Wednesday, May 28, 2008

5 weeks

A is 5 weeks old (almost 6)! Yesterday we had a pediatrician visit. A is now 8 pounds 7 ounces! He is growing like a weed! The doctors are continually impressed with his progress and are encouraged about how he will come out of this!

We have been busy busy. S’s sister K came into town over the weekend and we had a great visit! A few days before she got here our good friend C stopped in on her way from CA to MI! A loves hanging out with his Aunts!

This coming weekend we have my whole family coming. My brother, sister-in-law, and their two kids are bringing grandpa! We are excited as we have not met our new nephew J and they have not met A yet! I just hope the weather holds up.

Wednesday, May 21, 2008

First Day in Court

Tomorrow, we go to court as a family. We will, officially, all have the same last name after the court allows me to take E's name.

I used to think that this was going to be a big deal. Funny how perceptions can change.

Congratulations to us!

Tuesday, May 20, 2008

The weekend update, in pics



We had a great time at the Farmer's Market this weekend, and Gladys had a great time hanging with A too!

Friday, May 16, 2008

First outpaitent doctors appointment: Updated

We are going to the surgeon's clinic today for our first check up since the NICU! We both think little A has gained weight and is growing like a weed. Fingers crossed that that is the truth!

He has been verosusly hungry in the past few days. We are on such a tight feeding regimen it is hard to sooth him. Hopefully we will have more clarity on how to increase his feeding as he grows!

Update:

HE GREW! We left the hospital weighing 6 pounds 12 ounces and now he is 7 pounds 7 ounces! They say he is looking great! We are so proud of him.

Thursday, May 15, 2008

Who woulda thunk....

As S, A, my dad, and I sat on the deck yesterday eating dinner we couldn’t help but think about what a year has brought us. One year ago that deck was being built, S was starting a new job, we were planning my 30th birthday BBQ, looking forward to my brother’s family’s visit and a very very busy summer. We were also, anticipating yet another failed TTC cycle.
My, what a year has brought us, many good and many difficult.
Who woulda have thunk ,
• my brother and cousin reported their wives pregnant within weeks of each other.
• we’d be successful at TTC.
• S would have lots of morning (all day) sickness.
• I would consider co-lactating.
• we would have a boy!
• we would struggle to name the boy.
• I would start taking birth control.
• S would find pregnancy not nearly as romantic as she thought it would be.
• despite taking great care of herself during pregnancy the baby sugars attacked.
• instead of being the average of 8 days late for a first pregnancy our baby came 3 weeks early.
• S’s water would break without any other sign of labor.
• we would have to induce.
• 36 hours after begin home with our new baby we would end up in the ER.
• our baby has a freak intestinal volvulus.
• we watch our baby wheel off for surgery at 58 hours of life.
• our baby has an ostomy.
• we check out of the hospital and go home, again.
• our baby got dehydrated and dipped below 6 lbs.
• we checked back into the hospital.
• we stay in the NICU for another two weeks.
• our baby can’t tolerate breast milk.
• our baby is on formula because he can’t absorb nutrients.
• we are sent home for the third time
• I give up on co-lactating after months of prep due to not wanting another thing to manage for the next month.
• we’d still have more to go….
The good news about all of this, is that A is perfect, wonderful, adorable, sweet, and my favorite boy in the world. We didn’t anticipate any of that stuff but every bit of it is worth it because he is our son. I am totally and utterly in love with him! Just look at him!




Tuesday, May 13, 2008

Homecoming: Take 3

We are going home today!

A gained 2 ounces last night. Growing boy! We will be inundated with doctor's appointments over the next few weeks, but at least we're going to be at home - no IV's, no monitors, and the ability to be outside!

It's sunny and climbing to 70 here today. A perfect day to be outside as a family.

Monday, May 12, 2008

The start of week 4 in the NICU

We're not going home today. Maybe tomorrow, but not today. I'm getting the feeling that we're going to hear that for a few days.

A is doing relatively well. They removed his PIC line (central IV) this morning, and we're able to leave the hospital for 6 hours today (same as yesterday.) We are waiting for the surgeon to decide how to proceed if/when we go home as we will be treated like outpatients. E and I were not-so-secretly hoping that they'd just decide to go ahead and reconnect him this week, but it looks like that won't be the case either. The very good news is that he's continuing to gain weight, even if his output is still high.

I'm having a severe bout of the "Why Me"s today. None of this seems fair, and I have the urge to drop an f-bomb every other word. So, I think it's best that I sign out for the time being.

Friday, May 9, 2008

No real news, but a nice break

Well, A's output has yet to improve. So, no real news.

This doc, however, (new as of yesterday) is not into us staying in the hospital since A is a relatively healthy little human. SOOOO, he arranged it so that we can leave, as in vacate in entirety, the hospital premises for up to 3 hours every day. This was a marvelous gift. We spent our three hours on the deck grilling and hanging out with Grandpa. Gladys was so glad things were somewhat normal, but nearly as happy as A's mommas felt!






Wednesday, May 7, 2008

What day is it?

Well, I know it's Wednesday night, but time sure has a way of getting away from us over here. No big updates yet. A was able to continue increasing his feeds (good)... until today when he started dumping again and lost weight. Ugh. We have a new attending physician starting tomorrow, so hopefully we will get a new regimen that works. Updates when we know something.

In the meantime, here are some photos of our little guy. He's doing all kinds of things now like holding eye contact, giving us sleep grins, and lifting his head. AND, he's still working out how to suck his thumb. Overall, we'd also like to brag a bit about how laid back he has been through all of this. Clearly, he gets that from E. Enjoy the pics!!








Aha - I figured the video thing out though. Enjoy that too!


video



Monday, May 5, 2008

Another Monday at the NICU

We are getting better over here, slow and steady (wins the race?)...

The history, so I can try to update and have it make sense: Basically, A had a volvulus in his small intestine, specifically his ileum, which is the lower part of the small intestine. That volvulus (small spontaneous twist, likely resulting from when the intestines migrated into his body in utero) died and backed up the rest of his small intestine. That volvulus had to be removed, but b/c of the back up his intestines are incredibly dilated. They have to repair his condition in two surgeries. The first one lets the waste go through his body and out (the side.) Then, we wait 6-8 weeks for the dilation to go down. At that point, they will then reconnect his intestines and he SHOULD be able to go on like a regular baby because he only lost 10cm of his intestine, which leaves 90-95%. Our trusted friend, Dr. Go.ogle assures us that when folks lose more than 2/3 of their guts, they start to have major problems... and we're no where near that, at least in the long term. In the short term, however, he is using only the highest part of his intestines which is a big piece of why we may be having the problems we are at the moment (during this interim between surgeries.)

OK, so I wanted to explain that b/c I doubt we did a good job of explaining earlier.

So, now, we are here because A doesn't seem to be absorbing. They've ruled out infection, which is a good thing... except that it is the most common reason for "dumping". We are working on getting him up to full feeds while supplementing with IV nutrition. As of today, we are at 75% of oral feeds (45cc/3 hours). He is no longer dumping, but his output is still really high. It's amazing how obsessed we are with input and output now...

We are cautiously optimistic and trying to remain in the here and now because there is nothing to plan for as of yet. In terms of us making do - my mom and sister B left this afternoon (arrived Friday), and they left us a few days worth of meals. We have some good friends in town who are going to help us with Gladys for a few days until E's dad returns at the end of this week. We, unfortunately, have no hope of getting out of here particularly soon.

So, that's the scoop for now. At this moment, I'm going to change my son's diaper and get ready to feed him. We are going to attempt actual nursing today - he LATCHED this afternoon in quite a surprise move, so we're going to attempt a significant feed with bottle as backup. No pressure, as today's latch was a significant milestone, but it feels good. We're trying now to focus on some of his developmental milestones and de-medicalize our understanding of life. He doesn't know that he's hooked to tubes, and we don't want to miss this start of his life because of it.

At least, that's the theory for today.

Saturday, May 3, 2008

Still here

The latest word is that we could be here a week... or more. A is "dumping", which means that everything he takes in, he puts back out leaving him at risk for dehydration and, of course, not getting the nutrients he needs to sustain himself, let alone grow. It is common for babies with his procedure (illiostomy - sp??), so we are working on a feeding plan that "works for him", as they say.

When we went home, he was eating breast milk fortified with formula to beef up his calories. Now they believe that the fortification overloaded his system, so we are working on pure breast milk. If that doesn't work, then we will move to a predigested formula.

My mom and one of my sisters arrived yesterday for moral support and helping us to maintain our household. Gladys was invited by her friends at doggie daycare for a day outing to a Frisbee tournament (um, we didn't know she was good enough to compete!! Our dog has a secret life without us!! Weird!) So, things are going as smoothly as possible at the moment in our lives outside of the NICU.

A is, so far, tolerating his feeds well. He is on intravenous nutrition and we are slowly (ever so slowly) increasing the amount he gets to eat at one time. We got the go ahead to move from about 1/2 an ounce to just under an ounce ever three hours for now.

We're holding up OK. Erin is, as always, strong and positive. I have some good moments too. It really helps to have mom and my sister here - they are helpful in terms of practical things, as well as emotionally - that's good for both me and Erin. Still, I can't help but go to the place where I am just in shock that this has happened to us... after all that we've already been through... after how much we wanted that little boy. Then, I bounce back, especially when I look into his eyes. He smiled at me this morning, seemingly in response to my voice. He is the most beautiful boy I've ever seen in my life. He didn't ask for this, but he did pick us. I'm so anxious to get the NICU behind us because that means he is healthy, but I wouldn't trade him for any other baby.