Tuesday, August 30, 2011

I Love Blogs!

I love blogging.  I saw a banner on another blog that said, "Blogging is cheaper than a therapist."  Isn't that the truth?  I started this blog to keep everyone updated with the progress of the babies.  While it still serves its initial purpose, it has also become my therapy.  My sister says I should seek a real therapist.  I'm sure that wouldn't hurt, but honestly, when do I have time for that?  I know that I am still traumatized by their birth, but I don't see how a therapist is going to make that any better.  Most of the world has never even seen what a baby looks like that only weighs one pound and whose skin is so transparent that you can see through it.  Anyone who can go through seeing their baby like that and isn't traumatized by it needs a therapist.  I'll stick to blogging.  

I can thank my blog for helping me find a way to get Medicaid for Cade.  An old friend saw my link to the blog on Facebook.  She read one of my posts where I was complaining about how insurance wouldn't cover enough therapies, etc.  She is a nurse and told me how to go about applying for the Medically Dependent Children's Program since Cade had a g-tube.  Thank you, Renita!  Our NICU social worker should have told us about this program when we left the hospital, but she didn't, and it ended up costing us about $20,000.  (That's a whole other story.) 

In this big blogging world, I've met so many amazing mothers of micro-preemies.  I follow several blogs.  I love reading blogs more than I like to post on my own.  Reading blogs is like reading a live, unedited memoir.  It's real, it's impactful, and it's comforting.  When I read posts from other micro-preemie moms, I feel like I know them well - like we are old friends.  Sometimes as I read the words, I feel like I could be writing the exact same thing.  Here are a few examples from my blogging friends:

This is written by Sarah, mother of Samuel (24 weeker), on her blog www.samuelpope.blogspot.com  "Not too many months ago, I found myself surrounded by pregnant women.  Surrounded.  Suffocated.  Smothered.  Overwhelmed by.  I didn't know how to cope with the jealousy I was feeling.  I prayed about it a lot.  I tried to force myself to 'talk baby' with my pregnant friends.  When that didn't work, I resorted to putting distance between us so that I could avoid feeling jealous altogether." She goes on to say that she had overcome this jealousy with the birth of her beautiful niece.

I hate to admit it, but I have avoided baby showers, and I cry when I see pictures of joyous full-term births surrounded by friends and family holding big, healthy newborns.  It actually looks strange to me that all those people would be touching a newborn without first "scrubbing in" at the scrub station.  Of course, I am happy for them; I wish all babies could be born big and healthy; however, it still hits a raw emotion for me that I hope will fade in time.  I almost feel selfish saying that because I had that joyous birth experience with my first daughter; is it being greedy though to want the birth of all your children to be joyous?

When the babies were in the NICU, I often thought about how strange it felt that the world was going on as it always does even though I was walking through life in a permanent zombie-like state.  Katrina, in her blog www.brycemoline.com writes, "I'd stand there in line and smile vacantly at strangers wondering maddeningly how all these people could go about their lives so nonchalantly, how could they go for coffee, laugh at dumb jokes and worry about their petty problems.  Didn't they know I was losing my baby boy!? Didn't they know that as we stood there he was fighting for his life!?"

There are countless other posts that I have related to in many ways.  We have a "blogging circle", so to speak.  They follow all the trials, appointments, therapies, complications, and eventually triumphs of Camdyn and Cade just as I follow their kids' accomplishments.  I feel like I know Samuel, Charlie, Jack, Bryce, Eliza, Harper, Sofia, Olivia, and so many other preemies.  I cheer when they accomplish new skills.  I know how hard they had to work and how much therapy they had to do to meet those milestones.

Alyssa says it so well of her 24 week twins on her blog, www.miikkifamily.blogspot.com., "Love, happiness, pride, joy, and a huge dose of *relief* as every new skill is learned. /When your babies start crawling around and standing up after you've spent days, weeks, and months wondering if they are going to spend their lives in a wheelchair....words cannot explain the feeling. /Some people might wonder why I keep dwelling on the fact that the girls were preemies. Well, the fact is that they are still preemies. It's not a condition that goes away. . . . I will dwell in the fact that my babies are miracles, because they are and always will be. Every single thing they do is amazing." 

I have created a support network of local preemie moms through Hand to Hold.  We get together once a month for coffee or dinner.  I hope it grows to reach out to more moms.  Being a preemie mom can be isolating at times.  Another twin mom in our group said it was nice to have a place to share stories/advice with other preemie moms.  She said she had joined a multiples group, and their problems were just not her problems.  I knew instantly what she was talking about.  It's hard to listen to other moms complain about their babies' sleep schedule when your cribs are empty because your babies live at the hospital or listen to them worry about their babies not eating vegetables when yours is tube fed, etc.  I've met some of the most amazing women through this group.

Back to blogging - I've searched high and low to find other blogs of surviving 24 week twins.  I know that several people do not blog and there are more 24 week twins out there, but as much as I have searched and searched to find it, I have only found two other blogs of surviving 24 week twins, and one lives in Finland!  Interestingly enough our stories are very similar (see 24 week twins link above).  Who knew that a girl from Texas had so much in common with a mom in Finland?






Wednesday, August 24, 2011

Baptism - Part I

Jim and I finally set a date for the babies' baptisms.  They will be baptized next month in the church in which my husband grew up.  Brenna was baptized when she was 3 months old; the babies weren't even out of the hospital at 3 months old.  We were asked if we would like to have the babies baptized in the NICU.  I immediately said no to that offer.  To me, it felt like a death sentence.  If I gave permission for a pastor to baptize them, it meant that I thought they were going to die.  I knew the grim statistics; they had a 50-60% chance of death.  Cade's chances were probably even higher after his difficult first night.  Even though I understood this, I could not let myself think they would die, and I definitely wasn't going to have a ceremony of baptism to prepare them for heaven.  I needed them to stay here on Earth with me for a long time.  I already loved them - all 2 combined pounds of them!  I needed them to fight and to live.

I had a lot of talks with God during their NICU stay.  Most went like this - "Why?  Why me?  Why my babies?"  Later they became, "Why did my babies live while others did not?"  Tragedy can either turn a person to or away from God.  For me, it brought me closer to Him than I had ever been before.  I knew there wasn't much I could do except sing/talk to the babies and pray!  I did a lot of praying.  I prayed every waking moment, and I think I prayed in my sleep too!

One of the first times that I visited the babies I decided I would "baptize" them.  I know that I am not ordained, but it was what felt right to me.  I traced the sign of the cross on the top of their isolettes just above their heads.  We weren't allowed to touch them due to their extremely underdeveloped nervous systems.  Tracing the sign of the cross on their heads would have hurt them.  I did not do it because I thought they might die; I wanted them to know that I loved them and that God loved them.  There were no baptismal waters, just lots of mama's tears. 

I am excited to have the babies baptized in the church and for everyone to share in their baptism.  I'm really excited to dress them up in cute little baptism outfits!  I'll definitely be posting pictures of them at the end of next month in Baptism- Part II.

This is a picture of Camdyn (she is in there under all that equipment) when I first saw her.  The nurse took this picture for us.  I don't know if the rest of you can see it, but I can see the worry not only in Jim's face but just in the way his hand is resting on the isolette.  Cade's isolette is right behind us.   Having multiples was an added difficulty of being in the NICU.  I remember checking the time often.  "I've been sitting here with Cade for 15 minutes; now I'm going to go sit with Camdyn for 15 minutes."  I didn't want them to think I was being unfair!


I don't know if I'll ever get over seeing them like this on oscillating ventilators for over a month.  Now, I look at them walking/taking steps, and I can't help being in complete awe knowing this is where they came from!

Sunday, August 21, 2011

I have a toddler!

video

Camdyn has this walking thing down!  I figured it wouldn't take her long to really get going once she started.  She is still a little wobbly, but she is quickly beginning to prefer walking to crawling.  I think that means I have a toddler!

I still haven't had a chance to get Cade taking his few steps.  I need someone to video while I have him walk to me.  He is feeling much more confident standing without holding on to anything.  I don't think it will be too long for him to really start walking now that he sees Camdyn doing it all the time.  Soon, I will have two toddlers!  I best get my running shoes on.

I'm a bit surprised that they are both walking so early.  I didn't think it would happen for a few more months.  They are 16 months but only 12 months adjusted.  Due to their extremely early arrival, we were led to believe they might not walk until 18-24 months.  At the beginning, walking at any age was a question depending on the severity of their brain bleeds.  Fortunately, they both only had grade II bleeds.  We are so blessed that it has not greatly affected their motor skills.  It has been so much fun lately watching them meet new milestones and watching their personalities develop. 

I hate to say it, but I'm finally getting to enjoy them without constantly worrying about everything (appointments, insurance, oral aversions, feeding struggles, etc.).  I feel really normal now, or as "normal" as anyone else with a pre-schooler and one year old twins!

Austin Children's Museum

My mom and I took the kids to the Austin Children's Museum.  They all had a great time and stayed very busy.  I'm not sure if Nanny and I or the kids were more tired when we left.  We chased them around constantly.  I dressed them all in bright orange 1.  so they would look cute and matching but more importantly, 2. so we could easily spot them!  

My pictures were all taken with my phone.  I dropped my camera in the water at the splash pad trying to get a picture of the kids and now it is ruined.  Hope you enjoy the not-so-great pics anyway.







Thursday, August 18, 2011

Laundry Day!

Doing laundry with the twins around and Brenna who tries to help is nearly impossible!  I brought all of our clean laundry into the living room to fold and hang, but here's what happened instead.

Camdyn throws all of the hangers on the floor.  I put them back on the couch, in what I think is out of her reach, and then I turn around to see what Cade is doing.  He is unfolding the folded clothes while Camdyn has managed to reach the hangers and throw them back on the floor again.



Camdyn playing with the wrinkle releaser and throwing more hangers on the floor.


Cade trying to figure out how he can eat the wrinkle releaser.  Notice his hair!  I went to get more clothes from the laundry room.  When I come back into the living room, I notice that both Camdyn and Cade's hair is wet. 

Me:  Brenna, why is the babies' hair wet?
Brenna: I was making them look pretty.
Me: With what?
Brenna:  That spray.  Don't they look pretty?

She had sprayed wrinkle releaser in their hair!  The babies had nice, starchy hair for the rest of the day!

That's not the end of our laundry fiasco scene.  I go to put away some of the laundry before Camdyn could pull it all off the couch again.  When I don't see the babies in the living room, I look around for them, and there's Cade holding the front door open while Camdyn is sitting on the front door step outside!!!  He had managed to stand on his tiptoes, pull the lever door handle, and open the door.  Camdyn quickly made her escape.  I was so proud of him for figuring that out and physically doing it that I couldn't be mad.  I was rather impressed with his skill.  I am going to have to really start watching those two.  They are going to constantly be plotting some way to get into trouble.

Needless to say, the laundry is still not done!

Sunday, August 14, 2011

Happy Homecoming Anniversary, Cade and Camdyn!

 8/14/2011

Today marked the one year anniversary of our twins' "homecoming" after spending a long, eventful 133 days in the NICU.  A year ago, it was a day filled with excitement, anticipation, and of course, a lot of worry.  Every parent worries when taking their baby home from the hospital, but this was worry on an entirely different level.  We were taught how to feed them through tubes in their nose and given a packet of discharge information.  (Order high calorie formula from company X, order feeding supplies from company Y, pick up prescriptions from pharmacy Z, set up pediatrician appointments, ECI evaluations, a swallow study, a laryngoscopy, eye follow-up exams, cardiologist follow-up exams, private therapy visits, and on and on.)  Even with all of these orders, we couldn't wait to take them home to live with us.  We had been waiting 16 weeks to get the news that they were ready to go home! 

That day could not have been more perfect.  If I could (without being considered completely crazy) celebrate that day every year instead of their birthday, I would.  Their birthday, April 5, was a completely traumatic day.  There was no joy - only shock and disbelief followed by an emergency c-section followed by the delivery of babies who did not cry followed by babies being whisked away to the NICU followed by watching the clock minute by minute, hour by hour, willing it to move faster to get through the first 24 hours, then the first 48 hours, then the first 72 hours. 

 No, April 5 was not a day of joyous celebration, but this day, August 14, was overflowing with joy and celebration.  Our family brought us balloons and cake, and they followed us from the door of the NICU through the hallways and out into the parking lot videoing and taking pictures the whole way just like the paparazzi.  We felt famous, loved, and supported.  It had been a long journey for all of us, and we all celebrated that day.  Although we still had a long way to go, we celebrated how blessed we were and how overjoyed we were to be able to take both of our twins home with us.

We decided that we should celebrate this homecoming anniversary with a visit to the NICU.  We wanted to show all of the nurses and doctors how far Cade and Camdyn have come in the past year.
                                  
Camdyn on discharge day - 7 lbs 2 oz - 4 1/2 months old, 2 weeks old adjusted


Camdyn today - 16 lbs 12 oz - 16 1/2 months old, 12 1/2 months adjusted


Cade on discharge day - 9 lbs. 2 oz - 4 1/2 months old, 2 weeks old adjusted


Cade today - 20 lbs. 10 oz - 16 1/2 months old, 12 1/2 months adjusted

  
 
Dr. Breed was the doctor who was on call when the babies were born.  He was the one to oversee their transfer from the delivery room to the NICU, and he took care of them their first days of life.  Here he is holding them on their discharge day.


and today at our visit to the NICU


Brenna with the twins just before we brought them home


Brenna with the twins today.  They've all grown a lot.  The babies were not interested in smiling for me even though I told them I needed this picture for a comparison photo.  They didn't seem to care.


We took this picture when we first arrived home one year ago.


. . . and today.  Look at my silly monkeys!


Jim and I with the twins and some of their nurses.


Since Jimmy doesn't write a blog, I'll have to write this for him.  Jim has an admiration (which doesn't seem to be the right word) for Dr. Breed that goes beyond words.  What word do you use to say that you are eternally grateful for someone saving your child's life?  Dr. Breed came into our hospital room the first night and told us Cade was not doing well.  He explained to us that Cade was on the highest ventilator settings at 100% oxygen which meant the highest life support possible.  Dr. Breed suggested starting him on nitric oxide, but we would have to agree to it because it was not FDA approved.  We, of course, agreed to the treatment.  I was still on major pain medicine from the surgery, but Jim went back to the NICU with Dr. Breed.  Jim says he and Dr. Breed sat over Cade's isolette the entire night.  I imagine Dr. Breed was thinking, "What more can I do to save this baby?" and I imagine Jim was thinking, "Only God and the wisdom He gives this man right here can save my baby."  Jim says they sat in silence staring at Cade into the next day.  This picture just looks like two guys and a little boy, but it's so much more than that.


Here's what Cade looked like as they sat over him in silence that night.


Here's our big exit from the hospital with balloons and babies in tow one year ago.


We thought it would be fun to have the babies walk across the threshold of the hospital doors today.  God is so good!
 
                         
I hope you all have followed this long post to this point because here's the biggest news - Cade decided to take his very first steps today in the hallway to the NICU during his visit.  One of the nurses was playing with him.  He was really interested in her lanyard, so she held it out in front of him, and he took three steps to reach it all by himself!  I started jumping up and down with excitement and so did three of his former nurses.  I think he wanted to show off for the nurses - my little ladies' man!  It's pretty cool that he reached this milestone in the place he reached so many first milestones (albeit not the typical ones for most babies) like learning to maintain a steady heart rate, learning to regulate your body temperature, and let's not forget the biggie, learning to breathe!  Talk about topping off a fantastic day.  I was so proud of my little guy!                           

Thursday, August 11, 2011

Fun Cleaning!

It seems like an oxymoron, doesn't it? How can "fun" and "cleaning" go in the same statement, and end with an exclamation point? Well, the cleaning I did last night turned out to be FUN! I started by going through all the toys in our house that seem to be multiplying daily. I threw away several and gathered more for a consignment sale.

I then decided to tackle the changing table. It was packed with baby blankets, bibs, diapers, and supplies. I came across all of these medical supplies (in clockwise order) - a hospital mask, a pulse oximeter, an ng-tube, a nasal cannula, a g-tube extension set, a tool to adjust the oxygen tank, and a sign the hospital gave us to remind people to wash their hands before touching the babies. I held each of these items in my hands for a while thinking back at how far they have. As I held the pulse ox, I thought, "I hated this thing; it never stayed on right and then the alarm would go beeping scaring us nearly to death in the middle of the night." Holding the ng tube I remembered how it took two of us to shove that thing down their noses with them screaming and squirming and looking at us with pitiful "Help Me" eyes and hoping we, somehow, after all that, managed to get it into their stomach and not back up through their mouth or worse, in their lungs! Thank God we are done with that! Looking at the g-tube set reminds me how thankful I am that Cade is now eating!




I was more than thrilled about throwing these things out with a thankful heart that we have passed all that. I threw it in the trash bag and took it to the garage. Later, I dug it back out - not because I wanted to keep it, but I thought the babies might like to see it when they are older. When I explain to them all they went through, they might be curious about what these things looked like. So, I guess it will be put in the box in the attic with all their tiny preemie clothes and other NICU memorabilia.


Here's the best part. Our basket of supplies now looks like anyone else's ordinary baby stuff with lotions and diaper creams. Isn't that beautiful?























Pool Party

We spent last weekend at Jim's aunt's house in La Grange.  His cousin who lives in Dallas was down for the weekend, so we all got together.  We had such a great time swimming and visiting for the evening. 


The kids all loved swimming in Aunt Sandy's gorgeous pool.


Greg and Jim were on baby duty trying to keep the twins occupied.


Jim's cousin Nathan is a talented musician.  We had live music at the family get-together.  Brenna enjoyed playing Legos while Nathan played his guitar.  We really enjoyed our visit.


Monday, August 1, 2011

Cade's follow-up ENT

Cade had a follow-up ENT appointment this past week.  We were told by the pediatrician that we would need to see the ENT and have a swallow study done before they would remove the g-tube.  Cade's voice seems to be getting louder/stronger to me in a lot of ways.  He is very quiet when he laughs or cries, but when he makes sounds, they sound pretty good.  Because of this, I thought his right vocal cord was compensating more and making more contact with his paralyzed left vocal cord.  Unfortunately, this is not the case.  After being scoped (which is completely uncomfortable and horrible for Cade), the ENT told me that there are no changes.  His right vocal cord does not come all the way over to meet the paralyzed left one which leaves a gap.  This means that he is still at risk for aspiration (food in the lungs) which can lead to aspiration pneumonia.  They don't know if the pneumonia he had in May was due to aspiration or a virus.  I don't really believe it was aspiration because he has been eating completely by mouth since March 23 and has only had pneumonia once.  We will go for a swallow study soon to see how safely food and liquid are passing.  It doesn't seem that we will be removing the g-tube any time soon.  The doctors see it as a precautionary measure.  We'll know more after the swallow study.

I have included a link here for those who are interested.  It explains PDA ligation (the heart surgery both Cade and Camdyn had) and vocal cord paralysis.  A video link shows someone with left vocal cord paralysis, how Cade's vocal cords function.  It also shows how they can inject the left vocal cord to make it bigger so the functioning right vocal cord can get better closure.  They will only do this when Cade is bigger if he needs it for voice and/or for risk of aspiration.  Much later, they can do a surgery to move the left vocal cord over permanently.  They wait to see if anything will change on its own first.  Warning - the video is gross!  I don't think it's so bad, but the former me, the one who was squeamish of anything medical, the one who had not yet had to shove ng tubes down her babies' noses or change out g-tubes, would have definitely thought so.  I hope you all do click on it long enough to find the humor in the music they chose to accompany this procedure.  The Charlie Brown theme song does not seem an appropriate choice of music to play while showing a medical procedure.  Who makes these films anyway?

http://www.preemieprimer.com/preemies-pda-ligation-and-vocal-cord-paralysis/



After leaving the ENT, I called Jim at work to tell him the results.  As I was talking to him, I began to cry.  I  hadn't realized how much I believed that there was improvement, so it was disheartening to hear there was no change.  Brenna was, of course, concerned about Mommy.  Four year olds can ask a lot of "Why's".

Brenna:  Mommy, why were you crying?
Me: Because Mommy is a little bit sad.
B:  Why are you a little bit sad?
M: Because Cade's vocal cords don't work quite right.
B: Why don't they work right?
M: Because he had to get a heart surgery when he was a baby and they messed it up a little.
B: Why did they mess it up a little?
M:  Because he was a very, very tiny baby.
B: Why was he a very, very tiny baby?
M: Because Cade and Camdyn came out of Mommy's tummy really, really early.
B: Why did they come out really, really early?
M:  Well, honey, I just don't know.

Sometimes, I would like to be a 4 year old asking a string of Why's.  I wish I had the answer.  I wish I knew.  I thought I was doing such a great job explaining things to her in a way she could understand, but some things defy understanding, like unexplained pre-term labor.  While I would like to know, I also often ask myself, "Why are we so lucky while others are not?"  Even though, I do get sad at times, I always remember to count my blessings.

When we got to our car after leaving the appointment, I reached down to pull Cade out of the stroller to put him into his car seat.  He looked up at me with those angelic blue eyes, that huge "I love you Mommy" grin crept across his face, and he clearly said, "Mama" as if to tell me everything was going to be okay.  That boy knows how to melt his Mommy's heart in a second!

I ask that you all continue to pray with us for Cade.  God, we pray for healing in Cade's vocal cords.  We pray that he has an ample voice.  We pray that he is able to drink and eat safely, and we pray that you continue to keep all of us healthy.  Amen.

Sweetness!

                     Camdyn and Cade love a bubble bath.


a happy boy in the tub


This was so sweet I had to include two pictures from different angles. 





 
Sleeping Beauty!



You only turn 1, twice?

This past week was the baby's due date, when they should have been born a year ago.  I still think it's so strange that they are nearly 16 months old and should only be 12 months old.  Due in late summer, born in early spring - it just doesn't sound right. 


Brenna and I made some cupcakes for fun and let the babies devour them. 




Brenna had lots of fun with the "lickers".




I still find it quite enjoyable to watch my babies eat.  It's such a joy to watch them WANT to eat.  It took us forever to get to this point.  They both loved their cupcakes!









Camdyn decided she needed to be a big girl since she is now an adjusted age of a year old.  This past weekend she took her first steps!  I was excited and surprised to see her walking for the first time.  I honestly did not expect her to start walking for a couple more months.  I can't even believe she can walk on those tiny feet of hers.  It is so precious!  This is the only video I have so far.  By the time I got my camera, she only wanted to take two steps, but before that she took about 5!


video

Summer Fun!

We took Brenna, Camdyn, and Cade to this pool last weekend.  They all had a good time.



Cade loves putting his face in the water.  Maybe he's going to be a little swimmer.


The only way to get the twins to sit still long enough to take a picture is to feed them animal cookies.


We went to a bounce house with some twin friends of ours and my niece and nephew.  The big ones loved it, but all the little ones were not too thrilled with it.


I took the twins to a splash pad with my friend Andrea and her triplets!  Brenna was missing because she was at vacation bible school.  Getting five one year olds to sit still for a picture is impossible!


The triplets and twins playing in the water.  Cade was fascinated with Camdyn's hat.


Our nephews came to visit this past weekend.  We had a great time with them.  We went to the Round Rock Express baseball game on Friday night and then the lake on Saturday while Nanny kept the twins.  After we got back from the lake, we picked up Camdyn and Cade to go out to eat.  It was nice to have some big kid help with the babies.  I told them each to grab a baby, and I didn't even have to get out the double stroller!