Saturday, November 29, 2008

Family Milk

Kinley: Mommy, I have to tell you something. The first time I saw you pumping milk for Crew, I didn't know it was for him. I thought it was for all of us and that we weren't going to be buying milk at the store anymore.

Changing Vent Settings

Crew is on new vent settings where he is given 25 base breaths no matter what, but receives no assistance on any other efforts he may make above the ventilator. This is an in-between stage that is designed to make him work a little harder, strengthen him a little more, and get a more accurate picture of what he may be capable of. After our previous experience transitioning to the c-pap, I'm hesitant to declare total success, but he is doing REALLY REALLY REALLY well and has done so for more than 18 hours. This seems to be a good and appropriate place for him right now to get his little lung workout but not get overly worn down in the process. He consistently breathes above the vent (which is a great thing) and hasn't appeared to "ride the vent" at all, knock on wood. They are weaning him further off his fentanyl, which should also contribute to better success in breathing. I'm really proud of him!

Friday, November 28, 2008

Angelina and Me

I recently had the experience of seeing my first identical twin baby boys being pushed in a stroller. I held my breath and allowed myself a few tears while Justin squeezed my hand a little harder as we passed them. I like to think that the next time won't take my breath away, but I can't know for sure.

I faced People Magazine this week. I saw it staring at me in a waiting room, daring me to pick it up and flip through it. I knew full well that it would take no time at all to find some reference or pictures of Brangelina and their new babies. Feeling in the mood to plow through another unavoidable "first", I picked it up. Sure enough, 25 seconds later I found them.

I'll confess that I was quite surprised that it didn't set my heart racing and the tears flowing. Little Max and Vivienne belong to them and are their blessing. All I could think about (besides how skinny Angie looked in her slinky black dress) was that no one else has my Kinley, or my Tanner, or my Dex, or my Crew. They are our blessings and they are tremendous.

So many things just don't seem important anymore. Things that seemed so all-consuming just a few weeks ago now seem so ridiculous and trivial. More than once, Justin and I have looked at each other and said with rolled eyes, "in 80 years, none of this will matter."

I don't know exactly what emotions wait for me further along the grieving process, but I like to write these things down in case bitterness and resentment start creeping in. For now, I don't begrudge anyone their healthy babies, their twins, their full-term pregnancies, or anything else. These last few weeks have shown us how kind, merciful, and mindful the Lord is of us as individuals and as a family. We have four fantastic children and are surrounded by more love and support in the form of family, friends, neighbors, and even strangers, than we have any right to even imagine. I love my life and I wouldn't trade it for all the world. Oh, come on, there are things I would change if I had half a chance (I'm not crazy, after all), but as a whole, I'll take it.

Happy Thanksgiving!

We spent the day at the hospital with Crew. Grandma and Grandpa B. met us there this morning; Justin spent most of his time taking Kinley and Tanner exploring (pictures later) some of their fun displays. Crew looks a lot better today than he did last night. He's been stable for most of the day, except for a drop in blood pressure that was corrected when they adjusted his cortisol levels. He didn't look so hammered and he even tried to peer at us a few times to let us know he was aware of us. When Crew is happy and stable, Mama is happy and stable. When Crew is unhappy and unstable, Mama is... well, Mama is really difficult to be around.

Thursday, November 27, 2008

Unpredictable Preemies

My hair is starting to get matted and tangled from from riding this roller coaster.

We had the previously reported morning phone call first thing yesterday morning that said he was doing amazing on the c-pap, flying like a world-class fighter pilot. 30 minutes later he started circling the drain and they intervened with the ventilator, albeit a different kind than he has previously had. No more Mr. Oscillator for him.

By the time we got up there in the afternoon he had stabilized after a rough day. He didn't look quite right to me and his numbers were all over the place. Nevertheless, they considered that relatively stable from where he had been all day. This is presumably from tiring out on the c-pap all night, the drama and trauma of reintubation, and then getting used to the ventilator again, but no one can be certain. Preemies just "do this" a lot. Reintubation on the ventilator can be rough on anyone, and he has now experienced 12 hours of life without it. I can imagine he's not very happy about having the tubes all the way back down into his lungs now that he knows something more comfortable. He has a bruise on his face that just made me groan in frustration and sympathy for him. He's just so fragile!

By the time I called at 10 pm last night he had deteriorated again and he has a phenomenal amount of mucus in his lungs. The doctors were hovering around him most of the day and evening "bewildered", which no mom wants to hear. Bewildered because his numbers were being completely contradictory. Crew has always been a little unpredictable that way. Not the first time in either hospital that we have heard that. Finally, they changed his ventilator again to something better suited to his age and size. So, after a fitful night of sleep, I called at the crack of dawn this morning and? AND?? He had a great night after switching over to the new ventilator. Fortunately that switch only involved the tubing outside of his bed, nothing disruptive to his already annoyed little body. He's stable and comfortable and peeking out of one eye when he's touched. Numbers have evened out and he's doing well.

We'll be spending a lot of time up at the hospital today. We're celebrating Thanksgiving tomorrow with Justin's family that will all be in town for the weekend. We went to the store last night to get ingredients for the stuffing I'm making. Note to self and anyone else stupid enough to try to shop for Thanksgiving Dinner ingredients the night before Thanksgiving. DON'T DO IT. I'm trying to decide if I can substitute raisins for dried cranberries... Hmmm... That's a question for tomorrow. Today I think we'll enjoy hospital turkey and stuffing from the cafeteria, HA HA HA HA HA!

Wednesday, November 26, 2008

And Back We Step

Well, we rejoiced too soon. The good news is that he made it more than 12 hours on the c-pap, which is actually quite an accomplishment. The bad news is that after our phone call this morning, he got really lazy and stopped making sufficient efforts. He started to deteriorate and tire out to the point where they had to intervene. The doctor just called and he has been reintubated on the ventilator. I'm disappointed, but, like I said yesterday, the step forward was so completely unexpected, that it's hard for me to be too upset that we didn't completely sail over this hurdle. Next week they'll probably try again.

C-Pap Night #1

I said yesterday that they were going to try Crew on the c-pap machine and hope that he could fly with it. He flew!! He's done really well with it since they extubated him yesterday from the ventilator. He's making good efforts to breathe on his own and he's been stable and happy. I can't wait to get a look at this new snout this afternoon! Go, Crew!! Also, we anticipate that they will resume his feedings sometime this weekend. We have lots to be thankful for this holiday!

Tuesday, November 25, 2008

Rock ON!! Vent FREE!!

Crew's doctor just called me to give me the update. (Yay!)

According to the echocardiogram, there were no holes in his heart (not a PFO or a PDA, for you nursey types). And the best news of the day?? They are moving him off the ventilator this afternoon and are going to try him on a c-pap machine. I almost wept with excitement! We didn't think that was coming so soon! Come on, Crew!! YOU CAN DO IT!!!!!

The "Infomation Fix"

I find myself unable to start my day until I can get a hold of Crew's nurse. This morning I had to wait through designated shift change (which always makes me crazy). I finally thought it was safe to call and the nurse was busy and I had to call back. Busy?? Busy?? That led me to speculate about all kinds of things. In the ensuing 15 minutes I had drawn all kinds of colorful (and horrible) pictures in my head as to why she was busy with Crew. I paced the floor like that same caged tiger from the other day. That whole "mama bear" thing sure is active these days.

And? All is well, Crew is good. He had a great night, very mellow, very comfortable, opening his eyes on occasion. I guess it's ok for her to be busy without a Crew Crisis. :)

Boring Medical Stuff
No word on the echocardiogram yet, so I hope to get a phone call today when the results are in. His incision has opened a little around his stoma, so they have removed the bag and are catching his belly-poo with gauze pads until Wound Control decides how to fix it. They are keeping an eye on a little white spot on his scrotum that they think is not a hernia, but blanching from his edema (swelling). His ventilator settings are good, spending a lot of time around 26%, and he's not swinging so wildly with his oxygenation. Yesterday his oxygenation was making me crazy while I was there, swinging between 63 and 100 (ideal between 83, I think, and 95), back and forth, which I have never seen before, chasing him with everchanging vent settings. They gave him his phenobarbital (which is also kind of relaxing, like a sedative) and that helped him mellow that out a little. While he was low on hematocrit, they decided in the morning not to give him a transfusion. By the afternoon his blood pressure was low enough to be troublesome, so they did end up giving him blood products and his pressure has been good ever since.

Boring Days Are Nice

Crew has done pretty well the last few days. He's had his ups and downs, but they are mostly his usual ups and down with the ventilator. It's so hard leaving him in the care of strangers, having to trust that they know what they are doing. I quite like all of the nurses that he has had at the Children's Hospital, but I don't feel like I have really open communication with the doctors who are calling the shots. He had a (repeat) echocardiogram today on his heart to search out a hole they suspect. They like to take any jab they can at the previous care he has received and it's getting old. Good news is that the neonatologist that I (finally) met today (for a few minutes) said that Crew is doing very well, as well as could possibly be expected with his age, surgery, etc.

Waiting for test results on Crew makes me a wreck. I get so impatient with the world and I watch the clock until I know the results should be in. It didn't help that the lactation specialist called me and accidentally woke me up from my way-too-short nap. Anyone in my path takes the blast of my agitation and I really need to remember to not be in public when I feel that way, lest I damage important relationships with my crazy woman routine.

Crew has beautiful eyes. He has opened them many times in the last two days and I do get the sense that he is trying to find me. He opens them and they kind of roll around, unfocused. He has hair, as you can see in this most recent picture. I can't wait until he is big, strong, and healthy enough to snuggle up with in a rocking chair. Then again, I need to make sure I'm in a good place when that happens, otherwise I might just stuff him under my shirt and run out the door as fast as I can.

It was all I could do to pull myself away from him to come home this afternoon. Then when I picked up my big kids at the neighbor's house, they didn't want to come home with me. You know, being with the neighbors is apparently akin to being at Disneyland. I'm usually very grateful and terribly relieved that Kiks and Tanner are being so flexible and resilient in the face of all this chaos, but today I just wanted to be a normal mom for an afternoon and it mostly blew up in my face.

This is temporary... this is temporary...

Saturday, November 22, 2008

Eyes are Open!

Crew has fully opened both of his eyes! I called the hospital tonight (again) and he opened both his eyes several times tonight for his nurse during his cares and bathtime. That also means he's a little less drugged with fentanyl than he has been since his surgery. I can't wait to see what my little guy looks like with open eyes!! Again, I wish he could be closer so that I could just run over during the night shift to participate with bathtime. I was only able to do it once before he was transported. Sigh...

PS -- did you know that in his transport pictures he is swaddled up in a burp cloth? He's so small! His weight tonight is 1040 grams (2 pounds, 4 ounces) but a lot of that is swelling and water. It had been coming down for several days before the surgery and then it went back up again (as expected with the surgery). We're waiting for it to come back down again. They still consider his "real weight" or "dry weight" to be about 700 grams (1 pound, almost 9 ounces, which is basically his birth weight). Apparently his head looks a lot less swollen tonight to his night shift nurse that has had him two nights in a row. I think he's absolutely perfect and adorable with or without the extra water, but I'm anxious for him to pee it off for his own comfort! His swollen little private parts make me cringe in sympathy and I'm not even a guy!

And Physically, Mama?

Some have asked how I am recovering physically so far. I think the Lord has been merciful to allow me a relatively quick recovery from the dramatic c-section. I'm not on any pain medicine anymore and I don't hurt most of the time. I'm still tired a lot, but I'm not sure if that's still part of the recovery from the c-section, the stress and anxiety of everything that has gone on in the last two weeks, or lack of sleep. My guess is probably a combination. When I get really tired, I tend to cry more often and don't cope as well, so sleep has become a real focus this week. Sleep makes a gigantic difference in my coping skills. It's not always possible, but at least now I'm trying to sleep instead of purposely avoiding it.

I still seem to have difficulty regulating my blood pressure. In high stress situations (like the transport) I have to fight to stay up on my feet. On Friday I made the mistake of locking my knees in defiance to deal with the situation that was unfolding, and ended up with a slightly dramatic light-headedness, similar to that which DeAnna and Justin have been dealing with occasionally for the last week when I've been standing too long. It's much improved from the first week, but apparently under the right conditions I'm still susceptible to a little faintness. Unfortunately, it's so embarassing when it happens in front of 12-15 hospital staff and half of Justin's family. But hey, free juice, right?

I've since been able to nervously laugh over that part of the experience. I just remember feeling a little foggy and instead of fighting it, it just seemed like a really nice place to check out for a minute. It was like my head was saying "Gooooooo to the light! Take a break! Find your happy place in unconsciousness!" Alas, Justin and DeAanna yanked me out of it before I could fully embrace it. Meanies... Then the doctors made DeAnna follow me around to make sure I didn't get shaky again. Poor DeAnna, who knows me best and knew that I needed (significant) space, had the most guilty look on her face as she followed her charge, Megan the pacing tiger, way too close for comfort.

Tanner is getting grumpy about me not being able to pick him up, and he's confused because sometimes I'll drag him onto my lap from just the right angle, but it's not the same as lifting him up onto the bed or carrying him around, and he's bewildered at the difference. He's spending a lot of time in my arms when I'm home, draped fully around me, even when Cars may be playing in another room. That's love and adoration. I think he misses me or something.

In Good Hands

The hospital staff at both hospitals have been so good to give me really valuable information about Crew's care and his needs and to keep me well informed on the realities and possibilities of preemie life. They have always made great efforts to answer my questions, down to the finest detail, spending many hours with me, and never seem impatient with my endless queries. It's a good thing that I'm kind of good with foreign languages because I'm learning a new one lately! The language of life in the NICU!

I appreciate that the nurses and doctors don't talk down to me, but at the same time will always very patiently backtrack and explain things in different ways if they lose me in the terminology and provide me with an abundance of resources and literature. They have been honest, optimistic, realistic, compassionate, and informative.

I'll miss the easy access to the neonatologists and nurse practioners at our local hospital, but I think I've almost figured out how to finagle and time things just right to have access to Crew's entire support team during rounds at the Children's Hospital. I just knew that at at our local hospital, I could, if I wanted, call or show up at 4 in the morning and get immediate access to one of the neonatologists personally overseeing Crew's care. Now, if I don't hit rounds quite right, I'm going to be relying just a little more on Crew's nurses to give me the skinny. But the nurses do seem competent and well informed and, like the nurses at we've come to know closer to home, they don't mind if I call a million times throughout the day and night to get updates or answers. I hope in time to feel as comfortable with the staff at the Children's Hospital as I did at in our original NICU and after our less dramatic visit yesterday, I don't totally hate the place.

Kinley Meet's Crew

Last Monday Kinley was able to visit Crew and meet him for the first time. It was invaluable in helping to put a real face on Crew and give her something concrete to focus her faithful little prayers on.

In the elevator...
Asking to come into the NICU lock down...
Signing herself in as a visitor for Crew...
Meeting her baby brother! She really loved it.
"He's so cute!"
An extra sanitization never hurt anyone.
Relaxing after a serenade. She wanted to sing the same song that we sang to Dex, "Families Can Be Together Forever". I know he must have recoognized her sweet little voice.
It was a really great experience. She's 5, so it took her only 10-15 minutes to have her fill. It might have been different if she had been able to hold him, but we're still kind of far away from that. Heck, mama's not even ready to let her touch him fully gloved up to her armpit.

She won't be able to see him again until he returns from the Children's Hospital. Their official RSV season started on the day of the twins' birth, so no siblings under 14 are allowed to visit under any circumstances. I hope this little peek is enough for her to hold onto for a while. I'm glad they are so cautious about illnesses. I was pressing them about their sanitizing procedures for door handles, chairs, drawers, counters, etc. Strangely, they didn't seem to think I was terribly neurotic. He's just so fragile, and will be for a really long time.

Lemons in Life

"When life hands you a lemon, say, 'Oh yeah, I like lemons! What else ya got?"

Henry Rollins

Saturday Morning

Crew had a good and stable night. The spinal tap came back negative for infection as well as prior infection; no elevated white blood cells to indicate the infection ever got inside, so they will discontinue one of the antibiotics and continue on with only the one for the rest of the infection that is in his blood. They keep needing to treat him with blood products for low hematocrit levels (anemia). He feels so far away! We're not making the drive today; I'm not sure I can stand it!

Friday, November 21, 2008

Friday Visit

Justin took the day off today and we spent the bulk of it with Crew. He had a great night and appears very stable. He has a blood infection (not entirely surprising, considering the bowel rupture) and he will be having a spinal tap (ewwww) to rule out meningitis. Sigh. He looked a lot better today, having recovered some from the general anesthesia; he looked so hammered last night, like he'd been through a war. He squirreled up his little forehead for me in his sleep this afternoon to let me know that he knew I was there. I just know he could smell milk wafting through the arm holes of the isolette. I got to sing to him today when the nurse was far enough away that I wasn't self conscious :) I just love this little guy so much.

Surgery Success

Crew has/had what is called necrotizing enterocolitis or NEC. It's a fairly common, very serious condition that happens in premature babies. The information we were told and the papers that we read together made us absolutely ill with worry. While many babies have to deal with it, the possibilities were somewhat chilling.

The prospects were: 1. a small, isolated perforation. 2. A small, diseased portion of his intestines that would have to be removed. 3. A large, diseased section of his intestines that would have to be removed, resulting in longterm nutritional absorption issues. 4. Rampant, untreatable bowel failure, in which case they would simply close him up and he would die.

There was a certain degree of urgency to performing the surgery as quickly as possible. Bowel gases are poisonous and lead to infection that can go to the blood stream and make babies extremely sick. Because they didn't pass our cell phone numbers around to quite the right people in time for anesthesia consent, they had to hold off until we arrived at the hospital. This didn't cause an alarming delay in his treatment, but it did allowed us a few last minutes to gaze at his perfect little face before they wheeled him into surgery, which was nice.

He sailed through the surgery without incident. It took approximately 2 hours. Of all the possibilities, he was the very best case scenario. He had one isolated perforation and they did not have to remove any of his intestines. They opened them up and brought them to the surface of his belly. He now has an ostomy bag and will be pooping out his belly until he is big enough for the second surgery, which will put him back together. Could be weeks, could be months, depending on a lot of factors. Having his intestines hanging out of his belly looks a little gruesome, I'm not going to lie, but I assume I'll get used to it. There remain possibilities of somewhat daunting complications now and later, so he has a long road ahead of him and we pray that his path is nice and boring, as uneventful as possible.

I can tell that the drive is going to get old very quickly, as it takes about an hour each way. We have a few darling friends that live about 20 minutes away from the hospital, whose offers of hospitality I'm sure I'll take advantage of at some point. Justin is going to have to survive his phobia about me driving into the city by myself. The Children's Hospital definitely has a bit of a different feel to the environment. Little bigger, little less personal, which is going to take some getting used to. We don't know if and when we'll be able to bring him down closer to home. It's a question we'll ask (again) a little further down the road of his recovery and development, but I've already been able to tell that it's a fairly insulting request! I know he's receiving phenomenal care where he is, but we have been so happy at our local hospital (ok, "happy" is probably a stretch, let's be honest; it's been the best it could be under the circumstances) and now he just feels so far away. We had already tentatively thought out a schedule that we thought would work well, and now everything is up in the air again.

Thank you so much for your love, faith and prayers on Crew's behalf. They are making a difference and we continue to pray for the very best during his recovery.

On a side note, he opened his beautiful right eye for the first time yesterday! Just as Justin and his brothers were about to give him a blessing, he opened that little peeper wide and looked right at Daddy. He is so darling!

Thursday, November 20, 2008


This morning Crew was transported to the Children's Hospital. He has a perforation somewhere in his bowels that is leaking toxic gases into his body. The expectation is that he'll have surgery sometime within the next 24-48 hours. They'll know more when they get in there and can see what exactly they are dealing with. It is anticipated that he will most likely need a second surgery, possibly in about 6 weeks' time. It is unknown how long he will be at Primary's right now. We hope to have him return to our hospital closer to home as soon as possible, preferably between the surgeries as well as after.

Wednesday, November 19, 2008

A Good Crew Day

Our little Crewton (get it? Like "crouton"?) had a good night and a good morning. He was calm and peaceful this morning, sleeping so well. He even insulted me by forcibly pulling his hand out of my fingers after half an hour of the mama squeeze. I couldn't have been more pleased to be so totally dissed.

He had another blood transfusion in the night to raise his hemoglobin, but we're getting used to that. His digestion has stopped being green (hurray!) but his bowels are a little irritated and distended so they've stopped feedings just for today, but will start up again tomorrow. His IV is in his head now (ugh) but he still looks so cute. His oxygen is hovering just below 30, which we're happy about. Little improvements for our little guy.

I was brave today and put on mascara. I figured it would make me think before I cried! Plus, I thought it might make a difference in how I behaved if I wasn't reminded of the insanity of my life every time I looked at my haggard face in the mirror!

I also drove my own van to the hospital. I've been off my Percocet for a few days and in general I am not so so so tired anymore that I think there is a chance of falling asleep at the wheel at any given moment. DeAnna was afraid that might be a "first" that needed to be gotten through and she thought it would be best if I wasn't alone the first time I did it. It was totally fine, but that was probably because I had been preparing all morning for it to be potentially weird. It's the ones that that come on suddenly, without any preparation, that are the most disturbing.

I got some actual sleep last night, which was extremely helpful and makes a big difference. I distract my mind at bedtime by reading "Sisterhood of the Traveling Pants", on loan from Natalie. Light, entertaining, not too serious. Then after lunch today I snuggled up with Kinley on the couch under a blanket and closed my eyes "for just a minute" during Fern Gully 2 and ended up with a 3 hour nap, complete with snoring, drool, and everything. Ahhhh... I'm powering through the afternoon nap hangover right now while DeAnna is at the park with the kids.

So today was a vast improvement over yesterday. They warned us at the start of this adventure that our emotions would be very closely tied to Crew's ups and downs. They could not have been more accurate.

Tuesday, November 18, 2008

Lobe is Open!

Justin and I went to the hospital tonight to spend time with Crew. He had an x-ray while we were there. His lung lobe has reopened and is looking really good. We're very grateful for a quick turn around this time. He was really unhappy tonight (ventilators will do that to you!) and they had to sedate him while I was there. His little silent cries are as cute as everything else he does, but they make me want to just reach in there and snatch him out to soothe him! They are going to redo his feeding tube tonight and see if the positioning of it has anything to do with the green gunk coming up; maybe the tube is down too far; it looked like it might be the case in the x-ray. Here's hoping!

On a side note: on the way out tonight, there was a man coming through the doors with four small children. They looked like they had to be two adorable sets of twins. Once they went through the doors, two women standing in the hallway laughed and said "poor mom". I cringed, but managed not to cry. Conveniently, I happen to be fresh out of tears tonight. Really, I'm going to need to get used to people saying the most ignorant things.

Pretty Little Peanut

Well, jeesh, that was depressing! I don't know about you, but I need a little pick-me-up (and a nap!) For your cooing pleasure, I present to you the latest picture of my favorite little peanut. Click to enlarge for maximum cuteness.

Riding the Roller Coaster

We went to visit our little Crew-ton this morning. He looked especially adorable. He was being a good little breather today, not very lazy at all. I was so proud of him. As far as the medical update goes, he has a mucus plug that has caused one of the lobes in his right lung to collapse. They've propped him on one side and will continue to suction out his lung until the extra secretions drain, hoping to avoid infection. The sooner we can get him off the ventilator, the better. He's been processing his milk so well for the last several days. They always pull up the remains from his stomach through the feeding tube before giving him another feeding. While I was there this morning they pulled up his breakfast and it was all green and unhealthy. "Very common, very common in babies this sick." Ugh, I get so tired of hearing that. Maybe it will resolve itself in a few days, maybe they'll have to discontinue feedings altogether for a while. So this morning was kind of a downer.

I had my first breakdown in the NICU this morning. Everything just kind of came together all at once. I was disappointed by the setbacks with Crew and concerned for him, I was really missing Dex, missing Kinley and Tanner who are always farmed out to hither and yon, and just feeling so tired from all that has gone on. Then I went to the pediatrician's office to pick up immunization records for Tanner so that he can visit the NICU. I felt the need to inform them of Crew's existence so that the doctor can follow his progress. That, of course, led to a discussion on his birth, his brother, etc. Apparently, while I am very comfortable talking about what happened to Dex with someone who already knows about him, I still can't cope very well with being the informant. Incidentally, our doctor happened to be at the hospital when the boys were born, seeing another patient. He knew the story, but didn't realize that they were our sons. Then I went to the mall for lunch to try to decompress. We walked in the door and some song was playing on the radio. I have no idea what the song was, but the chords were so melancholy that I completely lost it in the lobby. I sat in Winger's and just cried for a long time. Did you know that if you look pathetic enough, you can get free wings?

Some hours are just hard. As far as dealing with the loss of Dex, last week I was surrounded by the beauty and peace of some of the intimate, comforting moments of the whole experience. A week later I have to face the reality of him being gone and sometimes I just miss him too much. I think Justin said it best. Last Monday was a watershed moment for us. There was life before last Monday and there is life since last Monday.

I've found that the most difficult things are "the firsts". I have so many "firsts" to get through. Looking down for the first time and seeing my feet in the shower at the hospital was a particularly difficult moment. As much as I have looked forward to sleeping on my belly again, I haven't been able to do it yet because in some way it feels like a betrayal to the boys and to the process that was supposed to bring them here safely. I find myself not being able to rejoice about my rapid weight loss because I'm still supposed to be nice and plump through the New Year. I cried during the Amazing Race on Sunday because that was the last tv show we watched before we went to bed and our life changed. I cried the first time we said family prayer together after I came home from the hospital, as soon as I sat down in the rocking chair that was always reserved for my big, lumbering behind. So for those of you who seem to think that I'm so strong, I'm giving you a peek behind the curtains of what goes on sometimes.

I've discovered through necessity of dealing with some of the daily grind that things are easier after the first time. I just find that I'm not prepared for how difficult so many of the "firsts" are going to be.

Mothering Crew

He's a very easy little boy to love. Like I already said, he's my drug of choice. He's cheaper than a therapist (ok, that is so not true). He's much cuter anyway! One of the greatest blessings I have received is an ability to compartmentalize my feelings between the boys. If you would have described to me two weeks ago the nightmare that would be unfolding and then told me that I would ever be able to look at Crew without grieving for Dex, I would have told you that you were crazy.

I consider it a very significant and very tender mercy that my feelings for them are so disconnected from each other. My love, joy, grief, concern, peace, and everything else about them are very distinct and separate. I thank Heavenly Father every day for His mercy in this small blessing. To me it is in many ways further evidence of the individual nature of every spirit that comes to earth. I'm so relieved that I can rejoice for Crew without being overwhelmingly burdened by our loss of Dex every time I look at him. Because my goodness, I'm looking at him a lot! Dex and I still have our quiet moments together, separate from Crew's life.

On the other hand, they are identical twins. They share the same beautiful face. I'll never have to wonder "what would Dex look like now?" I can always look at Crew and know exactly how precious and handsome my Dex would be.

As a NICU mother, I'm very easily pleased and amused. When I was able to touch his little foot less than 24 hours after he was born, I was so excited! I've gotten to hold him on 2 very special occasions. Once they transferred him to a fancy bed when it became available. Once they transferred him to another fancy bed when the first one malfunctioned. Both times they waited for me so that I could stand there with a goofy smile on my face for 4-6 minutes of absolute heaven during the transfer. It felt like Christmas!

Other than that, I can stick my hands through the the holes in his bed and touch him when I want to. I touch him on his head and his left hand at the same time. It's our special "Mommy and Crew" touch, which he may already be associating with my visits. It's a delicate balance of spending time with him and allowing him to rest. He only heals and grows when he is in a deep deep sleep. I try to be there as close to his regular disruption time as possible. They dig around in his bed checking tubes, rotating his body, changing his diapers, etc. every 4 hours. If I hit it right by being there at 7, 3, or 11, I can help bug him. My big jobs are cleaning out his mouth with a little pink sponge, scraping the goop off his lip, and changing his diapers.

He's being fed tiny tiny amounts of breast milk. Yes, you read that right. Mama is making milk for this little guy. After our profoundly dismal experiences with Kinley and Tanner, I had no intention whatsoever of nursing these twins. I always knew, however, that I would have to revisit the question if they were born early. So, here we are. And believe it or not, I am actually producing milk. We're having better success than ever before and we'll keep it up as long as it lasts. I'm no jersey cow, but every drop is a bit of gold for his fragile little body. And he sure doesn't eat much right now anyway. He's getting 1 cc every 3 hours. He's digesting it perfectly and I'm so pleased to be able to do something for him. PS, no pumping or nursing advice please. This means you.

Monday, November 17, 2008

Introducing Baby Crew!

There is so much to write that I honestly just don't even know where to begin. So much has happened with our little Crew in just the 7 days that he has been with us. I guess I'll just start at the beginning.

As you already know, he was born without a heartbeat, but I found out recently that he had some very weak heart tonal sounds. He needed a very aggressive resuscitation, but they were able to bring him around. He was quite difficult to stabilize and the first two days were very very touch and go. During the first 24 hours, we honestly did not believe that he would make it and we prepared ourselves to say goodbye to another son. In many ways it seemed cruel to keep him here without his brother, kinder to allow them to be together. The doctors were very gloomy and didn't give us much hope. We felt peace in knowing that he was in the Lord's hands and we knew that we could say goodbye if we had to. We had already survived that scenario once and we just didn't want him to suffer. It seemed to us that the boys may be destined to be together in death as they had been in life.

We spent the day with Dex in my hospital room. While family members, including Justin, went to the NICU throughout the day, it wasn't until the evening that I was strong enough to be wheeled down to the NICU and stand by the isolette to see this little peanut for myself. By the evening we were starting to hear little bits of good news. They had had to make dozens of interventions to stabilize him, but he was actually responding to those interventions better than they had anticipated. We were absolutely elated and so filled with hope and expectations.

By the next morning we started to get the feel of that special "NICU roller coaster" we had been warned about. We woke up with news that his brain scans were showing signs of seizure activity, his kidneys were not functioning at all, his heart was not contracting properly, and a few other disturbing updates that had us again despairing and preparing for the worst. All we can do is pray that we can know, understand, and accept the Lord's will for Crew. We don't know whether that will mean that we have to lose him like we lost his brother, or whether he'll stay here and be our miracle baby and be perfectly healthy in time, or he'll stay here and have severe disabilities, or something inbetween. One day at a time. We just enjoy every minute we can with him. I love being with him. He's my drug of choice. Being near him calms my anxiety and thrills me to pieces.

Slowly and surely things have been gradually improving since last week. I can't even believe the strides that this little guy is making:

He is completely off his blood pressure medication, his kidneys have started to function, his urinary catheter has been removed and he's peeing like a race horse, he's pooping up a storm (you should have seen the diaper I changed today. Very exciting, very gross). He is off the medicine that makes his heart contract properly, they have started feeding him breast milk through a tube and he's digesting it perfectly. They very rarely have to sedate him for agitation, especially now that he has enough tubes removed and he's stable enough to swaddle. Our babies love to be swaddled. His bilirubin count is so low that they have completely discontinued the bilirubin lights. He's on phenobarbital for the seizure activity and hasn't had any more.

He's still very swollen with fluids from the trauma of his birth and all the things his body is trying to figure out. It's a very delicate balance to keep him stabilized, but all things considered, he's doing really well. Even with the swelling, he has lost 3 ounces. He now weighs 1 pound 5 ounces. He's not breathing as well as he was several days ago and they have had to increase his oxygen. We don't love that, but it's part of the NICU roller coaster and we've been so spoiled this week with so much good news that we can't be too disappointed by a tiny setback.

He still hasn't fully opened his wee little kitten eyes, but he sure does try when I'm there. He isn't such a lazy breather when I'm with him and his blood pressure is much better when I'm with him as well. He clearly knows who his mama is and responds in ways that make my heart melt.

The prayer and faith of our family and friends is making such a difference in his success. We remain cautiously, guardedly optimistic about his future. He has a very long road ahead of him and we still have a lot of concerns about his short term and long term health. The doctors always say "there is no reason not to be realistic. And there is no reason not to be optimistic. But it's all up to Crew."

Without further ado, here is our Crew J. Grandma B. calls him "Crew Under Construction", which totally fits. We think he's a wee little darling.

Getting his first kiss from mama on the head.

Sunday, November 16, 2008

Meeting Dex

After they wheeled me through NICU to see Crew, Justin and I talked about Dex while I continued to come further out of the anesthesia. He had already been holding him for several hours. I was afraid that they wouldn't let me see him. When he assured me that they would let me see him, I was afraid that I wouldn't want to see him! Justin, my rock, promised me that I would want to see him and that it wouldn't frighten me.

There is a special staff of grieving specialists at the hospital. They spent the day making sure that we had the memories we would need and appreciate. They took pictures of him, some by himself, some with us, and, to my surprise and delight, some with his brother. I didn't know about the brother pictures until the next day. They also made molds of his hands and feet and little stamped papers, so that we would always remember how tiny his sweet little body was.

Meeting Dex in person was one of the most beautiful experiences of my life. I felt him the moment his body entered the room and holding him in my arms the first time was like a healing salve for my broken heart. I'll never be able to explain it perfectly, but the closest I can come is to say that I just felt an overwhelming sense of peace and hope. He was stunningly beautiful. His spirit stayed with us throughout the day, giving us comfort and letting us know without question that he loved us, he knew us, he claimed us as his parents, and that things had turned out exactly as they were supposed to. In those hours, both Justin and I came to know that we had been privileged to take part in the life plan of a perfect spirit. In those moments, the veil seemed particularly thin and mortal life seemed especially brief.

Justin's family spent most of Monday with us. His brothers arrived before the sun came up to help Justin give both Crew and me priesthood blessings. His parents arrived shortly thereafter. Sisters-in-law came throughout the day as well to offer their support. I'll always be grateful for the kindness, love, and tenderness they showed to Dex that day. I was afraid that the discoloration of his lifeless little body might frighten them, but they were all so anxious to show their love for him and to feel what he had to offer. I wasn't the only one who felt that holding him was healing balm, a connection to a Heavenly Father that understood our pain. Whenever he was put back in my arms, I felt calmer, more peaceful, reassured that he was mine forever. We spent the entire day with him and Monday night we were able to peacefully say goodbye.

I wish you could have met him. He didn't belong here. As much as we knew we would miss him, letting him go seemed so right. He is strong and wise. He is playful and kind. Had he lived, I dare say we would have considered him an "old soul." He's had a busy week, comforting us all in our moments of weakness, me in the hospital, Justin as he carried on with the very difficult duties and tasks required if him this week, cheering Crew on every other minute.

We spent some more precious time with his body and his spirit on Friday, preparing him for his burial. While I held him, it didn't feel right at all to coo at him and talk to him with babytalk. While he felt very much "my baby", his spirit felt so noble, so grand, so powerful, so wise, so perfect, and so understanding. I felt, and continue to feel, very honored to have been able to give him a body, because that was clearly all he needed.

It's been such a blessing to come to know my wild and playful little Dex these last few months. I miss him immensely and if it sounds like I haven't cried over his loss, that is a gross misrepresentation. Our grief is tempered by our joy at knowing that he is safely with the Lord, but I will continue to miss him every day. Holding him on Monday and Friday helped me find the perspective that I needed to go on, but I'll confess that I have to work really hard to maintain that perspective and peace. I never know what's going to shatter the comfort. It's usually dumb, trivial, unimportant earthly things that disrupt my connection. Sometimes I'll be laughing over something and then the tears will unexpectedly erupt in a moment of unanticipated grief.

My precious Dex. Ahhhh... I will miss him. I'm so glad he's going to be up there pulling for us, cheering us along. It makes me so much more determined to make sure that we are a family worthy of eternal life together. I don't want to lose the feelings I've had this week. I don't want to forget what I've learned and what I've felt.

From the moment we knew the twins were coming to our family, we felt the hand of the Lord in the process. We've felt time and time again that things were progressing as they were meant to and we have felt the love of the Lord through this difficult process since the summer. It's impossible for us at this point to throw up our hands and cry "now you have forsaken us!" That just doesn't make any sense to us, and it doesn't feel right or true. While we wouldn't have chosen this challenge, we do understand that there is purpose behind it. We knew it would be challenging to have these twins. We knew it would require a horrendous pregnancy and then the exciting task of raising two rambuctious boys. That's what we had been preparing for. We just didn't know that wasn't exactly the trial waiting for us.

This is my "Dex Song". I know he loves me as his mother. I know he and I will both cherish our relationship through the ages and I do feel that he misses me. I know he'll be there at the front of the line to greet me when the time is right. I know he'll come for me someday and I'll continue to wait for him. In the mean time, I know he'll return to me on occasion to fill the space in my aching heart when I miss him too much.

Saturday, November 15, 2008

What Happened Monday Morning?

As you already know, my water broke around 2:30 in the morning. I was sleeping on the couch when it happened and immediately called to Justin. He raced down the stairs to me and we got ready to go to the hospital. We called a neighbor to come be with the kids, though I had difficulty dialing her phone number correctly. I kept combining her number with another friend's and getting that horrible wrong number beeping signal. I was finally able to get the numbers right and get through to Lisa. She came over right away, her husband on her heels, prepared to help Justin give me a priesthood blessing.

We raced to the hospital wrapped up in useless bathtowels, ignoring several red lights on the way. We called the hospital before we got there, though I should have been more clear that my water had broken, not just broken, if you know what I mean. They were waiting for us, but clearly didn't realize that I was going to be bringing my own swimming pool.

They took us immediately to a labor and delivery room to get things under control. I was only dilated to a 1 and 50% effaced, which was great news. We all believed that the worst of my problems was a massive rupture in the sacs, which could be dealt with. They initially had difficulty finding the heartbeats of the babies, but considering their gestational age and the fact that they are twins, that wasn't entirely surprising or frightening. The focus was to get the contractions, which were now coming in full force, to diminish before they did any more damage. They loaded me with antibiotics, steroids for their little lungs in case they were unable to keep them inside, medicine for the pain, pills for the contractions.

We began to be very hopeful. I knew I wasn't going to be able to leave the hospital until the babies were born, but there was a good chance that they were going to be able to keep the babies in for many more weeks to come if they could just get labor stopped. Once they had done all they could to evaluate and stop the progress of my labor, they became more focused on assessing the condition of the babies.

I could watch the growing concern on their faces as they continued to be unable to find one of the heartbeats. The concern kicked up about 12 notches when they finally did find one. One of the nurses asked in trepidation "is that mom's heartbeat?" to which another responded, "no, Mom's is 113." Baby heartbeats should be between 120 and 140. The one that they found was 60. They called the charge nurse, as my doctor had not yet arrived, and she started digging around with the doppler to verify the the heartrate. As soon as she verified the 60, all hell broke loose in labor and delivery.

From the time they confirmed the 6o heartbeat to the time the babies were out of my stomach, it took less than 4 minutes. They wheeled me across the hall into the operating room for an emergency c-section, by which time my body was going into full shock. There was no time for an epidural so they dropped me with a general anesthetic. It took them 1 minute to get the babies out, by which time my doctor had arrived. Both babies were born without heartbeats. It is believed that Dex had been gone for some time, probably hours, and they were unable to revive him.

Dex was 2 pounds 1 oz, 14 inches long. Crew was born at 1 pound 8 ounces, 12 and a half inches long.

I was unconscious for a while during all of this. While they were trying to put me back together, Justin spent his time in the NICU holding Dex, watching helplessly as they fought to stabilize Crew just a few feet away from him. Justin made sure that he was with me when I came out of the anesthesia so that he could be the one to tell me that we had lost Dex. It was a helpless feeling and I feel so much sorrow that he had to be strong enough to deliver that news to me. Neither of us could believe that we had come so far just to have such a tragic outcome.

They wheeled me through the NICU on my bed so that I could see Crew. All I could see were his wee little feet and it was so frustrating. The doctor was very reluctant to offer hope for his future. He had had a very traumatic start in the world and progress looked very sketchy. We knew we had already lost Dex and began to believe that we would lose Crew that same day.

Coming next:
Meeting Dex and Hope for Crew

What Happened? The Medical Version

I need to take some time to write down my thoughts and memories of this last week. I know it will be essential to my healing, but it's going to take some time to go through the many events that have happened recently.

Up first, what happened?

Some of this is speculation pieced together by the neonatologists, my obstetrician, and the placental pathologist. Almost 3 weeks ago I had one of my regular ultrasounds. At that time both of the babies were doing extremely well. There was always some question about whether they shared a placenta or if it was two placentas that had merged to look like one. Since they were growing so well, we didn't worry very much at the answer. They were exactly the same size and they were swimming safely in their own amniotic sacs. At some point shortly after that appointment many things began to systematically go wrong, one right after the other.

Twin to Twin Transfusion Sydrome
My babies developed what is called "Twin to Twin Transfusion Syndrome". This is a condition that can occur with identical twins in utero, where one twin begins to have access to most, if not all, of the nutrients through the shared placenta. (Our twins have been confirmed identical twins with one shared placenta, by the way.) This syndrome is caused by various abnormalities in the placenta that will redirect arteries and veins from where they should be going. Normally this is something that happens very gradually and can be monitored over time to determine severity and possible intervention. In our case, it came on very suddenly and was an extremely acute case that progressed very quickly. There is evidence of a lot of activity that took place in the placenta recently and in the past, many mini-strokes throughout the placenta that disrupted proper function. By the time the twins were born, Dex (the recipient twin in this situation) was quite a bit larger than Crew. TTTS is very dangerous for both twins because one is deprived of nutrients and the other is overloaded with fluids, blood, and other things that are damaging in unbalanced quantities.

Updated: I have since learned that my OB had noticed at the last ultrasound that Dex was starting to become a little larger, but didn't want to alarm us. He was going to evaluate at the next ultrasound and see if it was a trend that needed a perinatal evaluation. Unfortunately, as such a dramatic and acute case of TTTS, it was all over two and a half weeks later. Do I wish he had told us? Absolutely. Would we have had a different outcome? I'm not sure, especially with how unbelievably quickly everything happened. These are some of the "what ifs" that we find to be unhelpful since we can't turn back time.

Membrane Rupture and Tangled Cords
TTTS was only the first of a few problems. While they had previously been swimming safely in their own separate sacs, sometime recently there was enough erosion near the placenta where both of the umbilical cords were located that the umbilical cords were able to start moving back and forth between the sacs. Earlier in the week we believed that the twins had been swimming together for some time, but that no longer looks like the case. It appears now that there was just enough erosion between the sacs to allow access for the umbilical cords to travel back and forth between the sacs, at times tangling on each other, sometimes tangling on themselves. The delivery staff said that they were more tangled than anything they had seen in some time, mostly on each other.

Placental Abruption
Many of you have probably heard of "placental abruption", when the placenta begins to tear away from the uterus. This is believed to be the official cause of all the drama. Incidentally, this also has nothing to do with either of the previously described problems. The placental pathologist found evidence of many "infarctions", which can be compared to "strokes" within the placenta, that caused it to start breaking down and tearing away. Some serious, some mild, some very recent, some within the last few weeks. We'll never know exactly when or why these happened and we try not to speculate very specifically about this question since it drives down the unhelpful "what could we have done" avenue. There is sometimes severe abdominal pain associated with placental abruption, but in my case there was not anything out of the ordinary beyond what has been described in previous posts. It was occuring relatively gradually, not the result of a car accident or other sudden bodily trauma.

Water Breaking
At 2:30 in the morning last Sunday night my water broke, very obviously. At the time, we thought that was the main problem. When we arrived at the hospital, we assumed that the worst of our concerns was a massive rupture in the water sacs. Again, it had nothing to do with any of the previously described events. But had my water not broken, we never would have gone to the hospital and we would have lost Crew within hours. Our greatest nightmare, waking up with my water broken at 28 weeks, turned out to be the best thing that could have happened under the circumstances.

Under Age
Because of the TTTS and other problems, the babies are delayed in our expectation of their development. Based upon the fact that their eyes were still fused shut at the time of their birth and a few other physical indications, they measured closer to 26 weeks, not 28. This is not surprising, considering what they have been through in the womb.

As you can see, there were many factors that led to the drama surrounding the arrival of our sons, and none of them had anything to do with one another. We feel there was nothing that could have made the outcome any better and are grateful that my water broke when it did, to give Crew a fighting chance in this world.

Friday, November 14, 2008

Thank You

We just want you to know that we have received all of your kind and thoughtful comments, emails, flowers, notes, phone calls, and other kindnesses. The outpouring of love has been so overwhelming. We feel very blessed, loved and supported. We appreciate your love and prayers more than you will ever know. I've heard other people say in the past that they could feel the faith and prayers offered on their behalf. I never understood quite what they meant, but I certainly do now. We have felt your prayers and strength in very tangible, undeniable ways. Please know that they have made a significant difference on our journey through this challenge and that we appreciate your concern and continued prayers on our behalf.

Monday, November 10, 2008

Early Delivery

Hello all, it’s DeAnna. Meg asked me to let you know what’s going on.

Megan’s water broke early this morning. After arriving at the hospital, they had difficulty finding the babies’ heartbeats and performed an emergency C-section. Sadly, Baby Dex was born without a heartbeat and has returned home to his Heavenly Father. Baby Crew was taken to the NICU. He is still fighting, but he is very small – weighing 1 lb 8 oz. Megan’s doing okay and is recovering. Please keep her family in your thoughts and prayers. I’ll update you as I get more info.

Sunday, November 9, 2008

28 Weeks

Tomorrow we reach a grand milestone in this pregnancy. 28 weeks!! That is such a great thing for the long-term health of these little critters. The next milestone is 32 weeks (Dec. 8) and then we're pressing on to 36!

Well, I'm shocked to report without any exaggeration that I've put on 3 more inches in 3 weeks. I was wondering why I was feeling so much more miserable in the last few weeks and how so many things got so very suddenly difficult, but I suppose the rapid 3-inch expansion explains that phenomenon. How much further can this belly possibly continue to grow?? I'll confess that I actually feel better knowing there is a legitimate reason for my enhanced misery. I was starting to think I was crazy; I just didn't understand the drastic decline and wondered if it was all in my head.

I don't have a picture available yet. I'm trying to decide if I'm brave enough to take pix of the belly in all its bare glory. I should take a poll to see if you'd like to be grossed out by such exposure, LOL! 50 fabulous inches around my waist. Ouch. It's starting to hurt in places I hadn't yet even imagined. My butt hurts all the time, no matter what position I'm in. In fact, sometimes it hurts the very most in the middle of the night when I think it should be feeling the most rested. Rolling over in bed is excruciating and I wake up Justin all night long with my yelps and grunts as I shift.

My stomach is starting to really feel maxed out. It's not quite so cute and round anymore. It is slowly starting to become more and more square-shaped as the front is really starting to resist further expansion (bet you didn't know that was possible, did you?) It's still growing underneath and up top, but the front is really putting up some resistance. It's quite painful to cough, sneeze, or throw up. It's just so tight and so much of it has come on so suddenly in the last several weeks. Contractions almost always hurt now just because it's so expanded.

Reaching the key in the ignition to the van is almost comical. I won't be driving very soon. Getting dressed is an adventure, one I try to avoid most days. I spend a lot of time in gigantic nightgowns (thanks, Heather!) The other day I actually had to have Tanner drag the top of my underwear to where I could reach them. That was an all new low (no pun intended). He was completely bewildered by the request, I'm not gonna lie. I do/can not get down on the floor at this point for any reason. I lost my ability to take luxurious baths this last week as well (dang it!), since I can't get up anymore out of the tub by myself and because laying in the "comfy bath relaxation position" sets me almost immediately into contractions.

I'm not exactly on official physician-prescribed bedrest, but I do spend a lot of time in bed and loafing about out of default. Keeping my contractions down is something we all have to work on as a family. It doesn't take much to set them off because this gigantic uterus is amazingly sensitive at this point. Laying on my side seems to help and it doesn't hurt so much to breathe in that position either.

Kinley asked the inevitable "do you think your belly could explode at some point" question. I told her "no", but I'll confess I couldn't muster up 100% certainty!

Justin has really stepped up with the housework and would like me to step up with a positive attitude, LOL! I know that he's right. I would feel so guilty and so terrible if these babies were delivered before they were fully baked. I know I need to be mentally stronger to make it through another 8-10 weeks. I can't deny that I'm anxious for their arrival, but I want them healthy and strong and ready to come home when they do get here. NICU is not what I'm going for.

They've been active a lot lately and their bumps and jiggles help remind me that there is a reason we're going through this challenge. Just when I'm feeling at my weakest, they'll give me a little nudge (or 12) to ask me to carry on for them. "Chin-up, Mommy" they say. If I could avoid any additional challenges like coughs that last 3-4 weeks or the stomach flu, that would be really swell. I'm so anxious to hold them in my arms and welcome them here to our family!!! I love them so sincerely and I worry about them so constantly that I just want to hold them and know that they are ok and bring them safely to our home and get this party started!

Tanner and Kinley have been amazingly supportive and flexible during all of this. I know this is just a temporary crisis, but I feel so helpless sometimes and if there is anything I hate, it's feeling helpless (which you'll already know about me if you know me well). I feel so blessed to be surrounded by such invaluable friends, sisters, and neighbors who have stepped in with meals, child care, bus-running, phone calls, emails, an amazing baby shower, and everything else. I even scored a surprise footrub one day from my visiting teachers! The outpouring of love and support has been humbling. I knew I'd need help in December and January, but I didn't anticipate being quite so needy so relatively early in this pregnancy.

So, longwinded as it is, that is the 28 week update.