A good surgery but not a great MRI

So today Ethan continues to do well. He is up to 14 or 15 mL every 3 hours, which is fantastic. Although he is very irritable with the CPAP on his nose, and definitely does not like it when people bug him, he is doing well overall. We'd like to see him make more progress on the CPAP and hopefully get off it sooner rather than later. But we're grateful he is doing as well as he is.

Today was both a good day and bad day with Andrew. The MRI came back, and it appears that there are no infections in his grey matter. Unfortunately there is something other than CSF and blood in his ventricles. The radiologist and infectious disease team suspect the aspergillus. We're going to do a culture and grow it out. If it is aspergillus, it is still possible that he can beat it back, but if it is in there then it is also in the blood and possibly has gotten into other organs. Obviously any infection in the brain is very bad, and aspergillus in particular is very hard for babies to beat. We are grateful that his surface infections have disappeared completely, though, and we don't know for sure what is going on in those ventricles.

His surgery went very well -- no problems whatsoever. We're glad that they'll be able to relieve some of the pressure from his head.

I admit its hard for me to focus on the positive when I'm so afraid for them. And then to remember how important it is that we are grateful for having them for so long. We've met other parents in the NICU who would give anything to have their little one for just one more day, and we've had both for over a month now. I guess its all a matter of perspective. My heart goes out to our friends with angel babies. I am astounded at their strength and faith.

Thank you to all who are helping with prayers, and kind words. Your support has been a bright ray of hope during the dark days, and a happy comfort during the good days. We have been fortunate over the weekend to have had quite a few good days in a row! We love these boys.

One Month Old

It seems really crazy to me that we've had these two sweet boys in our lives for a month now. At times it seems like it's been the longest month and other times I can't believe how fast it's gone by. I would have to say though, that it's been one of the hardest months of my life. But I am grateful for every moment we've had with them.

This month...

• We've made the drive to the hospital everyday to see them. We're so glad they're at Primary's, but we wish we lived closer than we do.
• Our medical vocabulary has increased exponentially. We've been thrown into the world of the NICU and had to become experts in preemies and neonates. 
• We've met some amazingly wonderful nurses, doctors and other medical professional. I am so grateful for modern technology and for the skills and education these professionals have. They have helped our boys so much. 
• I've probably said this before, but it's been hard to feel like their mom this past month. I feel so helpless at times. I've only held my Ethan once for a short time. There are even some days where they are too sensitive for me to even touch them and this is hard. I must continue to be patient and hope that I can start holding both of them soon.

As I was talking with the nurses last night here's their one month stats:

Andrew

Weight: 3 lbs 0 oz.

Height: 14.5 inches

Feeds: 7 ml every 3 hours

This week Andrew has been much more responsive, He likes to sleep and has a sweet smile on his face when his eyes are closed. When he is awake, he is very responsive to our voices and will look right at you. If he does nod off he'll open one eye just to make sure you're still there. He also likes to be snuggled up tight.
Andrew is fighting so hard with all of his infections. He's knocked almost all of them so far. He still has the pneumonia and the aspergillus. Although both are looking much better, again we have to be more patient and wait things out. His head has grown quite a bit the last week and a half and the neurosurgeon came and looked at him today. He looks like he's now a candidate for surgery as long as the MRI they took today comes back good (they're looking to make sure that they aspergillus has not spred into his brain.) If so, he'll have the same surgery Ethan did last week to put in a reservoir to help drain some fluid and relieve some pressure with the hydrocephalus. I pray that this nasty infection hasn't gotten to his brain and that he can quickly receive the surgery he needs.

Ethan

Weight: 2 lbs 12 oz.

Height: 14 inches

Feeds: 14 ml every 3 hours

This week he has been pretty feisty! He pulled out his breathing tube...again for the second time. (He likes to show you he's in charge)  If I had to pick which one was more active before they were born I would have picked Ethan....and he's sure living up to that. He'll kick and wiggle so much when he's getting his diaper changed and he doesn't like to be tucked in. He makes the nurses work extra hard when they're assigned to him.
Ethan is almost up to full feeds (for his weight) we are so excited about this! They are still keeping him on an minimal IV, just in case they need it for something other than nutrition.  But he's mostly getting all of his nutrition through my milk. They've been tapping his reservoir to drain the fluid of his brain once a day, but decided to change it to an every other day schedule for now because they think that doing it daily is too much pressure change for his little brain. This is a good thing, meaning that his body is trying to take care of it on it's own and they don't need to intervene so much. They'll check his brain ultrasound at the end of the week to double check.

Other than these few minor things...we've really had some pretty good stable days the past week. We are so grateful for each day that there is no bad news, because both Stephen and I feel like we've had our fair share. In the end I must say that these two have taught us so much about being parents this last month...we didn't think that we'd have to make so many difficult decisions. We hope we don't have to ever make those decisions again.

Another Reason to Celebrate

Other than all the stable days with our boys in the hospital, we had another reason to celebrate this last week. Stephen was able to complete and finish up with his MBA degree at BYU!!! The past two years have flown by so fast. I really can't believe we're at this point in our lives. Stephen is really excited to be working again and getting a paycheck, but I will have to say I'll miss being down here and apart of BYU.

It honestly has been such a huge blessing at how ALL of his professors and group members worked with him to help make accommodations the last 3 weeks, so he could graduate. They were amazing and most just said they would grade him for all the work he's put into up to when the boys were born. Other's gave him just one or two things to finish up...and even then his groups carried him completely. He really didn't have any finals to worry about with everything else on his plate and this was a huge relief (for both of us)  He's been able to focus on our family, help me recover and be at the hospital. I don't know else we could have made it.

We were keeping our fingers crossed that the boys would be calm and stable enough for us to attend graduation and they were. His family flew in town for the week. It was so great to see them and it was nice that they could see the boys while they were here. We're excited, anxious and a little nervous to move on to our new phase of life. Here's a few pictures we snapped of the exciting day!

REALLY Hoping for a good Sunday!

So we are approaching today with some hope and excitement and a little trepidation and fear. In the past month, three of the four Sundays we've had huge set-backs which have threatened Andrew's life. We've decided that today is going to be a much better Sunday than the others have been :).

I pretty much only have good news to report, which is SO nice, let me tell you! Since the 20th, Andrew continued to stabilize bit by bit and yesterday he didn't have a single brady (where his heart rate crashes suddenly). He is also becoming a little more responsive, and is able to open his eyes, look at us, and even hold Emily's hand. He has also been doing very well on this ventilator, and has been weaned, little by little. We don't have a time frame for taking him off the ventilator, but we are moving in the right direction. He is about 2 lbs 14 oz, and he has began feeding again, getting 1 mL of Emily's milk every 3 hours! We are REALLY excited about that. It also appears that his infections are slowly going away. I think that he is beating them! Even the aspergillus! If he stays on this track, he will make it. What a miracle that will be!

Ethan is also doing well. He hasn't had any more spells where his heart rate drops, although he does occaisionally get very irritable! Yesterday he knocked off his CPAP, and boy did he ever fuss and cry while the nurse tried to get it back on! I used "containment" to try to comfort him, and it worked once we also let him take the pacifier. I'll tell you what, though -- for only weighing 2 lbs 12 oz, that kid is STRONG! He kept getting his arms loose, even though I was using as firm a touch as I felt comfortable. I know that it isn't good for him to get so worked up, but can I just admit that it warms my heart to hear him cry and see him fuss with so much strength? I can't wait until the day when I actually find his crying frustrating or annoying, because that will mean that I get to hear him often :). Oh, how we hope, pray and ache for that day!

So it might be a little funny to be so explicit, but can I share a couple specific things for which we have an interest in your prayers? So far, the greatest miracle of all is that they are both alive and actually making incremental improvements again. We are praying that their hydrocephalus diminishes, that Andrew will be made whole from his infections, that they will be able to breathe without ventilators, and after that without assistance. One really big thing that is very threatening to little premies is that NEC, so we are also praying that they will tolerate their feedings and eventually that Emily's milk will supply all of their nutrition. We also pray that they will be able to see, hear, speak, and swallow. Heck, even though I know its not possible medically, I can't stop praying that Heavenly Father will heal their brains and that they will live "normal" lives, although I always make sure to pray for his will above all.

I believe that the reason that Andrew is still alive is because of everyone's prayers. Thank you for your gifts of faith and prayer. They are priceless!

Humbled...

I must say that I've been very humbled the past week or so...ever since the boys were transferred up to Primary Children's Hospital. It's been amazing to walk down the halls and see the children that are there and the strong parents that are along side of them. I've seen everything from children dealing with leukemia, prosthetic arms, burns, cancer....you name it. Just the other day as we were leaving I overheard a few dads in the elevator talking and one commented that "someday our lives will be back to 'normal'"  that really struck me and made me realize that the hearts of all the parents at this hospital ache for their children. Stephen commented today that life is very surreal and such a blur. It's hard to think WE are the ones dealing with all of this. Another reminder we had just yesterday, was when we met with a grandma who's granddaughter is in the NICU. This new little baby girl was going to pass away in the next day or two. My heart went out to them as she was only born about 3 days ago. Although this is definitely one of the hardest things I've ever done, it makes me reflect and think that we don't have it so bad. We have really been blessed. We've been able to spend almost a whole month with our boys and their little bodies are still trying to fight hard.

One of the reason's our boys were transferred up to Primary's last week, was because they were looking like they needed surgery and they needed some of the specialists up there.  We were so fortunate and were told yesterday afternoon that Ethan was able to be a candidate for surgery.  He needed a reservoir put in place to help with the hydrocephalus and drain the excess fluid off his brain. Everything was coordinated so fast and they were able to get him in with a neurosurgeon this morning. Stephen and I went up early so we could be there before he we into surgery. His poor little head has grown so much. It was up to 29 1/2 cm and had grown 6 cm in about a week.  You could tell that he was in a lot of pain as well. He was so sensitive that he wouldn't let you touch him and even talking was hard on him. We were able to walk down with him to the OR and talk to the doctors before they took him in. The whole procedure took only about 45 minutes. The doctor reported afterward, that Ethan did very well during the procedure and was very pleased with how everything went. We couldn't have asked for a better outcome. Stephen and I are very hopeful that this will help with the pressure he is feeling. We also are hoping that he'll continue to improve as they slowly drain the fluid off each day.

Andrew as well had a better day today. He still is very sick and very sensitive when they get in his bed to bug him. His heart rate drops (but not to zero like we saw on Sunday). But it still gets pretty low sometimes. I'm sure it's likely due to his hydrocephalus. His head is getting bigger, but isn't quite as bad as Ethan's. I'm sure he too is in so much pain with the pressure on his brain. Plus our little boy still has all these nasty infections. It's because of these infections...he's not a candidate for the same type of surgery at this time. The waiting game continues with him.  He did however respond to us today. He opened his eyes for quite a while and just looked at us. He held the nurses hand and didn't have the jerky movements we've seen the past week or so. These were big milestones in my book. Although I know that tomorrow can be a totally new story.

We took a few pictures today and thought we'd share. They're not the best because their room is dark and we can't use a flash...but here they are. They both are growing and weigh the same (2 lbs and 10oz) I even noticed a little "fat" on Ethan's bones today...if you can call it that.

Andrew looking at us today!

Andrew's head sure has grown

Ethan before surgery

Stephen watches as the nurses prep Ethan for Surgery

After surgery Ethan was very sleepy

Sundays seem to be our bad days

Our roller coaster continues. Today unfortunately we had another low. Pretty much at the top of my list of things I am really tired of seeing is my son's heart stopping. We were getting ready to leave, and were chatting with the nurse, and when I glanced at Andrew's monitor he had flat lined. The alarm is actually delayed a little bit from the wave form, but when I told the nurse that his pulse was zero, she jumped up, and as soon as she got there the alarms started going off. Andrew came back quickly, but had a very unsteady heart rate for a few minutes -- I had virtually no concept of time. It could have been 3 or 4 minutes or 10. Once they gave him a sedative, he stabilized. This likely indicates a seizure.

The truth is that neurologically Andrew is not doing well. Before last Sunday, when he heard my voice, he opened his eyes, and looked at me for a few long seconds. His eyes tracked my voice, and both moved together. He could grip my fingertip with his hand. He would move and respond to our touch. This week, sadly, he has been unresponsive to most of our interaction. His reflexes are almost non-existent, and when he does crack an eye open, he doesn't seem to be able to track us. It is very difficult to see him like this. His brain has just sustained too much injury. His infections seem to be improving, but new ones pop up. The aspergillus and pneumonia are the most concerning infections at the moment.

Ethan... well, he is doing better than Andrew, but our physician shared with us this week that while there is still a lot of hope that he will survive, his prognosis is not good. Her opinion is that he will be a severe care child, unable to take care of himself. That being said, there is still a slight possibility that he might be able to walk and talk and interact with us. Emily and I are clinging to that hope, but are willing to care for him for the rest of our lives if need be. Emily understands what that means a lot better than I do.

So people keep asking us how we are doing, and how our boys are doing. Its really hard for us to answer that question honestly and still be appropriate. Emily and I feel very much of the description in D&C 122:7. Truly, the "jaws of hell hath gaped open the mouth wide after [us]." What can we say? The past three weeks have been the sorest trial of our lives, and we have seen our share of trials like anyone else has on this earth.

That is the dark part. We all have our trials. And even though they are all different, no matter what trial we are facing, we need the Lord's help to get through it. None of us can make it without Father's mercy and grace. I believe that after Emily and I overcome this trial through our Savior's grace, we will be strengthened to a degree much beyond where we were before. When I watch my little boy suffer from pain, and I watch him stop breathing, or his heart rate crash; When they are beset with multiple infections, pneumonias, the most severe IVH's, or I see wounds on his chest from the fingernails of the nurse who did chest compressions to save his life, and in my heart I can still tell my Father how grateful I am to Him that he gave me my sons to have for these few short weeks, and that I trust in His will for what is best for us... well... How could I ever forsake Him? I love Him. He is my Father, and I know He loves me, and will act according to what is best for me, for my sweet wife, and my dear boys. I am not sure what tomorrow or tonight will bring, but I know that our God loveth his children (1 Ne 11:17). Truly, all is well when we cleave to our Savior in faith, regardless of the circumstances of our life.

I have found great comfort in some of the following scriptures:

D&C 121:1-2, 6 - 10
D&C 122:7-9
Mark 4:37-41
Mark 5:36
Mark 9:16-29
Matt 14:24-33
John 11:1 - 45, but especially 25 - 27, & 35
"An High Priest of Good Things to Come"

I thank my God for the covenants I've made in the temple.

Change Coming All At Once...

So as much as our other aspects of life have definitely been put on hold the past 24 days, we are excited that Stephen has finally finished up with his classes at BYU and is all set to graduate next week. We honestly can't believe we're at this point and are amazed at how fast the past 2 years have gone by. We are excited for the many new adventures that lay ahead and with the boys in the hospital we're trying to figure a few things out. We feel so blessed that he already has a job lined up and will start at the end of June. Another huge blessing is that we've already found somebody to rent our townhouse. We are so glad that these two huge things were taken care of way before the boys were born and we are so grateful not to have to worry about that with everything else that is going on. With that being said...we have a lot of change coming all at once.

We will be moving at the end of April...yes in just a few weeks... to live with my parents for a few months before Stephen starts his job this summer (this has always been part of the plan) But now, we just won't be able to go out there together. Oh yeah, a lot have been asking where we'll be going? Well about 2 days after the boys were born we finally found out where AT&T has placed us for our first year. We're heading to Chicago!!! We are really excited and we're kind of shocked that we got this location. Shocked because there were only 2 positions open there and being a new hire, we didn't think he'd get it. We're way excited because we'll be closer to Stephen's family. (He has a sister that will be about 2 hours away and his family in Michigan will only be about a 6 hours away).

Our plan for now.... is that he'll drive out the middle/end of June with our moving truck and get everything settled and start working.  I'll stay here with the boys until they can come home from the hospital. Then, we'll probably just play it by ear and I'll stay here until the boys are strong enough to make the move. We're guessing that might be July, August or even possibly September...but who knows. That seems so far away right now and it will definitely be a long few months to be apart.

We had another great victory yesterday!

This is a perfect example of our roller coaster, but I wanted to share another blessing and victory we had with Andrew -- on his echocardiogram (heart ultrasound) while it continues to show good functionality, his PDA has decreased in size, from very large to moderate!! Patent Ductus Arteriosus are valves in prenatal infants which bypass the lungs which usually close shortly after birth, but preemies' often stay open longer. This is a big deal, because if it doesn't close on its own, he will need heart surgery, and he can't have surgery when he has all of these infections. The PDA has been giving us a lot of secondary complications, so the fact that it is starting to close a little bit on its own is VERY encouraging. Hooray for Andrew!! You keep it up, little guy!

Another thing of relatively good news is that Ethan's infection is probably not too bad, as infections go -- it is a respiratory infection, but it hasn't developed into pneumonia. And hopefully since they jumped on it so promptly, it won't get much worse. Although all infections in preemies are life-threatening, it looks like this one is not as bad as most. They haven't identified the exact strain yet, but it is bacterial, not fungal -- so no aspergillus for him yet. He also continues to wean on the ventilator, and soon will be able to come off it, although with his respiratory infection we're going to have to be very careful.

So far nothing has grown out of either boys' lumbar punctures or blood cultures, so we are crossing our fingers that continues. It has only been 2 days out of 14, but any day that we don't get bad news in that department is a very good day :).

Thank you again for your prayers during our scares on Sunday, and transport on Tuesday. Emily and I can not express our gratitude enough for them. So many people are asking how they can help -- I hope you all know that I am completely honest and sincere when I say the very best and most important thing that anyone can do for us is remember our two little fighters in their prayers. The fact that Andrew has come so close to death's door twice, and opened it once, but still turns the corner and comes back to us is miraculous to me, and I feel due entirely to our friends' and families' faith and prayers. So thank you again.

A Very Long Week

We've had many more ups and downs...although this week it seems as though our boys have had many many downs...both Stephen and I feel that we're due for some positive things the next few days. I don't even know where to start other than both our boys are very very sick.

Andrew took quite a dive on Sunday and we weren't sure if he'd make it through the night. They had to put him back on the oscillating ventilator, more so because his little body is fighting so hard with infections that they don't want to over strain his lungs and they needed to regulate a lot of things with his blood work levels. We also found out that on top of the yeast, staph and Aspergillus infections, he now has pneumonia. So Sunday when we got a phone call from the hospital, we rushed up to be right by his side. We ended up spending the night at the hospital and we were very emotionally drained by Monday afternoon. He's still with us and has been stable for a couple days, but he is definitely a very sick little boy. Then on Tuesday, after more tests it looked like he was at high risk for hydrocephalus (water on the brain) and may possibly need surgery to relieve the pressure. Because of this his infections and this other high risk, they decided to transport him up to Primary Children's hospital so he could be closely monitored by the doctors and surgical team up there. This was the second time in the last few weeks that our doctors thought he was going to pass away, but once again he turned a corner, and is stable, albeit worse than before the setback. One other bit of good news which is a pretty big deal is that the aspergillus infection has not spread to other parts of his body that we can see. This fungal infection is so voracious that it can get all over the place within a day or two, but Andrew's little wounds have been healing. It will be over a month before we'll know if it has been beaten back or not, since it can pop up anywhere at any time, but his first week and a half with it he has definitely been keeping it at bay, and even winning some battles. He sure is fighting hard. There are so many things going wrong with him that we cherish these victories, even if the victory is only a lack of bad news :).

Ethan was doing so great, but just a few days ago has also started to become sicker. They first saw that his white blood cell count was really high (knowing that his body was trying to fight some sort of infections) so they stopped his feedings (out of fear of necrotizing enterocolitis, NEC) and have done numerous tests to figure out where and what is infected...so far nothing has come back positive. which is good news, but with all the cultures they are doing, we must wait at least a week or more to make sure. So as for now, we really don't know what or where he is infected, but his body is telling us that he is. He also is  showing signs for the hydrocephalus, so they were able to transport him up to Primary Children's as well. I'm glad that both our boys are at the same hospital to make it easier on us and I know that Primary's has amazing doctors. They really couldn't be in a better place right now and we are so grateful for a the wonderful care they are receiving.

A First for Mommy

I just have to laugh....I didn't realize that Stephen would be blogging as much as he is.  It's always been something that I've done, but lately he's much better at keeping things updated than I am. I guess it's a bit therapeutic for the both of us and a way for us to let everyone know what's happening,  without having to repeat ourselves a bunch of times. Again we are so grateful for the love and support we have been given and that is really what is keeping us going.
Last Friday, we made it through the first two weeks of being parents. These two weeks have seemed forever long... but we're making it day by day...literally. We had a huge milestone with Ethan on his two week birthday that has been such a treasure.  I hope that I can do this with my Andrew someday too. :)  I was able to hold him for the first time. It was such a surprise when they told us we could do this. I honestly thought that it would be a very long time before I'd be able to hold my babies in my arms.
Well, last Friday I got to hold Ethan for the first time. This was the best little birthday present I could have ever wished for. We did what they call "Kangaroo Care" where I held him skin to skin. I cherished this moment and could feel the strength of his little spirit fill my soul. I kept telling Stephen and the nurses that I could do this all day long. Of course they wouldn't let me hold him ALL day....but Ethan did let me hold him for about 45 minutes. During that time all of his vitals (breathing, oxygen level, heart rate, body temperature etc) were better than they had been all morning. Then he told us he was done and wanted to get back into his bed. I think I really needed this and it really energized my spirit and heart so much. It sometimes just kills me inside to see my boys laying there with so many wires, tubes, machines, and alarms going off. I feel very helpless as a mom, in what I can do for them. But this experience helped boost my spirits a bit.

On another note...
Here's a picture of one of their little diapers next to our  iphone. The funny part is that these diapers are too big for them and we have to fold them down.  Crazy I know!

Also, we are starting to learn a little bit about their personalities. Andrew, as sick as he is, has shown us what a sweet boy he is. He has opened his eyes when he hears his mom and dad and just looks at us. It truly melts my heart. He's also a very sensitive boy and any tweak the nurses try to make...he let's them know if he likes it or not. Sometimes I just have to smile at this. Ethan on the other hand is quite  the wiggle worm and any time they position him and get him all tucked in nice and tight. His arms and legs work their way out pretty quickly. Last night, he wiggled so much that his little hand pulled his feeding tube right out. Ethan also loves to make some funny faces. They make me laugh. Here's a few more pictures to enjoy!

My Monkey Boy! I just love this face!

Ethan Holding his Pacifier

First time I met my Ethan!

"holding" my sweetheart Andrew

First time I met my little Andrew!

Andrew taking a nap

Andrew had a rough day yesterday

I debated whether or not to update this right now, but decided it was the best way to communicate to our friends. Yesterday afternoon our Andrew started going downhill, such that the doctors discussed "options" with us (those options all have the same outcome). We are praying that the Lord's will be done in the Lord's time. We stayed at the hospital last night to be close in case it was his time, but he re-stabilized and "turned a corner" and today we are seeing incremental improvement again (although he is much sicker than he was yesterday morning before things started deteriorating). The wonderful staff at the NICU up there is helping us prepare with great kindness and sensitivity. We love those nurses and doctors!

We'll ask that no one call or text on the phone, but emails and written comments of your love and support are comforting and appreciated. We feel of your love for us, and we are grateful.

Ethan continues to be a rock-star, and is excelling in every way. Even medically things are very positive, with only a few big hurdles to overcome still.

Some great news for Ethan!

I am very excited to share some really really good news with you all -- Our Ethan is off of CPAP and NIPPV, and is pretty much breathing room air almost entirely on his own! He has a little nose canula which delivers air at 1 Liter (I think per minute), but is usually set at 21 - 24% oxygen, and usually at 21 - 22%!! This is GREAT news for him. He continues to tolerate his feedings well, and today they increased him to 5 ml/3hours. He is also officially over his birthweight, after losing about 15% the first week. So he really is doing fantastic in pretty much every way we can hope right now. In my opinion (very professional, I know) he is no longer in "critical" condition.

Andrew is doing very well also. His infections still haven't progressed, which at this point is all that we are hoping for. He also still hasn't had anything grow from the cultures of his lumbar puncture, which is huge as meningitis would be the end of the road for him. He is slowly weaning off the ventilator, although he still depends on it for most of his breathing.

We've seen them both open their eyes, and the past two days as soon as I come to see Andrew and start whispering to him, he opens his eyes wide and looks right at me -- I know that he can't see anything yet, but it is still special!

And Emily wants to share a sweet experience with our Ethan, so you'll probably get two posts in one day!

Infections are no fun

So I just wanted to post another update on here. The blog is kind of Emily's thing, and I think this might actually be my first official blog post. Heh.

So our saga continues with Andrew and Ethan. We have received so much support from our family and friends. My colleagues in the MBA program have bent over backwards to keep me on track, and to carry me in my group work, which has been a godsend so I can focus on my family.

Ethan is doing REALLY well. He continues to improve and strengthen. He doesn't really gain weight yet, but he's pretty much stopped losing weight. He has been exceeding our expectations on the ventilator -- he is now essentially breathing entirely on his own. All he needs is the CPAP (continuous positive air pressure) to keep his lungs inflated, a little puff of air every once in a while to remind him to breathe, and a little bit of supplemental oxygen (we breathe 21%, and he breathes anywhere from 21% to 33% depending on if he's being bothered or not).

Also, he is now eating some milk, which we're really excited about because he'll be getting those antibodies and good nutrition. They started him at 1 ml every 6 hours, but he has been tolerating it really well, so now its up to 2 ml every 3 hours. They're being careful with it to make sure it doesn't hurt his gastrointestinal system (getting NEC or Necrotizing Enterocolitis).

So, Ethan is really doing pretty much everything that we want him to. It has been such a relief to have so few problems with him!

Our Andrew seems to want to be the center of attention more than Ethan. He has been getting a little bit better on his ventilator, and recently was taken off the one that does all the breathing for him to one which only breathes for him when he doesn't breathe. Its about half and half right now. Our biggest worry about Andrew is that he has three different infections. Two are pretty common -- yeast and staph. The third is quite rare in premature infants -- aspergillus. Its a nasty fungus, and we're pretty worried about it. The good news is that even though it tends to spread very quickly, it hasn't spread to any of his internal organs -- even though he's had it for about 4 days or so. Another tough thing is that he once again has had some blood in his lungs, and they had to stop feeding him milk because his stomach wasn't doing well with it. We hope to start again tomorrow or Saturday. Once Andrew makes a little more progress on his ventilator, beats these infections, and starts eating well we'll be able to breathe a lot easier. For now its a wait and see situation -- the doctors are unable to give us any assurances other than there is still hope that everything will be ok.

I hope that I can post something this weekend that there isn't any blood in his lungs and that he has resumed his feedings. As long as the infections don't get worse, that will be a victory -- the treatment for the fungus lasts 3 - 6 weeks, so it will be a while before it disappears.

Thank you for your love and prayers. We need those prayers more than anything else!

Our First Week

We've made it through a very long week with many ups and downs.  Words really can't express how we're feeling and everything we've gone through, but I'll try to do what I can. We are humbled to know that so many are praying for us. We have really felt the strength and overwhelming power of those many prayers that have been said in our family's behalf and want to thank you. I really think that is what has gotten us through this week.

Each day our boys are with us is a huge blessing and we're enjoying every minute we can spend with them.  Being born at 26 1/2 weeks they have so many challenges ahead of them. Basically in a nutshell, the doctors have been focusing on their major organs (heart, brain & lungs) as these are not fully developed at this young age. They are in very critical condition and will be for the next few weeks. We've learned very quickly that being in the NICU is a roller coaster with many ups and downs every day, hour and minute. We'll take all the ups we can get. Here's some great little miracles we've seen this week. Both boys had very unstable blood pressure the first few days of life. They both are now doing great with that and are totally off all their blood pressure medicine and are able to stabilize this all on their own. Yesterday, Ethan was able to breathe on his own and now has a less extreme ventilator. Instead of continuous support with rapid breaths, this new ventilator will let him do most of the work and support his lungs when he forgets to breathe on his own or when he's not getting enough oxygen with the breaths he's taking. Andrew is not far behind him and we hope that in the next day or so he'll be on the same type of ventilator. Both boys have lost quite a bit of weight and today Andrew weighed 1 lb 14 oz and Ethan was 1 lb and 12 oz. Because they have become a bit more stable the last few days, they both got their first feeding of my milk. It's a very tiny amount (1 ml every 6 hours)...but we're excited and hopefully some of their weight will come back soon!!! Although, there are a lot of complications that can happen when they introduce this milk, we're now praying that their digestive track can handle this. We've been told that feeding will be another big hurdle we have ahead of us.

As for me, I'm still trying to recover and wishing that this process would go much faster than it is. I'm still trying to take it easy, which is hard for me. I'm one who 'keeping busy' keeps my mind off of things. But I have a wonderful husband who is helping me so much and family who is so close.

 Here are a few pictures of our little warriors!

Andrew just relaxing before having his "cares" done

Andrew's tiny feet

 Ethan as he is getting ready to transfer hospitals

Stephen holding Ethan's Hand for the first time

We have noticed a few things to tell these little boys apart. Andrew has dark black hair and Ethan has lighter brown hair (although it's hard to see in pictures)...we'll see how this changes over time. Also, Ethan's toes are farther apart with a little space between two of them on each foot, where Andrew's toes are much closer together.  It's fun to see how each different nurse that works with them notices and comments on their different little features.

Our Little Boys Are Here!!!

Much to our surprise our little boys decided to come 3 months early! They gave us no warning and we were totally not prepared. We're now wondering if this is going to be what their little personalities are like. They seem to sure like giving their parents a scare!!!

We'd like to introduce you to...

 Ethan Gerald Holden

March 25th, 2011 8:23a.m.

2 lbs 1 oz.  14 inches

Andrew Bruce Holden

March 25th, 2011 8:22 a.m.

2 lbs 7 oz.  14 inches

Here's the story:
During the night I woke up a few times with minor pain...thinking I just needed to go to the bathroom. After the 3rd time at 6:00am I laid in bed wondering what this pain really was. I woke Stephen up about 20 minutes later and we decided to call the doctor. He told us to go to the hospital. As we got dressed and left for the hospital the minor pain quickly intensified and became more frequent. I was just grateful we live only 5 minutes from the American Fork Hospital. When we check in, the nurses tried to do a few tests and quickly realized I was in full labor. They rushed to call the on-call doctor and when he came in to check me he said that I was fully dialated and he could feel a little hand. His guess was my cervix totally gave up with the weight of two babies and my body decided it was done.  There was no time to transfer me to a hospital with a level 3 NICU and they wheeled me into the OR for an emergancy C-section.

I will admit both Stephen and I were scared to death wondering if our babies would even live. So within an hour of arriving at the hospital. I heard each of them cry for a short second after they were born. This was a huge relief to me.  The operating room was full of people. Each baby had probably a team of 6 or 7 nurses and doctors around them. Shortly after they were born they rushed them off to get them ready to be transferred to a higher level NICU. I got to see them for a short minute or two before they left the hospital. Everything happened so fast. It really seemed like a dream. As happy as we are to have these two boys in our lives....this was not how I had envisioned everything. I know that the next few months as they are in the NICU I will be saying that a lot. But this is our life and we have a long road ahead of us. 
The crazy thing is as we look back upon the day or the days ahead. There really was no signs we missed. Just two days before we had seen the Fetal Medicine Doctor. (This is a doctor we'd started seeing in addition to my OBGYN who specializes in "high risk" pregnancies.) The Fetal Medicine doctors/nurses are experts in multiple births and other complications in pregnancy. Each time they do a very in-depth ultrasound and according to them...'everything looks great' and 'you couldn't be doing better' They had check the amniotic fluid amounts, length of my cervix. Everything really was 'just fine'. I guess these two had a little different plan in mind. :) We have really felt the Lord's hand in all that we've been through and know that he is constantly with us.

Anyways,  here's a picture we took before they were born. Who knew this would be the last one we'd take.

 March 13th, 2011 at 25 weeks