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

 

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

Lillian Grace Denby Update: 11/30/2010

Naptime

Lillian Grace is 113 days old today.

Lillian has been in the NICU at Memorial Hermann Southwest for just over 16 weeks; those of you who’ve followed along since she started on August 9th have seen how far she’s come and how big she’s gotten. But 16 weeks in neonatal intensive care is tough not just on the tiny patients, but on their moms and dads as well. Now that Lillian is breastfeeding, the schedule has been pretty grueling — at the NICU first thing in the morning, back til 10 or 11 at night, pumping every three hours when the baby isn’t breast-feeding. The result can be very tired moms and dads. Our NICU staff approach infant care as a family matter — this means they are looking out for moms and dads and assessing them as they assess their babies. So, when Ashley went to the rounds meeting today, she first heard that the NICU team is pleased with Lillian’s progress, very happy about her feedings, and optimistic that the slow and steady respiration plan is working; then, the staff had some orders for Lillian’s tired mom and dad: first, to take the evening and morning off from the NICU, especially wanting Ashley to get some sleep tonight and in the morning when not pumping; and they prescribed a weekly date night for Ashley and Josh. Of course, moms and dads hate leaving their babies — but, especially for lactating moms, sleep is important: tired moms produce less milk.

Echocardiogram

Lillian has resisted bottle feedings up until now; the nurses concluded that she did not like the taste of the fortification they mix in with mom’s milk; tonight, they changed to a different formulation for the fortification — and Lillian ate all 70 mLs (even little babies can be picky eaters). If Lillian continues to feed well at both breast and bottle, she will be able to shift to all oral feeds more quickly; receiving all her food orally is one of her big remaining goals before going home.

For very hard-core baby video fans only: I’ve added a brief video of yesterday’s echocardiogram, so you can see Lillian’s beating heart. Some family members believe this video proves the videographer has gone off the deep end, from obsession to lunacy.

Thanks for your prayers and support!

Vent #3

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

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

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.

Living in the NICU

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.

Welcome to the Preemie Club

Josh and Lillian

Adjusting to the NICU has been relatively easy thanks to the wonderful and supportive staff as well as our families. We are still learning the massive lexicon we need to easily navigate the next few months. Words like “peep” and “sat” take on new meanings. Alarms blare every minute or so; we are learning which ones mean something and which ones don’t. Almost 4 weeks in we feel like we have spent several lifetimes in the NICU. It makes it hard sometimes when we realize there are many more weeks to come.

Ashley and Lillian

I have to say that there are many things I was not expecting about this. I was hospitalized on Friday August 6th with contractions. I had suffered from a stomach bug the week before and was up all night with cramps. I thought it was the bug; I was very, very wrong. The head of the NICU came to sit with Josh and me and told us all the scary things that could happen: 23 weeks is a really bad time to have a baby. Josh and I knew this — we had read up on preemies as soon as we found out there was a chance Lillian might come early. I found out later that in the first weeks the Doctors and staff are as dire and serious as possible. The fact is most babies like Lillian have serious problems. They do not want to sugarcoat anything in order to prepare parents for the battle ahead. Josh and I clung to each other in that moment. It was impossibly hard to hear most of what Dr Mesfin had to say. My job was to get the steroids and the Doctor’s job was to hold off labor long enough for the steroids to take effect. We both did our jobs well.

The first few weeks in the NICU go by in a blur. There is so much to absorb. The first look at our tiny baby was magical. I was terrified. I did not want to fail her as a mom. I had heard how many moms were scared because their baby did not look like a full term baby and was covered with wires. Frankly, I did not notice the wires; I just saw the most beautiful girl I had seen in my whole life. Then there is the pumping, which they start you on immediately.  I view this as my full-time job. It is uncomfortable, stressful and so very important to her well-being. When I am down at 1:00 AM as I pump by myself, I look at pictures of Lillian and feel better (if still very very tired). So, during the day, I sit by her bedside and pump and sit and pump. Josh works so I can sit by her bedside (something I will be eternally grateful for). He comes as soon as he can after work, and we sit by her bedside.

In the past week we have really noticed her responding to our voices and our touch. She will ‘sat’ high, which means she has no trouble oxygenating her body. This is preemie for ‘I am happy right now.’ She is happy on her tummy, when her mom sings to her, when her dad coos at her, and when we can touch her for a few brief minutes. She does not like getting her diaper changed, getting her temperature taken, any kind of shot, or being disturbed. She very much has a mind of her own.The team has told us their goal is to get Lillian home by her due date, Dec 2nd, and we hope this will be the case. It is hard to look that far down the road but we pray for that every night.

We never expected to be members of the Preemie Club but we are starting to realize that this is  an honor. Parents such as Eric from RI and George from Norway have reached out to us. They have provided much solace and comfort. We are starting to think we might make it through this. We appreciate every prayer and good thought more than we can say. We love that people check in on our tough little cookie. We try to live each day with Lillian’s motto in mind: “small but mighty.”