Wednesday, October 3, 2012

It's been to long

I thought I would write a quick post and post some cute pictures of the boys. Funny my last post on here was about RSV season and we have just entered RSV season again.  So I thought I would post more now that we are in lock down mood and can't enjoy the outdoors for the next 6 months.

The boys are doing pretty good! They just got over their first cold of the season and hopefully the last. Easton had a ear infection and high fever and was misrable! Carter had the sniffles and a  hard time breathing which made it almost impossible to drink his bottle. It broke our hearts to see our babies sick!

 Carter has learned to crawl everywhere. He likes to steal all his brothers toys and pull his hair. I am trying to get him to understand the word NO but its been hard! :)
He is eating stage 3 baby food and sometimes wants to munch on what we are eating. Both boys receive therapy everyday of the week but Friday so we are busy around here.

Easton is such a trooper. He only complains a little when his brusier of a brother is beating up on him! He has learned to roll all over the place this month. Easton is also enjoying his tummy time more with less frequent vomits which is so nice! He had an MRI done a couple weeks ago and it showed his ventricles had enlarged. We are getting anohter MRI done in a couple weeks and praying he will not need a shunt revision done. I don't know if I can handle another surgery. Easton is also eating stage 2 baby food once a day and we are trying to teach him how to suck from a straw. Easton is the happiest little guy and such a joy!

Here are some cute pictures

Carter showing us all his teeth and the food in his mouth.

Easton kicking back

Easton loves his daddy

Carter's first donut. There will be many more because his mom loves donuts

So hard to get a good family picture!

Happy to be at Apple Hill

Boys where done taking pictures



Carter

Easton

Tuesday, January 31, 2012

RSV season and lock down

January 24, 2012
Weights and Heights at the boys 6 month check up 2 month adjusted
Carter 13 lbs 7 oz  24 1/4 inches long
Easton 12 lbs 4 oz 23 1/4 inches long- feeding through a ng tube because of his bad reflux and not wanting to eat. :(

What is RSV??

Respiratory syncytial virus (RSV).

Respiratory syncytial virus (RSV) is a very common virus that leads to mild, cold-like symptoms in adults and older healthy children. It can be more serious in young babies, especially to those in certain high-risk groups.

Causes, incidence, and risk factors:

RSV is the most common germ that causes lung and airway infections in infants and young children. Most infants have had this infection by age 2. Outbreaks of RSV infections most often begin in the fall and run into the spring.
The infection can occur in people of all ages. The virus spreads through tiny droplets that go into the air when a sick person blows their nose, coughs, or sneezes.
You can catch RSV if:
  • A person with RSV sneezes, coughs, or blows their nose near you
  • You touch, kiss, or shake hands with someone who is infected by the virus
  • You touch your nose, eyes, or mouth after you have touched something contamined by the virus, such as a toy or doorknob.

When you have a micro preemie with an extremely compromised immune system, you can't take any chances. In fact, our motto is "better safe than sorry". With both of the boys having chronic lung disease we are taking this very serious and have been on home isolation.
Isolation has to be one of the hardest things, emotionally, to go through when bringing a micro preemie home from the hospital. Not only are you handed your fragile baby, hooked up to oxygen and monitors, but they tell you "watch out for RSV! We don't want to see you back here!"
So our days consist of playing inside and going to doctor appointments. I can't wait for May to come so RSV season can be over and we can enjoy going to friends' houses and being part of the real world!

Update on the little ones:

Easton is my little fighter, he has so many thing going wrong right now and he still is a bundle of joy and does not complain too much! He is still not interested in eating which has been very stressful. He has a NG tube in his nose that he gets his milk through and he is still having choking/coughing fits. In the next couple weeks he will be getting a swallow study done to see whats going on in there and why all the problems. I pray this will give us some answers and little E will feel better and want to eat. On Monday we also got our first of many therapists to stop by the house. Her name was Stephanie and she is Easton's feeding therapist. She will come once a week and work with him on eating and much more. She will be with us for 3 years and I am sure we will become great friends. On Friday we have OT, PT (occupational therapy, physical therapy) and a vision therapist coming by to evaluate the boys and I am sure they all will become part of our family too! This Thursday Easton and Steven will be headed down to Oakland once again for another eye surgery. Easton's right eye still has a hemorrhage that is blocking his vision. We are praying this is his last eye surgery.


Carter is one happy litttle boy. When you kiss his chubby cheeks his face lights up with the cutest smile! In those moments my heart melts and all the hard times are totally worth it! Carter is having some reflux as well and not eating as much as he should but he has some extra rolls on him so I try not to stress too much! Little man is sleeping through the night and I even have to wake him up to eat in the morning. This week we go in for a head scan like an MRI to see if everything with his brain is developing like it should and the shunt is doing its job.
"Carter playing with mommy"

Wednesday, January 18, 2012

Jan 19, 2011

I wanted to share the below essay published in a magazine called Brain, Child. The authoress, Kate Trump, is a mother of a boy with Down Syndrome. As I read this I really appreciated this mother's perfect expression of what it is like to live in the world of a child with special needs.

Not One of Those Mothers

I'm going to confess something.

I never thought I could do this. I never wanted to do this. I never, ever would have chosen this for me, for my one and only life, for my son's one and only life.
Before Thomas, my world was largely untouched by disability. I went on with my life, unaffected and unconcerned, and I never had to face my own ignorance.

Then, one beautiful June day, I was forced to face it-and the face it wore looked just like his brother's, with round cheeks, a tiny nose, and the deepest brown eyes.

Thomas arrived three weeks early on a sunny Friday in June. We made it to the hospital with just enough time to drug me up, something for which in hindsight I am extremely grateful. Not for the pain of delivery-his birth, my second labor, was quick and almost easy-but for the heart-wrenching pain and grief that came after.

Dr. T. is a calm and gentle man. He broke my water, saw meconium, and calmly explained that he would keep the baby from crying until he had suctioned him carefully and thoroughly. So when they rushed our new son (another boy!) across the room and huddled around him, we weren't alarmed. Dr. T. betrayed nothing while he and the nurses worked to resuscitate my baby. I was too giddy to notice as 10, then 15 minutes passed.

"He's having trouble breathing, so we're sending him to the special care nursery," my doctor said. I remember thinking that it was OK, that these things happen all the time.

Hours passed. I was moved to my postpartum room, and still we waited to see Thomas again.

I have to stop here for a minute, before plunging ahead into the next chapter. It's vital that I get this right so you don't do what we all instinctively want to do-put distance between my life and yours.

It's not personal, I know. But as soon as I say anything, your imagination will stand at the mouth of that dark tunnel, the one my husband and I found ourselves hurtling down when Thomas came into the world. You'll shake your head to clear the vertigo. Not your path in life. More power to me, but you couldn't imagine it.

I understand. Before Thomas, given the choice, I'd be leaning over your shoulder looking at some other mother with that same sense of sympathy and awe. "How do you do it? You're amazing," we'd echo in unison to that mother who, but for the grace of God, the universe, Mother Nature, and random chance, could be us.

That other mother sits a little apart. When she talks about her kid, there's a certain look in her eyes, like she's seeing something we don't see. She speaks a foreign language-of sats and meds, of OT and ST, of IEP and inclusion-that you don't want to understand. It's so hard and she's such an amazing woman, and you know that you wouldn't have the strength to do it.

You mean this as a compliment.

It's not. It's the verbal equivalent of throwing salt over your shoulder. It's a fervent and silent plea: Don't pick me. I'm not strong enough, I don't have enough faith, my heart isn't radiantly
kind. And what will he look like? And will I be able to love him, truly love him?

You wish desperately to believe that special mothers are chosen. That God doesn't give us more than we can handle. Two years ago if I had been told that at two days, instead of being discharged, my baby would be put on a lung bypass machine; that at two and a half months he would have open-heart surgery; that at 14 weeks he would come home, alive but fragile, with a feeding tube and an oxygen tank-if you had told me all of this I would have said, Nope, can't do it, find someone else please.

And if I had been told the first gift we would receive after my son's birth would be a book titled Babies with Down Syndrome, a present from the chief geneticist at the big-shot hospital? Certainly I would have paled and looked around. Me? Surely you mean someone else-someone who hears all this and doesn't turn away in fear.

Perhaps you're still skeptical. You can't let go of your certainty that somehow I am a different breed of mother. Now, I must concede: I am a different kind of mother.

Thomas is 20 months old now. At night I sit by his crib and watch him sleep, mouth open, the sleeve of his PJs exposing too much wrist because he's growing so fast. His pudgy hand rests on his baby-blue sheet, the one with the owls. His dark blond hair, exactly like his brother's, curls in a cowlick. His plump cheeks are covered with white medical tape, which holds the oxygen tube tight in his nose. I glance at the display on his oxygen saturation monitor. Nearby, my husband stirs in his sleep. The baby is still in our room so we can respond when his alarm goes off, signaling a drop in his oxygen levels. It's easier than stumbling down the long hall. I should be sleeping, too.
Yet I sit and watch Thomas sleep. Because I can.

I know when he wakes in the morning, he'll pull off the oxygen tube (he needs it only when he's sleeping) and greet me with a loud good-morning babble. His big brother will come in, asking to go downstairs and watch cartoons. "Bring Tommy down, too," he'll say, because to my amazement, after all we've been through, they're close as brothers can be.

If you had told me two years ago that this child would come into my life, I would have wished I could be the mother you thought I was, but I would have known deep down that I was not. If you had told me that I would sit here today by Thomas' crib and say that on most days I don't think much about his having Down syndrome, I would have said you have a fantastic imagination.

But the truth is, whoever or whatever is in charge of baby placement didn't see anything in me that is not in everyone-the capacity to love our children beyond measure and reason, beyond diagnosis and fear, beyond uncertainty and self. I wasn't picked to be Thomas' mom because I am special; I was made special because I am his mom. When I took him in my arms for the first time and gazed into his eyes, I saw only my beautiful, perfect son.

Monday, January 16, 2012

Where to start.......

I know its been way to long and I am sure everyone is wondering how the boys are doing. I will try to think back to the time Easton was released from the NICU.

On December 14 , 2011 after 145 days in the NICU Easton was able to come home!! It was so nice to have our family under one roof. Easton had a rough NICU stay, my little guy had 6 eye procedures due to ROP, a PDA surgery, a VP shunt, and a broviac. Way to much for such a small baby! Easton came home on 1/16 of a liter of oxygen and now is up to 1/8th due to his reflux problem. Easton's first week home went really great, he was eating well and even sleeping through the night for 7 hours. Easton went for his first doctor check up at his new pediatrician, she said that he was acting the age of a 1 week old and said to get him into therapy as soon as we can. Not really what I wanted to hear. I told his doctor that he had been having reflux and would vomit daily. She told me that she would not give him medicine until he was losing weight and reflux can get better with age.  She was wrong and I am mad that I did not fight harder for Easton to get medicine. 5 days later Easton had a Pulmonologist appointment and at the appointment he threw up on me 2 times! This was not just a little spit up it was 4 ounces of food all over. At that appointment the Pulmonologist realized that Easton needed more oxygen probably because of his reflux. Needless to say she gave us reflux medicine right then and there and told me to get a new pediatrician!!

Over the past 8 days Easton has decided he does not like to eat. We have only been able to get 10-13 ounces down him a day. It is so stressful to try to force feed your child when you know its only hurting them! So on Monday we saw a GI doctor and he placed a NG tube so whatever Easton does not drink we can place the remaining amount in his tube. So now not only does my baby have a cannula in his nose he has a big old feeding tube that he hates! Its nice to know he is getting the nutrition he needs but its so hard to see your child suffer in the pain from his reflux.

Yesterday we went to do a follow up appointment with the Opthamologist and Neurologist. We went in hoping to hear that since Easton has laid in an elevated position since his first vitrectomy that the hemorrhage has dispersed and was no longer an issue. However what we hope is never the case with these two boys. Easton's hemorrhage is still there and blocking the fine focal point in his eye. The Dr. called in a retina specialist who told us that the damage might already be done. It has been two months and the hemorrhage is still there. (The damage being that he will have sight he will just not be able to focus and see clearly through his right eye.) Then the Dr. said that we needed to schedule an appointment with the surgeon from Oakland for follow up and the possibility of yet another surgery. Did i mention i hate going to Oakland? But i hate it even more that i might have to take Easton down there for yet a sixth eye surgery?

Tuesday, November 15, 2011

Has it really been three weeks?

So, many people have been asking what is happening with the boys, what is happening with the blog, how is Easton, How is Carter?
Easton in his monster socks
So much has happened over the last couple weeks, we have kinda put the blog on the back burner and tried to focus on the boys and all that is happening here in Oakland, Roseville, and home. I will try to hit all the highlights and most of the bumps in the road, while trying to keep the blog short and not turn it into a novel.
Carter in hit pumkin beenie
So a quick recap, Carter had a shunt put in on the 26th and Easton was going to get his eyes checked. Well Easton got his eyes checked, Halloween happened and then we, Easton, Lauren and I traveled to Oakland Kaiser to have another opthamologist  inject the Avastin in Easton's eyes. Meanwhile, while in Oakland we found out Easton had tested positive for MRSA. Methicillin resistant staphylococcus aureus means that he has a type of staph that cannot be treated by some antibiotics, which is not a big deal outside the hospital, in fact we all have some type of staph, however while in the hospital we are now quarantined, everyone needs to wash hands and nurses need to wear gloves and a gown while tending to Easton's needs, (something they should be doing anyway if you ask me) so they don't spread it to other infants.
Easton enjoying all the attention from mommy in Oakland
So during our first stay here in Oakland, (I say first stay because I am currently here with Easton on our second stay.) Lauren and I came down to be with Easton while he received the Avastin injections. Easton was transported down on Wednesday the 2nd and had the procedure done on the 3rd. We waited until Monday the 7th for the follow up. Monday around lunch hour Easton had an eye exam which showed slight improvement but would need to be continuously followed. It was agreed that our Opthamologist back in Roseville would be able to do the follow up exams on Tuesday and Friday. After 6 days in Oakland Easton was able to be transported back to Roseville on Monday night.

While back at home in Roseville, Carter was still getting bigger and stronger after the shunt. Carter had hit the 8 pound mark and was looking more and more like a newborn/full-term baby. Lauren had come back to Roseville Saturday and Sunday to be with Carter and to leave him some milk. It is the hardest thing to leave one baby behind to be with the other when you have twins, especially when they are in a Hospital still needing care. How amazed and grateful we are for our nurses who had done such an outstanding job taking care of Carter, especially while we were taking care of his brother in Oakland. Carter continued to impress everyone as he did not need monitors or oxygen support, passed his car seat challenge with ease and passed his hearing test.
Carter milking the attention while mom and dad
were out of town
Which now brings us to Thursday, Thursday was a big day in the Klippel family, We roomed in at the Hospital with Carter. Let me preface this part by saying Lauren will NEVER AGAIN get a flu shot. Thursday morning was a day to do our last minute errands. We went and got our flu shots and I got my whooping cough shot. As we roomed in with Carter Lauren started getting the chills and an all over body ache. Lauren was having a side effect of the flu shot!!! So, I being the loving husband that i am, went to the pharmacy and got Lauren some Tylenol PM. Lauren was done for the night, bring in the reliever, dad had "daddy duty" for the rest of the night. With a collective 2 hours of sleep under my belt by morning, "mommy" was well rested and ready to cuddle.
Mommy and Carter cuddling after rooming in
 By 1 pm Carter was in his graduation cap and we were busting out "Pomp and Circumstance" on our iPhones. Carter roamed the halls saying good bye to all of his Caretakers for the last time of his 112 day stay in the Kaiser NICU. The big surprise, Lauren was due to have Carter and Easton on 11-11-11, and guess who came home on 11-11-11. That's right on his due date 40 weeks gestational, 16 weeks exactly from the day he was Born Carter Steven Klippel strolled out to his mommy car and went home for the First time of his life, outside for the first time in his life.
Carter in his Graduation cap
What a Joyous day, Taking home one of our our amazing little miracles. Carter has been enjoying his time at home, no crying babies, no alarms, no tests, just Eat, Sleep, and Poop, the things a baby should do. It is so fun during the day to listen to Carter grunt, not so much at night, but his little grunt as he roots around for his bottle. We even watched finding Nemo the other night a suggestion from Auntie Jess "one of Carter's primary nurses".

Today, brings us back to day two of our second stay here in Oakland. Last night, Easton was seen by the Opthamologist, who did in fact affirm what we were told, Easton would need the Vetrictomy. A Vetrictomy is where they take three needles and insert them into the eye, one to cut the scar tissue, one to remove the scar tissue and one to replace the void with fluid to keep the pressure even in the eye. An operation that will take about an hour to hour and a half. An operation that must be done while brother and mom are 2 hours away unable to sooth and comfort Easton and where dad and both grandpa's are here to assist and support during this time. Today we find out if the operation will be Wednesday night or Thursday night.
Easton spending time with Grandpa Russ
Here is the latest update, my apologies it has taken so long, We have just found out Carter's eyes are great and he will not need to be seen by the Opthamologist until next year. At this time we thank all of you for your love and support for our little boys.

WE RESPECTFULLY ASK YOU TO WITHHOLD FROM COMING TO SEE THE BOYS UNTIL THEY ARE A LITTLE BIGGER AND THEIR IMMUNE SYSTEMS ARE A LITTLE STRONGER, AS WE ARE APPROACHING THE RSV SEASON.