getting so chubby. I love it!

Camdyn wearing the ridiculously big bow I made for her.

See anything different? No cannula!

Camdyn gets her first bottle. (7/6) She did pretty well with it. The bottle looks as big as she does.
Camdyn and Cade are both now off oxygen which is amazing! They are also now in a crib together. I love seeing them all cuddled up when I go in. I have been waiting so long to get to see them in the same crib together.
Camdyn - Camdyn started taking 1 bottle per day and breastfeeding 1 time a day. She still doesn't take much from the bottle or the breast, but she is trying and getting some. She will get better at it. She still occasionally has brady/apnea episodes. I hope she outgrows these soon. She finally reached her 4 lb mark last night (7/7). She now weighs 4 lbs. 1 oz.
Cade - Cade is getting breastfed twice a day (when I can make it to the NICU twice a day). He is not getting any bottles right now because he was having a lot of trouble with them - choking, desatting. They are giving him a few more days to try again. They don't want him to develop an aversion to the bottle/eating. He does well at the breast because he has more control. He has not had any brady/apnea episodes in about 3 weeks. On the worrisome side, he failed his initial hearing screen. We don't know if it was due to fluid in the ears from the cannula, partial hearing loss, or more severe hearing loss. He will be tested again in a few weeks. I feel like he can hear me. Cade now weighs 5 lbs. 11 oz. That's like a small newborn - not even a preemie.
They are now 3 months old, and we haven't even reached our due date of 7/25 yet. We still have 3 weeks to go to reach that. And, we have 3 month olds who weigh 4 lbs. 1 oz. and 5 lbs. 11 oz and wear preemie and newborn sized clothing. This is all so crazy, but we are so very proud of our babies. They are absolutely amazing!
God - We are so thankful for all the progress the babies have made. We are thankful that they are off oxygen and breathing on their own, breastfeeding, and co-bedding. We are amazed by them every day. Thank you for sending us these little miracles to love. We pray that they both are able to hear. If there is hearing loss for Cade, we pray for miraculous healing. We ask that you continue to watch over them, protect them, heal them, and make them stronger. Amen.