When breastfeeding can't come naturally - World Breastfeeding Week

Like many mothers of premature babies I had the odds stacked against me.  Producing breastmilk would be no easy task but I was told it was of critical importance to the health of my baby who weighed about as much as a bottle of coke.

I was only 25 weeks into my pregnancy. My daughter was not ready to be born and my body was not ready to produce breastmilk. 

My body was in shock.  4+ weeks of bedrest, a traumatic C-section delivery, and some serious internal hemorrhaging meant that my body had other things to tend to.

I had to establish a supply with a pump.  Every 2-3 hours, 24 hours a day.  

Odds meant nothing to me though.  We had already defied some odds and succumb to others.  When I realized that providing breastmilk to Virginia was literally the only thing I could do for her for the foreseeable future, it became my most important job.   An immensely tiring and painful job.

The monotony of assembling the cups, tubes, and plugs, followed by pumping a few drops, labeling bottles with time and date, cleaning said parts, and putting everything away was a far cry from the natural and instinctual experience that I had expected through the breastfeeding process.  Nothing about pregnancy and motherhood at that point was what I expected, but the difference was that by providing breastmilk for Virginia I was providing her with the only natural thing left.  

There were many moments where I doubted my ability to continue to pump.  Clogged ducts, low supply, and stress all made me doubt whether I could continue the 7-8 time a day ritual.  Thankfully I had a wonderfully supportive husband, some amazing nurses and lactation consultants, and a beautiful growing girl to keep me going.  

Then we got lucky.  Virginia turned out to be terrible at handling a bottle.  Like, really really bad. And scary.  She choked, she desated, she turned blue, and she passed out.  But she did none of that when we tried nursing.  It was sort of shocking to everyone, including me and was just what I needed to keep going.  And just what she needed in order to learn how to eat orally.  

For a full year both Virginia and I got to experience the most natural thing for us as mother and baby.  It healed us and allowed us to bond.  Breastfeeding ultimately went beyond the essential nutrition and antibodies that were so essential to her health while she was so very tiny and sick.  She gave back to me just what I gave to her in those early days ... hope and healing.

the results of several months of hard work.

Therapy

Therapy - Unfortunately not the retail kind!  Virginia has now completed 6 months of therapy in the birth to three program and she has truly made some amazing progress in these 6 months.  At her initial evaluation, which was just a few weeks after she was discharged from YNHH,  she was barely able to lift her head off the floor while on her belly, could not reach for objects, and had very little head control.  After that appointment her therapist wrote formal goals for her development for the 6 months following the evaluation.  Virginia has reached every single one of those goals which include full head control, rolling, doing baby push ups on her belly, sitting up independently, eating solid foods, and  grasping and controlling objects with both hands and between hands.  Her newest tricks that surpass these goals include babbling, repeating some simple gestures, feeding herself puffs and toast, and rotating while on her belly.  We are so very happy with her progress and hope that it continues.

Her therapists have decided to increase the frequency of her physical therapy and also add occupational therapy, not because she is lagging behind on her goals but because it is clear that she is thriving with the help of the therapy sessions and she has been responding especially well lately.

Im certain that if her Physical Therapist and Occupational Therapist from the NICU saw her now that they would be truly amazed.  Virginia's therapy file from the hospital was full of observations like severe feeding troubles, sensory issues, low tone, torticollis, trouble finding midline, disorganized motor control, and notably quiet.  Virginia, you have come a long way baby.

big girl

It seems like overnight Virginia has changed from a baby to little person.  Not only is she working on some big gross motor milestones, but her personality is really starting to emerge too.  She absolutely loves seeing new people and stares strangers down until they acknowledge her.  Virginia is full of smiles and excitedly kicks her legs for us, other babies, strangers, and friends.  She isn't so thrilled to be held by people she isn't familiar with though.  

We keep adding new foods to Virginia's repertoire.  Like most people she prefers fruits to veggies, but she eats just about anything we offer her.  She is especially interested in what Heath and I eat and drink.  The downside is that she is now starting to lose interest in her bottles.  She still does great breastfeeding but its getting to be a power struggle to get her to take her bottles.  

We also started giving Virginia "puffs," which she loves.  She doesn't yet know how to get them in her mouth by herself, which leads to some funny mouth acrobatics like in the video below.  

Summer with Moma!

Moma is here for the next 5 weeks!  She came back from vacation with us and we haven't scared her away yet!  We are thankful that she is here to take care of Virginia while we are at work and to give Virginia some extra physical therapy but also to have an extra set of hands and some good company when we are home!  Hopefully her visit will help motivate us to do some things that we have been wanting to do nearby.  So far the list includes: taste testing lobster rolls along the CT coast, taking a day trip to Block Island, going to the zoo, and visiting a local winery.

There have been some other new things happening lately:

Virginia seemed to be eager for for some more flavorful food.  We obliged and got cooking!  She has now had carrots, zucchini and bananas.  She seems quite pleased with the new tastes and we are learning all the things that change (laundry, diapers!, schedule) when meals enter the routine.

We have staring contests ;)

more and more plastic crap baby gear invades our house.  Thankfully we are borrowing or have gotten all of this stuff second hand, because I loathe just about everything about these things other than the few minutes it gives me to load the dishwasher, use the bathroom, etc.  

Flashback Friday

Towards the end of Virginia's stay in the NICU we brought in a disposable camera and placed a sign by her bedside asking her nurses and doctors to take photos with her.  We thought that someday she would want to see photos of the people that took care of her and photos of her "home" for those 4 months.

We finally got those photos developed  last week and by far the funniest picture is below.

In a desperate attempt to get Virginia taking a bottle, I bought and brought in a new type of bottle all.the.time, one of which cost a small fortune.  What can I say, I was desperate.

I'm certain that I drove our nurses and occupational therapist crazy.   I love that they took this photo poking fun at me, but I love even more that Virginia (mid yawn? cry?) seems to be laughing at us.  Her collection of bottles wasn't very funny at the time, but we had a good laugh at this photo when we got it.

food

We have been offering Virginia a little bit of baby oatmeal each day.

I'd say she seems to like it! 

 I admit that I was very skeptical about how she would do with solid foods.  Based on all the trouble we had with bottle feeding when she was in the NICU, I admittedly had low realistic expectations and was prepared for a long process.  Virginia certainly made me eat my words!  She opens her mouth, moves the food around and gets a good amount down the gullet!  There has been no gagging, choking or tight lip refusal; all things she threw our way during those tough excruciating weeks and weeks of bottle feeding.  

We joined a CSA (community supported agriculture) and have a half share for the next 12 or so weeks.  I am committed to feeding ourselves and Virginia healthy and interesting foods from what arrives each week in our box from the farm.  Our first box arrived this week with a whole lot of greens!  It looks like Heath and I will be eating lots of salads for the next week.  We received 3 different types of lettuce, kale, garlic scapes, radishes, and beets.  Hopefully by the time that Virginia is ready to move past oatmeal we will be getting more carrots and beans and less lettuce :)

bottles, bottles, bottles

Its all about the bottles these days. Virginia is taking more and more of her feeds by mouth each day. The past few days she has taken a few full bottles each day and a few partial bottles. She has definitely made alot of progress, but we are still a little ways away from the end goal. Eventually she has to be taking all of her bottles by mouth without having any episodes of choking and dropping her heartrate. These two things will likely go hand in hand. Once she is doing that consistently for a several days she will come home. Sounds pretty simple, right? Unfortunately the suck, swallow, breathe sequence is the most difficult things for preemies to master.

Virginia is up to 5 lb 15 oz and 18.5" long!!! She is getting so big! Our routine each evening consists of feeding her at 6pm, snuggling, reading books, practicing tummy time, getting her weighed, changing her clothes and blankets, feeding her at 9pm and snuggling her back to sleep. She almost always wakes right back up when I put her back in her crib to go home. She is getting smart, she knows that if she wakes up and looks at us with her big blue eyes that we will stay just a bit longer. It is so hard to leave her at the end of the night these days. Its so hard to not be there all day knowing that she is more and more wakeful, that she is doing all sorts of "baby" things. We hope and pray that she will master that complex suck,swallow, breathe sequence and be home with us soon.

We have come a long way

This week marked a major milestone. Virginia spent the first 94 days of her life on oxygen support. On Monday they removed her nasal cannula and she is now free of all oxygen support. Virginia has come a long way. She spent 50 days on the ventilator, 6 days on NIPV, 7 days on CPAP, 5 days on high humidity nasal cannula, and 26 days on 1 liter of nasal cannula.

Looking back on pictures from her first weeks of life we are reminded of all the answered prayers, all of the progress, and truly how far we have come.

Below is Virginia at 4 days old with an endotrachial tube, a feeding tube, 3 IV's, umbilical lines, and monitoring lines.

And this is Virginia today with only a feeding tube and monitoring lines. On her 4th day of life we were worried about a possible infection, praying for the skill of her nurses and doctors to get central line in her tiny arm, and nervously awaiting the results of her second head ultrasound. Today on her 97th day of life we are obsessively tracking her bottle feeding, snuggling and reading books and inspecting all of Virginia's perfect features.

We love holding her fingers....

kissing her forehead...

stroking her hair..

tickling her toes...

and watching her sleep.

Virginia continues to make progress with bottle feeding. She is choking alot less these days and just gets tired while eating. As she gets bigger and gains strength she will have more and more stamina while bottle feeding.

in the moment

As we closeout a wonderful weekend (more on that tomorrow) and an up and down week I am reminded that we do best when we stay in the moment and either enjoy or sometimes merely survive each day. This journey, our life, only gets overwhelming when we think too far into the future, whether that be thinking about the next day, week, month or decade. The moment is always manageable and usually joyous. The future was incredibly uncertain on October 22, 2011 and it still remains uncertain today. What is certain is that there will be tough and scary days ahead as well as many happy and exciting days.

The focus of the week was feeding by mouth. Something that Virginia is clearly going to do on her own terms and on her own schedule. This is true to form for Virginia, and I am quite certain that this will be her personality for a long time and we will love her for it. She started the week by utterly refusing a bottle and scaring just about any nurse that tried to feed her with one. By mid week the doctors ordered a battery of tests to rule out any respiratory, neurological or physiological reason for her refusal to eat. All of these tests and evaluations came back completely normal, thank goodness. We now know we just need more patience. Virginia has not yet coordinated the complex suck, swallow and breath sequence and is just stubborn. By the end of the week Virginia was taking some milk from a bottle for some nurses but not for others and most surprisingly took to her first 2 attempts at breastfeeding like she had been doing it forever. We will continue to be patient, enjoy each day and stay in the moment.