It should be against the law for Nurses to STRIKE

9 weeks

Carter 4 lbs. 4 oz

Easton 4 lbs. 1 0z.
 

Well it has been about a week since we last blogged and so much has happened, it is hard to figure out where to start. It seems like just little things happen each day but it stacks up really quick into a whole big pile.
 

Let's start with the Nurses strike last Thursday, What a HORRIBLE experience... These so called nurses that were flown in and brought in by bus from other states could not have really cared any less for our babies. Lauren spent over 24 hours at the hospital overseeing these traveling nurses, who didn't know anything about this NICU, had no passwords to access charts, medicine or supplies locked in cupboards. Lauren would do everything the law would possibly let her do and then watch the nurse screw up the rest, then call one of our Doctors in to fix the mistakes. At one point Carter's nurse used her mouth to open his medicine, USED HER MOUTH TO OPEN HIS MEDICINE, are you for real holy crap you should have seen the doctor and Lauren as they verbally tag teamed this nurse on how wrong that was. Needless to say the Dr. assured us that she will have a very thorough evaluation to give to the agency who hires the traveling nurses.
 

Easton is having lots of troubles and complications. As we sit here and type this in one of the parents rooms in the NICU, Easton is having laser eye surgery on both eyes for R.O.P. and plus disease. Long story short the vessels in his eyes that are supposed to connect to the retina are not doing what they are supposed to, they are getting tangled and beginning to clot. As they happens it pulls the good vessels off and causes bleeding and blindness. Hopefully this laser surgery is in time to prevent total loss of vision. The Opthamologist says best case he will have a little loss of peripheral vision. However there is a possibility this will not work and he will be blind. But we pray and have faith this will not be the case.
 

Next Easton has had his broviac in place for around 2 months. Within the last week or so we have notice it has started to get puss around the entry site. The other day the nurses tried to draw blood from the site but it was clotted off. After several medicines and failed attempts to clear the clot we are learning that the broviac might be causing an infection in his blood stream. If this is the case the Surgeon would like to keep the broviac for a site to push 4-6 weeks of antibiotics. Lauren and I feel that this is a bad idea and have raised concern with keeping it in because it will also hinder the possibility of the shunt surgery or surgery to fix his diaphragm (I'll explain those next.) We have finally come to the conclusion with the Dr. and Surgeon, we need to remove the broviac, so tomorrow, Thursday the broviac will be removed.
 

As for the ventricles in Easton brain, they have been stable but are still full of fluid. Easton is still on the 50th percentile line for head growth and the Neurosurgeon feels that we need to continue to wait and see when the shunting will need to be done, if done at all.
 

The dreaded diaphragm, still has minimal movement on the right side. We are praying and hoping that it will start moving as it should. We also feel that when the broviac is removed that it will help, because that is when it stopped moving in the first place.
 

Easton is still on the ventilator and it sounds like he swallowed a duck call. This poor little guy has the biggest air leak around his E.T. tube but is still a little too small for the next tube. Friday we will be attempting to extubate him and everyone is confident he will do much better this go around, feeling that he has gotten bigger and stronger since the last attempt.
 

Carter got the to remove the funky rhino mask also known as C-pap. He is now rocking a humidified nasal cannula. It is so fun to see his chunky little face without all the tubes and head gear. Carter is also loving the outfits and beenies mom has been dressing him in. I can happily say that there is no major concerns or pressing surgeries. The only thing we are watching is a little bit of reflux after he eats, causing him to drop his oxygen settings for a couple of minutes, then back to happy. He really loves being on his belly and getting massages from his parents and nurses.
 

Here are some pictures of the boys over the last week.

That's my boy Carter, can't you see the resemblance

Sleepin' like his daddy, mouth WIDE open

Even though Carter loves his puppy, he is still a lil' too big.

Carter is such a mommies boy already

who needs earmuffs when you have hands

Easton wishing this squeeky tube would just go away 

After thirty hours off the vent his right lung collapsed, thanks diaphragm

 

After a couple hours back on the vent, hello right lung, still a high diaphragm

Tough Day!

Sept. 20, 2011

I will start with all the news on Easton. Monday he had his head ultrasound which showed that his ventricles are slightly larger due to increase in fluid. I have not been able to talk to the surgeon about surgery but I am hoping we can put off surgery for good or at least wait till he is bigger and stronger. Yesterday afternoon Easton was extubated (taken off the vent) and was put on bubble Cpap much to my disliking! I had expressed my concerns to the doctor that Easton was not ready and strong enough for the Cpap. The doctors wanted to try Cpap anyways and told me that they could always switch him to Sipap if need be. So 6 hours later Easton was on Sipap and doctor Chiou said to me "I should have listened to mommy!" There is just something about a mothers intuition... Easton was working hard on the Sipap and I hated every minute of it! Of course we where rooting for him to succeed but it is definitely hard watching your son struggle for every breath. Easton lasted 24 hours on Sipap and tonight at 10 pm was put back on the ventilator. So sad to see but I pray my little boys lungs will get stronger and his diaphram will heal and go back to it's normal movement.

My sweet Easton

Crazy looking Cpap!

Carter has been having some really good days. He is now on 29ml of breast milk and 27 calories. Man does this make his farts and poopies stink!!!! Occasionally during cares we can take off his mask and play and talk to him. He is so lively and fun and I enjoy every minute with him. I even love the sound of his cry, I know that will get old fast but so far I just love it! Carters head ultrasound came back with no changes since the last ultrasound. We are still praying that all the fluid will eventually resolve. Carters oxygen requirements have been around 28% and they are dropping the settings on the bubble Cpap daily. I am hoping he will soon be on vapo-therm and I will be able to see more of his face without all those tubes. :) Here are some pictures from the past 2 days.

I love holding my little man Carter

Crying baby and still so cute!

8 Weeks 32 Weeks Gestational

Carter 3 pounds 8.8 ounces

Easton 3 pounds 9 ounces

Easton has had a pretty rough week his oxygen requirements on the ventilator have ranged anywhere from 80% to as low as 35%. Sunday Easton has started a medicine for his pulmonary hypertension, as well as vitamin supplements. By weeks end another echo cardiogram showed that his heart was not straining as hard to compensate for his chronic lungs. On Monday Easton had a head ultra sound which showed his head was still stable, no new fluid buildup, however on Wednesday his head circumference had gone up by .8 centimeters which caused some concern for the Pediatric Neurologist. They will measure again Monday to see if it is time for intervention with a subgaleal shunt. Easton's diaphragm is still slowly moving, they have decided that they will not tack it down, but that it was possibly a stretched nerve and should be better in 6-10 weeks. Easton is loving his binky and tries to open his eyes whenever he hears mommy or daddy's voice outside his isolette.

Easton enjoying his pacifier (hidden under the tube and behind his hand)

Carter, Carter, Carter. This little guy continues to press forward on his brother's behalf. Carter is getting 26 calorie supplement with his breastmilk, vitamins, and is now getting 3 hours on C pap and 6 hours on Si pap on a rotation. Carter has been getting swaddled and been in an open isolette to try and hold his own temp without the assistance of the heater. Today mommy got to dress Carter in his first onsie "outfit". Other than that there is no pressing issues with Carter, knock on wood we are moving forward with cruise control.

Carter wearing his first (Carter's brand) outfit!

7 weeks 31 weeks gestational

Carter 3 lbs 37 cm long

Easton 3 lbs 2 oz 39 cm long

Friday Sept. 9th  2011 was the boy's were 7 weeks and 31 weeks gestational. So much has happened in 7 weeks I can't believe it! As for the last couple days things have stayed pretty much the same. Easton is still having trouble with his lungs and diaphragm and is still on the ventilator. He is eating like a champ and makes me smile everyday when I look at his cute face!
Carter is doing so well on the Sipap that they even lowered his settings today. I tried to hold Carter tonight but he was crying and being so fussy he was not having it. So as we put him back in bed he farted so loud and pooped his diaper. Now I know why he was so fussy his tummy hurt. Hopefully tomorrow he will be able to cuddle!

For now we ask that you continue to pray for our boys. This journey is so long and challenging, we need every bit of strength and support that God can provide. Pray for our continued abilities to manage this path and for the progress of our precious boys so that they may come home to us soon. Here are some pictures from Friday.

Carter so happy sucking on his pacifier

Easton wanting that darn tube out of his mouth

Easton loving his hand

Carter all sprawled out.

Kangaroo times two!

September 7, 2011 will go down as one of the most memorable and heart wrenching days of my life. The day I was able to hold my two boys for the first time in our lives. Carter was first to be held by his father who was eager to hear the news that mom and dad would both be able to hold him the same day. Of course mom held him first that day but the smile that was beginning inside of me as i saw Lauren hold him only grew and grew until I was glowing the first time his precious little body lay on my chest feeling each heart beat and feeling his arms and legs wiggle as he cuddle up on my chest. That feeling is a feeling i will never forget. As i held my son I could only imagine the boy he would grow up to be, would he be anything like me? would we share the same interests? my mind wandered as i ran through memories of my childhood with my dad and all the fun stuff we did (and do) together. Carter lay there just relaxed as he could be until it was his care time and i had to give him back so he could get a diaper change, medicine and food. That half an hour i felt like a dad, a real dad, with a little boy who just wanted and needed to be held.

Daddy holding Carter for the first time

Taking it all in and enjoying every minute.

Easton had just finished his care time when Amy his nurse asked if i was ready to hold him, REALLY??? was my response. I had no idea that he was in any shape or that i could hold him yet. What a treat to be able to hold my little man, the warrior and fighter that he is. My heart swelled with pride as my eyes started to water, this was truly one of my happiest days. Just typing this reminds me of the joy i had as I held little Easton cuddled in my arms, as he looked into my eyes smiling, (most likely because he was passing gas) but I like to think it was because he knew my touch, my smell, and my voice. for an hour and a half i talked to my beautiful boy, telling him of the love his parents have for him, how proud we are of him and how i could not wait to bring him home. The hardest part was letting go of my two boys putting them back into their beds and going home empty handed. The pure love that one can have for his children was felt that day and it is a day i will never forget. I only hope that these boys come to know and understand that they will always have a mother and father here to love them and help them.

Oh the joys of being a father

I think the nurses were almost as excited that daddy was holding Easton.

So small yet so much love.

A special Thank you to Dr. Sarah Buxton, Rosie, Amy, and Michelle for helping me hold my boys and make this experience such a special one.

Cuddle's with Easton!

Sept. 6, 2011

After 6 weeks 4 days I finally got to love on my Easton!! It was the best day ever! I got to hold him for a hour and he did so amazing. I know he loved the sound of my heart and I loved the felling of his against me. :) We did skin to skin called kangaroo hold. Easton and I talked about him playing sports with his brother and how mommy and daddy will spoil them rotten! Easton also loved when I sang to him primary songs. I am hoping I get to hold him again soon! Here are some pictures from our special moment.

Sleepy Easton

Happy mommy!

Isn't he so cute! I love his button nose!

Breathing is hard work

Easton is our little trooper. He has been on the oscillator for 10 days and has been hating every minute of it. Nurses were giving him morphine every 4 hours to try and relax him. I hated seeing my little boy all drugged up and so unhappy! It's so hard seeing your boys struggle because they are so little and fragile. They are not supposed to breathing on their own yet, I am the one that should be providing oxygen to them. I feel so bad that I couldn't stay pregnant long enough and now I have to watch them suffer to breath.  Easton got a chest ultrasound and it still showed very little movement of his diaphragm. We now have a pulmonologist and radiologist meeting with our doctors and us regularly to try and figure out what they can do for Eastons chronic lung disease. Sunday doctor Buxton discontinued Eastons morphine in hopes it might be inhibiting his lack of movement of his diaphragm. In another attempt to relieve pressure on his diaphragm they adjusted Eastons feeds to a 7 ml an hour, continuously. By Sunday night Eastons oscillator settings had been set to a new high.  It was so hard to watch my poor little baby shake so much just to breath. Heading home with heavy hearts that night Steven and I knelt in prayer asking for comfort and another small miracle for our little Easton. By Monday morning as we showed up for cares we received unexpected but exciting news, Dr. Buxton switched Easton from the oscillator to the conventional vent!! She felt that he was tired and fighting the oscillator and that the vent would be a good change. This morning Easton received another head ultrsound, and we were unofficially told by one of Easton's primary nurses (she will remain nameless) that the Radiologist reported Easton's third ventricle looked a little smaller and that the others were not increasing. Surgery will be postponed until he gets bigger and stronger.  (HALLELUJAH!) As of tonight he is doing great on the vent and requiring less oxygen then what he needed on the oscillator! This was a answers to prayers and I love seeing my little guy so happy!!

Easton and his big beautiful eyes after the morphine wore off.

* See my next post for more exciting news about Easton

Carter had some big changes over the past couple days. Saturday Dr. Buxton decided to give Carter 3 doses of Dexamethasone which is a steroid, and steroids are never a easy choice because of all the bad side effects. However Dr. Buxton felt that to get Carter off the ventilator and onto either Sipap or bubbling Cpap, he would need the extra boost from the steroid. Sunday morning Steven came straight from work, and we met Dr. Buxton, Dr. Ajibola, Karen from R.T., Rosie, one of Carter's primary nurses, and a slough of others excited to see the moment we have all been waiting for, Carter was to be ex tubated and start on Sipap!!!

Free at last, Free at last!!!

For the first time since July 22, we were able to see Carter without anything on his face and the tiny little cries we so longed to hear. Even though it was sad to hear our baby cry, we couldn't help but smile, his cries sounded like a baby lamb because of the inflammation and soreness of his chords. We found out the hard way that you cannot expect things to go smoothly when transferring a micro-preemie from a machine that does most of the breathing to a machine that only assists with breathing. We saw a very apnic baby several times Sunday. The Dr's were insistent on keeping those tubes from going back in Carter's mouth, and that night decided to try the bubbling Cpap to see if would be easier on him. Come to find out, things only got worse. Monday Lauren's parents and grandma came to see the progress and were rushed out after only a few minutes because Carter had a big huge episode (heart rate less than 30 and stopped breathing for a period of time) After being bagged for several minutes our little man was pink and breathing again. We came to the conclusion that Carter just hates being handled or that the large amount of food was making it difficult for him to breath. Dr's decided to put him on an a feeding time over a one and a half hour span. by Monday night it was decided that Carter needed the little extra support that the Sipap offered and was placed back on the machine for the second time in two days. As of today Carter did not have any big episodes, just a few small ones. We hope and pray that he will get stronger and better each day.

Carter on the Sipap.