Looking Towards the Future

06 Jun 2011 1 Comment

by thedenbyclan in Ashley, Lillian Grace Tags: , , , , , , , , , , , ,

Me & My Mom

It has been a very busy few weeks in the Denby household. 3 weeks ago I went to St Luke’s to get my skin graft redone. It all happened kind of fast, but the deadline for beginning my next treatment is bearing down on me and to avoid various infection risks when that starts, I need my various surgeries to be as close to healed as possible. I spent 5 days in the hospital tethered to the vacuum pump and an IV. I only got up to use the facilities. It was really hard; being in the hospital is not fun under the best of circumstances, but being separated from Lillian was really awful. I finally got to go home on a portable vacuum pump right before the Memorial Day holiday weekend. Of course, the pump decided to stop working on Sunday. So, while on speakerphone with Dr Izadoost, my plastic surgeon, and following his instructions, my mom removed the pump, took and sent pictures of my back to Dr Izadoost with her cellphone, then redressed my wounds. It made for an exciting holiday!

I met with Dr Darcourt, my oncologist, to discuss treatment options. If all insurance approvals go well on June 23rd I will start a regimen of pegylated interferon. Pegylated Interferon was just approved by the FDA in April and requires only one shot a week; the current standard treatment requires 5 shots per week. There may be a slight diminishment of side effects as well. The protocol for this interferon calls for a 5 year regimen, however if there is a clinical trial, or new treatment Dr Darcourt may choose to switch me to a more beneficial treatment later.

My first few months on Interferon will likely be tough. I will probably have flu-like symptoms and nausea, and most likely Dr Darcourt will prescribe an antidepressant as a preventative measure — depression is one of Interferon’s more serious side effects. But Interferon increases my chances of a lengthy remission. Josh will learn to check my lymph nodes and moles. I will have follow ups every 3 months for the rest of my life.

Dad & Me

I am very glad to put the surgery part of this ordeal behind me for now. I want to personally thank everyone for their generous prayers and good wishes, and especially to thank all of you have helped us with food and other kindnesses. Cancer is a very lonely diagnosis: I am sure I would not have made it without all of your support. It means so much to us to know how much you care for our little family.

Trying to get comfortable

Lillian continues to grow by leaps and bounds. She is a crawling pro now — much to the cats’ chagrin. She eats 3 meals of cereal, fruits and vegetables a day with gusto, as well as sucking down copious quantities of formula (it’s a lot more expensive than breast milk!). Most nights she sleeps through the night. The most astonishing thing is how her personality continues to develop. She is a charming, funny, mischievous girl who loves to explore and play. She has been on several outings and has even joined us for dinner at a restaurant. She is finally back in the care of her mom and dad at night.

Thank you for your prayers and support.

New Year’s Resolutions

03 Jan 2011 Comments Off on New Year’s Resolutions

by thedenbyclan in Lillian Grace

Voicing her displeasure

1. Make more food from scratch 2. Post more often.

…only 2 resolutions and so far they have not been going well, folks. Lillian has decided she is a night owl. She wants to stay up all night and party. She insured that we saw the New Year in — and several hours beyond… yet, it is the biggest joy in the world to have her home.

 

Sweetly sleeping

She is a social creature and ever so charming — though her charm is not as clear at 2 in the morning when she is at her most demanding. To say that I am sleep deprived is a bit of an understatement. I have forgotten the words to communicate simple ideas, and I often cannot communicate at all: “I need to thing the things.” Fortunately Josh is understanding and we are working hard on non verbal communication. I am going to try to post once or twice a week, but no promises until she sleeps a bit more.

 

I love being a mom.

A Letter to Lillian on the Occasion of Her 4 Month Birthday

09 Dec 2010 Comments Off on A Letter to Lillian on the Occasion of Her 4 Month Birthday

by thedenbyclan in Lillian Grace Tags: , , , , , , , , , , , ,

 

4 Months Old

Dear Lillian Grace,

Another month gone and my, how much progress you have made! You are taking huge strides on your journey home; your dad and I could not be more excited. The truth is our house has felt empty since the day you were born. You are not with us when we wake up in the morning: that is very hard. The joy we feel when we are with you in the NICU makes it difficult to go home.

You love to play, to eat and to be held. You love people — you stare at our faces intently and with great curiosity. When you went for your MRI the other day, you took the longest trip of your short life — and loved every minute of it. As you rolled passed in the infant transporter, you took in all the sights, all the while sucking calmly on your pacifier.

As I held you today, once again I could not help but marvel at how big you are. The NICU staff and your visitors remark time and again on how much you’ve grown; your dad and I will never take your size for granted. I remember holding you for the first time 10 days after your birth. You seemed so tiny and fragile; but you grabbed on to me and you never let go. The presence that boomed out of your tiny body has grown with you; I swear that I can feel you as soon as I step out of the hospital elevator. We have yet truly to capture the mischievous looks that you give when you play — I am not sure that there is any camera that could capture them.

First & Current Diapers

Your dad and I are very proud of you. To say we cannot wait to take you home is an understatement. Soon the day will come when we will load all of your stuff from the NICU into our car, put you in your car seat and drive you home where you belong. While everyone warns me how hard it will be when you are home and we don’t have your wonderful nurses to help (and I am sure it will be), I don’t think I’ll ever admit it. For four months our dream that you would come home seemed remote and far-off; now, to have it so close to coming true fills us with joy. Your dad and I love you, tiny miracle. You have enriched our lives in more ways than we ever could have imagined. We love being your parents and await your home-coming with bated breath.

Love

Mom and Dad

Fight For Preemies

17 Nov 2010 1 Comment

by thedenbyclan in Lillian Grace Tags: , , , , , , , , ,

Lillian Grace

Lillian 100 days ago

Three months ago Josh and I discovered the world of premature babies. When you find yourself tossed into this world, you find that it’s an overwhelming place: so much information to absorb and so many fears to face. But the preemie community welcomed us with open arms; we have so many new and wonderful parents and friends in our lives; many have traveled much harder roads than we have, yet they reached out to comfort and support us. We are also deeply grateful for (and humbled by) the amazing outpouring of support from so many friends and family.

Today is Prematurity Awareness Day. 1 in 8 babies is born premature. I knew nothing of this world in which incredibly tiny babies have to fight to breathe, eat and live until I watched my own amazing child fight harder than I could ever imagine a 1 pound, 8 ounce human could fight. Today I fight for Lillian and other babies like her because all babies deserve the best chance at life. Go to www.marchofdimes.com to find out what you can do to help. –Ashley

A Letter to Lillian Grace on the Occasion of her 3 Month Birthday

09 Nov 2010 2 Comments

by thedenbyclan in Lillian Grace Tags: , , , , , , , , , ,

3 Months Old

Dear Lillian Grace,

Today you are 3 months old. You astound me with your progress: each day, you are more aware, more communicative, more wonderful than the day before. You love to hear me read to you — especially books that rhyme. If I read aloud while holding you, you open your eyes and look at me solemnly. You love the sound of singing; you kick your feet and smile. You love the rumble of your dad’s voice when he holds you; you snuggle into him. You have a contented sigh that you give when you fall asleep with a full tummy. You are a sweet, funny, beautiful girl and your dad and I are very proud of you.

It’s been a long journey to get here. Three months of terror and worry (and joy), but you have met each of the challenges you’ve faced in your short life. You still have a few challenges to meet before you come home, but we have no doubt that you will triumph over these as well. You have so many people rooting for you: you are a very special girl. Your dad and I love you and we are excited to see you continue to grow a little more every day.

Love,

Mom and Dad

Vent #3

13 Sep 2010 Comments Off on Vent #3

by thedenbyclan in Lillian Grace Tags: , , , , , , ,

Jet Vent

Here comes magic number three! Lillian (all 2lbs, 8 oz of her) has been struggling with her current ventilator, so the doctors are going to switch her tomorrow.

There were a couple of scares today involving a certain tiny girl attempting to pull out her tube, but disaster was averted and as I type this she is sleeping pretty peacefully.

We’re also really excited that her feedings are going up!

We want to thank everyone for your support, prayers, good thoughts and positive energy – who knows where we would be without them?

On Being a Level 3 Parent

12 Sep 2010 2 Comments

by thedenbyclan in Lillian Grace, preemies Tags: , , , , , , ,

Lillian with Wires

There is a distinct difference between level 3 parents and level 2 parents. Level 3 is where the sickest and smallest babies go. There are occasionally exceptions to this: when level 2 is full, loud, full term babies will scream throughout level 3. This can actually be shocking as none of the babies who usually should be in level 3 make much noise.

You can tell level 3 parents by their expressions: joyous on a good day, tear streaked or grimly determined on a bad day, stressed on an indeterminate day. We tend to be quiet and completely focused on our babies. There is not a lot of fraternization between the parents: we are so full of dealing with our own babies. We give each other encouraging looks as we pass in the hallway.  In level 3, where each baby is in her own room, your baby becomes a world unto herself. It’s often unnerving to reenter the real world after spending all day with Lills.

Level 3 parents whom I have seen move to level 2 become more relaxed, happy people. They understand how far they have traveled to get there, and are truly grateful to be one step closer to going home. We celebrate with them when we see someone graduating to level 2, praying that our day is not too far in the future.

The parents who went straight to level 2 are kind of like the new level 3ers. They are scared and confused about how exactly they got here. I have twice had  moms cry to me in the lactation room about their tiny babies. Feeling great sympathy, I asked how small: “4 pounds and the doctors say we may be here a couple weeks. How big is your baby?”

“2 pounds,” I mumble, “and we’ll be happy to have her home by Christmas.” It’s hard for me because I want to be where they are so much; I have to remember that their road is as hard and scary: just a little bit shorter.

Under the high stress in level 3, superstitions quickly pop up. The universal one seems to revolve around the parents’ bracelets. In order to identify you as a parent and link your child to you, the hospital issues bracelets — you can never cut it off unless your baby is discharged; it can wear out and fall off, but you can never, ever cut it off. Other personal superstitions spring up about hand washing, time of visit, length of visit etc.. My personal superstition (if it is  really one) revolves around my ride. My dad drops me off in the morning; if he can stay, the day will be fairly uneventful; however, if he has to go and I am by myself all hell breaks loose. I will get hard scary news and have a mini meltdown or Lillian will have an awful day or any number of terrifying things. It does not really happen every time: it just seems that way.

I am slowly beginning to get the pattern to the bad days. I go have a meltdown in the lactation room (usually I am there early enough to have it to myself) Then I go back to be with Lillian. Bad days are impossibly long and difficult. One day at a time is easy on good days — even on so-so days — and impossible on bad days. But on the worst days, when I am not sure I can do this, Lillian surprises me. She reaches out and grabs me and won’t let go, reminding me that for her I can survive pretty much anything.

Born of Frustration

08 Sep 2010 2 Comments

by thedenbyclan in Lillian Grace, preemies Tags: , , , ,

Lillian and her mom

I have never been good with big lessons. The moment someone tells me I ought to do something, I dig in my heels. Patience is a big lesson I have never really managed to learn. The thing about micro preemies is everything goes so s-l-o-w. We make a little bit of progress one day and it’s undone the next.

I seem to be having the hardest time with the little progress aspect of the NICU. I realize that maybe I ought to take this time to learn patience. But since I “ought” to I don’t want to. As Josh astutely pointed out, I am the Veruca Salt of level 3: I want it now!

Her breathing progresses in the tiniest of steps. The main thing is that her lungs make minuscule progress every day. I don’t know how other parents sit like saints at their child’s bedside. I sit there chanting “grow lungs grow!”  I can work myself into a horrible mood in seconds by dwelling on her breathing.

But, some days I astonish myself with how much patience I’ve gained. I don’t watch her alarms, trusting Lillian to work her way out of any “de-sats”, which she does regularly with no trouble. The next day I am made of frustration. Nothing is going fast enough, and I can get obsessive about every alarm beep. I even hear the alarms in my sleep.

Lillian in her Mom's hands

Unfortunately Lillian is her mother’s daughter. As soon as the Doctor thinks she ought to be weaned from the vent, she digs in her heels and refuses to budge. She is almost a month old and already has a determined face. It says, “I am determined to ruin the day of anyone who crosses me.” I am told this is a good sign.

So Lillian and I both wait for her to get big. We both are frustrated by the long road ahead. Hey, at least we’re not alone on that road. I can hold her hand, and sometimes she even holds mine.

My First Mobile Post!

07 Sep 2010 Comments Off on My First Mobile Post!

by thedenbyclan in Lillian Grace Tags: , , , ,

Josh's hands on Lillian

It’s Josh! I just downloaded an app so that I can join in on the blogging from my phone. I am not known for prolixity and my posts will probably be somewhat brief.

Right now I am sitting next to Lillian and she is sleeping – wiggliness is at a minimum.  We finished rounds with the doctors and nurses and cautious optimism and attentiveness seem to be the prescription for the near future.

Until the next time, we hope everyone has a good evening!

Living in the NICU

07 Sep 2010 2 Comments

by thedenbyclan in Lillian Grace Tags: , , , , , , , , , ,

Lactation Room in the NICU with pump in foreground

I have to pump at least 9 times a day. I really cannot have more than 4 hours between pumpings. My day starts at 4 am during the week. I wake up and pump and Josh calls the NICU and we get our morning update. It is usually just her weight and vent settings.

I try to sleep a bit more but am up by 7 am. The pump pieces must be sterilized, hungry moms need breakfast, and cats need to be paid attention. My wonderful ride is there by 9 am to whisk me away to the hospital.

Entrance to the NICU at Memorial Hermann Southwest

Walking down the hall to Lillian’s room is filled with such anticipation. My dad and I go into her room and peek at her. Sometimes we’re lucky and they are changing her diaper which means a much better view. We wait for the nurse practitioner to give us the morning update and then it is time to pump. The rest of my day is spent reading by her bedside, singing or talking to Lillian, assisting with diaper changes, and pumping. Josh arrives as soon as he can after work and we spend some family time together.

Entrance to the Daisy Room

Tuesday is my hardest day. It is grand rounds day. I go and sit at a big table with all the people on Lillian’s team. It feels somewhat like the inquisition at the end of that table with everyone looking at you. I learn all the scary things she is facing in the next couple of weeks. I have learned that it is okay to have a bad day — especially on Tuesdays.

I downloaded an app that allows me to blog by Lill’s bedside. So I expect to be more of a presence here in the coming weeks. I’ll leave the details to my dad. It is much easier for me to look at the big picture. All prayers and good thoughts are always appreciated.

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