Carter's Surgery Day

Well today has been a long, tough day. Our sweet Carter headed into surgery around 9 am this morning. As Steven and I got to the hospital early this morning to cuddle Carter before we saw him off he was wide eyed and wondering, "mom, why aren't you feeding me my bottle?"

Where is my bottle mom!

Carter had been NPO (nothing per oral) since 12 am. Even though he was hungry he was still a happy little man and loved all the attention and kisses his parents where giving him. As Steven and I rolled Carter down the long hallway over to the O.R. in another building. As tears rolled down my face, I kept telling myself everything is going to be okay and my Carter is a strong boy. I never thought when I became a mother that I would have to see my child endure such a major surgery and have to trust others with my sons life. As we waited for Carters return to the NICU we loved on Easton. Carter returned to the NICU around 12pm and he was intubated and still on the ventilator. We were hoping he would be off the vent and breathing on this own but he was just to sedated to wake up. As I saw his little head the shunt was a lot bigger then I thought it would look. Doctor McNatt the surgeon came and talked with Steven and I and said everything went well and there was no complications. As we left tonight he was still on the vent and sedated. We are hoping by morning he will wake up from the anesthesia so he can start breathing on his own.
So if a brain surgery was not enough for one day both of the boys got their eyes checked. Both of the boys have had laser eye surgery due to ROP. Dr. Ruben the ophthalmologist said that Carters' eyes looked a lot better and he was really happy with the progress from the laser. Dr. Ruben stated that he is very concerned with Easton's eyes, saying they are no better and might even look worse! His eyes still have a lot of plus disease which can cause blindness. I can't even imagine my precious boy not being able to see the world! I am not sure at this point if there is anything else the doctor can do. Tomorrow Doctor Ruben has asked a collegue of his to come and give us a second opinion. We are trying to learn as much as possible about avastinan injection that should help but has not yet been approved by the F.D.A. People call it a "miracle drug" it has been studied in Texas but not much in small children and infants.  We pray we will not need to go this route and that heavenly father feels the same way.
Thank you for all the love and support.

3 Months old (37 weeks gestational)

First and foremost thank you to all who came to the baby shower Saturday, and to those who couldn't make it sorry we missed you. It was great to see friends and family that we have not been able to see in awhile. It was nice to get away from reality and tell the happy stories of Carter and Easton. It was nice to hear about other people and their lives. But enough about us, I know you all come here to read about Carter and Easton, after all that is why we have this blog.
After almost thirteen weeks of being in room 105 in the N.I.C.U. (Neonatal Intensive Care Unit) we were finally bumped to Room 101, only because they were installing black out curtains in all of the rooms. Carter and Easton are still side by side with open cribs and loving the attention from their nurses.

Easton's decked out crib featuring an airplane mobile, mirror, and zebra toy

Carter's crib sporting the twin-like airplane mobile, mirror and custom canopy.

Easton is now 5lbs and 10 oz. and has been upgraded to a life of Luxury, as he finally outgrew his isolette and was placed in a "Big Boy" crib this week. He gets to have a mobile which he absolutely loves. I now know by heart the pottery barn kids rendition of "Twinkle Twinkle".... as he cannot get enough of the planes flying over his head. Easton has also been taken off the Sipap and is now on the bubble Cpap. Reader's digest version of bubble Cpap is a tube is placed in water to give pressure and humidify air to help with the premature lungs, it is a softer machine that still assists him. Easton also began "nippling" this week, starting on 5 milliliters of pedialyte over a five minute increment, 4 times a day. He actually gets to remove the bubble Cpap and breathe with just a nasal cannula. Easton has done so well that they are letting him now drink breast milk from the bottle for 5 minutes 4 times a day. Easton's head has still remained within a reasonable size and the doctor is monitoring every couple of days.

Easton trying a bottle for the first time

Loving his time off the Cpap

Easton listening to "twinkle Twinkle" and watching his airplanes

Carter has been surprising us by leaps and bounds. "little man" has been packing on the pounds since on breast milk weighing in at 6 lbs. and 8 oz. Carter has been taking three and even four of his eight 50 ml. feeds by bottle and having no problems or residual I(leftover in his tummy before next feeding). Carter is also on 2 Liter per minute of 25% oxygen with a regular cannula off the wall which is great progress to not needing oxygen at all (progress, yes progress he is not off yet, we still have a ways to go) Over the past few days Carter's head has been increasing in circumference and during a head ultrasound last Tuesday we had been informed that his ventricles were increased substantially. Well this morning an additional head ultrasound was taken and to our unsettled fear it was worse than last week. Our Neuro-surgeon had informed us it was time for a shunt. Lauren and I were shocked, for weeks it had been Easton who we thought was sitting on the fence, whether or not to be shunted, we had completely put Carter on the back burner, he had been doing so well. As the Neurologist explained, it became more clear, Carter had been having apnic spells (not breathing spats) and periods of Bradycardia (decreased heart rate) both complications and signs of the pressure building up on his brain, due to the enlarged ventricles. As tonight progressed he continued having these spats and spells. We are watching him closely, nurses are keeping notes and if he continues to worsen his surgery will become more emergent and be moved from Thursday to whenever necessary. Carter has received a priesthood blessing and it is up to our Father in Heaven and the plan he has for our son. We only hope that it does not involve him going under for this operation.

Carter getting his first bath from mom and loving it, he actually fell asleep in there

Isn't that sign language for "feed me"?

Carter is doing so well it takes him about 10 minutes to drink a whole bottle

To briefly describe the shunt, it is a small tube that they insert through the skull and brain into the enlarged ventricle the other end they fish down through his body and insert it into his stomach. The fluid from the ventricle then passes through the tube and is absorbed through the stomach thus releasing the pressure and hopefully allowing the brain to repair itself and shrink the size of the ventricle.

It is hard to believe that just a few days ago our little Carter was doing so well, he is now requiring more oxygen, will need to be re-intubated and have to undergo this life changing operation. You can see it in his actions that the enlarged ventricles are affecting his alertness and ability to bottle feed.

As i just got off the phone with the nurses tonight, Carter continues to go up on his feeds, he is now getting 55 ml of breast milk through his NG tube, and Easton is doing well on his Cpap settings.

Wednesday we should find out the results of the eye surgeries from last week. I will try to get another blog Thursday or Friday to update you again on the boys. We also try to post quick updates on facebook

Quick Update

This week has been a crazy and stressful week! Steven and I have been at the hospital a lot and our poor boys have had a rough one. On Tuesday the opthomologist examined Carter and Easton's eyes and told us they both need surgery now. All in that same 30 minute time frame the neurologist told me that Carters ventricles have grow significantly and that if the grow anymore throughout the week he will need to have a surgery to place a shunt. I was totally shocked by this news. Everyone thought Carter was out of the woods for this procedure, he was not even being examined once a week like Easton had been. All I have to say was Tuesday put me over the edge!! My babies are big boys now and should not be having such severe problems at this point. I just have to keep telling myself that everything happens for a reason and heavenly father has a plan for my boys. Tonight as we left the hospital both boys where happy and on lower oxygen requirements than the day before so that was a positive. :) We won't know the outcome of the eye surgery until next wednesday but I sure pray its a good one! We will keep you posted about Carter. As of today his heads diameter has grown .5 cm. Please continue to pray for both the boys. We appreciate all the prayers and support. :) Sorry no pictures this week the boys eyes just look to sad! :(

Twelve weeks (36 weeks adjusted)

Carter- 6 lbs 2.9 oz.  18 1/4 inches
Easton- 5 lbs 0.4 oz.  18 1/4 inches

You read it right Twelve weeks in room 105 of the Kaiser Roseville Mother and Children's wing. I cannot believe we have made it this long. As I look back I would have thought there was no way possible to do this for so long and stay as strong as we have. It seems like we get sucker punched with new trials and setbacks all the time, but we hold strong to the exciting and positive progress these two sweet boys make.

Lauren has spent all of her time and energy at the hospital taking care of our boys and last week , Lauren fell ill for two days unable to see Carter and Easton, three days full of progress and exciting firsts. Last Thursday Carter was taken off the Vapo-therm and placed on 2 lpm of blended air and oxygen at a rate of 30%.

Then on Friday night, after i had finished work, visited the boys and did cares, came home to take care of Lauren, took fresh milk back to the boys, did cares and returned home, the Physical therapist came to see Carter and gave the "nod" of approval for him to start bottle feeding. Jess, one of Carter's primary nurses couldn't contain herself. needless to say at about ten thirty Friday night i received a phone call with an excited voice on the other end. "What's wrong Jess?" I asked. Her response was one of the proudest moments of our NICU stay. " Carter just drank all 41 milliliters of milk from a bottle" was her response. What an awesome accomplishment, our little Carter was able to not only drink from a bottle on his first attempt, but he was able to drink all that was given to him. Saturday Lauren was able to give Carter a bottle for her first time, and again impressed us by drinking the whole thing.

Another first was tonight, Lauren gave Carter his first tubby time. That's right our chubby little six pounder got his first real bath. Take a look at this pic...

Carter continues to get half of his feedings by bottle, while the rest go in through his G-tube, after all it is a lot of work for such a little guy to drink a full bottle every three hours.

Easton Has made some progress too, The opthamologist Came in this week and said that His left eye looked much better, and that his right eye looked like it was making progress but still needed more improvement. Hey I'll take that any day, my little man can see!!! and he coordination to boot... The other night We had bought Easton a little toy, a zebra with bright colors and rings on it. Needless to say he was wide awake when the Doctor came in and as she was watching him he reached up and grabbed the rings. We thought it was a fluke thing but for almost 10 minutes Easton sat there batting at the toy grabbing and the rings. WOW what a tugging on your heartstrings, to watch your son be able to make his doctor speechless with how well he was seeing.

Easton has also made some steps forward and some steps backwards, he was doing well on the Si-pap machine when they wanted to try a new mask on him to see if it would be a good investment for the hospital to go towards, needless to say after three days we are back to the old mask and Si-pap.

Easton continues to struggle with his lungs/diaphragm. I say lungs/diaphragm because the Doctors are not sure which is the greater cause of  his breathing difficulties. We are still hoping his lungs get stronger and the diaphragm corrects itself before the need of intervention is required.

We love you all and thank you for the positive thoughts and desire to follow our boys and their Journey.

Another Day in the NICU

So a nurse asked me yesterday "how many days have you guys been here?" I had to think about it for a minute and it's been 75 days! I can't believe I have survived 75 days in the NICU and still have months before my little guys come home. I have to remind myself daily to take one day at a time.

I missed blogging on the boys 10 weeks and 34 weeks gestational so here are there weights:
Carter is a chubby 5 lbs!!! I love every single roll on his cute little body
Easton is my lean fit man at 4 lbs 2 oz. He is slowly gaining the lb's and lost all his water weight.

News about Carter this week, he has been lowered to 2 liters on the vapotherm and his oxygen stays around 26 percent. He is eating 40 ml every 3 hours which is a little over an ounce. On Oct. 2 Carter tried to breast feed for the first time! It was such an amazing experience. He only lasted about 20 sucks but I am so proud of him! Then on Oct. 3rd we tried the bottle for the first time, he has the suck and swallow down but not the whole breathing part. Preemie's have a hard time getting all 3 of those down so it will just take time and patience. Hopefully he will be a champ at it soon! Carter's head ultrasound still looks stable and no need for a shunt at this time. The only problem Carter has been having is constipation, poor little guy just needs to poo! He is on a 27 calories and bena-protiens, so hopefully when he is just on straight breast milk he won't have this problem. Carter has also been transferred to a "big boy" crib. He looks so small compared to this crib. We were able to put up his mobile and have music playing for him. It was fun for Steven and I to decorate his little "room" with pictures and toys.

Easton was extubated on Friday and is still on Si-pap!!  I am so proud of him! He still needs about 45 percent oxygen but I am praying over time he will get stronger and will require less. The opthamologist checked his eyes and said they still don't look good but it usually won't start to improve for another week. I guess the disease is in a pretty bad spot in his eyes. I am praying daily for a miracle and hope my little boy will be able to see! Easton did not have a head ultrasound this week and I am not sure why but his head size has gone down which I am so happy about!! He will have a head ultrasound next week to see if the size of the ventricles have gotten smaller. Easton's diaphragm is still not moving like they want it to. They are not talking about a surgery yet because they want to give it more time to see if it can start moving like it should.

Both boys are given lasix twice a day to pee off all the extra fluid so it's easier for them to breath. Here are some cute pictures from this week.

While I was holding skin to skin with Carter he decided he wanted to move his head and look at me. :)

Carter giving me the "why are you waking me up face".

Easton is big boy clothes and on the Sipap

Easton thinking this Sipap head gear is crazy!

Eyes open after surgery and still a little puffy. :(

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!