My boys

Life is still busy. But life is good. We are counting our blessings here instead of focusing on the trials we are experiencing. Carter came to visit again in Salt Lake and this time is in love with his brother. He wants to hold him constantly and gives his big smacking kisses. He will even try and take him out of my arms when he is ready to hold him.

This is one of my favorite pictures. 2 of my favorite boys together.
The biggest update is that Jackson was allowed to start feeding by mouth on Wednesday. Only 7 days after major surgery he was ready for some milk. They started him on 5mL every 3 hours which is 1 teaspoon. The first time it took him a few minutes to realize what was happening but once he realized there was something coming out, he chugged it right down.

The only bad part was that it was over in about 20 seconds and he wanted more. And his binkie was a poor substitute....it didn't produce milk when sucked!
Here is his milk induced coma look. He has tolerated his feeds as well as expected and so today they bumped him up to 7 mL every 3 hours just today. He is making wonderful progress and is such a happy, easy baby. The only time he cries is when they change his diaper or make him get undressed. He has the highest screech I have ever heard. And quite honestly, we love hearing it. He went several days without much movement or noise so it was refreshing to hear him cry. The nurses all love having him as their patient because he requires so little care. And rarely cries.

This is the face of a satisfied milk drinker. He is still a little baby. He weighs about 6 lbs 8 oz right now. Up 4 oz in 10 days. We hope that he can start putting on more weight with his new feeds. **Did you notice he no longer has any tubes in his nose or mouth? I was so excited to see that last tube gone.

Carter loves the playroom on the next floor. Which is great for us since we will be spending a lot of time at the hospital.

The same day he started eating, he also realized that he could open his eyes and be awake. It's so fun to see. After he eats he is usually awake for 10-20 minutes. He likes to look around and has even started to follow our voices with his eyes.
He gets to be dressed each day....minus his right arm. To many wires to fit into a sleeve for now.

He gets the open mouth sleeping from his mother I'm afraid to admit.

We celebrated Neil's 29th birthday here in Salt Lake together. Carter got to pick out his daddy's present all by himself. He picked M & m's and a rootbeer.

We are officially living in salt lake now. We rented an apartment today on a month to month basis and are in the process of finding a daycare for Carter. Somewhere he can go for a few hours a day while I am at the hospital and Neil is at work. Daycare prices are a bit higher than in Logan. I was spoiled at the Sports Academy paying 25 cents an hour! It is so weird to think that just last week we were living ordinary, boring lives and now we live in SLC with a new life.

We are still amazed at how wonderful people are and how helpful everyone is. Thank you to all who have called, texted or offered help in anyway. I hope to have the opportunity to help someone like people have helped us. We miss Logan a lot but are looking at the bright side here in Salt Lake!

Baby Steps

I've heard that the motto of having a baby in Intensive Care is "2 steps forward, 1 step back." Which I know if true. We've experienced that. But luckily in a VERY mild form. Jax continues to thrive as we wait for his poor insides to heal. We've already seen progress. Who knew we'd be so excited about a little bit of stool?!

Jax started to look a little yellow the last few days and we knew what was coming. Jaundice. Nothing serious. 6 out of 10 newborns have jaundice. The only hard part for Jax is not being able to eat food. Jaundice is usually helped by eating, which flushes it out. And since Jax can't eat, he doesn't get that benefit. Saturday morning we walked in to him being under the lights. And boy was he mad! He was fighting it and letting us all know how mad he was.

It was heartbreaking to see really. After finally waking up after sedation and surgery, he loved being swaddled and cuddled and held. And now he has to be naked, uncovered and left in his bed. He was crying, arching his little back and wouldn't hold still. Constantly grabbing at the mask they make him wear. Good thing I am not in charge of his care because I was seconds from snatching him and holding him in the rocking chair. They finally had to give him a low dose of sedation. After being sedated for a few days I hated the thought of more sedation but couldn't stand to see him unhappy and crying. (Although this was the first time he'd really cried and it was good to hear his little voice. And they wanted him to cry a bit and make sure things were cleared out of his lungs).

We have had such great, patient nurses and one of his night nurses, Jaime had the brilliant idea of placing him on his tummy, with him cuddled around a blanket. Then there was a little pouch he was placed in to make his legs closer to his body and give him the idea that he was swaddled. He loved it! He took his binkie and fell asleep and slept in this position all night!

This morning when we went to visit he was back on his back and completely calm. He hadn't needed sedation for over 12 hours and was able to relax and stay under the lights. His levels had gone down this morning so we are hoping it's not much longer in the lights. I miss holding him whenever I want and seeing his cute little face.

We are able to hold him occasionally and boy does he enjoy it. He is nothing but content in our arms. He already has his daddy wrapped around his tiny little fingers.

Before the jaundice, Thursday I believe, he was able to be dressed in real clothes. It's hard to tell in the picture but he is wearing his first outfit. What a little thing really, but what a fun thing to be able to dress your baby.
Close up. His skull is very prominent in his tiny head and we think he could have a position on Star Trek someday! Good thing he will grow into it.

Our first time being able to capture his eyes open. He was wide awake this night and moving his eyes between Neil and I as we talked to him.

Before the jaundice Jax was able to have many visitors and is looking forward to many more. He has so many people who love him and are concerned about him.

Grandpa E's first visit. They have the same hair style if you look closely:)

Aunt Catherine's first visit.

Grandma E's first visit. Or as Carter calls her "Grammy Susan."

Grandma B's first visit. AKA "Grandma Alma."

We are staying in a basement apartment of a dear friend who has opened her house to us. We appreciate having a comfortable place to stay and sleep. Because we may be here for several months, we are looking into more long-term accommodations and are looking at renting an apartment for the summer. We will have Carter move down with us soon so we can stay together as a family. We miss him terribly and it's hard being apart from him, but appreciate our families being willing to take care of him.

And just because I miss him like crazy.......

Day 3

This is a really long post but there are so many things I don't want to forget so I need to write them down. Incoherent or not. Here they come!

These pictures are from today. They are completely out of order but I am way too tired to fix them. These pictures really speak for themselves. Such a good day. It gets a little hard sometimes to not wish for different circumstances but then days like today make me forget.

First my mom and sister brought Carter down to visit for the day. It's only been 48 hours since we've seen him but it seemed like an eternity. We were so glad to see him and my mom and sister. It gets a little lonely here!

Second:

They took out Jackson's breathing tube about 3:00 today and he was a champ. He never had any problems and remembered how to breathe on his own with no problems. Plus he's awake and we even saw his eyes for a few seconds today. After pulling the tube they watched him for a minute and then came the moment I've been waiting for.....

I got to hold Jackson for as long as I wanted. He snuggled right up to me and was as content as any baby could be. This was the first time I've seen his face without lots of tape and tubes everywhere.
The first question Carter asked when he saw us this morning was "Where's Brother?" So we took him right away to meet him. We tried to explain what he would see and how brother is a little sick with some owies. Carter wasn't scared of him but he was a little apprehensive at first. The second time Carter came over he was more willing to touch him. I think the lack of tubes, the blanket covering things up and me holding him made him feel more safe. He wanted to hold Jackson's finger and was talking to him.

Jax loves to sleep with one of his hands up near his face. The other arm holds his PIC line so it makes it a little difficult. He also loves a good binkie. He knows right what to do with that thing and I'm hoping it keeps his sucking reflex nice and strong for when it's time for some milk.

He still has his suctioning tube to get all the garbage out of his stomach until his bowels recover. But they are hopeful this tube can be removed in a week and we can start oral feedings.
As we left the nursery the first time Carter didn't want to touch Jax at all. He did however blow him sweet kisses and told him he loved him.

First time together as a family of 4. This was before Jax had his breathing tube out so he was a bit scarier to Carter.

Carter and Grandma picked out a special lovie for Carter to give to Jax and he of course chose Mickey Mouse. He now sleeps next to Jax in bed.

Carter loved riding with me in my sweet wheelchair everywhere we went.

Back down to rest. They are thinking that he may be able to be dressed in clothes tomorrow and moved to an open crib. He is having no trouble maintaining his body temperature so they are thinking of switching tomorrow. His bili ruben levels are rising a tiny bit each day so they are watching for Jaundice. And it's not uncommon, especially in premie babies. And especially since he can't eat by mouth which usually helps combat that. It's so weird to think of him as a premie since he was 6 lbs 4 oz but since he came at 35 weeks 6 days he technically is.

His hand went right back up to his sweet face. He will suck on his fingers or wrists occasionally and yesterday when he still had his tube, he would bring his wrist up and lick at it. Reminded me of a cat.

Now for the random pic of the day: This is me Tuesday morning before we left for Salt Lake. I carried Jax all up front like a basketball. The reason we ended up delivering even earlier than planned was that an ultrasound the night before showed that I had extremely high levels of amniotic fluid. Which is dangerous to me and him.

Last week my feet and fingers started swelling like crazy and now we know exactly why. There was so much fluid in me and I'm still trying to get rid of it. I gained over 7 pounds in less than a week that was all fluid. That's a lot of fluid! My feet still swell if I'm on them all day and my poor, poor nose. It took some of the fluid and is still storing it. I look at these pictures and wince. I hope my nose can go back to its original size soon.

People keep telling me they can't believe I blog once a day. It's a great outlet and it's something to do when we aren't at the NICU visiting Jax. We are allowed in there about 22 hours a day but there are 3 hours of shift changes, and private meetings where no one is allowed. Plus I have to rest a bit to try and recover from my surgery. Which is hard to do since I want to be over there so much but I try and force myself to take a few minutes each day to just sit in my bed and rest. And it feels great.

Thanks again for all the love and support. So many people have offered so many things and we really appreciate it. I am overwhelmed with all the love and support. So far there isn't anything anyone can really do but we will remember all of your offers! Actually....who wants to run my swollen feet?! No ones offered to do that yet........

And mostly, when I get discouraged thinking of how I will be discharged Saturday without my baby I try to remember that things could be much worse. And I see worse each day in the nursery. Jax is probably the healthiest little boy in his area. And probably has the best quality of life compared to the others. It's hard not to cry each time I enter and leave the nursery. I cry for my little boy but I also cry for the other babies there. It's so hard seeing sick babies. We are very grateful for the care we've received here and the wonderful doctors and nurses. They treat us like family and treat our baby like one of their own. We know he is in the best hands possible.

We met with Jax's surgeon last night after he got done of doing literally 2 days straight of surgeries. He is quite hopeful that we can take Jax home even before his last surgery. The nurses keep telling us that he can't go home until he's put back together but our surgeon makes the ultimate call and he will help us get the training we need to bring him home sooner. We don't have a timeline so we're just trying to be patient.

Surgery Update

Wow. What a crazy 24 hour period. Highs, lows, and lots of unexpecteds. Jackson went into surgery with the surgeon thinking this would be an "easy" straightforward thing. After many hours of waiting, we knew it wasn't. The surgery was much more complicated than they thought and the obstruction was more severe than they thought. It's so hard to explain and so many things I'm still learning but I'll try and explain the best I know. In very generic "Amanda" terms.

There were multiple obstructions in his small intestine which caused some serious damage to the upper and lower parts of small intestine. The upper part was swollen up like a balloon because it was retaining all the fluid while the lower part wasn't receiving any nutrients so it was much smaller and malnourished than it should be. The hope was to be able to cut out the blockage and stitch the 2 sections back together but it was explained to us that it would be like trying to attach a garden hose to a drinking straw. Impossible. So he had to cut the intestine in 2 pieces and attach each separate end to Jackson's abdominal wall. Which in medical terms are called ostomys. Or stomas. The plan is to feed the smaller part of the intestine directly with the stuff that comes out of the upper section. In hopes that it will get all the nutrients it needs to grow and hopefully match the size of the other part and reattach. They can't be sure when it will be ready to reattach but we are hoping in about 2 months. And unfortunately because of the complexity of this, we cannot care for it at home and Jackson will remain in the NICU until they can reverse this procedure.

He won't be able to take food by mouth for several weeks and even then he may only get partial feeds by mouth after that for a bit. He will be fed by something they call "TPN." Which is basically being fed through his veins with basic nutrients such as salts, glucose, amino acids, lipids and vitamins. This will bypass the need for digestion until his bowel recovers and awakens. As I type he is having yet another procedure done to place a PIC line. A line that goes through a major vessel in his body and stops just short of the heart. This is to avoid having lots of IV's and also to feed his TPN through.

Short term prognosis is day to day really. He is stable and this isn't necessarily life threatening but he will have a rough little life for a bit. After they can reattach everything he should live a relatively normal life. He may suffer from what they refer to as "short gut syndrome." Which might mean he may have some dietary restrictions. Foods that won't sit well in his tummy and will need to avoid them.

He was in surgery for 3 hours last night and that is a long time for an 8 hour old baby. So he will be recovering from just the anesthesia for a couple days. He is pretty heavily sedated still and has a breathing tube for now. He can breathe just fine on his own but they needed it for surgery and now they want his poor body to rest without having to focus on breathing. And he needs to be sedated for awhile so he won't feel the pain of the surgery. In a day or 2 he shouldn't need to be sedated any longer and he can get rid of the breathing tube. He is still breathing some on his own, even with the tube, so they are positive he'll come right off of it with no problems.

I am anxiously waiting for the tube to be out and for him to recover a bit so I can hold my baby. My arms literally ache as I sit by his bed and can only lightly touch him. I would even be fine with a quick kiss on his cute little face but that's not an option right now either. I haven't been able to see my baby's face without some sort of tube or tape attached to it.

Luckily the staff here at U of U are so wonderful and understanding. They usually make C-section patients wait 12 hours before they can get out of bed and such but they let me not only stand up yesterday but venture over to Primary children's several times(by wheelchair) and see my baby. And today has been the same. We've been over there several times for several hours and they let me come and go as I want. Everyone says they can't believe I am up and about after my surgery but let's be honest...who wouldn't be. I have to if I want to see my baby. I am required still to take the wheelchair over because they discovered today that my blood volume is only half as much as it should be. We had to deliver on Tuesday because my amniotic fluid way was high which meant he wasn't passing any through himself. It was dangerous to me and him. And since I had so much extra fluid it has essentially diluted my blood. I get light headed and dizzy quickly so I have to be careful. Hopefully it can replace itself quickly and not take months, which is not abnormal.

We are hanging in there and will remain in SLC until Jackson is able to be released and come home. Since we are looking at a longer stay we are exploring more semi-permanent options which include Carter coming to live with us down here. Primary children's has so many wonderful resources for families and so it looks like Carter can go to a wonderful daycare while I visit Jackson each day. We'll see as time goes by.

Thanks so much for all the texts, calls, and comments and mostly prayers. We appreciate it more than I can express.

Pictures from Today:

In his mouth is his breathing tube and a suction tube. The suction tube removes anything that might get into his tummy. Once he no longer has anything in his tummy that tube can be removed, along with his breathing tube. He will look so different once all his tubes are gone.

People have said they think he looks like carter. I don't see it really. Maybe because of all the tape and wires. Plus Carter had such DARK hair when he was born, and lots of it. Jackson has such light hair and his eyebrows are almost invisible. I think he's adorable. And definitely the cutest in the hospital!

Introducing......

Jackson Blake Etherington made his debut 4 weeks early, today, May 17th at 11:46 am. Weighing in at 6 lbs 4 oz and 18 inches long. Long story which I don't have the energy to write now. But he is doing so well considering his obstruction. He is breathing completely on his own and never needed any help. He's so stable that the only thing he has right now is tube down his little throat to remove any air or liquid that gets in his stomach.

Born via C-section at the University of Utah Hospital. What a wonderful hospital. I have loved each and every person whom I've worked with today.

After being pulled from the womb he was taken straight to this window and passed through to the NICU team who was waiting for him. We didn't even get to hear his first cry. And because of the big drape they had up, I didn't get to see him at all.

Neil was finally allowed to go to the NICU after he was stable and prepped. I had to stay in recovery

Has just a little bit of hair that appears to be blond with maybe a tint of strawberry blond?

Proud Daddy holding him for the first time(and only time so far)

On his way to Primary children's from the U of U they stopped in my recovery room and I got to hold my sweet boy for about 5 minutes. 5 minutes of heaven though. He cuddled right up. I am in love!

First family shot.

After I got to see him they wheeled him over to Primarys. If you've never been here, the hospitals are actually connected through an indoor walk way. Takes about 5 minutes. They had to transport him in a life flight incubator, just in case. Looks way scarier than it actually is.
He is currently in surgery now to try and fix the problem. They had to run tests on him for several hours and since he was/is so stable there was no rush to get him into surgery. Dr. is pretty sure the blockage is in his small intestine, which is the easiest to fix. He is pretty sure 1 surgery should do the trick. After that he will need to rest and recover until he can start eating and passing stool. So we wait. Dr. estimates 4 weeks in the nicu and then hopefully home!

Thanks for all your prayers and well wishes. He has already had a priesthood blessing and we know he will do wonderfully.