Photos, photos, photos

This has been such a busy week that we just couldn’t wait until the weekend to update.

This is Alex sleeping peacefully but wait…..isn’t something missing? yep, no more oxygen!!!!! They took him off of it a couple of days ago and he is doing wonderful!!!!!! One less tube covering up his sweet face, we love it!!!!

We have lots of company this week but we are sad for the reasons. Here’s Aunt Susan with Alex. We will miss her lots while she goes to work overseas but we plan to trade lots of pictures back and forth and wish her safe travels!!!!

Aunt Paula is enjoying first cuddle time with Alex. We will miss her lots as well as she leaves for College at Northern Arizona!!!

Nurse Donna showing Mommy how to bathe Nicholas for the first time. (we’ve been doing sponge baths only up until now). Nicholas didn’t seem so sure at first but he never cried and seemed to really like the warm water.

Alex was given a full bath a couple of days ago and mommy and daddy were sad to miss this. We are told that he loved it though and we look forward to giving him another bath soon!!!

He especially liked getting his back washed, ofcourse who doesn't?

Just a sweet picture, Alex sure loves his Daddy!!!

We FINALLY caught the boys awake at the very same time and took the opportunity to grab some photos!!!! (Alex is on left here, Nicholas on right)

Boys are wide awake!!!!! Nicholas is on the left, Alex on the right .

Borrowed Time

This week was our the boys original due date. Its so hard to believe but really the last 12 weeks that they have been here with us have been borrowed time. We would have never in a million years wished for quite this kind of time but for whatever reasons that they needed to be born so early, we are so grateful for every moment we’ve gotten to look at them, get to know them, hold them, love them three months sooner than we would have otherwise.

Now that we are past this date, the boys are now being referred to by their adjusted age (how many days old they are since their original birth date). I guess that means that they are officially newborns!!! And as such, they are doing pretty typical newborn things this week.

I am overjoyed to say that BOTH boys have been practicing taking feedings from a bottle this week. They started out at 5cc’s each feeding and now are trying 10-15cc’s each time, while the tube feedings give them the rest of the nourishment they need. The boys are figuring out how to eat and breathe at the same time which I’ll tell you has been no easy feat but nonetheless they are forging ahead. I think part of the issue might be that they are just not feeling hungry since they are continuously being fed by the tube. They can’t associate the bottle yet with relieving hunger, because they don’t yet feel hunger but luckily they still play along.

I have to admit that for some reason doing this bottle thing has made me come a little unglued. I know we are closer than ever to getting home, yet still feels so far away. After three months, I am just sooo ready to be done with hospital life and just bring my babies home that I want to just hurry this part up in the worst way and sprint to the finish line. I don’t want to just walk this road anymore, I want to fly. I don’t want to hear that it will just take time, just be patient. Unfortunately my patience has up and left me some time ago and has left no forwarding address.

No one has dared mention how long this part “usually” takes since every baby is so different. The best we can guess is maybe another month before discharge but thats just an unofficial estimate suggested by a couple of nurses after I’ve begged for them to throw a possible rope out there for me to hang onto. I am reminded that it could be more or less time depending on many factors, that basically its just too early to guess right now.  I know, I know what you’re thinking: we’ve done three months time already, what is another month? I can’t explain it, it seems the closer we get, the more impatient I become.

The biggest factor ofcourse is getting them to take full feedings from bottles only and to come off the feeding tubes. Full feedings based on their current weight would be about 45-55 cc’s each feeding (this amount will increase as they keep growing). The other criteria as we get closer to any sort of discharge plan includes taking full feedings under 30 minutes, not losing weight, and not having any drops in heart rate or oxygen level that they can’t self correct for seven days. If they have any “events” than the seven day clock starts over again.  Right now the boys consistently need their oxygen levels turned up at almost every feeding while they learn to eat so we are quite a ways from here. They have also been dropping their heart rates which they haven’t done in quite awhile but I’m told this could be from reflux. I’m not quite sure yet if this is something that they will end up outgrowing or if we need to look at different medicines.

They also both need to either A.) be off the oxygen completely or B.) have their eyes be become fully matured. Right now they both have eye disease (retinopathy- stage one). This is very common with preemies and basically results from being out in the world and all their energy going towards breathing and fighting infection, etc. instead of being in the womb the last trimester where their retinas would have had a chance to mature. The problem with using extra oxygen is that it interferes with this very process and has to be monitored closely in the hospital until the retinas have finally matured.  Again, because the boys required so much oxygen for a long length of time, no one is certain when their eyes will be fully matured so we just need again, to be patient. The boys get eye exams every 1-2 weeks to assess but there haven’t been any changes in the last month.

I know I should just live in the moment and be thankful for how far they’ve come, stop looking too far ahead because it serves little benefit and usually causes much more stress, but its so hard to stop myself. I just want to bring my babies home already (did I mention that?) Somehow I have convinced myself that if I keep looking  two steps ahead, I can figure out what things might be around the corner so I can prepare myself and maybe even problem solve everything before its even happened. The logical part of my brain says that life doesn’t work this way and it will always be the thing you didn’t even think of and then you wasted all this time and energy for nothing. The bigger part of me is just desperate to have some control over my life again. I mention this to a dear friend of mine, and she just hugs me and says “welcome to motherhood Holl”.

 

 

First bottle, and this is what 5cc’s looks like. Pace yourselves boys.

 

Nurse feeding Alex first bottle

Daddy feeding Nicholas the first time. (we have to feed him on his side due to reflux).

One of our favorite nurses always goes the extra mile. Its a hassle to organize all the wires and monitors to stretch so we can hold both boys at once, but this weekend was a brighter one because of her!!!!!

 

This one needs no caption, just priceless!!!!!!!!!

Alex on left, Nicholas on right.

Gratitude

I am taking some time this morning organizing pictures since the boys were first born and reflecting on this incredible journey. God continues to grace our family with gift after gift as we witness our sons growing bigger, stronger. We often find ourselves so consumed by the next challenge that one or both boys need to overcome in order to have them come home to us that some times we lose the big picture of how far they’ve already come.

It wasn’t that long ago that many questioned if we’d even have two babies to take home. As much hope and faith as Mark and I share, we were terrified of what the outcome might be for our tiny, frail sons and wouldn’t have even dared to dream of a homecoming because it seemed so far away, if at all.

I know we still have a ways to go and the days seem so very long when they stand between us and having our babies home but the tasks that are in front of us now are so easily attainable compared to the earlier challenges. It might take time for our boys to coordinate eating on their own and breathing at the same time, and having their still immature systems process food but in time, they will. Alex will have a new shunt that he needs, Nicholas will have his hernia repaired. Both boys will continue to grow and get stronger every day and there will be this incredible, beautiful, blissful day that we’ve dreamed about forever when we get to say good bye to the hospital and move on to an “ordinary” life at home with our boys where all of this will soon be just a piece of their story, not the whole one.

I wonder if the boys have any sense of the number of people who have been pulling for them, praying for them, sending love long even before they were born. I’m not even sure Mark and I do. Almost every day we learn of a friend or family member who has shared our story, or someone who has forwarded or simply stumbled upon our blog and find that there is one more family or church group that we’ve never met holding the boys in their prayers . There are no words to describe how deeply touched we are by this.

Speaking of gratitude, I’ve been meaning to include a HUGE thank you to all of our friends and family. They have been such an incredible support to us before, during and since the birth of our boys. I am embarrassed to think of how many thank you’s have still yet to be written all the way back to the incredible baby showers we had. We had three incredible showers generously given by our family and each of our work places. The timing was impeccable. Little did we know at the time, the last two showers were given just the weekend before I was admitted on bed rest that Monday. We had planned to have the showers early simply knowing that the boys were likely going to come early (no one guessing how early ofcourse) and Mark and I wanting to have time to work on the babies room before I got too big and uncomfortable.

It is rare that I find myself speechless but I have to say that the outpouring of support both before and after the boys arrival has left me that way on a number of occasions. All the notes, cards, phone calls, hand holding, meals, gift cards, rides to the hospital when I couldn’t drive (I just know I’m forgetting some things here) but they have all meant the world to us and we just couldn’t have gotten through this time half as well without all of you!!!!

I wish I had more photos from all of the showers but here are a couple…..

Cakes, cakes, and more cakes….Almost too pretty to eat (yeah right!). I can barely keep myself from the sugar on a regular day, most people knew to step back when I was pregnant if they were holding any type of food, especially something sweet :)

My new love of frogs...can't explain it, just think they're so cute.

My friend Tara is in this picture, also pregnant---little did we know we would both find ourselves on hospital bed rest at the same time!

Taken at 26 weeks pregnant, three days before ended up in the hospital….

Its too bad the boys didn’t get more things, we’ll just have to make do :)

At the time, the babies room hadn’t even been started so the stash overtook our dining room for awhile.

Week 39

Alex listening intently to Daddy.

oh really Daddy? You’ve told that one already.

Maybe crossing my eyes will get his attention…..

Nicholas thinking “Really? Your finally going to change my diaper?”

Yeah!!!!!

Umm…..anyone have an extra blanket? Think I might need at least one more….Nicholas

Alex….ummm a little help over here.

WEEK 39

This has been another amazing week!!!! Both boys continue to make significant gains.

After being stuck for weeks at the same oxygen rate, We were really excited when Nicholas went down to 3 liters last week. But he decided to really surprise us and make THREE more weans on his oxygen this week alone and is down to a whopping 1.5 liters. They say the last little bit is the hardest to come off of so progress will certainly slow from here but we are just thrilled with how far he’s come! Alex continues to do fabulous at .5 liters and has only been needing 22-24% oxygen. When he comes down to needing only 21% consistently, they will trial him off of oxygen completely!!!

You want more amazing? Ok. Alex is on “full” feeds. For his body weight that means 13 cc’s per hour continuous feeding around the clock with a tube (ND) that goes in his intestines. We are told the next step is offering him about 5cc’s from a bottle to see how he does. If he tolerates this okay, we can try that at each feeding time and slowly increase how much he gets from the bottle and decrease the amount that goes into his feeding tube. We are ecstatic! They warn us that this part can be extremely slow go. He hasn’t had anything in his stomach, since we’ve been feeding him directly into his intestine so he may have a hard time tolerating this at first. He also may tire very quickly doing this himself. They will have to put one more tube (NG) in his belly to check “residuals” as we do this to see how much he is able to process the feedings and will basically tell us how fast or slow to pace things. We are nervous, this is a pretty big deal (along with breathing, being able to eat is right up there). We think this will be started in the next couple of days and remain very hopeful. They tell us one concern for babies born as little as ours is that all of these weeks (actually almost three months now) that they have not been able to "normally feed" makes it actually harder for kids to get started. Many kids will have aversions to bottles because they have only associated their mouths mostly for tubes, frequent suctioning, medical tests, etc and not for eating. This is one of the reasons I guess that they have encouraged pacifiers, so its the one thing that they can hopefully make new associations for that are not unpleasant.

Nicholas has been at “full” feeds most of this week with the tube going into his stomach (NG). They check his residuals every four hours. Typically you are allowed up to one hours worth of residuals (think of it as leftovers—formula that has not been digested or passed through yet). That means he can have up to 13cc’s each check. He has been doing fairly well but his tummy is definitely having trouble processing all of this. Every day he has a couple of very large residuals (all the way up to 21cc’s) along with the “acceptable” amounts. In the past, large residuals meant stopping the feeding, getting an x-ray to make sure that there is not a blockage or something ominous going on, etc. Luckily they have gotten to know our boys by now and usually now someone just comes over to take a look at his belly, measure his girth and listen for bowel sounds and then its back at it.

Its a little unclear when Nicholas will be able to start trying from a bottle, since his feedings are already going into his stomach. It sounds like they want less extreme residuals before we attempt anything new so we will see. For both boys, another task before them is to start condensing their feeding times at some point. Right now they are both getting a little bit of feeding but its constant over 24 hours. This is supposed to help them tolerate feedings easier. Another step will be to give the same volume but over shorter periods of time so eventually to get them getting in their calories in a much smaller amount of time and getting them on an every three hour schedule (eventually). It seems like light years away at this point for them to be able to accomplish all of this. Throw a little reflux on top of this (Nicholas has been diagnosed with this and basically gags and chokes these days on his binky or even nothing at all so I’m extremely nervous about how he will manage taking a bottle) but I know we will eventually get there.

In other news, Alex had a recent kidney scan and his kidney reflux has went from a stage 4 to stage 1. This is wonderful news. He will continue to need monitoring with this and will remain on antibiotics as a preventative to urinary and bladder infections but this is GREAT news. He is no longer needing cathing (for now). We know that children with spina bifida often need cathing at some point but we are thankful that its one less thing we have to worry about for right now.

They have also been watching Alex’s head circumference. Its one indication of how well the temporary shunt is working. The pocket of fluid on the side of his head has grown shockingly large over the last week or so and neurosurgery has been over to assess several times. They will be back tomorrow to evaluate again but it looks like he will likely need a new shunt soon. We dread one more surgery but we’ve known all along its been coming so if it has to happen, lets just get on with it. We are hoping he is now big enough to have the VP shunt which will drain the excess fluid through a tube threaded into his belly, instead of the side of his head. We will wait to hear more this week.

It is a beautiful thing not to have had those stomach dropping falls and huge backward steps these last several weeks. Even if we are standing still, it is a very GOOD thing because that means no new obstacles have been put in the way. Mark and I fully appreciate these days, we do. Most of the time one or the other of us will remember to look back at where we started from to see just how far we’ve gotten. Which is a good thing because that's usually when the other one is feeling a little beaten up by this journey and thinking how much longer do we have to BE here, how much longer until we can just take them home?

Its been 78 days today, our lives in the NICU. The crazy place where you’ve been dropped to learn a whole new language, a crash course education no one ever wants to take, alarms that are constantly sounding signaling a baby’s oxygen level is too low, or a heart rate has dropped, or an equally loud alarm just stating a medication is done infusing or the continuous feeding tube needs more formula. A place where you sit in hard chairs peering over at your little ones, sometimes waiting hours before you can participate in their care, needing permission to pick up your own children to hold and comfort them. A place where on a regular basis you hear doctors and nurses giving parents news about a new diagnosis, a new worry, discussing another test, abnormal lab work and when you see them coming, you just pray that they are not coming to talk to you (then promptly feel terrible that these other parents, your new friends are having to go through this). A place where babies are watched so closely (which is a wonderful thing) but also means that even when things are going good, you are always told in detail what to look for when something might be a concern and ofcourse…..you are hyper vigilant and are always seeing these potential signs.

Mark and I have not missed one day out of the 78 days of our boys lives at the NICU, in addition to the two weeks I was in the hospital beforehand. We know the routines, the language, equipment, many of the doctors, nurses, even the parking attendants. We try to soak up everything we can in learning about our boys, their health issues, what they might need when they come home. We are getting to know their little personalities, and trying to have them get to know us as someone different than one of their nurses giving care. I think the emotional and physical fatigue is starting to catch up with us. For much of this journey, it was the adrenaline really helping to keep us going. I think as long as our babies are in the hospital, there will always be a little bit of adrenaline but hopefully not to the extent that we first experienced. I honestly don’t know how my husband is keeping up. My only job right now is to spend time with the boys, asking questions, advocating and trying to keep up the mundane tasks of home, bills, hospital paperwork, etc. He gets up early to get into work, works full days, and then rushes to the hospital every night to spend time with the boys and me, then comes home and tries to keep the energy up to continue his remodeling of the basement before he crashes and gets up the next day to do it all again. It is because of his hard work that I get to be with my boys all day and I am soooo thankful.

I know someday my days will be harder, when I can bring both my babies home. I met up with our newest and dearest friends from the NICU last week. They have been home with their babies for about a week and a half and everyone is doing good, exhausted with new babies at home, but good. I look at them like I’m looking through a picture window in my hopefully near future. I know I will never imagine the pure exhaustion of having to be up around the clock with a new baby (and two at that) until I have to do it myself but I still can not wait for the day. I am absolutely positive that I will freak out when one of them is crying and I can’t figure out why, and not have the expertise of a nurse sitting right there to reassure me that they are fine but I still can not wait. I am sure that I will miss the days where I could just leave the house or sleep whenever I wanted without a second thought but I will then have them with me in our home and I just can not wait for the day!!!! (I’m sure some day in the future I'll be frazzled, covered in spit up, when I’m handing off one of the boys to whomever just happens to come to the door just so I can go get a shower for the first time in days, someone will remind me of the days I couldn’t wait for this…..and I will smile).

Week 38

 

The grandparents snuggling….My mom’s got Alex and his bigger than life binky and Marks dad and Karen are cuddling with Nicholas.

 

  

The boys snoozing. Nicholas in the blue cap, Alex in the brown one giving us the thumbs up!!

Finally….the VERY beginnings of the nursery coming together, we have waited a LONGGGGGG time to make this room a babies room! Just can’t wait now to actually put our babes in it!!!!!

   

I can’t think of any other way to describe this past week other than its been a BIG one, and a GOOD one for both of our boys!!! With all honesty, we have never had an entire week that things were going smoothly with both boys at the same time. I’m not even sure we’ve had more than a couple of a days in a row yet until now. Usually things are going well with one but concerns are happening simultaneously with the other and we have often felt like a ping pong going back and forth between worrying about each one. (and this is really the most exercise either of us have been getting lately so naturally we are exhausted…..)

This week, both boys have continued to increase the amount in their tube feedings slowly. Nicholas is up to 11cc’s per hour and Alex is at 7. With all the stop and starts with the feeds, the boys have never made it this far before so we anxiously look for signs that their bodies are not tolerating it but so far so good and we are soooo happy. Nicholas has decided he does not want the feeding tube to go all the way to his intestines anymore so he proceeded to pull it out again, I think this was the second or third time this week. Apparently he must have guessed that eventually the doctors would get the message and stop trying to put it back. They now have decided to “try” him with a feeding tube directly in his stomach (which is a step forward and basically means his body will have to do a little more work at digesting the formula). Mommy and Daddy understand this is a big deal and its one step closer to eventually trying a little bottle feeding. For now Alex still has his feeding tube in his intestine but we have every confidence he too will forge ahead when he’s ready.

Both boys oxygen requirements have also gone down this week. Alex is down to just needing .5 liter of oxygen flow and requiring anywhere from 23-28% oxygen (you and I breathe “room air” which is 21% oxygen) so this is fabulous!!!! We can actually visualize Alex coming off all oxygen sometime in the near future and my heart just wants to have a party with every tube we get to say good bye to!

Nicholas is making incredible gains with his oxygen too. For the first time in several weeks he was able to go lower on his oxygen and manage it very well. He is now down to 3 liters of flow and on the lowest oxygen level we’ve ever seen him need as well. In the back of my mind, I have always thought that it would be likely Nicholas would have to come home on at least some oxygen for awhile because his lungs were so premature and damaged by the high settings on the ventilator for all of those weeks and I’ve been okay with this thought. If thats the worst thing to come from this lengthy hospitalization, we can certainly handle that with no problem but now I’m starting to wonder maybe that won’t be needed afterall……these little boys continue surprise us every single day!

The other big news is that both boys graduated from their incubators this weekend and now are in “big boy” cribs. This means that they are regulating their own body temperature—again I know seems like such a little thing but it really is another accomplishment made by these little miracles and we take none of it for granted.

The best part of the whole week really was for the first time ever to be able to put the boys next to eachother for a photo op. The simplest thing but in 10 and a half weeks we had not yet been able to do that and we were thrilled to see them for the first time next to eachother. As you can see from the picture, they were pretty unfazed by the whole event and slept through the entire time but mom and dad had enough enthusiasm for the four of us!!!

2 Months

The family hanging out on the boys first 4th of July.

Alex wide awake

Alex falling asleep and cuddling with Daddy!

Nicholas snoozing with Mommy

Nicholas in the 4th of July hat Daddy insisted they wear :P

Alex couldn’t escape having to wear his either but he slept through it…

Nicholas woke up and seriously questioned Daddy’s judgment :)

TWO MONTHS

We can not believe the boys are already two months old. In some ways it feels like just yesterday everything happened and in other ways, well it feels like a lifetime..

The boys have had a pretty good week overall but there are always those dips in the road. Nicholas is doing wonderful and will be finishing his course of antibiotics tomorrow from his Staph infection. They DID finally get a line in him last week without having to cut into him (huge sigh of relief) but the line unfortunately already had to come out. His body just doesn't like these lines and the spot gets red and puffy and they can't risk leaving it in in case of again...infection. He's acting like himself so I don't really think he has an infection but I do understand why the docs have to be so careful, we've already witnessed how quickly they can get sick so I'm fine erring on the side of caution. We are holding our breath to see if they will have to try to get another line in this week or if he could maybe go without and just have the regular IV in. The decision involves how much he is tolerating in his tube feedings versus how much he needs for IV nutrition. The more IV nutrition he needs, the more likely they'll have to do another PSC line. The good news is right now he is up to 7cc per hour on his feeds, which is almost half or his overall nutrition needs for the day. We've never gotten this far before so we are just crossing our fingers that he continues to tolerate this and we can keep going. He is a whopping four pounds, 6 ounces according to yesterdays weigh in, that might have been knocked back a bit after his equally whopping diaper, (yeah really it doesn't take much to alter the scales at this point) but we are thrilled regardless!

Alex will hopefully be turning the corner as well this week. He has been on and off again with his tube feedings. They are still concerned about his belly. Over the weekend his belly became distended again and he was even having more trouble with his oxygen levels. He turned blue in daddy's arms and that hasn't happened in a very long time so we knew something wasn't right. They checked his belly and found old blood and bile so the feeds were suspended again, cultures were gotten, and antibiotics started again in case of infection. His blood work was also off but they reassured us it could be just that he had just received several of his immunizations. He is acting more like himself again so we are hopeful that it was just a false alarm. They continue to look at his belly through xrays and if the next one this morning looks okay, they will re-start feedings. What pulls at my heartstrings is that he's actually acting hungry. He can't get enough of his binky, will even settle for my finger at times and if either falls out, he goes crazy in search of it. Its the sweetest and yet most heartbreaking thing to watch because I know when we are not there, no one can sit there and hold the paci for him and he's not strong enough yet to hold it in too long for himself. I'm praying tests will be all clear for him and they can start feeding him today! He's a little behind his brother right now and is at three pounds, 15 ounces. But I know when given the chance, he will catch up in no time.

Other BIG news was that Alex did not have a dislocated hip afterall. Actually the MRI showed that he had a fracture at the top of his femur bone. We were upset and puzzled by this wondering how he could have had a fracture. I met with the ortho doctor who explained the placement of the fracture is not consistent with any type of trauma, it was likely "congenital" happening in utero or during birth. The good news is that it has already healed and during his exam, Alex showed absolutely no distress, discomfort or pain. He said absolutely no treatment is necessary, and the way it has healed will not impede his function in the future. He said these little babies bodies are amazing, and I agree. Oh, and one more thing....while the ortho doc was there, he did a full assessment on Alex. He stated that given his muscle tone, he is actually displaying potential abilities closer to that of someone who has an L4 defect, not as high up as his actual defect which is L1. I asked him in plain English what did that mean. I will never forget his exact response and facial expression: "well, Mrs. Rissberger, most L4 children walk." I was stunned. I'm not sure how many times I asked him to repeat that sentiment in varying ways to make certain I wasn't misunderstanding. He might have left worrying about my intellect but I don't care.

Its hard for me to imagine that he can give us such optimistic news with Alex being so little still but he stated that he feels pretty confident that with a lot of therapy, and patience, Alex will get there. We are beyond words at this point. Neither Mark nor I want to be unrealistic or have expectations of our son that he could not possibly reach even with his best efforts. We have made peace much earlier in the pregnancy with the fact that Alex may never walk, that was not the most important factor to us. All we want is for Alex to have a full life and to be happy-- whether he does that from standing on his own two feet or from a fancy schmancy chair with wheels that we paint racing stripes on, (or whatever he wants on there that will make him smile). But the thought that maybe he will be able to stand at some point, transfer himself from place to place perhaps, walk even a couple of feet if he wants and then use the wheelchair for distances....well this would open up doors for him and simply fills our hearts with hope and joy.

I admit fully in having my faith tested at times while we have been on this journey, watching my babies struggle with every breath and fighting for life. In my heart, I know He is watching over them, and us. We have been praying a very long time for a family of our own and wondered why it didn't come easier, where was God? Then we got pregnant at last, and with TWINS and we thought this is what we've been waiting so long for, we couldn't have believed we had been so blessed. Ofcourse most of you know the rest of the story.... We learned about Alex's spina bifida during pregnancy and had our faith tested yet again. We worried so much how life would be for him, and how we would be as his parents. Then I grieved as the pregnancy had to come to such an abrupt ending and wondered how life could be so unfair, to our sons, to us. We have repeatedly questioned the doctors, ourselves, what was so flawed, what were the reasons that the boys couldn't be sustained in the womb. I felt like my body had failed them and yes, I wondered where was God in all of this. Now (again) I wonder and reflect and know that He was there, He is still here. Perhaps He knew that even though the boys would need to struggle coming so early, but it was the better chance for Alex to be born and to have his closure surgery before getting too big. (That is exactly the research going on right now, surgery in utero for babies with spina bifida but we were exempt because of having twins). Alex basically got to have this same treatment, just had to be delivered with his brother to do it. We'll never know if he would have had the same outcome if he had been born later, but either way I DO know that God is watching out for them.

Both of my sons have overcome so much just to be here. They keep fighting and surmounting all the obstacles in their way. Their strength and resilience humbles me and I am so honored that I was chosen to be their mom!

I will leave with a poem that someone forwarded to me and I was deeply touched by it, I'd love to think it was even a little true.

How Preemie Moms Are Chosen(Adapted from Erma Bombeck)

Did you ever wonder how the mothers of premature babies are chosen? Somehow, I visualize God hovering over Earth, selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger. "Beth Armstrong, son. Patron Saint, Matthew. Marjorie Forrest, daughter. Patron Saint, Celia. Carrie Rutledge, twins. Patron Saint ... give her Gerard. He's used to profanity." Finally, he passes a name to an angel and smiles. "Give her a preemie."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a premature baby a mother who knows no laughter? That would be cruel."
"But does she have the patience?" asks the angel.
"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I'm going to give her has a world of its own. She has to make it live in her world, and that's not going to be easy."
"But Lord, I don't think she even believes in you."
God smiles. "No matter, I can fix that. This one is perfect. She has just the right amount of selfishness."
The angel gasps, "Selfishness?! Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't know it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says 'mama' for the first time, she will be witness to a miracle and know it. I will permit her to see clearly the things I see – ignorance, cruelty, prejudice – and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."
"And what about her Patron Saint?" asks the angel, his pen poised in the air. God smiles.
"A mirror will suffice."