Tuesday, May 26, 2009

Sunday, May 24, 2009

There's No Place Like Home

After 135 days, our little nugget is finally home! Brooklyn had an eventful day yesterday and is adjusting nicely to her new digs. We'll write more soon, but here are some videos and photos of the big day.

Exit: Stage Left from Sean Lorenz on Vimeo.

Home from Sean Lorenz on Vimeo.

Momma and Brooklyn snuggle for the first time at home.

Grandma came in from Ohio to say "welcome home"!

Grandpa holds little B for the first time.

Thursday, May 21, 2009

Day 133 - Post-op blahs

Mornin'! Brooklyn had a good night post-surgery and her tummy is healing nicely thus far. Brooklyn is a sensitive gal, so she's been hopped up on baby Tylenol but other than that not much is new. The nurse had to take the IV out of her arm and put one in her HEAD (yeah, that can't feel good - see lump of gauze in photo above). Hopefully she can get that sucker yanked out this afternoon which is when they plan to give the g-tube its maiden voyage with a little milk down the shute.
Posted by Picasa

Wednesday, May 20, 2009

Gimme the TUBE!

UPDATE: 4:04pm Brooklyn's surgery went very well and she's on her way back to Beth Israel now! The nurses told us prior to the surgery that Brooklyn may need to be intubated after the surgery, depending on how sedated or oxygen-dependent she was. Thankfully, B did not need any oxygen other than a safety blow-by oxygen in her incubator. Everything went well during the surgery and the g-tube is in! Brooklyn is still a bit groggy and peeved at only getting IV fluid for dinner, but otherwise she is doing well so far.

UPDATE: 1:49pm
Brooklyn slept through the ambulance ride from Beth Israel to Children's like a teenager. She's so funny. We waited with B in pre-op and they just took her in for the surgery. Here's Brooklyn in her incubator...completely oblivious to what's happening.

Brooklyn is getting her g-tube surgery this morning, so I'll be updating throughout the day. So far she had a kidney ultrasound to make sure no calcium deposits were found from receiving lasix for months. B has some calcium deposit-free kidneys and is rocking an arm IV the size of her head. She will be heading to Children's at 12:30pm.

Monday, May 18, 2009

Day 130 - The end is near

Kelly and I have been waiting (not so patiently) to find out when Brooklyn's g-tube surgery would finally happen. Well, for once, having health insurance nag your hospital to speed things up payed off! Thanks to the ants found in our health insurance's pants, Brooklyn's swallow/upper GI study is scheduled for tomorrow and the surgery will happen on Wednesday. We are praying that whatever is ailing our little muffin's tummy will show up during this study so that the doctors can do some fixin' on Wednesday.

We will share Brooklyn's test results tomorrow.

Friday, May 15, 2009

Day 127 - Milky super sleuthing

A lot has been brewing here in the NICU the past few weeks. For over a month now, Brooklyn has been happy and healthy but continues to prefer getting fed through a tube than via bottle. Add to this the fact that she is gassy and completely uncomfortable just laying in her crib after a good meal. This led Kelly, the nurses, doctors, and myself to begin some serious super sleuthing. Why doesn't B like to eat??

We have tried just about everything: different bottles, nipple flow types, breast feeding only, bottles only, acid reflux medicine, Prilosec, etc. Well, it seems that after exhausting most options, in addition to visits from Children's Hospital's feeding specialists and GI consultation team, we may finally be honing in on the culprit. Milk allergy! It appears that mom's milk makes little B gassy and chock full o' reflux, creating a vicious cycle of disliking the bottle. In other words, B is developing an aversive reaction to eating. Not good. She also has developed eczema all over her skin, another sign of an allergy. Oh how the plot hath thickened!

So, yesterday the GI team proposed taking Brooklyn off breast milk and putting her on Neocate - a non-dairy, non-soy formula which seems to be working well so far. B is also scheduled for a swallow study over at Children's to see how bad the reflux is. Once this study is done, Brooklyn will probably be scheduled for G-Tube surgery sometime next week. For those unfamiliar with said tube, it is basically a little gas tank cap or "nubbin" that snakes a tube from Brooklyn's belly to directly outside her skin. Kelly and I would still feed her bottles of Neocate, but any unswallowed milk would get sent down the ole G-Tube. Since Brooklyn has developed an aversion to eating from a bottle, it may take some time for her to start liking the experience of eating again but at least she can FINALLY come home in a few weeks-ish!

Be praying that the Neocate actually works and that B's surgery goes smoothly. I leave you with our chubby, 8-1/2 pound baby (yep, that's right, she's fat) hangin' with mom.

Brooklyn + Apple Bottom Jeans = Awesome from Sean Lorenz on Vimeo.

Tuesday, May 12, 2009

confessions of a NICU mother

124 days ago i gave birth to this beautiful little girl you see above, and since then i have mostly wonderful days. Wonderful in that my daughter has been in perfect health EVEN for a 24 weeker! I have had the joy of watching her grow over the past 124 days in ways I would not have been able to had she been growing inside of me. I have gotten to know her as an extremely determined little girl - one who succeeds at anything she puts her mind to. And I have come to believe in God's LOVE, KINDNESS, and perfect timing more than ever.

BUT, I have had my days where even though all of the above is true, IT SUCKS BEING HERE THIS LONG!! I have people telling me all of the time how strong they think I am and how wonderful we have been dealing with "this whole thing," but they are not here for the recent moments where I have hit my breaking point. Since my due date, 2 weeks ago today, I have been more than anxious to get Brooklyn out of this one room prison she resides in. (no offense nicu peeps) But alas, the girl is just not that into eating. And eating she must do in order to survive the outdoors. That's it. That's all we're waiting for. Just six measly feedings a day. How hard can it be?!! I have looked for different ways to trick her into taking full feedings, i.e., singing every ridiculous song that was ever written, changing her diaper halfway through the feeding to wake her back up, FORCING her to take her bottle despite her efforts to just sleep - BIG mommy demerits. But alas, she's just not that into it. (for those of you who have seen the movie or read the book you know, if someone is just not into it, you can't force it!) And it's FRUSTRATING!!!! I want to take her home yesterday!!!!

SO, my husband - in his loving way - reminded me today that SHE'S HEALTHY AND THRIVING AND HAPPY!!!! And while I know all of this, my mind has not been focusing on these wonderful things these past two weeks. All I have been thinking of is getting her out of here. My best friend - also lovingly- reminded me of God's PERFECT timing. She reminded me that I had an infection and in JUST THE RIGHT TIME Brooklyn came out - not a moment too soon. Not a moment too late. Had she been just a couple of days earlier, she would not have had the chance to survive. UGHGHGHGH! How quickly I forget this!!!

SO, on day 124, I have decided - thanks to my loving friends and family - to continue to be grateful for each moment I have with this miracle child. Whether it be here in this little hospital room, or at home in our fun new house. Either way I get to be with her whenever I want! So what's the problem?! My focus is going to be on the time I get to spend with her KNOWING SHE WILL ONE DAY LEAVE HERE.

Thank you for your continued prayers and encouragement. We are where we are today because of you all.

Monday, May 11, 2009

Happy Mother's Day!!

yesterday was my first mother's day, and it was perfect! my fabulous husband woke me up with lemon blueberry pancakes and freshly squeezed oj. what a guy!!

when we got to the hospital i saw that brooklyn had made me a card! she made a hand print into a flower and wrote me a little note. sweet girl! the highlight of my day: brooklyn ate full feedings!!! if she can continue to eat well and gain weight without any tube feedings then she can come home soon!! here's to hoping.

here are some pictures from our day together:

Thursday, May 7, 2009

The Lorenz Family Beginning

Last month, our good pal John Park took hostage the Super 8mm film footage from Kelly and I's wedding that had been sitting in our refrigerator for almost two years. A few weeks later he showed up with a DVD of the developed film; it was one of the best gifts I had ever received. I have watched this short montage of our wedding day over and over, so I thought it would be fun to share with those who were there that day as well as those who couldn't make it. Thanks again, John, for the perfect present!

A Beautiful Grainy Day from Sean Lorenz on Vimeo.

Tuesday, May 5, 2009

Day 117 - Slogging Along

Sorry for the lack of updates lately. It's been a busy, busy couple of weeks with moving and finals n' stuff. Also, there's nothing new to report with Brooklyn. She's 7-1/2 pounds now! B is slowly starting to eat a bit better but she'll definitely be in the NICU for another 2-3 weeks. Kelly and I have decided to stop projecting "coming home" times and just focus on the fact that our little girl is happy and healthy. And boy oh boy is she happy!

Brooklyn is a tad behind on getting the whole eating thing down, but she's developing quickly in other areas. For example, B can now turn her head from side-to-side during tummy time and the way she looks at us continues to amaze us. She's a very social baby (shocker) and loves to play, cuddle, and talk. Yep, talk. It sounds like a growling kitty...so cute. Here are some pictures from the last few weeks.

Cute n' chubby

Hangin' with mom in her green dress

Giving a "peace" shout out to her homies
Brooklyn wakes up to find herself on...THE ISLAND!!!

B & Monkey singing a little Pavarotti