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!                           

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.



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!

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!