Tag Archives: feeding

The Trouble With Feeding

Tonight, I jumped in a conversation on Twitter. The topic was about colic. Someone jokingly asked if there was colic in the NICU.

And, I remembered.

Charlie was fussy after she was transitioned off of donor milk to 24 cal/oz preemie formula. She didn’t cry, at first, but was incredibly gassy. The excess gas was explained by the removal of the replogle. I was reassured that it would get better.

It didn’t.

The last week Charlie was in the NICU, she finally took the majority of her feeds from a bottle. She sometimes cried after I fed her. I asked the nurses and the doctors if it was normal. I was told it was. This time, the high calorie content was cited for the digestive disturbance.

Things escalated.

About a month or so after discharge, Charlie screamed relentlessly after every feeding. I was told that it was probably colic. Then, the vomiting began.

Because she had reflux (formula had to be suctioned out of her nose if she laid flat), the vomiting was initially attributed to it. Finally, Charlie vomited while we were at the pediatrician’s office. I wiped it up with the many spit rags I carried and tucked it away. As disturbing as that sounds, that was our normal at the time.

The visit wasn’t with our usual pediatrician (she was out of town) and the doctor was ready to send us home. Before we left, she told me what to watch out for in the vomit. When she finished listing off colors and textures, I pulled the soiled spit rag out, showed it to her, and asked, “You mean like this?”

Charlie was readmitted that afternoon.

Pyloric stenosis was ruled out. Her formula was changed to a fully hydrolyzed formula (24cal/oz). She improved. But, she continued and continues to have issues.

Her stomach emptied slowly. She has a feeding disorder due to a combination of oral aversion and possible apraxia. Charlie is still (fully hydrolyzed whey protein) formula dependent.

I constantly tell myself that I’m over it. It is what it is. Other kids and parents have to deal with so much more. After everything we’ve been through, this is such a little hurdle.

However, that is only partially true.

The few tweets I sent out tonight revealed to me (and probably weirded out the other people) how strangely emotional this part of the journey has been.

For starters, I feel guilty that I didn’t push harder in the beginning when my gut was telling me that it was more than colic and reflux. I remember the helplessness and desperation I felt to get it figured out.

Now, after two straight years in feeding therapy, I feel a similar sort of desperation to get Charlie to adequately consume food. I dread meal times. I loathe feeding therapy. I detest the way that feeding and caloric intake is always in the back of my mind. Weight checks are heart breaking and demoralizing.

My hope is that Charlie’s evaluation for the intensive feeding program goes well this month. I hope she is a suitable candidate for the program. If she is, she will attend the program in May.

Nevertheless, I’ve learned, by now, to have a plan B. Plan B is to discuss alternatives with the developmental pediatrician in case Charlie is not a good fit for the program. I have accepted that Charlie needs more help with feeding that I can provide. Now, my job, as her mommy, is to find the appropriate help (and, possibly, fight insurance to pay for it).

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Charlie is a very happy toddler when not presented with food.

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I Confess, I Hate Feeding

I have to say it. I hate feeding. Or rather, I hate feeding disorders. For two and a half years, we’ve been desperate to avoid the g-tube and have managed to do so, so far.

As far as feeding goes, it is a see saw ride between hope and discouragement. I find that Charlie’s feeding disorder affects my relationship with food.

Before all this, I relished mealtime. Now, eating feels more like a mundane chore. I’m no longer excited or enticed by dishes or deserts.

I’ve lost the ability to derive pleasure from eating. It has become a routine like brushing one’s teeth…  something we do to stay healthy and alive.

I blame the change on our struggle with Charlie’s feeding disorder.

Our most recent set back happened at her last weight check. The use of erythromycin has helped significantly with Charlie’s gastroparesis (delayed gastric emptying). Charlie indicated that she was ready to attempt a slow transition to solids.

Not only did she tolerate solids (soft solids), she ate well. We continued to offer her the usual formula but we introduced more solids. At first, it was mostly for practice. But she enthusiastically gobbled the offerings and also wanted to try the food on our plates. We happily indulged her desires.

It seemed like between the formula, what she ate off our plates, and the food we offered her that she was always eating.

When it was time for her weight check, I was excited. I couldn’t wait to see how much she gained. I dared to hope that it was the beginning of the end of her feeding issues.

The nurse placed her on the scale and announced her weight. I gasped. How could she have possibly lost weight?

I tried to figure out the inconsistencies. Was it the same scale? Was it a naked weight? Was the scale zeroed properly?

I couldn’t figure out the missing weight. That day, I called the feeding clinic and let them know that there may be a problem. I wanted to be proactive before it turned into a bigger problem.

The feeding clinic’s dietitian requested that I keep a food log for Charlie. I diligently and meticulously (I have chemistry experience) documented every morsel of food that Charlie ate.

However, I discovered a problem. Charlie eats very slowly and pauses frequently because she is tired. This is why she eats all day.

The dietitian wanted me to break it up into breakfast, lunch, and dinner. But, Charlie ate continuously through out the day and there were no defined meals. I documented everything by day. The dietitian could figure out breakfast, lunch, and dinner.

The results? Charlie consumes 130% of her caloric needs. She also consumes more protein, vitamins, and nutrients than required. As of right now, we are unsure why she lost/is losing weight.

But, there are a few theories.

First, Charlie is extraordinarily active for a two year old. Maybe she is burning more calories than she is taking in.

Second, maybe there is an issue with poor digestion or malabsorption. When she was 100% formula fed, she didn’t have weight loss issues as long as she ate the amount of formula recommended. But, the formula is fully hydrolyzed (broken down) which makes it easier to digest.

It could be none of these things.

Maybe the weight loss was just a random fluctuation or there was an error during the weight check. And, her next weight check will be better.

Her next weight check is in a week. I hope it goes well. I have my fingers crossed that this is just another scare. If not, her follow up with the feeding clinic is the following week.

A sneak peek of Charlie's Halloween costume which she wore this week to Chuck E Cheese.

A sneak peek of Charlie’s Halloween costume which she wore this week to Chuck E Cheese.

 

 


Fall Festival And Time To Fatten Up

We started today off at a Fall Festival at Sky Meadow’s State Park. There was a chill to the air, low lying fog, and the ground was wet. That is precisely why we chose today to go. We knew the crowd would be sparse.

Our visit to the festival was a fun and relaxing time. Charlie was afraid of the baby cows in the petting portion, loved the blacksmith exhibit (as usual), liked picking her own pumpkin, played in the kids area, and enjoyed the food vendor. But her favorite part was a display set up about Chesapeake Bay water shed.

10639600_10101976504940129_9113146869104312045_nThe display consisted of a table with a model garden set up on top. The garden was complete with vegetables, plants, and plastic back yard wild life. Hanging off the side of the table was a sheet that displayed what is under top soil. Under the table (behind the sheet), was a crawl way in which there were plant roots from the above garden.

Charlie loved the crawl way.

The stress of the cows mooing (it was an ongoing sensory thing we had to contend with) and the excitement of all the activities tired her out quickly. We ended up leaving earlier than intended. I had planned on letting her play outside all afternoon.

Our early departure turned out to be a good thing because the home health nurse arrived at our house an hour before her scheduled time. She performed her usual rituals and listened to Charlie’s lungs to ensure aspiration pneumonia does not become an issue, checked her vitals, and weighed Charlie.

Charlie has been eating very well recently. So well, that I had expected a leap in weight gain. Unfortunately, Charlie lost weight according to the weigh in. Not a huge amount of weight, but none the less, weight loss (half a pound).

I have racked my brain in an attempt to figure out where the weight went. I made sure there weren’t any variables between weight checks. We used the same scale, naked weight, and so forth. The only reason I can imagine for her weight loss is that she is incredibly active. Energizer bunny active.

So it’s back on the phone with the feeding clinic for me on Monday. Once again, I have no idea what to do about Charlie’s feeding situation. Who ever knew something like feeding could be this complicated?


I Scream, You Scream, Charlie Speaks For Ice Cream

I had a feeling it was going to be a great semester for Charlie’s speech. I knew in the second week that Charlie’s student therapist understood Charlie. As sweet and cute as Charlie is, she is highly energetic and difficult to focus (more so than most two year olds).  She can be a handful.

By the second week, the student therapist had learned to work with Charlie amazingly well. I was impressed.

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This is what part of the screen looks like when I watch from the observation room.

For most sessions, I sit in the observation room with the other parents and watch the session over the cameras on a computer screen. I did this initially in case Charlie became unruly or melted down. I wanted to be able to rescue the student therapist if needed. Now, I just sit there, read, and occasionally glance up at the screen.

What goes on during speech therapy? A variety of play activities. Each semester, I’m always impressed by the students.

If Charlie starts to run circles in the room, the student therapist patiently says, “Oh, you need to run? OK, lets go to the sensory room and bounce on the trampoline.” While Charlie bounces, the student therapist sings a song about bouncing with her.

In another activity, Charlie pretends to shop and has to ask for each item she wants to put in the cart. In Charlie’s favorite activity, she plays basketball where she has to ask for the ball and to be lifted up to the hoop with “Want up!”.

Last session, she played a considerable amount of time with a fake ice cream cone. I noticed it when I looked up at the screen. I thought it was odd because Charlie has never really had ice cream. She gets the non dairy stuff when we go get ice cream. Not the type of ice cream she was playing with while learning to say “ice cream”.

Later that evening, Charlie, Charlie’s dad, and I grabbed a quick bite to eat. After we were finished, we passed the yogurt store where Charlie gets her non dairy treat. She pointed and exclaimed, “W-want ice cream! Ice cream!”

I was stunned.

We actually understood what she was saying! How did she make the connection that her non dairy treat in a cup was the same as that creamy looking cone she played with earlier?

We were obligated to follow our rule. If Charlie uses her words to ask for something, she gets it. She got her non dairy version of ice cream that evening.

Overall, I’ve noticed significant improvement with her speech. Charlie experiments more with two word phrases such as “Bye daddy!” and we can understand more of what she says.

Feeding is finally moving forward as well. With the introduction of erythromycin, she eats more than two bites, doesn’t vomit, and her reflux is gone. She still has difficulty tolerating some textures and with chewing food. However, I’m relieved that she is no longer stuck.

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I Didn’t Realize It Was Miserable

Thanks to the Parker Lee Project, Charlie received her first case of her new formula yesterday. It has only been a day since Charlie started her new formula but, I’ve already noticed a huge difference. I didn’t realize how miserable feeding had been for us until today.

Charlie has been learning to eat solids for over a year with limited success. Until yesterday, her major source of nourishment was from a partially hydrolyzed whey protein infant formula.

However, this posed two problems that we (her daddy and I) were aware of. First, the formula tasted disgusting so we had to get creative about disguising the flavor. Second, there weren’t enough calories in infant formula to satiate Charlie.  The formula had to be fortified with pretty much any food that flowed through a cross cut nipple.

Honestly, we had no idea what we were doing. But, as long as she continued to grow and gain weight everyone seemed happy with the approach. We (her doctors, her daddy, and I) hoped the spit up, reflux, and vomiting was something she would outgrow.

Feeding had become a complex process of guesswork and mixing of formula with food substances that Charlie was coaxed to eat. She was good about it. Better than I would have been.

But, there was a lot of spit up and occasionally she would vomit for what seemed like no reason at all. We constantly reminded anyone who played with Charlie, “Careful, don’t make her throw up!” Her crib sheets needed to be changed, at least, every two days due to spit up stains. This was our normal.

After her evaluation at the feeding clinic, we learned that Charlie has difficulty with chewing, trouble coordinating the movement of food with swallowing, a sensitive gag reflex, slow gastric emptying, poor motility, and a casein allergy. The gastroenterologist prescribed a specialty formula (a fully hydrolyzed whey protein pediatric medical food with fiber).

There has been a noticeable difference only a day after the switch to the new (and more appropriate) formula.

While it smells gross, Charlie readily eats the new vanilla flavored formula. There is no mixing or convincing her to eat. Plus, she hasn’t spit up or vomited since the introduction of the new formula yesterday morning. Her reflux has improved significantly.

I had no idea how stressful and awful Charlie’s feeding and GI issues were until they improved. It wasn’t until I felt an overwhelming sense of relief when feeding Charlie this morning that I realized how bad things were. I feel somewhat guilty for not making the realization and insisting that the issue be addressed sooner.

As a side note, I would like to inform my readers about The Parker Lee Project. Through the amazing work of the organization, parents in need of medical supplies can apply for the supplies (if available) free of charge. I’m grateful The Parker Lee Project supplied us with thirty days of formula (almost $1000 worth) while we wait for the paperwork to be processed with insurance and the durable medical equipment provider.

Additionally, those who have extra medical supplies that a child has out grown or no longer requires can donate them to this organization. Financial contributions are also appreciated.

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Charlie golfed a little on the Fourth.

 

 


Pumping, Consultants, and Latching… Oh My!

Let me be clear, I am not a lactivist. As long as people feed their child adequately, I don’t care how the job gets done. Life is too complicated to insist that there is only one correct way to do something.

In my situation, breastfeeding did not work out. But, I know many women who have been helped by lactation consultants and were able to breastfeed.

My dear friend, Sally, has asked me to pass along this survey concerning lactation consultants. If you’ve ever breastfed (including if you ever pumped) and used a lactation consultant, please take a moment to complete the survey.

Now that the survey has been addressed, I have a question. I am curious. What were other NICU parents’ experiences like with pumping?

We found a playground with a balance beam to work on Charlie's core strength.

Today, we found a playground with a balance beam to work on Charlie’s core strength.


Finding Coverage For The High Price Of A Feeding Disorder

I used to complain about the hefty price of $23 a can for Charlie’s specialty infant formula. We don’t qualify for WIC and I was told our insurance would not cover it. Until she was switched to another formula at nine months, I had to bite the bullet and pay out of pocket.

Just thinking about that first formula made me wince up until today. It was today that I found out the price of her latest medical food (formula is called medical food when children are no longer infants) and I thought I was going to be sick.

What is a mother to do when her child can not consume adequate nutrition through food but can not afford the doctor’s recommended alternative? There is no choice. I had to figure it out. I knew there had to be a way to get it covered. But, how?

First, I called Charlie’s primary insurance carrier. Sadly, each time I call Charlie’s insurance provider, I hope that the person answering will be friendly, helpful, and accommodating. Not this time. Not ever.

I got a smoke screen. The representative on the phone explained that our drug plan should cover it.

Next, I called Charlie’s prescription drug plan carrier. While I was invited to order the formula through the mail order pharmacy, I was told because it does not technically require a prescription to be dispensed it was not covered.

Afterwards, I called Charlie’s secondary insurance. This time, I was told Charlie’s doctor would have to call before they would even discuss coverage. The person was curt and would not provide any helpful details.

For a moment, I was frustrated and wanted to cry. However, I continued to hunt for a solution. During my search, I discovered many of the medical nutrition companies have pages on their websites that address insurance concerns such as the pages found here, here, here, and here. Apparently, I’m not the only parent who has faced or will face this problem.

I called one of the helplines offered off of a nutrition company’s website. The woman who answered was incredibly helpful in dealing with my insurance company. After an afternoon on the phone with Charlie’s insurance providers and waging a small battle, I found out it is possible to get medical food covered under the Durable Medical Equipment portion of the policies.

Charlie’s prescribing doctor needs to write a letter of medical necessity, supply the needed codes, and speak with the insurance providers. Things are now in his hands. There is a good chance the medical food will be covered.

For some time now, I’ve held on to the thought that the business side of our country’s health care system is shameful. I thought I had seen the worst of it ranging from the uncooperative and seemingly deceptive insurance companies to exorbitant pharmaceutical and equipment prices.

Today, my respect for our country’s health care system has reached a new low. I find it despicable that I’m excited by the slightest possibility I will be able to feed my child the nutrition she requires.

 

 


Today’s Feeding Consultation

Charlie and I made the two hour pilgrimage to the university health system that houses her specialty clinics. Today’s topic of concern was feeding. I tend to be leery of new specialists since our meeting with the physiatrist from another health system. In most cases, like today, being wary is unwarranted.

Today’s feeding consultation was with a gastroenterologist and speech therapist whose expertise is in feeding. For those who don’t know, Charlie has overcome a significant oral aversion. However, she feeds poorly and continues to be (partially hydrolyzed whey protein) formula dependent.

1517637_10101695765129959_3631522303372407994_n_editedAt the beginning of the appointment, we discussed Charlie’s feeding history and GI issues. Charlie was physically examined and her previous test results (swallow study and other imaging) discussed. Later, they watched Charlie eat (as much as she would) foods of different textures and consistencies.  At the end, we discussed what may be the issues and a plan.

From the GI perspective, Charlie has slow motility due to her CP. Her stomach empties slowly and things continue to move slower than usual through her intestines.  She also has a milk protein allergy which is common among preemies.

From the speech/feeding perspective, Charlie does a poor job of chewing. Despite the appearance of a chewing motion, she mostly uses her tongue and sucks food to mush rather than chew it. In addition, she has sensory related issues such as stuffing, a preference for strong flavors, and a gag reflex that is more sensitive than average.

All of these things, hamper her feeding progress.

The gastroenterologist has suggested Charlie stop using infant formula. It is no longer appropriate. Instead, she will start a “big kid” partially hydrolyzed whey protein formula with fiber.  It is 30 cal/oz as opposed to the infant 20 cal/oz. The fiber will help with her motility issue. Possibly, the lower fluid intake will make her feel less full and stimulate appetite.

The speech/feeding suggestion is to go back to using soft foods, easily chewed foods, or finely cut up foods (almost pureed). The hope is she will not have to work as hard at chewing and will ingest more than just a couple of bites. Over time, with work and practice, her jaw muscle strength and coordination will improve. The feeding specialist will send some suggested foods and exercises.

Overall, I was very pleased with how today’s consultation went. I felt like the professionals understood where we were with Charlie’s feeding and are supportive. I didn’t feel pressured to try things (like stopping the use of formula) that Charlie isn’t ready for. Plus, I feel like the treatment plan is realistic and doable. The frustration I’ve felt most recently over feeding has been abated.

Today’s appointment was a step forward after being stuck for some time now. I feel optimistic that Charlie will be a good eater sooner rather than later.

 


Feeding Clinic Ahead

After music therapy, Charlie and I went strawberry picking.

After music therapy, Charlie and I went strawberry picking.

During Charlie’s music therapy appointment today, I received the call. The voice on the other end inquired if it would be possible to bring Charlie to the feeding clinic tomorrow. It was short notice but I didn’t turn down the opportunity.

Tomorrow, Charlie will be seen by a gastroenterologist and a feeding expert. Hopefully, we can get some answers or ideas.

Charlie’s feeding progress is stuck on a plateau. With therapy, her oral aversion and speech sounds have improved significantly. However, her intake of solids is rather lacking. At the age of two, she continues to be (hydrolyzed protein) formula dependent.

I can’t figure it out. Her regular health professionals are out of ideas. Her developmental pediatrician provided the referral for the consultation with the gastroenterologist and feeding expert.

Is her poor feeds due to the silent gag that showed up on her swallow study back in September? Is her stomach bothering her? Why does she not tolerate milk? Is it an allergy? Why does she continue to spit up at the age of two? Is her poor solid feeds CP related? Why is her motility very slow?

I don’t expect all of these questions to be answered tomorrow. I will be lucky if even one of them is answered. What I hope is that ideas are offered, suggestions are made, or a plan is devised. I hate this feeling of being stuck and not knowing what to do next.

Her speech is slowly coming along. Now, it’s time for progress in feeding.


This Preemie’s Struggle With Feeding

In honor of Prematurity Awareness Month, I am attempting to write a post a day. With each post, I hope to address a different aspect of our prematurity journey.

Before having a preemie, I was blissfully unaware of the world of feeding disorders (which are different from eating disorders). I did not know there were people who physically could not eat. That changed the day we attempted to start Charlie on purees.

When Charlie was about seven months old, her pediatrician suggested we start purees. Charlie’s dad and I were excited about the new milestone and spent half an hour deciding on the perfect first food experience in the grocery store. We gleefully rushed home and prepared to feed her.

I tried first and put the spoon up to Charlie’s mouth. She gagged and wretched. I was convinced I did something wrong and insisted her dad try. She gagged and spit up in response to his attempt as well. We were baffled as to what we were doing wrong.

I asked other parents about feeding. I received odd looks as they questioned, “What do you mean you can’t feed your baby?” My concerns were also dismissed as I was told, “No baby likes to eat at first.”

It seemed like online videos were everywhere of everyone I knew who had a baby feeding them their first food. The babies in the videos responded to purees nothing like Charlie. Why wouldn’t my baby eat?

A few days later, I called the pediatrician. After I explained the issue, she misunderstood my concern and gave instructions to be consistent. Despite my best efforts, it just wasn’t working.

I asked Charlie’s early intervention therapist for her thoughts concerning feeding. She gave the opinion that Charlie was not ready because she was unable to sit supported (Charlie had significant motor delays). I stopped the puree feeds and focused on other concerns at the time.

About a month later, Charlie was evaluated by her developmental pediatrician and his clinic. Along with other interventions, feeding therapy was recommended and started. The therapy involves desensitization of her mouth, strengthening the muscles in her mouth, and coordinating the movement of food in her mouth with swallowing.

The reasons for feeding disorders are as varied as the people who have them. It is suspected that Charlie has an oral aversion which may be a result from the intrusive instrumentation placed in her mouth during her NICU stay.

In the beginning, it was a challenge to get Charlie to put food, a spoon, or teething rings in her mouth without gagging. Her progress sometimes makes two steps forward and takes five steps back. There are stretches in which we are overly optimistic and become confident her feeding disorder will soon be a memory. These are followed by stretches that have us revisiting the question of whether it is time for a G (feeding) tube. Much like the rest of the preemie experience, feeding has its ups and downs.

For us, feeding has been a frustrating and worrisome see-saw endeavor. Which is why I am grateful for feeding therapy days like today. However, I have myself braced for a few steps back… just in case.

There are so many huge accomplishments in the picture. She is messy and not crying. She is feeding and smiling.

There are so many huge accomplishments in the picture. She is messy and not crying. She is feeding and smiling.

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The girl loves hummus.

All this happiness is occurring while she is wearing her new orthotics.

All this happiness is occurring while she is wearing her new orthotics.


The Swallow Study

My regular followers know that Charlie had her swallow study on Friday. Since it was her first one, I was unsure what to expect. Surprisingly, it was relatively quick and of minimal discomfort to Charlie. For parents who may have a swallow study in their future (or for those that just want to know what a swallow study is), this is how Charlie’s swallow study (a barium swallow on video) went.

We were escorted back to pediatric radiology by a speech therapist. Charlie was understandably cranky due to the last time she had eaten was four hours ago. The speech therapist explained that I would feed Charlie different textures while an x-ray video was recorded.

I made the mistake of dressing Charlie in a top with metal snaps. It needed to be removed. While I undressed Charlie, the speech therapist mixed barium samples of various textures for Charlie to swallow.

Next, the speech therapist and I put on lead aprons.

After everything was prepared, the radiologist entered and introduced himself. Charlie was seated in a feeding seat and her bottom half was draped with lead. She protested a little.

Charlie quieted down as the study started and I fed her from a bottle. The speech therapist held a flashing toy to make sure Charlie looked in the correct direction while the radiologist concentrated on the imaging. Charlie did well with the bottle and did not seem to mind the barium mixture.

Next, Charlie drank from a sippy cup with my assistance. This proved to be tricky. Charlie chewed on the spout of the sippy cup. The therapist removed the vent and the fluid overwhelmed Charlie (dribbled out of her mouth). However, a few swallows were obtained and we proceeded with the study.

Later, Charlie ate apple sauce with barium mixed in followed by an even thicker mystery substance. The mystery substance is where Charlie started to have trouble swallowing (as expected).

The actual study took about ten to fifteen minutes. The majority of time was spent with the tasks before and after the study.

Before we left, the speech therapist discussed the results with me. Thankfully, there are no problems with the physical structure of Charlie’s throat. Nor, is she aspirating food.

Charlie’s difficulty with swallowing food is due to an overly sensitive gag reflex. It is a residual aspect of her oral aversion.

The study provided us with useful information. It is one step closer to leaving formula in the past.

preemie feeding


It’s Our New Thing

Today is our wedding anniversary. My husband and I have been joking with each other all day. We find it funny we are spending it exactly the same way we did last year… watching Charlie sleep, coaxing her to eat, and diligently measuring her fluid intake.

I try to keep what I write about my husband and our relationship on my blog to a minimum. There are some things I consider too private to write about. However, because it is our anniversary, I’m going to bend that rule a little. I frequently read anonymous posts on preemie sites inquiring about relationships. I’m going to address it with few vague words. These are some of the ways having a micro preemie has affected our relationship.

The first thing I noticed was that I saw my husband stronger than I had ever seen him. When I fell to pieces after Charlie’s birth, he took the reigns. He wheeled me to the NICU to meet Charlie. He bragged about her to strangers while I stood back and secretly hoped that I would not have to talk. After all that, I see him differently now. I know he has courage and strength within him that previously went unacknowledged.

Next, we had very different coping styles when Charlie was in the NICU. Despite our best efforts to be sensitive to one another, there were a lot of misunderstandings between us due to this. We had to consciously make the effort to communicate. Especially, during the times that we were short with one another.

Finally, what happened to us was traumatic. We both had different ways of surviving and bear different scars on our psyches. There are many powerful emotions and real fears involved in raising Charlie which cause irrational conflict. Sometimes, we need to take a few minutes to cool off (which is very difficult on occasion) and proceed to talk it out. Usually, once we understand the other’s position we can construct an agreeable compromise.

Marriage is not an easy endeavor for anyone. Having a micropreemie further complicates things (as any trauma does). This morning at 2 AM, my husband strayed from our discussion of Charlie’s feeding problems (we now know it is not a stomach bug) while we changed her vomit covered sheet to say “Happy anniversary”. I smiled back pleased he remembered and because non ambitious celebrations have kind of become our new thing.


Poor Baby

It is no secret that Charlie has a history of not being the best eater. The combination of an oral aversion, reflux, poor motility, and intolerances have made feeding unbearable at times. Yesterday, things were further complicated with Charlie’s first illness.

Charlie went on feeding strike after yesterday morning’s bottle. It was an awful feeding. She fought most of it (which she does at times). As the day progressed,  she showed signs that something was obviously wrong. I did what I usually do during times like these… she went to the doctor.

After a day long affair, it was noted that Charlie was running a fever. Was she sick or was it due to teething? Is this latest strike due to her having a stomach illness? Is this a feeding strike due to pre existing issues?

Time will help us sort things out.

For now, my job is to “keep her breathing and keep her hydrated”. On Monday, she will be reevaluated and the plan of action revisited using data gathered over the weekend. Hopefully, she will be better by then.

In the meantime, Charlie will be resting. Today’s ongoing slumber with intermittent feeding attempts is very reminiscent of her days in the NICU. Each bottle battle she and I have leave me feeling sorry for her. Poor baby.

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This was taken of Charlie playing at the library earlier this week.


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