Birthday Celebrations

Happy Birthday Daddy!!!
Love, Andrew

We celebrated a few birthday's this week!!!  First of all, it was Stephen's birthday last Sunday. He was excited to turn a ripe old age of 31. Boy we're getting old. Don't ask me why...but he was very excited to be "well into his thirties."  We were able to celebrate all weekend and hang out with family. I made some yummy raspberry cheesecake, which is a favorite of Stephen's. Both Andrew and Ethan like being held by their daddy and I think that was the best birthday present anybody could have given him. :)

Andrew and Ethan are continuing to slowly improve and move in the right direction, for which we are incredibly grateful for. We celebrated their 2 month birthday this week as well! We are so amazed at the journey the last few months have taken us. As for now, both boys are still dealing with the hydrocephalus, but neither of them have any type of shunt or reservoir in their little heads.  They are able to manage everything on their own and have been for over a week, since they took everything out. The neurosurgeons are continuing to check on the boys every few days to make sure that everything is looking okay. And....so far so good. :) 

Although, we have had a few scares this week.  They thought Ethan was getting sicker and worse on Thursday,  but nothing has really come of it. They can't really figure out if he's getting sicker or if it's just his hydrocephalus getting worse.  Clinically there really isn't anything more that they'd do, but they are watching him with a close eye. I would say he hasn't made big improvements like Andrew has this week, but he definitely hasn't gotten any worse. Which is a great blessing. 

They are both gaining some good weight. This week on their 2 month birthday, Andrew weighed 4 lbs 4oz and Ethan weighed 4 lbs and 3oz.  It's a tight race!!! They are starting to get a little fat on their bones. The chubby cheeks are starting to form and they now have a small little bum. I think they are looking more and more like each other now that they are getting some fat on their bones. Ethan still seems to have a bit lighter brown hair and Andrew's is still pretty dark. Everyone asks us who they look like. We both think it's hard to tell, but a bunch of the nurses say that they can see a lot of Stephen in both of the boys.  Andrew is now getting all of his nutrition from my milk and is receiving 30 ml every three hours.  Ethan on the other hand still hasn't started feeds yet. They may try to start feeding again after the holiday weekend. We were concerned about Andrew eyes, because they weren't developing correctly, but after his eye exam this week they are doing great and almost fully developed. YEA!!! 

I've had to start back to work this week, which has been a hard transition for me. But it's good to be back,  be with my darling kids and wrap things up for the end of the school year. It's only for a few weeks and I'm only going part time. I would have to say that it's a lot easier for me to be at school (emotionally, physically and mentally), when the boys are having some good days.  As much as I want to, I haven't been able to make it to the hospital everyday because I'm working. But Stephen has been able to go up there. We've both been able hold them a number of times this week again and we are cherishing these small moments. Here are a few more pictures from this week!

Mommy & Andrew doing skin to skin

Ethan 2 months old

Ethan in Daddy's arms

Andrew trying to decide if he's mad :)

A perfect week! Absolutely wonderful.

Yep, this was the best week I think -- I can't think of a single thing that went wrong, and a whole bunch of things went right. Both boys have been recovering very well from their meningitis, sepsis, and NEC, and in Ethan's MRI this week the neurologist couldn't find any additional damage from the e. coli! And, our little Andrew, for the first time in his life, came off his ventilator, and a few days later, Ethan decided to follow suit, and also decided to skip CPAP and high flow, and went straight to a normal canula. Today he is sitting pretty at .5 L/min at 21 - 25%, so he's doing great. Andrew is feeding, and Ethan will probably start getting beginning feeds tomorrow or the next day.

The other good news is that both Emily and I have been able to hold both Andrew and Ethan a couple times this week, which was absolutely amazing. I'm just so grateful that they are healthy enough for us to hold them. We really hope that they can stay healthy for a long time so they can start feeding well again, gaining weight, and getting stronger. It will be great to be able to start working on the hurdles they need to overcome in order to come home instead of just focusing on their survival. Today, the nurse practitioner told us that pretty soon that's what we'll start working on. Come on Andrew and Ethan!

This is Emily holding Andrew and me holding Ethan this week. They did just wonderfully. What a great week!

Some Great Surprises

I've had a few surprises this week...both of which are fantastic. I've been looking forward to these moments for a very long time, but both came to be a bit of a surprise! The first was last Wednesday. I was heading into the hospital that evening with my mom and Andrew's nurse asked if I wanted to help her bathe him! We just happened to be there during their bath hour, so of course I jumped at the chance. It was a bit intimidating to help...even with the nurse coaching me.  He's still so incredibly tiny and fragile. It was just a sponge bath of course, and I was definitely a rookie and a bit slow. He got pretty excited and didn't like getting wet. He was trying to cry and arching his back, but being intubated you can't hear anything. We got him all cleaned up and his diaper changed and then I helped her weigh him.  It was such a sweet moment I'll treasure and luckily my mom was with me that night and snapped a few pictures.We just happened to have some good timing that night.

Trying to Calm Andrew before his bath

Helping the nurse weigh him for the night

Giving him his bath!!!

Then a few days later they put him on the CPAP. I couldn't believe my eyes when I saw him breathing and everything was out of his mouth. It was a first, and he was doing really well with it. They asked me if I wanted to hold him. I was in a little shock and didn't realize they'd let me so soon. I needed to leave soon. So I told them I'd come first thing the next morning. I felt like a little kid waiting for Christmas morning. It just couldn't come soon enough!!! They let me hold him in my arms (because of the CPAP mask) They bundled him all up in blankets with all his wires and IV cords and laid him in my arms. They put a bunch of warm blankets on top and with his CPAP mask and hat all I could really see of his face were his cheeks. I was okay with that. I stared at those cute little cheeks the whole time and still couldn't get enough. The biggest thing we had to worry about was him maintaining his body temperature and he did pretty good. The nurses kept checking his temperature every 15-20 minutes. He lasted for about an hour. We've waited for this day for a very long time. I just wished Stephen could have been there for these firsts. He's been out of town this last week for work. Enjoy the pictures!!!

Andrew and a very HAPPY mommy!

Here's our little guy all bundled up!

Miracles

I must say that we have literally seen miracles this week with our boys. I almost am in tears just thinking about it. Today they are 7 weeks old and it's crazy to think that we were planning on them being born the end of this month even though my due date was in June. Yesterday, I had to pick something up at the hospital they were born at and as I drove up and walked in I had a flood of emotions come back to me with everything we've gone through the last 7 weeks.

Even though both boys are still in critical condition...we are heading in the right direction this week. Here's the updates and the small miracles we've seen:
Miracle #1
They had to take out Andrew's drain because of his meningitis and so he's had nothing this week to help relieve the pressure. Well as of yesterday his OFC (head circumference) hasn't grown at all. The neurosurgeon came and checked on him and he said that he's looking like he doesn't need surgery at this time. YEA!!! That's one less surgery for now. They doing head ultrasounds today and just to double check.
Miracle #2
If the head ultrasound looks good then they are going to take his breathing tube out and take him off the ventilator and put him on CPAP. This is a first for Andrew, as he has been so sick since he was born that he's needed a ventilator his whole life. With him being CPAP instead of a ventilator, that is one step closer for me to be able to hold my sweet Andrew for the first time.
Miracle #3
Also, because he had gotten another infection, they stopped his feedings to prevent NEC from developing. Everything is looking great with his intestines and stomach and so they are going to start him back up on milk this weekend! Another big blessing...hopefully this will help him gain more weight and get stronger. As of last night Andrew weighs 3lbs 11oz He's starting to get a little double chin. :)
Miracle #4
Ethan is still a very sick little boy. It's probably a blessing in disguise that until now I didn't realize really how sick my boy was. Ethan has made some good progress and yesterday he was put onto a different ventilator. This is the one where it does less work for him and he can do more breathing on his own. Which is a great step in the right direction.
Miracle #5
Ethan is also fighting those infections. They culture his blood and CSF (spinal fluid) daily. We've now had 5 days of negative results in the blood and a day of negative results in the CSF!!! Yea! This means that the medications are working, he's still fighting infections because his white bloods cell count in still high, but once again we're seeing improvement.
Miracle #6
If there can be big and small miracles...in my book this would be a big one. Almost 2 weeks ago Ethan was diagnosed with having NEC. In his case it was all throughout his entire intestine, not just a small part. In a nutshell, his intestine was inflamed and dying. (And lets be honest...you can live without a few things, but your intestines is not one of those things) We've been watching it closely with x-rays multiple times a day. We've been very fortunate that there were no holes, just inflammation. Well, yesterday the x-rays came back looking normal. No more inflammation and things are looking really good. They are looking at starting feedings soon. This is huge. I truly feel that this is because of all of the prayers and faith of our family and friends. I also know that the healing power of the priesthood is real. It was pretty powerful to see my husband, dad and brothers-in-law put their hands in Ethan's incubator and on his tiny little body to give him a blessing. There was such a strong spirit there it was very comforting. I am so grateful for a worthy husband and have had my testimony of the priesthood strengthen so much this week.

Soon after they were born I read a talk and it mentioned this about faith.

"When someone has an ailment or illness and they are healed as the result of a blessing, their faith is being strengthened. But for those who aren't healed, but continue faithful, their faith  is being perfected. The first is a faith-promoting experience. The second is a faith-perfecting." 

This quote keeps coming back into my mind. It is a great reminder of me to hold on. I know that our experience with Ethan this week has been a faith-promoting experience...but in general I feel the last 7 weeks for me have been more on the faith-perfecting side. Seeing these boys get infection after infection, take one step forward and five steps back has been hard. I appreciate all the faith and prayers of others to help sustain us through these hard times.

You've got to be kidding. Meningitis bites.

Yeah. So, I am having a tough time with this -- we found out today that Andrew also now has meningitis, and some signs of NEC. I'm trying really hard not to get discouraged or be negative, but Emily and I are just kind of punch-drunk... is this really happening? Is this what their lives are going to be like? Life threatening events every few days with a day or two to stabilize in between until they finally just can't fight anymore? Well, no. It isn't. Something I've learned through this experience that I knew before but now I really KNOW, is that darkness and discouragement are temporary circumstances, and trials are temporary life experiences. Blessings are coming -- we just can't see them yet. That's what faith is for. Father is there and holds us close.

So, here are some more reasons to be grateful:

#1) Andrew was going to have surgery tomorrow to remove the EVD and put in a reservoir -- if they had detected the meningitis after that, he would have needed another surgery to remove the reservoir and put in another EVD -- so we are saved two useless surgeries.

#1) Andrew's meningitis is from a gram positive bacilli -- likely not quite as aggressive as Ethan's e. coli, and hopefully easier to kill. Plus they detected it right away and started him on antibiotics immediately -- lets kill those stinking bacteria!!

#1) Ethan is stable on the ventilator -- they haven't needed to increase his settings lately. I really hope he will be strong enough so they can start weaning him again soon.

#1) Ethan's blood cultures have been negative (no growth) for three days in a row now! The doctors are pretty sure he's killed his blood infections!

#1) Ethan's NEC hasn't gotten any worse, and we are hopeful that he will be able to recover from that with medication, and hopefully won't need any of his intestine removed. Much better than pneumatosis throughout.

Why are they all #1? Because each of these is something my boys need to survive. I am humbled at their miraculous strength. Thank you for your prayers and faith -- I believe you have allowed the Lord to give us blessings that He wants to give us, but are made conditional on our faith in His power to heal and save. I thank him for letting us have these two wonderful warriors for a little longer!

"We're not out of the woods yet, but..."

This is what the neonatalogist shared with us yesterday. I grilled the doctors on the infectious disease team, as well as our neonatologist (I have no idea how to spell that), and the ID doctors were optimistic that Ethan is going to make it! Our neonatalogist was guardedly optimistic as well. Its hard for them to tell us that he has good chances of survival, because as we've seen, things can change for the worse SO QUICKLY, yet it takes weeks for these little guys to improve to a point where their lives aren't threatened.

As far as the additional damage done to his brain and other organs, we will not know until he is stable enough for an MRI, which won't be for a few days at the soonest. The prognosis is bad, but right now we're focused on him just keeping fighting. And let's be honest, the prognosis hasn't really changed since we got to Primary's. So nothing new there, right? The poor doctors need to cover their bases though, and make sure we are informed.

Anyway, I wanted to share the wonderful news that Ethan turned the corner, and as long as he keeps his incredible strength up, he will survive the NEC and meningitis, and his blood infections have already started to clear up. Come on, little buddy, you can do it!!

Another complication ...

So I didn't realize that there were worse challenges than meningitis and blood infections. This morning they discovered the dreaded NEC (necrotizing enterocolitis) in Ethan -- not uncommon (I think incidence is about 10%), but unfortunately it is throughout his entire intestinal system. NEC occurs when blood does not profuse well enough in his intestines, leading to infection and necrosis of the tissue. Usually it is localized, I guess. In this case it is a more severe and immediate threat to his life than either the blood infection or meningitis, although it almost certainly was caused because his body has focused on fighting those other infections rather than digest food.

The good news is that he does not yet have a perforation (, and even though the tissue is sick and possibly dying, tests are showing that its most likely not yet dead (although the only way to be sure is to surgically open him and look). It is possible that it might resolve with his antibiotics. We likely will know within a couple days either way. Right now its a wait and see how the infections respond to the antibiotics. We should have some more information tomorrow.

I know you are all praying for my boys. Thank you. Andrew had a stable day today, thank goodness.

Well, we had some very good days, and they're both still fighting

I didn't know what to put as the title. We owe some updates to you all. In the NICU, no news is good news. So the fact that we haven't posted anything has meant that for a few days Emily and I were patiently watching Ethan and Andrew make some incremental improvements, and rejoicing in each day when absolutely NOTHING went wrong! It was wonderful!

Ethan had been doing wonderfully. Emily was again able to hold him -- she LOVES that, and feels like she could do it all day long if Ethan tolerated it. He definitely knows and loves his mama -- his vital statistics stabilize and improve for the first 30 minutes or so when she holds him. When he gets a little tired, he lets us know and we let him rest. Watching my wife embrace my son, and seeing the sweet expression on her face is my favorite life experience so far second only to marrying her in the first place. Ethan was almost on full feeds.

Andrew has been exceeding expectations fighting the aspergillus. They did a follow up MRI, and surprise -- no signs of infection, fungal or otherwise! They are doing a test to find out if it was ever in there in the first place. We are so proud of him. He is a warrior. He has tolerated his feedings very well also, and was up above 20 mL every 3 hours. Both Ethan and Andrew are over 3 pounds, and have done well with their weight gain.

So now for the bad news. The least bad (ironically, because it stinks) is that in Andrew's MRI they discovered new infarctions (strokes) and hemorrhages (more severe than strokes, but not exactly aneurisms) scattered throughout his brain tissue, in both hemispheres. We kind of expected that there was continued brain damage in addition to his original bilateral grade 4 IVH's because of the difference in his behavior before the acidic blood and after.

Yesterday we also learned that Ethan had a sudden onset of bacterial meningitis. We do not yet know the specific strain, but should find out within a day or two. This morning they discovered bacteria in his blood as well. He has deteriorated rapidly, as we would expect with such severe and sudden infections. We are heartbroken that he has such a significant set back. We are fasting today for him, and invite anyone who is able to join us. The neonatalogist yesterday was willing to give me his estimate of the risk of mortality for Ethan -- about 30%. Those are betting odds, but the new blood infection that will increase Ethan's risk. As far as prognosis goes, medically it is almost certain that he will not walk and talk, and could easily be deaf and blind. Unfortunately, he just does not have much healthy brain tissue left from his previous hemorrhages, so as bad as meningitis is for any preemie, the neonatologist is preparing us for the outcome which is medically likely.

So suddenly, as sick as Andrew is, Ethan is worse. Emily and I are doing well. We have the wonderful support of our family and friends. We wept together last night. I am grateful for the time we have shared with our children. We love them, and are so proud of their incredible and miraculous strength. We have seen Andrew knock on death's door many times, and open it a few times, and he has always come back. Ethan is a great fighter too, and we are hopeful that he will overcome these challenges. If it is his appointed hour, we will be grateful that Heavenly Father let us have him for so long, and grateful for the blessings that will be coming down the road. Our boys are beautiful children, and we are more grateful than words can describe that they are ours. How wonderful it is to be parents! What a wonderful blessing! I love my sons.

P.S. If any of you have crazy unruly teenagers that are giving you grief, please be grateful. :) I hope I can one day complain about my teenagers "borrowing" my car and staying out too late! How quickly life changes. Blessed be the name of the Lord.