My Growing Babies (and Cade's swallow study results)

Here's a picture of my cuties in matching pjs.  I just love coordinating outfits.  It's so much fun!  Camdyn is finally out of newborn clothing.  She now wears 0-3 months, and Cade now wears 3-6 months. 

This picture show just how much bigger Cade is than Camdyn.  Camdyn now weighs 10 lbs, and Cade weighs 13 lbs.  They don't look like twins.  Cade looks at least a month older.

Brenna holding Camdyn.  She just loves her "girl baby" so much.

Camdyn talking to Cade.  She was really focused on him.

Daddy and the babies watching football.  They are all very focused on the game.

Brylee, Colin, and Brenna were making crafts at the table.  My mom decided that the formula can was a perfect stool for Camdyn.  She actually fit perfectly on top of it.

This was the first intentional social smile that Cade gave me.  I was so excited that I cried.  He had given me smirks and grins before but not a big excited smile.

This was too funny.  I had just brought the babies inside from their pediatrician's appointment and was warming milk for them.  I look in the living room, and Brenna is pulling Camdyn with the strap of the car seat across the living room floor.  I asked her what she was doing, and she told me that "girl baby" wanted to play in her room.  I walked over to check on Camdyn, and this is the smile she had on her face.  I guess she liked Brenna's plan and liked her ride across the living room floor. 

I haven't updated in a while so here are a lot of updates.

Camdyn - Camdyn now takes 5 bottles by mouth during the day and gets 3 gavage feeds at night.  That means that we have to reinsert the tube every night which is not fun.  I have to say that I am getting really good and quick at inserting the tube.  We take it out every morning.  Without the tube in, she is able to take her bottles better.  It has been a very difficult feat to get her to take her bottles.  It takes approximately 1 hour for each bottle.  It wears her out so much that she pretty much just sleeps until her next bottle, and it exhausts me as well.  The big test was to see if she would still gain weight when we moved to 5 bottles, and even though she exerts all her energy on taking the bottle, she did gain weight!  We will continue with this plan for a few more weeks before going to all bottles.  She meets with speech therapy next week to work on taking her bottles better and in less time.

Cade - Cade had his big swallow study this morning which we had been anxiously awaiting for a long time now.  He passed with great difficulty.  He was able to protect his airway which was the big question.  He only took a few swallows so we still don't know how he will do with a greater volume.  He did not aspirate on the swallows that he did take.  He has a very severe gag reflex.  He gagged the entire time.   He also has a strong oral aversion.  The gagging and oral aversion are due to the negative associations of unpleasant things in his mouth - i.e.  breathing tube, feeding tube, scope.  Now, we start intensive feeding therapy with a speech therapist two times a week.  They will work with him to hopefully start associating feeding with positive feelings.  I don't know yet what types of things they will do; we are just hoping it will work.  He will do this for 2-3 months and then go for another swallow study.  Hopefully, at that time, he will no longer gag, be able to take more volume, and still protect his airway when taking more volume.  Overall, this was a good result.  At least, we now have a plan and goal to work towards.  I have a feeling that down the road, he will be 'eating us out of house and home' and I'll have to remind myself how happy I am that he is eating so much as I pay the cashier at the grocery store! 

God- We are so thankful that Cade is able to swallow safely.  We pray that feeding therapy helps his oral aversion and that he can learn to like eating.  We pray that he will be able to take enough volume safely after therapy to sustain weight gain.  We are so thankful for Camdyn's progress on oral feeds, and we ask you to continue to make her stronger to be able to take all of her feeds by mouth.  We thank you for their health.  We ask you to continue to keep us all healthy.  Amen.

5 1/2 months old

Brenna just before dance class.  Tutu cute!

Camdyn has been all smiles lately.  It is so sweet.  In this picture, her cousin Brylee was getting her to smile really big.

Camdyn looks like she's saying, "Wait Mom, I'm not ready yet."

my cute babies being nice

. . . and not so nice

. . . and nice again

Brenna decided that Camdyn wanted to play dress-up.  Camdyn does not look nearly as excited as her big sister.

Camdyn's cute toes in her tutu.

Daddy with the babies on the couch.  They take up a lot more space on us now than they did.  I posted 2 pictures below to show you just what I mean.

That's all of Camdyn in his right hand.

They both fit on my chest with room left over.  In this picture they were a combined weight of 5 lbs. - Camdyn was 2 lbs; Cade was 3 lbs.

The babies decided to pull their nose tubes out so I had to take the opportunity to take some pictures with no tubes. 

Camdyn and Cade with no tubes.

cute naked babies after their baths

Last week at our doctor's appt., Camdyn weighed 9 lbs. 2 oz, and Cade weighed 11 lbs. 11 oz.  Camdyn only gained 5 oz. since the previous week.  Cade gained 11 oz.  Our pediatrician told us to give her more gavage feeds.  She now takes 4 bottles and 4 gavage feeds a day.  She is capable of doing more bottles, but she doesn't gain enough weight.  I wish I could lose weight just by the exertion of eating!  Hopefully, she will have a bigger weight gain this week.  She has been off of her oxygen since last Tuesday!

Here's a sampling of how our weeks go now:  Tues.- babies get blood drawn.  Wed. - Camdyn goes to pulmonologist.  Thurs. - babies go to pediatrician.  Fri. - Brenna and I go to dentist.  Mon. - occupational therapist comes to the house.  Wed. - pediatrician again.  Thurs. - Cade goes to get swallow study.  The sad part is that I dress the babies up to go to all these appointments like we are going somewhere fun.  These are their only outings so I have to use all their cute outfits.

God - We are so thankful for the health of the babies right now.  We ask that you continue to keep them healthy and help them grow stronger every day.  We are thankful that Camdyn is off of oxygen, and we pray that she will continue to do well without it.  We pray for good weight gain for both Camdyn and Cade.  We pray that Cade will be able to safely eat some consistency during his swallow study next week and will be able to begin oral feeds.  We ask that you keep all the rest of us healthy as well.  Amen.

I Have the Right to Worry

All mothers worry.  It's part of the job title, but for some reason, when I worry, it is perceived as being pessimistic or ungrateful.  I want everyone to know that I am going to continue to worry about my babies for as long as I live.  I will worry about my babies until they have babies of their own, and then my worry will be multiplied because I will worry about them and their babies. 


Let me first say that I am eternally grateful for my sweet, beautiful, miraculous babies.  They are my everything.  Everything that I do now, I do for my children. 


I often feel like I have to be some cheerleader for my friends and family telling them how wonderful the babies are doing.  Overall, the babies are doing wonderfully.  They are both healthy now and growing, but I still have vey real worries.  I know that things could be worse, but they could also be better.  I feel like I am expected to feel perfectly content with our situation because after all, they were 24 weekers.  Yes, it is absolutely amazing and miraculous that they are here with me.  However, that does not change your dreams for your children.  It doesn't make it any easier to accept that they still have to have ng tubes.  It doesn't make it any easier that their lungs are so much weaker than term babies.  It doesn't make it any easier to accept that Cade is going to have great difficulty in learning how to eat.  It doesn't make it any easier that he may have to have a g-tube.  It doesn't make it any easier that he won't be able to play sports.  It doesn't make it any easier that we have to be isolated all through the winter.  It doesn't make it any easier that I can't show off my babies like other parents.  It doesn't make it any easier that when our babies get a cold they have to go to the hospital.


You would never expect a mother of full-term babies to be content with a grade II head bleed, open heart surgery, chronic lung disease, a paralyzed vocal cord, and a 4 month hospital stay.  So, why am I expected to?  It doesn't matter if your baby is born at 24 weeks or 41 weeks (I've experienced both); your dreams and wishes for their future are the same.  There is not some magic wand waved over mothers of premature babies that makes them expect less for their children.


This experience robs you of so many things.  I felt robbed of my pregnancy.  After all, I missed out on the whole last trimester.  You hear people say how terrible the last trimester is.  I want to scream, "At least you had a last trimester."  I want to tell people (myself included with my first pregnancy) this.  Don't complain about your baby moving around too much; you would sure miss it if it was suddenly taken away.  Don't complain about your own back pain; maybe your baby won't need a lumbar puncture when he is born.  Don't complain about not being able to sleep; worrying about your baby and calling the NICU all night is much worse.  Don't complain about heart burn; your heart burn now might mean that you will carry your baby long enough that he won't have to have open heart surgery when he is born.  Don't complain about your baby being up in your ribs; I wouldn't have cared where they wanted to be if they could have just stayed inside.  If you think you are emotional when you are pregnant, that is nothing compared to the emotional rollercoaster of having micro-preemies.

I claim the right to express my worries without being perceived as a pessimist.  Sometimes I want people to simply agree that yes a lot of this sucks.  I don't want to always be told to be positive.  When Brenna was a baby, I worried excessively over her getting ear tubes.  Now, I realize that was a very minor procedure.  Now, we have much bigger worries, and constantly being told to be positive seems to invalidate the severity of the issue.  My son is 5 months old and can't eat.  I have the right to worry.  

My sister always tells me to be positive and I know she is going to continue to do so.  We just had this conversation, and she told me that my job is to complain to her and her job is to remind me to see the positive.  I love her for this.  She was the one who confiscated my maternity clothes after the babies were born which was a good thing since it was hard to look at maternity clothes that I had not even had a chance to wear yet.  She is also the one who made me get out of the house when I felt like doing nothing but cry.  I understand the balance and I love reading everyone's comments, but just so everyone knows, I don't always want to walk around like everything is perfect because it's not.  I will continue to have both good days and bad days.

Because I am overall a positive person, I have to say that I do understand just how lucky we are.  I have often thought of our family as "the luckiest unluckiest people in the world."  To have babies born so prematurely is really unlucky, but for doing as well as they have, we are really lucky.  They have managed to avoid a host of problems that prematurity presents.  They are absolutely amazing, miracle babies whom I love dearly, and because I love them so much that it makes my heart hurt, I will continue to worry incessantly about them. 

From the eyes of a 3 year old . . .

I need to write a post here showing Brenna's perspective.  Being 3 1/2 years old really has its advantages.  People ask me all the time how Brenna is handling everything.  Since she doesn't know any different way, she thinks that all of this is absolutely normal.  Here are some anecdotes from Brenna to amuse you just as she amuses me every day.

(when the babies were still in the NICU)

Brenna: Mommy your sad because our babies live at the hospital, right?

Me: Yes, baby.

Brenna: It's okay Mommy.  When they are stwong and helfy, they will live with us.

(during bathtime after seeing my c-section scar)

Brenna: Mommy, that's a bad boo-boo.

Me: Yes.  Do you know why I have that boo-boo?

Brenna: That's where they cut the babies out.

Me:  That's right.

Brenna:  And me when I was a baby.  And I lived at the hospital until I was big.

Me: That's right baby. (I did not inform her that she was a vaginal delivery and "big" on day 1, not day 133)

 

(upon carrying in Camdyn's oxygen tank)

Me: This is a lot of machine for such a little baby.

Brenna: I had sheens too when I was a baby and I drinked milk through my nose.

(See what I mean.  She thinks this is all very normal.)

(all the time)

Brenna: Mommy, when you're done with boobie-pumps, can we play bawbies (Barbies)?



(recently in the car)
Brenna: Mommy, we win.
Me: What do you mean 'we win'?
Brenna: We win cuz we have 2 babies. Other people just have 1 baby, so we win!
(I love this, and I agree. We absolutely win because we are so blessed to have our sweet babies with us.)

5 months old (1 month adjusted)

We are all home again.  Camdyn was able to come home on Monday evening from the hospital.  We did come home with oxygen and a pulse oximeter to measure her saturations.  Since we have been home, she is only requiring 1/16 to 1/32 of a liter.  That is very low.  We will follow up with the pulmonologist in 2 weeks to see if she will be ready to come off of the oxygen.  She has made great progress with her bottles.  She now takes 2 bottles by mouth and then 1 gavage feed.  She has been taking her entire bottle lately.  I am so excited about that!  At the pediatrician appt. today, she weighed in at 8 lbs. 13 oz.  Yeah!

Cade is doing well.  We have his swallow study in about 2 more weeks.  At his appt. today, he weighed in at 11 lbs.  He is still under the normal growth chart, but he is trying hard to get up there.  To me, he looks huge!

The babies are now 5 months old (1 month adjusted).  That always sounds so weird.  I guess it probably will for a long time.  They are amazing me every day.  They have already come so incredibly far.

I finally have a lot of pictures to post.  Most of these were taken in the past 2 weeks. 

Here is a picture of our first stroll.  I squeezed all 3 kiddos into the double stroller.  This was our first outing that was not a doctor's appointment.

I thought this was so cute.  They were sleeping just the same.

Brenna kissing Cade.  Cade was all dressed up in his "big boy" clothes for his ENT appointment.

Camdyn dressed up in her "little black dress".

Here's another set of comparison pictures.  Camdyn was the size of this diaper (size 1 diaper) when she was born.  Now she is wearing a size 1 diaper.  Pretty amazing!

This is a picture of what we use in one day - 15-20 diapers, vitamins, iron, aminophylline (no longer use now), 16 bottles, 2 feeding pumps, and now we have added an oxygen tank and pulse ox which we will hopefully get rid of in the next few weeks.

Taking care of my twins is sort of like being a full-time nurse.  I have so many job titles now.  I have my real job of running a dance studio and teaching classes plus all my new jobs - nurse, therapist, and baby secretary.  I think I need to hire a secretary to keep up with all of their appointments.  Here's an example of my secretarial to-do list: call to schedule Cade's swallow study (already called twice and the docs haven't sent the orders), call the ENT if they still haven't sent it, call to schedule Camdyn's follow-up pulmonologist appt., call ECI for the tenth time to get an occupational therapist to come to the house, call Social Security to check on benefits, call insurance company to go over claims.  It's a never-ending list, but the babies are so worth it!

Since we don't go anywhere, I have to show off their cute car seat covers on here.  Brenna also has one for her toddler car seat that matches Camdyn's but with hot pink trim.

Below are pictures of Camdyn in the hospital.  She had so many monitors on her chest and an IV in her foot.  It was very sad to see her with all this stuff again.  They did so much to her that her little arms were bruised.  It makes me sad just thinking about it.

Look how cute she is hugging the little duckie that the hospital gave her.  What a sweetheart!

I know this is not the best picture, but I was trying to take a picture, hold her, and get her to keep smiling.  This was in the hospital.  Talk about having a great attitude - she was giving me the cutest smiles during her hospital stay. 

"Who put me in this pink princess chair?  Daaadddd - HELP!  I'm really outnumbered here when you go to work."

Cade: "Sissy, I'm so glad you're home.  I really missed you."

(Notice Cade's long eyelashes.  He stole them all from Camdyn.  She has tiny little eyelashes.  I love looking at Cade's long eyelashes and think about how their eyes were still fused shut with no lashes and barely any eyebrows yet when they were born and just marvel at how far they have come.)

a holiday - what's that?

When we were still in the NICU, I said I don't want to spend another holiday in the hospital.  Maybe I should have clarified that meant "any and all hospitals".  We have spent Easter, Mother's Day, Father's Day, July 4th, and now it looks like Labor Day in the hospital.  Hopefully, we won't have to spend Halloween, Thanksgiving, and Christmas there too.


On Wednesday, I came home from the studio and noticed that Camdyn was looking a little pale.  After a little time passed, I noticed that her lips were looking bluish-purple too.  I called the pediatrician and they told me to rub her feet and try to get her to cry.  After a few attempts, she was still not responding.  I decided then to take her in to the pediatrician.  Kathy drove and I sat in the back with Camdyn.  I called the pediatrician again and he told me to get there fast.  We put on the emergency flashers and tried the best we could to get there fast in the middle of traffic.  I carried my little limp baby into the doctor's office, and they put her on oxygen right away.  I was scared to death.  They put her on a pulse ox, and I saw that she was satting in the 60s.  I knew too much from being in the NICU so long.  I knew that was not good and just began crying and telling her how much I loved her.  The pediatrician had the nurse call 911 and an ambulance came to pick her up from the doctor's office and take her to Dell Children's hospital.  In the ambulance, they put her on oxygen and a pulse ox.  By this point, she was satting 100 (perfect), so I was able to breathe again. 


When we got to the ER (around 5 PM), our pediatrician, Dr. Cohen, was already there waiting for us.  I thought that was so amazing.  He did not have to go to the ER to be with us, but he did, and he beat the ambulance there.  That is a doctor who really cares!  In the ER, they did a ton of tests and put in an IV.  She had a blood gas done and it looked good.  They were worried that it would show she had not been getting enough oxygen since she had been pale for a while.  That was good news.  She then had a blood analysis and urine analysis which both turned out fine.  Then they took her to have two chest x-rays and one abdominal x-ray (all fine).  They even said that her lungs looked good for a 24 weeker who had been diagnosed with chronic lung disease.  That was good news.  Next she had a lumbar puncture to rule out meningitis.   That came back good too.  She then had an EKG which also turned out normal.  So, they had no answers as to what caused it, but they wanted to keep us to watch her overnight.


It has now been 3 nights later, and she is still there.  They did another EKG and an echo cardiogram which again turned out normal.  She was on 1/2 liter oxygen and then moved down to 1/4 and then 1/8 liters which is practically nothing.  She has now been off of the oxygen but has occassional desaturations.  They are watching her longer to see if she may need to come home with oxygen just when she is sleeping.  I really hope she doesn't need this, but I definitely want her to be getting enough oxygen when she sleeps.  So, we will see what the pulmonologist says tomorrow.  Before the babies were born, I didn't even know that all of these "ologists" existed.  They have seen neo-natologists, opthamologists, cardiologists, pulmonologists, otolaryngologists, etc., etc., etc.


So after a lumbar puncture, 2 chest x-rays, 1 abdominal x-ray, 2 EKGs, an echo cardiogram, blood analysis, urine analysis, and viral cultures, they still don't know what caused her to turn pale and desat.  It may have been congestion or a common cold.  That's a lot of tests for a common cold.  I am glad that they did the whole work up though, and we are lucky that all she really needed was a little oxygen.  When a full-term baby gets a little virus, they require a lot of sleep; when a micro-preemie gets a little virus, they require an extended hospital stay.  What fun!


We hope to know what the plan is tomorrow.  If she does need oxygen support at home, we have to wait to be discharged until a week day because home health care doesn't work on the weekends and they are the ones who set up the equipment.  And Monday is a holiday for the rest of the world, so we may not get to bring her back home until Tuesday.  So, we just may be spending yet another holiday in the hospital.


Some of you have asked about when you can meet the babies.  As you can see, we have to take extra precautions with our babies.  I wish I could show them off to the world.  They are absolutely adorable and just melt your heart.  Unfortunately, we have to be pretty isolated.  We take all kinds of precautions to protect them and yet this still happened.  They don't go anywhere except to their doctor's appointments.  I bought these super cute car seat covers.  I knew it was kind of silly since they really don't go anywhere, but I just thought they were so cute.  I guess Camdyn thought hers was cute too because she wanted to show it off to the EMTs on her ambulance ride and to the staff at the ER.  We can't wait until they are bigger and stronger and we are able to introduce them to our whole family and all of our friends.  Until then, I will keep posting pictures.  Sorry about no pics on this post.  I've been pretty busy to say the least!


God, we are thankful that Camdyn does not have any diseases or defects.  We pray for her to get stronger and to be able to breathe all on her own without the need for oxygen.  We pray that you keep Cade, Brenna, and the rest of us healthy.  Amen.