The Ink on the Pages (from his caringbridge)

It came today in the mail, the big thick envelope containing Silas' CDSA evaluation. I read every word. One thing reading this made me realize is that I need to get my organization together and create binders for each of my children. I need to get paper copies of their reports, overall health, and visits. It's important, especially for Silas.

Puzzle Pieces (from his caringbridge)

I spoke with genetics today. Answered lots of questions. We have a genetics appointment August 6, 2013 at 9am here in Wilmington. We were thinking we would have to travel to Chapel Hill but the Satellite Clinic is running again :) Yay!

One of the areas touched on, the question of whether my mother actually has neurofibromatosis, seemed of particular importance to the coordinator. As did the fact that my mother, sister, myself, and Clara all have freckles. She also requested Claras's neurological evaluations and results and my pregnancy records. She asked if I ever had an NF screening. I have not, and said the Doctor may wish to examine me as well. This seemed of particular interest to her.

The conversation lasted at least an hour. Glad I could offer good information and still willing to do whatever it takes to help my son.

Our Long Road to Breastfeeding: part 4 (from his caringbridge)

This is not meant to shame, guilt, or upset anyone. Some may find it controversial, offensive, or crazy. Some may call it a myth. But for those who wish to understand, share in our experience, and understand how the evidence ties in with our son's story, please continue reading.

Passing the Litmus Tests

Remember those transfer weighs we were doing in Norma's office. Here is the proof we needed that Silas had in fact learned to breastfeed. Our initial transfer amount was 8/10ths of an ounce, or 0.8 ounces, at 4 weeks old. At his last transfer weight during the Mother's Milk Club during his hospital stay which brought about breastfeeding, he transferred 5 ounces at 3 months old! Proof!!

The next test came at his 4 month check up. Had he gained weight? Had he grown in height and head circumference? The answer: a resounding YES! In 30 days Silas had gained 39 ounces. From months 3-6 he gained 5 lbs (crossing from the 10th% to 50th%) 3 inches in length (crossing from 3rd% to 5th%), and 6 centimeters of head growth (crossing from -4 to -3 z-score)! While being supplemented with formula, we actually saw a stagnant period from months 2-3 where head growth was negligible. Once we began breastfeeding exclusively, Silas began crossing percentiles on ALL his charts.

If that were not evidence enough, the developmental progress continued. In combination with physical therapy, Silas has since learned to reach for and track objects, laugh, sit supported, and correct his head. These are all things he could not do before he began breastfeeding exclusively, and all signs of neurological development.

Oh, and one last good result from learning to breastfeed, Silas has been off reflux meds since 4 months of age. His reflux which included projectile vomiting and crying from tummy discomfort, is undetectable.

It wouldn't feel right to close this post without saying thank you to Norma, LLL, Mothers Milk Club, Heather and Dani at NHRMC, Kacey and Renee at Oleander Rehab, and Dr. Archer plus all the specialists who encouraged us, believed in us and refused to give up on us. We would not be successfully nursing today without your help, support, and prayers. Thank you!

Breastfeeding for us may never be perfect, but we are beyond grateful for our journey, bumps and all.


A few key articles about brain development and breastmilk:
 http://www.indianpediatrics.net/mar2003/mar-213-220.htm
 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2939272/
 https://www.iser.essex.ac.uk/publications/working-papers/iser/2010-40

Our Long Road to Breastfeeding: part 3 (from his caringbridge)

This entry is not meant to cause shame, guilt, or upset anyone. Some will think it controversial or absurd. Some will dismiss it as myth. But for those who wish to understand, appreciate, and hear the evidence and how it ties in with my son, please continue reading.

Total Takeover!

Silas learning to breastfeed, FINALLY!, was not the end-all of our issues. I still had to manually untuck his lip, work on finding the best position for him, nurse him very often. Funny thing about that, even though he was 3 months old when he learned to breastfeed, he nursed like a newborn! Why? Because developmentally that's exactly where his breastfeeding relationship was at. So we nursed every hour, on the hour. I untucked lips, did stretch exercises for his cheeks and top lip. Norma and I worked on proper positioning and we dealt with over active let down from the drastic sudden supply put on by this newly nursing baby. I was up most nights 4 and 5 times a night. I watched as diapers made transitions. We did transfer weights at Norma's office and marvelled. And most of all we hoped, crossed our fingers, and prayed this was the real deal, and vowed to conquer our struggles when they arose.

Enough of that, get to the good stuff already. I know. I will.

The 24 Hour High

Within the first 24 hours of Silas being solely on breastmilk, a drastic change occured. That lethargic baby started waking up. I remember the first time he "saw" something, really saw it, studied it, wanted to touch it. He was laying in the crib in the hospital room and there was a musical mobile. I remember how just the day before he had acted disinterested, but this time his hand went up and he opened his mouth. It was the first time I had seen him RESPOND to anything.

The lactation consultant at the hospital who ran the Mothers Milk club heard we were there, knew our struggles, and came by to visit with us. She walked into the room and I swear I had to pick her chin off the floor. "He doesn't even look like the same baby" she said. I would hear this comment from others in the days and weeks to come. I just smiled, amazed and hopeful.

Then There Were Two

Ever the realist, I kept waiting for the ship to sink, we were two days into our new found relationship, and I was still an emotional mess. This day brought with it two unique efforts and changes, small but beautiful. My son opened his fist. Since birth the majority of his life was spent with clenched fists. We didn't know why, but on day two of soley breastfeeding, his little fingers began to uncurl and open. And even more surprising, he noticed them for the first time! I sat and played with his hands, counting his fingers, singing to him, tickling his palm, and watching as he wrapped his wingers willingly around my own. Perfect progress..

And It Just Gets Better Everyday From There

As if those weren't enough proof that breastfeeding was making a drastic difference in my son's life and neurological health, in the next four weeks we caught these milestones on camera:

1. Lifted up Head and LOOKED around.
2. Put hands together.
3. Made eye contact.
4. Put hand out to touch mommy's face and hand.
5. Rigidness GONE.
6. SMILED!

The transformation was remarkable, mind-blowing, and miraculous. We may never know what finally clicked, but I am so grateful we persevered and can share this story, but wait- it's not over yet. If these milestones aren't enough evidence for the link between breastmilk and neurological development, tune in for part 4 of our story which includes growth records, continued milestones and a current photo of my beautiful exclusively breastfed baby boy!

Our Long Road to Breastfeeding: part 2 (from his caringbridge)

This entry is not meant to shame, upset, or cause guilt. Some will be uncomfortable, label it controversial. Others will call it myth and dismiss it. That's okay. But for those who want to understand and listen to the evidence and how it ties in with my son, please continue reading.

The Kick In The Head & The Pain Relief

Silas came home on August 12, 2012 at almost 2 weeks old. He went in for his follow-up weigh-in on a Friday and he had lost more weight. He was still a very sleepy eater and tired quickly. His Pediatrician prescribed formula supplementation immediately. And immediately, I began seeking alternatives. Having nursed 2 children already, I knew there had to be other options.

On Saturday morning, I attended a la leche league meeting with my friend who has twins and I told her what the Pediatrician said. She introduced me to Norma, an ICBLC who has been a God-send. Norma told me how to separate the hind milk and fore milk using my own pumped milk and feed it to my son. He went back for a weigh-in on Monday and he had gained a good amount of weight! The Pediatrician asked if he was doing well on the formula and I shared with her what we had done. She said she didn't even know that was possible. One point for breasmilk, formula zero!

When I came home from the hospital, I had to return my hospital-loaned pump. To rent a similar kind was going to cost me $60 for 60 days. Instead, I met with Norma at our local office and was able to loan one, for free, through our local WIC program. By the time the appointment arrived, Silas was 4 weeks old and because I didn't have a great pump at home, I was having no choice but to supplement, unable to maintain my supply with pumping alone. At that appointment, Norma didn't just pass me a pump and send me on my way. She talked, listened, and helped me work on latching Silas at breast. We made observations about his demeanor, position, appearance. We weighed him, attempted to latch him, and weighed him again. We discovered he wasn't transferring enough milk to be effective. We scheduled another meeting.

At the second meeting we worked with a shield and supplemental nutrition system. He still was not transferring a ton, but it was small progress, enough to keep me going. The new pump was helping but he was still having some formula. By now he was 8 weeks old. Here is where we became concerned and things started adding up. I am going to try and detail our observations as best I remember them.

1.) Low amount of transferred milk indicates poor latch/inability to feed effectively which leads to exhaustion

2.) Uncomfortability causes pain, inability to position baby properly, and upset.

3.) Feeling inside baby's mouth with gloved finger reveals high palate, tongue motion abnormalities, unbalanced suck ability, tight upper lip frenulum, possible tongue tie. Could explain symptoms above.

4.) Baby is clench-fisted, rigid body, curled posture. Could indicate delay.

5.) Baby drools out side of mouth, does not stay awake for full feeding, makes clicking noises while eating, tucks in lips which creates improper seal/latch on breast and bottle, which further aggravates poor feeding issues.

Because of all these things, we decided to ask for Silas to be referred to an OT for suck training and further evaluation. We continued to work with his latching, nursing, and widening the base of his bottle nipples to widen his latch. Some days he had a feeding or two that were great, other days he acted like I was the plague in human form. To say it was trying is an understatement, exhausting, mind-boggling, defeating sums it up better. I felt like I was failing him as a mother. We had no idea he had a neurological condition compounded by an intolerance to formula and a possible (still undiagnosed) tongue tie. We just knew things looked bleak.

So, the Pediatrician and I agreed to pursue the OT evaluation. Enter Kacey Trout, a wonderful and very experienced therapist who could shed some light on my son's feeding issues. At the very first visit she discovered his tight lips, small chin, and possible tie. She sent me home with exercises. I did them religiously. Silas began nursing consistently once or twice a day. I continued weighing him but he still wasn't transferring enough. We continued to wean him off formula. Things were progressing, even when they should not have. He was still overly exhausted, a *sloppy* bottle feeder, noisy when at breast/bottle, and rigid.

Just before his three month birthday, Silas stopped eating. He refused his bottles, wouldn't nurse, and became very lethargic. His wet diaper count was down, his soft spot was sinking. I took him to the ER. We were admitted. We met with a GI about his uncomfortability and reflux. We met with and had assistance from lactation consultants every shift and were able to get him latched. It literally felt like the proverbial light bulb moment. Something clicked. I wasn't doing anything I hadn't done before. But for whatever reason, my son could all of a sudden breastfeed. It was nothing short of a miracle and to this day, there is no explanation. After 5 days of working with lactation every day multiple times a day, having a swallow study and barium contrast study completed to check his reflux, and getting that under control, we returned home happily breastfeeding and formula free. But this is just the beginning of the story, and this is where it gets good, really good- so keep reading.

Our Long Road to Breastfeeding: part 1 (from his caringbridge)

This entry is not made to cause guilt, hurt, shame. Some will likely feel it is controversial, others will dismiss it as myth entirely. That's fine, but for those who want to understand the link, the evidence, and how this ties in with my son , please keep reading

The Hospital Days

During the very first hours and days of my son's life, he could not be with me due to his fragile condition. I could not pump milk due to the medication they had shot into my system to keep my pre-eclampsia from causing seizures. I could not even sit up for the first 24 hours following my c-section. I had to wear compression stockings because I was unable to move. I had a catheter. It was impossible to even go to the nursery to see my son. So, instead of being latched at breast following his birth, he was whisked off in one direction and I in another. Like two ships passing in the night, only a brief moment of recognition. His first 24 hours he was given formula in a feeding tube. They had already determined he could not take a bottle and was exhausting himself trying. On August 1st they brought in a breastpump and lactation consultant. I began pumping little bits of colostrum for him. They would give this first before following it with formula. In addition to the feeding tube he was on an IV drip with glucose and a broad spectrum antibiotic. They thought perhaps he had an infection, when the magnesium should have been out of his system and he still wasn't *sprucing up*..

On August 1st I took my first steps, was able to have my catheter removed, and be wheeled to his nursery window. I was not allowed in yet to hold him, I was still weak and wobbly. I continued to pump every 2 hours and pass his milk to the staff. By that evening I was pumping 30ccs some of the time. I was making enough that he could not have the formula every time.

On August 2nd I walked to the nursery on my own and was able to go in with my husband and we held his fingers and touched his feet for the first time. Up to that point, all the touch he received was by hospital staff. That evening he was stable enough to come out of the warmer and I got to actually hold him for a brief few minutes.

On August 3rd they allowed us to try giving him bottles of my pumped milk. He had a minimum required feed amount, and whatever he did not take in the bottle was fed through the feeding tube. We continued on like this 2 more days.

On August 4th they removed his feeding tube. He was warm enough to not need the warming bed as long as he was bundled, and his sugar and breathing had normalized. They brought him into my room. I admit it, after enduring all this I was terrified. I tried to latch him that afternoon with the help of lactation. They told me his mouth was just too small and he was just too little yet. I cried, but later that night by myself, I was able to latch him. He nursed for the very first time. It lasted about 2 minutes before he fell asleep. But those two minutes were enough to give me hope. I continued to offer the breast, but he was just tiring out too fast. I stopped trying and resigned myself to pump for him until he could latch.

At midnight on August 5th they circumcised him in preparation for going home soon. He began having cold spells and oxygen issues again. He had only been in our room for about 12 hours. He didn't come back after the procedure. At noon that day, the NICU staff had a consult about my son. Not long after, on the day we were supposed to be going home, we were moved to the NICU. I cried. I was terrified.

The monitors went back on. The feeding tube went back in. The bed was now an isolette with windows where we could slip our hands in to take his temperature, touch him, and change him. I went home and tried to sleep. Leaving him there alone was the most difficult thing I ever did. I cried and cried until I finally fell asleep. But I had 2 other kids and I had already been in the hospital 3 weeks counting the time before the emergency c-section was performed. They needed me too, and Silas needed me to be rested.

Silas was two weeks old when he came home. We were finally bottle feeding tolerably and gaining weight slowly. I saw a lactation consultant for the second time before we came home and was told the same thing: he was too small and too weak still.

A Week of Coughs, Colds, and Crud (from his caringbridge)

I realize I've not posted much in the last few days. Truth be told, I've not felt like it. All three of the kiddos and myself have been fighting the winter sickies. Silas of course has taken the worst of it. He is currently fighting pneumonia with Augmentin. If anyone knows how tough it is to get a baby to take medicine, just imagine how difficult it is to get a baby who has never had anything but mama's milk in his mouth to take nasty tasting, thick, chalky antibiotics. Oh, and did I mention he has a severe gag reflex and spits it all back at me? Yah, it's THAT fun!

So what's on the books for this week, you ask? Well we have our evaluation with the Child Developmental Services Agency on Wednesday, provided we are feeling well enough to go. And I think that's the gist of it, though we have a few impromptu visits with the Pediatrician to monitor his pneumonia and breathing.

So, that's what we are up to right now. Silas hit a new milestone this week: I caught him flexing his left fit and LOOKING at it. Simple, and yet progress. Beautiful, unadulterated progress. He started noticing his hands around 4 months old. I keep waiting for him to lift them towards me and smile, signaling he wants to be picked up. He hasn't done it yet, but I keep hoping he will soon... it was one of the sweetest milestones the girls ever reached, that and the first time they told me they loved me rank at the top of my favorite milestones list.

6 Good Things (from his caringbridge)

1. Silas had more head growth on his 6 month well-check
2. His EEG was fairly normal. He had some O1 and O2 firing but we arent not concerned enough at this time to repeat the test right now
3. He was tested for RSV as he has been sick. He does not have it. Yipee
4. He qualifies for the early intervention program
5. His weight, which was below the chart at birth has now reached the 50th
6. He is maintaining his length curve at the 3rd-5th%

So proud to report the positives: :)