Hallelujah!

We got better news about Cade's diagnosis.  It is only left vocal cord paralysis and not bilateral vocal cord praralysis.  Funny thing to be excited about a diagnosis of left vocal cord paralysis but when you've been told it may be bilateral and require a tracheotomy for life, you celebrate that at least one side is working.  That's what it's like to have micro-preemies.  You celebrate the strangest things with the precursor, "well at least it's not . . ."  You say, "A grade II head bleed isn't that bad because at least it's not a grade III or IV."  You think, "Well if he can't hear, at least he can see."  So many times throughout this journey we have said the words "at least it's not".  We are thrilled that it is only left vocal cord paralysis. 

So what does that mean?  Of course, we have to "wait and see" just like we have had to do for months now.  He will do another swallow study in 4 weeks.  This time he will go to Dell Children's Hospital to do that, and they will watch to see where the liquid is going.  They will thicken it to different consistencies to hopefully find a consistency that he can swallow safely.  The problem is that his vocal cords do not close to protect his airway because only the right side is working.  This means that liquied can easily pass between the vocal cords and go into his lungs.  The ENT explained that often times the right vocal cord will work harder to compensate for the left one.  We are hoping this happens and that they can find a consistency that works for him.

As he grows, his voice can become louder.  I have noticed in the last few days that his cry is becoming more audible.  His voice will most likely be breathy and raspy because air will escape between the vocal cords when he speaks.  Fortunately, there are more treatments available for unilateral VCP than bilateral VCP.  They won't do any treatments to improve voice until he is much older to see what his body will do on its own first. 

I am just thrilled that he will not need a tracheotomy.  I feel like a raspy voice isn't a bad trade off considering all the potential problems we were lucky enough to avoid.  The left VCP was a result of the PDA heart surgery he had when he was two weeks old.  It is a common problem with this surgery; however, the surgery was necessary to save his life.  The nerve that moves the vocal cord wraps around the heart, and I suppose that when you are performing surgery on a 1 1/2 pound baby with a tiny heart, damage to this nerve is hard to avoid.  They told us about this risk when we signed off on the surgery, but there really was no choice but to have the surgery.  He would not have survived without it.  Camdyn also had the surgery, but her nerve was not damaged.

When I was driving Cade to the ENT today, the song "Hope Now" came on the radio.  I just felt God was sending me a message to keep faith and trust in Him.  I felt much better after hearing that knowing that He is going to take care of my sweet babies.  We just feel so blessed to have both of our babies home with us.  Wow, what a story they will have to tell!

Finally - an update!

8/26

I know all of you have been waiting for an update.  I had to wait until I had a chance to post pictures because my sister tells me that posts with no pictures are boring.  To say that we have been pretty busy around here is an understatement.  I know what it's like waiting for an update because I have been following a fellow NICU mom's blog, and I check it all the time for updates.  If you want to read about a truly incredible journey, check out her blog at www.thurstonmossholder.blogspot.com.  Here's a picture below of why I haven't had a chance to post.  Sometimes we are all hooked up.  I'm hooked up to the breast pump with a baby on each side of me in a boppy while they are hooked up to their feeding pumps.  It's quite a scene. 

Look at my sweet babies below.  Yes, Cade is that much bigger than Camdyn.  This is not just a strange angle.  He looks like a giant next to her.  At their last appointment, Cade weighed 9 lbs. 12 oz. and Camdyn weighed 7 lbs. 10 oz.  I hope Camdyn can get to at least 8 lbs by their 5 month birthday on Sept. 5.

 

Could they be any sweeter?

Here's a picture of them after they had their blood drawn.  Look how cute they look with their matching arm bands.  They only cried a little when they had their blood drawn.  Maybe they have a high tolerance for pain after all they have been through.  I think I was more scared and sad than they were.

I love this picture.  Camdyn is "playing" polly pockets with her big sister.  I think Camdyn is looking at Brenna like she thinks she is so cool.  How cute!

Camdyn and Cade fighting on their play mat.  Camdyn is saying, "Mommmm - He's hitting me!"

They love their swings.  They are happiest when they are swinging.

This is Uncle Jason's first time to meet the babies.  It's such a cute picture because they look so sweet and innocent against Jason's police uniform.  I think Cade is saying, "I didn't do it!"

Camdyn and Cade meet their Great Grannie Stahmer for the first time.

Here's a little perspective to show just how much our babies have grown.  It is amazing!

Cade - Week 1 (1 lb. 8 oz.)

Cade - 20 Weeks (9 lbs. 12 oz.)

Camdyn - Week 1 (1 lb. 2 oz.)

Camdyn - 20 Weeks (7 lbs. 10 oz.)

God, we are so thankful that our babies are home with us.  We are enjoying them so much.  We thank you for the blessings you have given us.  We thank you for how much they have grown and ask that you continue to bless them and help them grow at a good rate.  We pray for good results at Cade's follow up ENT appointment next Monday.  We ask you for another miracle - to heal Cade's vocal cords and return them to full mobility and function.  We know that you have already given us two beautiful miracles and that you can do anything.   In your name, Amen.

We're Home!

We are home at last!  It has definitely been the longest, hardest journey we have ever been on.  After being born 16 weeks too early weighing 1 lb. 2 oz. and 1 lb. 8 oz. and spending 133 days in the NICU, Camdyn and Cade are finally home.  The NICU became our second home, so it was a little sad to leave our NICU family, but we couldn't be any happier having our babies home! 

Our rooming-in and discharge day was wonderful.  Finally, something turned out the way I wanted it to be.  Jim and I went to celebrate with a "last supper" (so to speak) at Macaroni Grill before heading to the hospital for the night.  When we got to the hospital, Cade was finishing up his car seat study.  Then, our nurse wheeled their big crib out of the NICU and into the rooming-in room.  Jim and I got no sleep that night, but we didn't really care.  It took us 1 hour and 45 minutes to do their first feed with mixing formula and breast milk, measuring, setting up the feeding pump, feeding, and cleaning it all up.  We got a little better at the process as the night went on.  In the morning, they brought us breakfast and the doctor came to do a final assessment. 

Our family arrived around noon and met us in the room.  Brylee, Colin, and Aunt Brandi met the twins for the first time.  We went back into the NICU with the babies to get them in their car seats and say good-bye.  As we walked out of the NICU, our family was waiting in the hallway with cameras and video cameras.  We felt famous!  We walked out of the hospital with babies and balloons in tow just like all those lucky parents who I saw daily leaving with their baby or babies.  It was our turn, and we couldn't have been more proud.

We then loaded all of our babies into our car and headed home.  We have had so much fun with Camdyn and Cade being home.  We get to love on them whenever we want.  I no longer have to call up to the NICU to check on them.  I am able to breastfeed Camdyn whenever I want without having to make a plan to do so.  We get to give our babies baths every time.  This journey has taught us to appreciate every aspect of human life and parenthood.  You appreciate every, and I mean every, breath your baby takes.  You feel privileged to change diapers, feed, clothe, and bathe your baby.  You are overjoyed to rock, hold, and even touch your baby.  You see the beauty of a rising chest and hear the melody of breathing.  And you realize just how beautiful life is. 

Brenna has been enjoying the babies at home too.  On our way home from the hospital, she gave us a constant report of what the babies were doing in the back seat.  She was really cute when she said she was so proud of our babies.  Today when I told her we were taking the babies to their doctor's appointment (with their pediatrician) she asked me if they were going to have to stay there for a really long time.  How sweet and sad.  She wanted to make sure that we got to take them back home again.  She is such a proud big sister.

Jim has been the most awesome husband and father throughout this whole journey.  So many times when I felt my world falling down around me, he was there to hold me up.  People say that I have been so strong, but I have nothing on the strength of my husband.  He has been able to accept whatever bad news we have been given and remain hopeful when hope was bleak.  He has shown me how to be a more positive person and to count our blessings.  Now that we are home he has been so helpful.  It really takes both of us to care for the twins while being good parents to Brenna.  I really don't know how I would have done this without him.  I thought about how we should celebrate our 8th anniversary when March rolls around instead of waiting for the 10th anniversary that most couples celebrate.  I am not sure if we'll be able to go anywhere with three kids at home, but we will celebrate somehow.  After all, our 8th year of marriage has so far been the hardest, most trying year.  And, I have developed a new love and appreciation for my husband.  Life doesn't always work out in neat 5 year increments or even 40 week pregnancies for that matter, so I think people should celebrate what life gives them.

Here's a pictorial journey of our way out of the NICU for all my blog followers.  I know you all have been waiting anxiously for this post just as we have. 

Dr. Breed holding Camdyn and Cade.  I wish we could have taken pictures with all of our doctors, but they weren't there when we left.  Thank you to all the doctors, nurses, respiratory therapists, physical therapists, and speech therapists who have helped our babies make it to this point and to the desk staff who greeted us with a smile and made us feel welcome.  We will be eternally grateful.

Cade doing his car seat study.  Camdyn had already done hers before we got there.

Daddy telling the babies that they were about to room-in with us.  Notice that the monitors are off!

Our nurse, Thad, wheeling the babies out of the NICU and into the rooming-in room.

Cade and Camdyn wearing their 'going-home' outfits.  How cute!

proud big sister Brenna with her babies.  Camdyn's shirt says "little sister", Brenna's says "big sister", and Cade's says "little brother".  I thought that was so appropriate because we will finally have our family together.

Mommy getting Camdyn in her car seat.

Daddy getting Cade in his car seat and Brenna helping Mommy with Camdyn.

Brenna with the twins just before leaving the NICU.

Camdyn and Cade looking very sweet in their car seats.

We're on our way out of the NICU!  This is our first family picture with all five of us.

leaving the hospital

Camdyn and Cade in the car ready to go home!

Brenna and the babies in the back seat.  It's pretty tight, but they do fit.

We're finally home!  All my babies on my couch AT HOME!!!

It's Time !!!!!

I can hardly believe that this day has finally arrived.  We have been going to the hospital for over 4 months now.   We have seen probably 100 babies come into and leave the NICU during our stay.  We have seen all the parents carrying in their car seats in preparation to take their baby or babies home.  So, it's hard to believe that we are actually there.  We brought their car seats in last night, watched our discharge videos, and got some training on the feeding tubes.  We have the official training this morning.  Then we get to room-in tonight.  We have been passing the room-in rooms every day going to the NICU.  Again, I can't believe we are finally getting to room-in.  I am so excited that I woke up early for no reason.  I should have been getting my last bit of sleep since we will be up every 3 hours to set up their feeds.  Soon I'll be posting the "Coming Home" post that everyone has been waiting for.

   By the way, Camdyn's MRI was great!  We feel so blessed to have two good MRI scans for Cade and Camdyn.

Today Camdyn weighs 7 lbs and Cade weighs 9 lbs!

Daddy getting the pack-n-play ready at the house.  We have no nursery set up in this house.  We just put the pack-n-play in our room and the changing table, swings, and bouncy seats in the living room.  They will get a nursery in the new house, which should be complete soon.  Most new parents, including myself with Brenna, have their nurseries all set up before their baby arrives.  We set up all their stuff in two days.



Daddy bringing in the car seats and bases for their car seat study.



Daddy going in to the NICU with empty car seats.  I can't wait to take the picture of us going out of the NICU with full car seats!

 

inside the NICU  

A Full House Divided . . .

It occurred to me the other night as Jimmy and I were in bed with Brenna laying between us that we were like a full house - only divided.  We have a '3-of-a-kind' here and a 'pair' there.  I am so ready to bring our pair home to complete our full house.  We will go from the '3 of us' to the '5 of us'.  That has a nice ring to it, don't you think?


The plan is to get training tonight and tomorrow morning on how to insert the feeding tube and do the gavage feeds.  Then we will room-in tomorrow night, and if all goes well, we'll bring our twins home on Saturday.  I can't believe it!  This day has been a long time coming.  Every one said it would get here, but every day for the last 19 weeks has felt incredibly long.


With Brenna, I had her nursery all set up about 2 months prior to her arrival.  I had completely nested at the house and the studio in preparation for her arrival.  With Camdyn and Cade, I have had about 2 days to nest.  We didn't want to set everything up earlier.  It would have been difficult to look at swings, bouncy seats, changing tables, etc. before they were ready to come home.  It would have just served as a constant reminder that our babies did not live with us.  So now, it is like Christmas around here.  We are busting open boxes and assembling baby gear.  We are running to the storage unit to get out car seats, bouncy seats, and swings.  We are cleaning our house like crazy people.  We are running out to buy a stock pile of antibacterial soaps.  We are scheduling doctor's appointments to get our vaccines (and making all of our family do so as well.)  And, we are doing all of this with enormous smiles on our faces and joy in our hearts!

Random Thoughts

I talked to the doctor today, and it looks like we just might get to take Camdyn and Cade home together.  They will both come home with feeding tubes.  Camdyn will continue to learn to take her bottles at home, and Cade will continue with tube feeds until he sees the ENT at Dell Children's hospital.  We hope to get good news at that point.  Please keep praying for us on that one.  Cade gets circumcised tomorrow (poor baby), but it means he is coming home soon!  Camdyn will get her MRI either tomorrow or on Wednesday.  Pray for us that her MRI comes back good too.  We require a lot of prayer, so it's a good thing that people are praying for us all over the world!  Jimmy and I will have to learn how to insert the feeding tube and use the equipment.  It is kind of a scary thought, but I'm sure that once we learn and get used to it, it will be no problem. 

They are planning on having us room-in sometime this weekend!  I really can't believe it.  We pass those rooms every day on our way into the NICU, and it feels like we are never going to be "those people" - the lucky ones who get to take their baby, or babies in our case, home.  Soon, we will be "those people".  Of course, this is not how I envisioned it.  I was hoping to take them home without tubes or monitors, but none of this has been how I envisioned it.  You don't ever think you are going to go into unexpected labor at 24 weeks after a completely healthy pregnancy with no signs of early labor when you get pregnant either, but life sometimes deals you an unfair blow, and I suppose, you just have to go with it.  We are fortunate enough to be taking home TWO 24 week twins which is itself a MIRACLE!

Brenna will be ready for her "girl baby" and "boy baby" to come home.  You should see how she washes her hands now.  She tells every one, "this is how Mommy say to do it," as she scrubs all between her fingers.  The other day after taking her to the bathroom, I was helping her wash her hands.  She is so cute.  She scrubs all between her fingers, on top of her hands, and all the way up to her elbows just like we do at the NICU.  How cute! (and sanitary)  That will come in very handy since Mommy is going to become a crazy germ freak.

Talk about anxiety - I have had some crazy dreams lately.  My first crazy dream was that I was driving in the middle of the afternoon and all of a sudden it became pitch black outside.  I turned on my headlights, but there still wasn't enough light.  Then I turned on my brights and could barely see in front of me.  The wind started blowing uncontrollably, and I thought a huge storm must be coming.  My second crazy dream is pretty funny.  I dreamt that Jimmy was finished building the house and he told me we were going to have some roommates.  Our new roommates were Dr. McCormick and Dr. Breed.  I'm not sure if that means I feel like they are a part of my personal life or if I would like for them to move in.  I have to say that sure would make things easier!

A note on stress - I have been so stressed out lately by the complexity of our situation that I have actually developed TMJ (your jaws hurt from clenching or grinding).  I went to the dentist to make sure I didn't have a cavity.  They took an X-ray and determined my teeth look perfect; it was TMJ.  The dentist asked me if I have been under a lot of stress.  I simply answered, "Yes."  He then told me that if I just "took a break" or "removed my stressor" it would probably go away.  Nice idea, huh?  I thought it was pretty funny.  He had no idea that my "stressors" are my twins who have been in the NICU for over 4 months and that they would probably continue to stress me out for years to come.  That evening as I was taking a shower, I noticed that my body wash was titled "Stress Relief".  For the second time that day, I had to laugh to myself.  Wouldn't that be nice if you could just bottle up stress relief in a pretty little bottle with a gold label? 

18 weeks old (2 weeks adjusted)

The twins are now 18 weeks old or 2 weeks adjusted.  Cade now weighs 8 lb. 8 oz. and Camdyn now weighs 6 lbs. 6 oz.  Camdyn is continuing to work on taking her bottles and breastfeeding.  Cade's update is much longer.  He did another swallow study and did not do so well.  It showed that some milk is going into his airway, so they have stopped all oral feeds for him.  All of his feeds will be given through the tube.  Our doctor consulted with some of her colleagues and is recommending another ENT when we are discharged.  This other ENT has more experience with bilateral vocal cord paralysis.  From what our doctor told her, she thinks there is a chance that it may just be unilateral vocal cord paralysis since he can breathe fine on his own and has been off of oxygen for a while now.  I really don't know what to think.  Without her seeing him, I am not going to put too much into that thought yet.  They plan on sending Cade home with the feeding tube, and since that is all that is keeping him in the NICU, we may get to bring him home soon!  I am going to talk to the doctors about sending Camdyn home with her feeding tube as well.  They would like for her to be able to take all of her bottles, but I feel like we can work on that at home.  Whatever she can't finish, we can give her through her feeding tube.  If I'm going to have to learn all about how to do gavage feedings for one, I may as well do it for the other one too.  Hopefully, we'll know more about Cade after we meet with this other ENT. 

I don't really even know what, how, or if I should hope at this point.  You hear things like "false hope", "don't get your hopes up" and then also, "hope for the best", "hold on to hope".  What the heck?!  What am I supposed to do?  I don't want to give up hope that everything is going to turn out great, but I don't want to build up some false sense of hope when I should be working on acceptance.  This is so confusing, and often times, it is just too much.  All I can focus on right now is that at least my babies may get to come home soon.  It's definitely not the ideal way to have them come home, but nothing is ideal in our crazy situation.  At least when I want to check on them at home, I won't have to wait 10 minutes on hold to get to the right nurse who has my babies for the night.  

Here are a lot of really cute pictures of my precious kiddos.  Enjoy!

my blue-eyed cutie during tummy time 

my sweet angel smiling and sleeping during tummy time - how sweet!

Cade - all cheeks.  I just want to squeeze them!

Camdyn taking a little rest.  "Mom I'm only 6 lbs.  What do you expect me to do on my tummy?"

my precious babies

my very sweet "big girl" with her "girl baby"

my little chunky monkey - We never would have imagined him to be so chunky coming from the 1 lb. 8 oz. where he started.

two peas in a pod (or swing)

The babies had a really nice nurse the other night who took all their tubes out so we could get some cute pictures.  I love all these naked pictures.  In the ones below, Cade is either kissing Camdyn, nursing on her nose, or trying to eat her!  I can't tell.

look how much bigger Cade is than Camdyn (Notice the cute fat rolls!  Yay!)

 "I love you Sis!"

Camdyn

Cade

my sweet babies

 April hosted a shower for me in La Grange this past weekend.  It was very nice.  She got this adorable cake and cookie bouquet for the shower.  Isn't it so cute?  Thank you everyone for all the wonderful presents.  I can't wait to dress Camdyn and Cade in all the cute outfits.