Sunday, May 31, 2009

All Better!


Surgery Pix

Crew seems to have overcome the worst of the surgery. The swelling has gone down a lot and his fever has finally abated. He is smiling again and has resumed eating a respectable amount. It's been a tough few days for him and I'm glad he's feeling better at last.

This was taken while we were waiting for the surgical prep team. We were all very tired, right out of the gate.
This is Crew with his surgery nurse, Jennifer, when they were on their way to the O.R.
This is Wasted, Confused Crew immediately post-op. Because of his age, size, and medical history, we stayed at the hospital for a few more hours than a typical patient, just to make sure he was ok. Crew and I spent that time dozing on his gurney together.I was pleasantly surprised with how quickly he came off the ventilator and woke up. It was still unsettling to watch him come fully awake, arching his back, squawking in frustration, confusion, or pain, I'm still not sure. We're glad it's over.

P.S. have you ever seen such a cute little hospital nightie? I fantasized many times about throwing it into my take-home bag :) He looked so darling in it!

Saturday, May 30, 2009

Tender Mercies

"Of all the gin joints in all the towns in all the world, she walks into mine."

Our our way to the library this afternoon, I was struck by an urge to stop by the cemetery to visit Dex's grave while it all still looks so beautiful and festive after Memorial Day. Five minutes after we got out of our car, who should arrive, but
Mercy's mom!

What a wonderful surprise! Talk about tender mercies in my day (and tender Mercys...) Ashley and I have never met face to face before. We have been email and blogging friends until our unexpected cemetery encounter today. It was such a blessing to be able to spend some time talking together this afternoon about our angels and our experiences.

Thanks, Dex and Mercy, for bringing us together today. You're so sneaky.

Surgery

Wednesday
Crew is scheduled for surgery tomorrow morning at 8:30. He and I will be headed out of here at 7. It's been a roller coaster of a week as far as this has been concerned. It's been on, off, tentatively on, and back around again.

This second issue (which was officially diagnosed tonight as a very mild hypospadia) really threw a wrench in things. But after dozens of phone calls and a whole lot of accommodation and fancy finagling by our pediatrician, a urologist at Primary's, and "our" beloved surgeon, we are back on tomorrow and both the hypospadia and the hydrocele will be corrected in a single surgery, here at UVRMC. Before the end of the month when our insurance expires.

Justin deserves all the kudos in the world for pushing this through and we are overwhelmingly appreciative to all of the doctors who graciously did everything in their power to get this arranged for us.

It's been an extremely stressful few days getting this all worked out and trying to make tentative decisions with less than all pertinent information, but in a weird way I'm kind of glad that everything was so chaotic because it took my mind off of the building tension I was feeling about him going into surgery at all.

For some reason, enduring (three) surgeries to get him home from the NICU didn't feel as hard as taking my big, healthy, happy, smiling, living-life-pain-free little guy back to surgery. OK, maybe it did, but I've blocked it all out.

Anyhoo...It really started to overwhelm me last weekend. I started thinking of him not being able to eat pre-op and taking him to the hospital starving and crying, him not understanding, etc. It was such a nightmare last time and he was a lot less aware of his situation back then. I started having bad dreams at night about him being back on the ventilator, envisioning what a 10-pound unconscious, drugged out Crew looks like. Ugh, it's been pretty bad. Plus, even though this is considered a very minor surgery compared with all of his previous trips to the O.R., general anesthesia is always a very tricky and risky proposition. We. hate. general. anesthesia. and. we. hate. ventilators. We hate having our tiny guy carved up and sad.

I am still feeling twinges of it, but I suspect the surgery schedule will be smoother than Primary's so he won't starve endlessly this time. And I'm feeling the happy adrenaline of having hurdled the other obstacles in our way, so I'm feeling a little more sane. And I will be very happy to have this surgery over and done with. If all goes well, we should be home tomorrow afternoon sometime.

I've found myself wanting to eat my entire refrigerator, but that's a post for another day. Man, I'm a stress eater.

So, please keep our little guy in your thoughts and prayers tomorrow. We'll be so glad to have this over and done!

Thursday Morning
Crew has just headed into surgery. We got up at 1 this morning for a bath and a final feeding. He thought it was really funny to have a bath in the middle of the night. After that, he woke up on his own just before 7 and we headed out right away to the hospital.

He was hungry when we arrived, but not overly so. He was a little fussy, looking for his breakfast while they were trying to get his vitals, but once he was reswaddled, he settled down again. When Daddy arrived after dropping Kinley and Tanner off at various destinations, he bounced him into a little morning nap.

At 9, the surgical team came in to answer questions and take him away. He woke up just as they were coming in, so he flirted with them briefly. The nurse walked him down the hall to surgery and he threw us some radiant smiles as he left us. He is oh, so cute, and oh, so sweet.

We expect the surgery to take a few hours. It's a little more complicated than the previous hernia surgery because we are now dealing with scar tissue and muscles that have already been weakened by the previous surgery. Plus, this is Dr. D.'s first time correcting a hypospadia (no, we aren't that concerned; it's a pretty simple procedure). However, with all of these factors, we've been asked to "be patient".

They won't bring him to his room until he wakes up. I'll be interested in seeing how long that takes. They say 15-20 minutes, but the last time he was on general anesthesia, he didn't come out for many many hours. I warned them that he is a light-weight, so we'll see. I wish we could be with him while we wait for him to wake up. That was how it was in the NICU, but it's a different set up this time, with a bunch of patients all waking up in the same room. Confidentiality, yaddah, yaddah.

Love this kid!

Thursday Late Afternoon
Crew is resting comfortably in his swing, settling in for what I expect to be a very long nap.

His surgeries are considered a success in that his hypospadia has been corrected and his hydrocele has been removed.

Now, do you remember when I said that it is really hard to read ultrasounds and get a definitive answer? Well, we had the ultrasound and received from the head radiologist firm and seemingly irrefutable confirmation that the pathway was wide open, but it turns out that Crew's hydrocele was not, in fact, of the communicating variety. The surgeon inspected it thoroughly, even found his old sutures, and the pathway is sealed shut, tight as a drum. And before you ask, yes, I believe him.

Might the hydrocele have eventually resolved and resorbed on its own? Maybe, maybe not. I'm inclined to think maybe it would have. I even started to strongly suspect recently that it wasn't a communicating hydrocele after all, but changed my mind after the ultrasound, of course. Regardless, it is taken care of and we don't have to worry about it one way or the other. It's been removed, complete with the lining, never to return again. And we had the other problem taken care of, though it was such a minor deformity/concern that we even briefly toyed with the idea of leaving it, with the possibility of needing to address it further down the road. Again, maybe, maybe not.

On the one hand, I'm glad that the issues are 100% resolved, and Justin frames his silver lining around the fact that it wasn't as bad as we all thought. He thinks it's a little weird that I'm disgruntled over things not being as bad as we expected. But I find myself being torn between being grateful that things weren't worse and feeling like a schmuck of a mom, carving up my child, putting him in pain, and throwing him to the wolves with all the inherent risks of surgery for two procedures that may or may not have even been necessary.

Blech. We did everything we possibly could to make the right decision. Everyone thought he had a communicating hydrocele, including me. We used extra diagnostic tools just to make sure and had all the best doctors involved in the process. We even had the director of radiology do the ultrasound himself (to the annoyance of the tech). And we still got it wrong.

Don't worry about me. I'll feel better about all of this in a few days when he's back to his old, spry self. I'll be happy that the hydrocele is gone, communicating or non-communicating. And I'll be glad we don't ever have to worry about the other problem.

I'm hungry. Suuuuuper hungry. And really tired. I'm going to rummage now.

Friday Morning
Oh, my land. I was up all night long with a sad, fevered, post-op baby that couldn't get comfortable. He's so pathetic. So am I, for that matter... Sure wish I had gotten some sleep the night before last...

Friday Afternoon

Crew is doing a teeny bit better. He has had a fever since last night that is finally under control by piggy-backing ibuprofen with the Tylenol. I haven't been able to do that in the past, but I got clearance this time from the team at Primary's as well as my pediatrician (instead of the after-hours on-call dial-a-nurse-at-midnight who told me that I couldn't do it before--under weight or something) and it seems to be helping a lot. He has a bunch of swelling that looks very painful, but they tell me it's "normal". Eesh. He is still not very happy, but he is no longer utterly miserable.

Tuesday, May 26, 2009

Too Sweet, WAY Too Sweet

Not only has Crew slept 10 hours straight for the last two nights (yeah, I don't expect it to continue long-term either), but he hasn't even cried in the morning. I go in there to check on him when everyone else wakes up and he's just laying in his bed, slurping his hands if he managed to get them free, or just looking around quietly. He's so sweet!! I've never had a baby that didn't wail the moment their eyes opened!  He's too sweet!

Sunday, May 24, 2009

Letter To My Son

Dear Dex,

We came to visit you and Mercy today. Did you see the garden we planted? We were so happy to find the lithodora flowers. They seemed so perfect for you. We haven’t been very good gardeners in the past, but these are very special flowers to honor your role in our family, so we’ll take extra special care of them.

It’s been more than 6 months now and so much has happened. Some days I still just can’t believe that you are really gone. It’s not at all how we planned things, but we know that Heavenly Father loves us and that this is part of His plan.

I am so proud of you. I remember the power of your spirit on the day we said goodbye, and I am so thankful for the times that you have come to visit since then. I look forward to the day when I can hold you in my arms again and never have to let you go. You are a brave and noble son and I am humbled to be your mother.

Please keep pulling for us. Your efforts really do make a difference. Thank you for coming to Crew’s NICU blessing. Thank you for being with Crew so often and for lending him your strength. You two are so different in spirit and personality, but I see so much of you in his beautiful face.

We are trying to make the right choices so that we can be with you again. Your life and your death has been a unifying force for the entire extended family. You have strengthened my testimony of the plan of salvation and you have been an inspiration to anyone who hears about you.

I love you and miss you all the time but we are ok and we are finding joy in the journey.

Love,
Mommy


After spending time writing letters and making cards for Dex and Mercy, we spent some time at the cemetery as a family this afternoon. Boy, there were a lot of people and flowers there! The cemetery is a hoppin' place on Memorial Day weekend!

We knew that we couldn't place a stone until spring, but we didn't realize how long it would take to finish once we ordered it, so we are still waiting. We definitely should have put things in motion during the winter. Live and learn. We were disappointed to not have it ready for today. It seemed lacking.

Tanner suggested we requisition a rocket ship to take us to heaven for a visit. Do you think we can find a good deal on Orbitz? I just love my kids.

Saturday, May 23, 2009

Memory Garden

Through one of my online twin-loss support groups, I got the idea to plant a garden in memory of Dex, so that's what we did this weekend. Kinley and I found some beautiful blue and white star flowers that were absolutely perfect for the occasion. Blue for our little boy, white for the pure angel that he is. The other tiny white flowers are in honor of all the angel babies who are with Dex and those who are still fighting for their lives in the NICU's around the world.

Now, before we began, Kinley reminded me that last year, she wore a "head thing" to plant the flowers.
Well, once Tanner saw Kinley decked out in her "pirate hat", I was obligated to find him his own do-rag.
They sang made-up pirate songs and yelled "arrrrrrrr!!!" while shoveling.


The kids designed their own arrangements (and painted their pots) and I'm very pleased with how everything turned out. I can't wait to see them in full bloom.

Crew Update

Guess who actually chuckled at me this week? He did it during our therapy stretches, when I tickled his nose with his big toe :)

Crew has had a busy week. He has been to the pediatrician, had an ultrasound, and worked out with his OT. Phew!

Mighty Crew is Mighty Big now! He is a whopping 10 pounds, 2 ounces! He is rolling from front to back and almost rolling from back to front, but gets hung up on his elbow. He mostly just gets onto his side, runs into his fingers and slurps on them instead. He is 22 and 1/2 inches, growing 1.5 inches in one month! We remeasured just to be sure. He's growing so fast! He's gaining about 2/3 ounce per day, which is more than any of us expected.

We are really hoping that Dr. D. will be willing to do the second surgical procedure himself because if not, we won't be able to have the surgery next week, even if we are willing to go to Primary's. And with our stupid insurance situation (starting over from scratch June 1 with a brand new deductible), it would be really nice if we could get everything taken care of before the end of May. Since (I think) it would be better for Crew to have them both done at once (I don't think he has to be out for the 2nd one, but I'm not sure yet), it will probably mean that we won't have either procedure done until we can have them both done together. So... keeping fingers crossed that Dr. D. will feel comfortable taking care of the other problem, but we won't find out until next week, probably Tuesday or Wednesday.

He is eating 3-4 ounces at a time now. He gets up once a night to eat and calls for me. He whines loudly and then waits. I keep thinking he'll fall back asleep, but he doesn't. He's ravenous (especially last night when he made it 7 hours). He calls again and waits. We do this 3 or 4 times until I finally drag myself down the hall where he is watching the side of the crib expectantly, waiting to give me a big dimply grin as soon as I appear. I love this hunka-hunka.

Oh, and except for a few two-piece newborn-size outfits, the big man is now wearing 0-3 month clothes!!!

Yeah, so he's 6 and a half months... but still, yay!

Angel Friends

Crew and I had a few minutes to ourselves on Wednesday on our way home from the hospital, so we stopped by the cemetery. Dex's gravestone still hasn't been placed, but the wee tiny little patch of grass right where he is buried is greener, fuller, and more vibrant than the surrounding grasses. It's like his own little natural gravestone, a vibrant little tribute to his short life.

We took a walk and stumbled unexpectedly upon the gravestone of one of Dex's little angel friends, Mercy, who recently joined him. She too has received the "crown without the conflict", though her short life was anything but easy. I know it's not where they really are, not where their spirits are, anyway, but for some reason it makes me feel better to know that they are buried close together, that Dex has a friend in the Angel Garden.

Surgery #4

Monday the 18th:
Crew will be having an ultrasound this week to try to confirm what is a virtual certainty -- that his hernia repair site on the left side has reopened. We visited with the surgeon and he said that he has never had a hydrocele appear after a hernia repair that is not a communicating hydrocele, a.k.a. another hernia waiting to happen. The ultrasound may or may not be able to adequately see what is going on, but it's worth the attempt, on the infinitesimal chance that 1) it's not communicating and 2) it can be read with definitive precision.

Crew is scheduled for surgery on May 28th here at our local hospital.

Wednesday the 20th Update:
Crew had his ultrasound yesterday and it confirmed what we suspected. One of his hernia sites has reopened and needs to be corrected. He also has a fun new problem, some scar tissue growing over... well, let's just say that some damage was done back in his catheter-wearing days. We should be able to have both problems corrected at the same time, but if Dr. D. isn't comfortable doing the second procedure, we'll have to move our plans to Primary's to have a urologist join in the fun. There is no end to drama with this kid and his nether regions. Ugh!

Brimming With Cuteness

video

My Beautiful Babe

I've never had a baby wake up so happy from every nap before.




Tuesday, May 19, 2009

Is He Cute Or WHAT???

How did I get so lucky? How do I have a baby that is so ridiculously cute and so happy and sweet-natured? I never tire of gazing at the beautiful little face on this shameless little flirt.



Monday, May 11, 2009

6 Months

Yesterday was Mother's Day. It was also the 6 month anniversary of the birth of Dex and Crew. I'm not sure what I can say beyond what I have said in the past. I still feel the same and (despite what my previous post may have implied) I'm in a happy, well-balanced, content place at the moment.

I guess I can add a quote or two that I used in the talk I gave yesterday in sacrament meeting. This one is from Elder Wirthlin's final address, "Come What May and Love It".

"The Lord compensates the faithful for every loss. That which is taken away from those who love the Lord will be added unto them in His own way. While it may not come at the time we desire, the faithful will know that every tear today will eventually be returned a hundredfold with tears of rejoicing and gratitude.

One of the blessings of the gospel is the knowledge that when the curtain of death signals the end of our mortal lives, life will continue on the other side of the veil. There we will be given new opportunities.
Not even death can take from us the eternal blessings promised by a loving Heavenly Father.”

And a quote from Elder Gary Stevenson's recent conference address:

"There is a righteous unity between the temple and the home. Understanding the eternal nature of the temple will draw you to your family. Understanding the eternal nature of the family will draw you to the temple."

How Do I Respond?

There is a comment that continues to be made that I don't know how to address. I know people aren't intending to be hurtful and that their hearts are in the right places. And so many people actually say it to my face that I think more people must think it and just not say it. Every time it's said, it's so stunning and it takes me so completely off guard that I just stare blankly and don't know how to respond.

The comment is this: "Well, didn't Justin only want one more baby? So, if you wanted two more babies and he wanted only one, you both kind of got what you wanted, huh?"

The thought must not be that unique because I've heard it more times than you might think. It makes me want to never tell anyone the beginning of our miracle story (where Justin declared we could only do pregnancy one more time and I couldn't wrap my head around that because I felt there were two more little ones waiting for us) because some people walk away with the bizarre, unfathomable idea that my husband is somehow relieved that my son has died to spare us a few sleepless nights and diaper expense. I just don't know what to say when people say that and it makes me feel sad. Because I'm so stunned that I just change the subject, I feel unfair and disloyal to Dex and to Justin because it's soooo far from the truth. Justin was so scared of the dangers of a twin pregnancy (hello, wonder why) but once he got used to the idea and over the total shock of the situation, he was so excited to have his babies to snuggle and to raise, and he was completely devastated when it all fell apart.

How can I respond kindly and effectively to this sentiment?

Saturday, May 9, 2009

Neonatal Follow-Up Clinic

Yesterday Crew had his big neonatal follow-up clinic appointment. It only took 2 hours, which was less than we planned on. After he was weighed and measured by the nurse (9 pounds, 10 ounces) he saw a pediatrician, a nutritionist, and a physical therapist. They had some of his medical records and I filled them in on the particulars and details.

He missed out on his morning nap but managed to stay very happy for the duration (to my relief). He was flirty and smiley and peed all over the pediatrician when she grabbed his junk. Everyone was very pleased with his progress and each one of them appeared quite shocked with how well he is doing, considering the life he led for his first three months. They all seemed to concur that he's doing miraculously well, considering all that he has been through. But hey, I happen to believe in miracles, so there you go.

We may go back in a month or two to see a neurologist; otherwise we'll see them again when Crew is about 9 months adjusted (November). I really liked the staff. It reminded me of the NICU team at UVRMC... only warmer and fuzzier, if you can even imagine. I almost expected a round of warm embraces before I came home.

So, little Crew continues to make progress. He's still very tiny and may never catch up (though I think he may be bigger than Kinley was at 3 months old). He is growing very very extremely well now that he is growing at all, so we'll just have to see what happens down the line. For now, he remains very firmly and consistently in the 3% range for height and weight of normal 3-monthers.

Catching Karlee

Crew is starting to catch up in size to his cousin Karlee! Pretty soon he just might pass her!Ooooooh, soft.


Conversations Overheard

Kinley to Crew: Hey! Where's your stem, pumpkin head?

Thursday, May 7, 2009

Fatty McFat-Pants

Today was (obviously) photo shoot time. I think he is so cute. But every time we do this I am reminded of how much I hate my camera, how much I hate living in a dungeon with crappy lighting, and how unskilled I am as a photographer. Sigh... at least my model is beyond adorable.





Wednesday, May 6, 2009

Making Progress

Our early intervention OT, Carlon, came to visit this morning. Crew weighs 9 pounds, 9 ounces! It's so hard for me to believe that he was ever 1 and a half pounds. He is more than 6 times the size that he was when he was born and more than twice the size that he was when I brought him home in February! That's crazy!

He is a shameless flirt, which is really amusing. He is extremely sociable, which has always been one of his defining characteristics. He likes tummy time a (very little) bit more, now that he has figured out that he can slurp on his hands to pass the time. He is bringing his hands to his mouth very frequently and has started "talking" to us in the last few weeks. He is making some pseudo-laugh sounds that one day are going to turn into a full belly laugh, I just know it! He still doesn't like to hold objects in his hands for very long. He drops them after holding them for a few seconds, but that's still an improvement from what he was doing before.

He has a 3-4 hour appointment this Friday at the neonatal follow-up clinic. Doctors, doctors, everywhere. Appointments, appointments, all the time.

Tuesday, May 5, 2009

My, How We Have Grown

Do you remember this?It was the first item of clothing that I was able to dress Crew in. His micro-preemie duds. This picture was taken on December 19th, when Crew was about 6 weeks old, at 2 pounds.This is the size "1" diaper that Crew wears now.
See how cute he is in that diaper? I call him Fatty McFat-Pants.
Now...how's that for some perspective?

Monday, May 4, 2009

Welcome Home, Darbi!

Born New Years Day (124 days ago) at 23 weeks, weighing in at a whopping one pound...
(See Daddy's wedding ring on her leg?)Crew's tiny girlfriend has come home at last. Congratulations, little princess! You adorable little miracle!