Tube-feed, Pump-feed, Will I Ever Breastfeed? part two

Will I Ever Breastfeed Regina Knabe

In honor of World Breastfeeding Week, I’m participating in Mothering.com’s Blog About Breastfeeding event.

Read part one of this story.

Finally, two surgeries and countless procedures later, we were home from the hospital and our whole family was together. We settled down into a routine and that’s when the breastfeeding reality sunk in. When he was first born I kept thinking how many hours had passed without nursing. The hours turned into days. Before I knew it weeks had slipped away. Now months. Months. Is it possible to breastfeed a child that hadn’t nursed or taken a bottle after this long? How much longer would it be?

 

I was still doing oral stim exercises. Also, during all his daytime feedings, I put a pacifier in his mouth and held him at my breast. I hoped that he would make a connection: sucking + at the breast = full belly. It was probably crazy but I did it anyway.

 

We had our first breakthrough at about three and a half months when he finally passed a swallow study. I knew he would pass because his voice was back. This meant he was no longer aspirating. The occupational therapist said “congratulations, you can now give him food by mouth.” Um okay. Is there more? I mean, I know kids don’t come with a manual but I thought maybe with THIS kid I’d at least get a couple hand outs. Something.

 

When it was time for his next feeding (and I still don’t know why I didn’t question the feeding schedule thing having nursed on demand for two and a half years) I happily and hopefully lifted my shirt. Crickets. Nothing. He looked at me like “what’s that.” For the next two weeks I tried everything I could think of to get him to latch onto my breast.

 

  • stroke his cheek
  • pull down his chin
  • shove the breast in
  • hand express some milk into his mouth
  • stimulate my nipple so it would be easier to latch on to
  • put my finger in his mouth and stroke the roof of his mouth
  • put a pacifier in his mouth and once he started sucking switch to the breast
  • and about a million other things that didn’t work either

Nothing seemed to work.

It was time to accept the fact that my son and I would never share the bond of breastfeeding.

I raised the white flag and told my husband that tomorrow we should go shopping for bottles. “Are you sure” he asked. I felt like a quitter, a failure. I thought maybe with a bottle he would latch on better and eventually eat with his mouth in a “normal” way. That was the goal right? Not breastfeeding, eating with his mouth rather than the tube drilled though his stomach.

 

Then it happened. It was a Sunday evening, hubby was bathing the two older kids and my neighbor was over. You know those moments in life in which something huge happens and you remember every detail. You know where everyone was standing and what color shirt you were wearing – everything. Trace, now four months old was getting fussy. I was distracted by conversation with my neighbor. Conversation about how to bottle feed. I was embarrassed that as a mother of three I had no idea how to give a baby a bottle. He got a little fussier, then even more. So without thought, like I had done for two and a half years prior, I grabbed a pillow, sat on the couch, lifted my shirt and put my baby to my breast. Before I could even respond to my own actions it happened. I felt a tiny suckling sensation at my nipple. Could this be real? Both my neighbor and I stopped wide-eyed mid-sentence. I wanted to shout to my husband, but thought better of if. Go! Go get him I softly pleaded – hurry!

 

He rushed in and joined us with tears of joy. “What does this mean?” my husband asked. At first I shook my head no, not really sure what it meant. But quickly smiled, forgive the phrase, but a “shit eating grin” type smile. Oh yeah, we are breastfeeding now baby. Before I could even finish my thought, my baby was fast asleep, too tired to finish.

But this teeny tiny little latch was all I needed, it was on like donkey kong!

 

With no clue how to make this transition, I jumped in the deep end head first. The next day I pushed back his tube feed and offered the breast – nothing, so I feed him with the tube and feeding pump. Later that day, the same thing again – nothing. But I knew it was possible. The next day I waited a very long am-I-doing-the-right-thing hour past his feed time and offered the breast – he latched! He was starving and tired and frustrated but he latched. I let him “try” for a couple minutes then tube fed him because I felt like he was suffering.

 

No one had information for me – friends, family, doctors, nurses, surgeons, occupational therapist, speech therapist, Le Leche, other “heart moms” or even good old google. So I just kept doing what felt right.

 

Everyday for the next several months we made progress. Not all of it forward progress, a lot of one step forward, two steps back. My nipples hurt, this was so different from starting with a newborn. It hurt so bad I almost gave up more than once. How could I consider giving up after coming this far – oh the guilt. He and I were both learning.  He was learning that food came from my breasts, comfort came from my breasts. And while I have no way to prove this theory, I believe he knew that love came from my embrace and my breasts.

 

We made a lot of mistakes. For example, after the G-tube was changed to a MIC-KEY or button (like a little port in which you can plug the tube in to) no one told us that stomach acids would eventually wear away at the the saline inflated balloon holding the button in place and it would therefore fall out. Once, we feed the bed instead of our baby because the tube wasn’t plugged in all the way.

 

He remained on a continuous pump feed at night although I still had to get up and pump. I hated pumping less now because my son was nursing. Wow it felt so great to say that my son is breastfeeding. Once he was completely breastfed during the day, around 8 months, I started to conquer the nights.

Boy did I screw that up at first.

 

I assumed that since during the day he was nursed when he got hungry that he would wake up at night when he felt hungry – wrong. He had been sleeping through the night since birth. Not because he was some rock start baby but because of the continuous feed. So that first night, he slept until five am and woke up famished. He then proceeded to nurse every hour for the next two days. Clearly I had to rethink my approach. So I shortened the continuous feed and nursed later into the evening and earlier in the morning. It was hard work and there were many times I just wanted to plug him in and go to bed. Slow and steady we conquered the continuous night feed until finally, just before his first birthday…

my son was completely breastfed.

 

My son was breastfed. I actually wrote a letter to the charge nurse and neonatologist that rolled their eyes at me and agreed with a completely fake smile when I said we would nurse. I didn’t send it – chicken.

 

Trace nursed for another year while we transitioned into solids. He weaned just before his second birthday because he “dwank aw mine mik.”

breastfeeding success

 

I still feel guilty when I think of how many times I almost gave up. I’m tenacious and goal driven but still wanted to throw in the towel. Every time I wanted to quit my baby just needed a little more time – a week, a day, an hour. Can you imagine that 60 minutes can make such a huge difference for you and your baby.

 

This is our story but there is a deeper message. Maybe for you that message is don’t give up on your baby. Perhaps the message is seek support or give support. Be an example to others but tell the truth. Breastfeeding is not always unicorns farting rainbows. Support your sisters and if one of them makes a choice different than yours, support that too.

 

 

 

~ Regina


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Tube-feed, Pump-feed, Will I Ever Breastfeed? part one

Will I Ever Breastfeed Regina Knabe

In honor of World Breastfeeding Week, I’m participating in Mothering.com’s Blog About Breastfeeding events.

I ran out of the room crying when the nurse asked if I had any questions. Seriously, who does that? But there I was sobbing and shaking, nine months pregnant with a baby that had a rare cardiac condition called Shone’s Complex. Do you have any questions? They try to prepare you for what’s to come. They had just taken us on a tour of the “regular” NICU although, I’m not sure what’s regular about it. The nurse liaison was now showing us the Pediatric Cardiovascular Intensive Care Unit (PCVICU). Ok that’s a mouth full, but not even close to the list of “vocabulary” words we would soon learn. All of which meant your baby has a booboo on his heart. Do you have any questions? Shouldn’t I have questions? We walked slowly down the hall. Large sets of glass doors separated us from about a dozen tiny miracles as the nurse explained each baby’s corrective surgery. To be honest, you couldn’t see much baby through all the “stuff.” I know I should have more questions. Like “why is that machine breathing for that baby?” But that wasn’t what I was thinking. As we came to the last patient’s room, my own heart felt weary – it couldn’t decide if it should melt or race and it did a little of both. Then she asked, for the last time that day, “do you have any questions?” I wanted to scream my one and only question, but instead a ran out crying. My Husband met me in the waiting room, swept me up into his arms and kissed my forehead. He held me tight as I whispered through the tears

how will I be able to nurse him with all those tubes, wires, monitors and meds?

 

There it is, THAT was my question. I felt so selfish that all I could think about was holding him and nursing him. Shouldn’t I be thinking about all that statistical data on his shortened life expectancy, future surgeries or how I will explain this to my other two children.  Shouldn’t I be comforting my husband that was also trying to process all of this? This question, at this moment is where our breastfeeding journey began.

 

Trace, which means courageous, was born a couple weeks later. An unmedicated vaginal hospital birth that I fought hard to have. “They” the ones with the blue gloves, took him for assessments before I could put him to the breast. I was sent to a recovery room. I can’t decide what’s worse: being in a recovery room without my baby or the moment when the nurse came in silently, made no eye contact and wheeled out the bassinet that would have held my little one.

 

I promptly called the NICU where he was being assessed and quit matter-of-factly explain that I was on my way to nurse my baby. They politely said “not yet.” I called again… and again. Each time they grew less patient with me until a team of surgeons arrived in my room. Finally, someone that would listen. “I need to feed my baby” I repeated. To which they replied:

we need to save your baby

The Doctors gave our son a zero % chance of surviving without surgery. It was time to refocus my breastfeeding energy.

 

Nothing prepares you! Not the tour. Not the surgeons’ explanations. Not the nurse liaison’s descriptions. Not the nurse that buzzes you into the PCVICU. Not any of the staff that look at you with sad “here comes a new one” eyes. NOTHING! The first sight of “franken-baby” truly takes your breath away.

When Will I Breastfeed post open heart surgery

 

They gently explain each tube, each IV or catheter, the monitor, pumps, medicine, etc. My child was being kept alive by being connected to an entire room. THEN they explain that if all goes well, it will be about a week until I can hold him – A WEEK!

 

Um, how can I nurse him if I can’t even hold him?

 

Bam. Pow. Slap. Hello!

Was I not paying attention? For the first time it occurred to me that I may not be able to breastfeed my baby. So I started asking – how am I going to breastfeed him? and everyone had the same wide-eyed, full-teeth-smile, and answered – “we’ll get you a breast pump!” I felt defeated.

 

I pumped. I cried. I pumped. It hurt. I pumped.  

 

They discharged me and I was lost. Now what? So I “moved in” to the surgical waiting room. It was as close as I could get to my baby and that pump. I slept on two chairs pushed together. I used my peri bottle in the public restroom – how fun (read.with.sarcasm). I spent the next week watching a machine breathe for my son and… I pumped.

 

Once the catheter in his belly button came out (at the excruciatingly slow rate of something like 1 mm per hour) I was able to hold him. I ripped off my shirt, held my baby skin to skin and cried. Finally I thought as tears dripped off my face onto his bloated little body still attached to numerous tubes. Now that I could hold him, surely I could do the one thing that no one else can do for him – breastfeed.

 

I was wrong. Again. When he was able to tolerate food at a little over one week old, I tried to nurse him. The first few attempts didn’t go well. But neither did the first few attempts with my first child, so I didn’t give up hope. He finally latched on – this was better than birth (you birth junkies know what I’m talking about). He fell asleep after only a minute (at best). The nurses explained that “heart babies” can have a weak suckle and get fatigued from nursing. This information didn’t hurt nearly as bad as the tone with which is was delivered.

Was there anyone who believed I could nurse my baby?

 

Each time he poorly latched on for a few seconds or a minute there was something horrible happening – no one knew. The surgery successfully repaired the coarctation or narrowing that was blocking the blood from passing through his heart. But, at a small cost. Unbeknownst to any of us at first, he had injury to his vocal chords. When a person swallows, the vocal chords close to protect the airway. When Trace swallowed, he was aspirating breast milk into his lungs. All I could think about for the last month was breast feeding and now the thing I most wanted to do was hurting my child. There was to be no breastfeeding at this time.

 

Over the next week he made vast improvements from a cardiac standpoint. However, made no progress from a swallowing/feeding standpoint. So he was transferred out of the PCVICU and into the NICU where we would wait for his condition to improve.

 

There are many stories I could tell entitled “adventures in the NICU” or “mishaps in the NICU.” I could tell you how challenging it was to be hundreds of miles away from home. How much I missed my 2 and 3 year old (who stayed with my parents). How my brother and staff were doing a great job running my business while I was away. Or how my husband had to continue to work throughout all of this. I could tell you about the days when I would go sit in my car, in the parking garage with the music up loud and just scream – and resolve by saying to myself “at least he’s alive.” But this story is about breastfeeding. I should tell you about being the first person to ever room-in in one of the largest NICUs in the southeast because that speaks to my stubbornness.

This is a story where being stubborn is a good thing.

 

So we waited. I pumped. My son was fed with a tube that went in his nose and down past his stomach into his intestines. Thereby reducing the risk of spitting up and aspirating it.  We waited and I pumped. I quickly developed a love/hate relationship with the breast pump. I loved that it help get the breast milk from me and to my baby while simultaneously hating that it was between me and my baby. Each time I pumped I knew we were getting further and further away from breastfeeding. How long can a baby go with absolutely nothing in his mouth until he loses his suckle reflex? (I hated that pump).

NJ tube motherhood university

 

Then someone arrived with a less than optimistic answer to that question. The occupational therapists gave us lots of statistics. She droned on and on, I didn’t want to listen. The neonatologist said all of the same things. Another OT came in – how could I escape this tag team of bad news. Maybe this one said it differently. Because this time instead of hearing “it’s likely that your kid will never eat” I heard “babies that don’t have things in their mouths may develop an aversion to eating.” Did you hear that – a ray of hope! Maybe you missed it, let me spell it out: if “babies that don’t have things in their mouths may develop an aversion to eating” then in my mind, babies that DO have things in their mouths may NOT develop an aversion to eating.

Watch out, I’m a Mom on a mission!

 

I learned everything I could, I befriended every employee in the hospital (well sort of). Oral stimulation – that’s how I would teach my baby to breastfeed. I hopped onto “google university” which didn’t look promising. I visiting the OT department. I got hand outs and instructions. I practiced. They said do oral stim exercises a couple times per day, I kept my fingers and pacifiers in his mouth constantly, unless of course I was pumping. But he still needed to heal those vocal chords. By the way a baby with vocal chord injury can’t cry, air comes out but no sound, it’s awful.

 

A couple more weeks went by with no improvement. I grew to hate that damn pump. One day in the pumping room, I was massaging a clogged duct and really complaining. I hate pumping. I’ve been here a month. I have a clogged duct – again. I hate pumping. Another Mother glanced at me as if to say “stop whining.” I was ready to let her have when she said with the most humbled softness to her voice “my baby has been here for four months, pumping is the only contribution I can make to her well being.” Well that put me in my place, I needed to hear that. It made the pumping a little easier, which I would need for what was coming next.

After being out with a breast infection, I came in to this. The nurses did this to hold his pacifier in - ugh!

After being out with a breast infection, I came in to this. The nurses did this to hold his pacifier in – ugh!

 

All of the doctors and therapists agreed. No one knew how long it would take for the vocal chords to heal. It was time to think about a long term solution to my son’s feeding problems. Two words made me feel completely defeated: feeding tube. UGH!  He would also have a surgical procedure called a Nissen. They would take a portion of stomach tissue and wrap it around the base of the esophagus to create a one way valve. Therefore, nothing could be refluxed or spit up and then aspirated. Fine! At least this meant I could take him home. I knew once I got him home things would get better, right?

 After G-tube surgery motherhood-university

 

We would spend yet another week in the hospital after the g-tube (feeding tube) was in place. We were trained on the proper usage, care and maintenance of the feeding pump/g-tube and how much to feed him. Don’t forget the car seat class – really, it’s our third child – just let us go home!

 

I longed to breastfeed this child. I had exclusively breastfed our first two children. Nursing is what I knew. Breastfeeding, for me, is all that is right in the world. It is love. It’s that joyous connection between mother and child that is otherwise inexplicable. Breastfeeding is the thing that only I can do for my baby. It is ours. I refused to think that Trace and I wouldn’t have a nursing relationship.

Read the conclusion of Tube-feed, Pump-feed, Will I Ever Breastfeed? in part two.

 

 

~ Regina


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