Check in. Check Out.

You may have heard, we had another doctor visit this past Thursday that resulted in a 24 hour hospital stay. We walked into the office with a fever, an alarming more often than normal apnea monitor, and some congestion. When we found out his oxygen rate was 90% things were a bit troublesome. A breathing treatment, a phone call, and a car ride later we were checking into the hospital. Monitored overnight and sent home the following day. We learned two things while there:

1) Silas' immunoglobulin tests came back normal. As did his thyroid. I forgot to ask about the microarray.

2.) Silas has tiny fuzzy ears and it's nearly impossible to see more than 20% of his ear.

As we were leaving the hospital, a nurse called us about services for Silas. You know you've had too many hospital visits when...

Yesterday was Silas' hospital follow-up. We saw Dr. Coleman again. He tried to look in Silas ears as well and could only see 5-10%. He also tried and oximeter but it only works if the baby isn't crying. Can you guess what Silas was doing? Ha! So we walked out of that appointment waiting on calls to see a pulmonologist and an ENT.

A few other tidbits: Silas is 9 months old and has been breastfeeding 6 months now. :)

We learned at his last G.I. visit that his testes are undescended. One is about 75% descended and the other was *unlocateable* so that may be another appointment to make as well. Typically if they aren't descended by 12 months, they make a referral to have them *found* and possibly surgically moved. This could affect fertility and also  is linked to higher risks of tumors, cysts, and cancers if they remain undescended.

On a more positive note, I heard him make a new sound last night. *la* when copying a friends voice. He has been quiet lately, so it made my day to hear that!!

Feeding Therapy & Other Nonsense

So, we met with our O.T who does feeding therapy. We talked some about what was advised to us at the Pediatric G.I. appointment. She also fed Silas some baby food, watched his mouth movements and examined his mouth. Like me, she felt feeding therapy unnecessary at this point. He is making progress without it, and while he may not be where they would like him to be from a G.I. standpoint, he is in no danger and is sustained well on his current diet. She encouraged me not to feel rushed and to continue enjoying our nursing relationship. One thing she did advise was to skip the sippy cup. From a developmental standpoint, they aren't required and are there simply for convenience for mom, and assurance the carpet won't end up being every shade of juice sold at the grocer.

UpcomingAppointments:

- G.I. Follow-Up (May)
-Ped.12 Month Well-Check (August)
-Urologist Follow-Up (July)
-Neurologist 12 Month Check (July 27)
-Genetics workup (August)
-C.D.S.A. Progress EVAL

A New Face and An Unacceptable Plan

Prefacing this post by saying I like Dr Williams and believe he has done well by my son. This is not about him or his office.

Worst G.I. visit ever yesterday. I somehow ended up seeing his N.P. who came up with a whole new plan for my son, my son who is growing great. One good thing came of yesterday, someone finally listened to my issue with his reflux meds and we are having one compounded for us. I hope this will make a difference.

There were some not so nice plan changes too. They suggested Silas go to feeding therapy, breastfeed less, eat more, and sleep through the night. They want him on vitamins (okay, but who is going to remember all this?) And stooling every 3 days (primarily breastfed babies can go 7 days on average and longer for some because there is no by-product or waste from breastmilk) which requires yet another medicine.

So now we are getting complicated. He has breathing treatments 2 x per day, reflux meds, and now they are adding vitamins and stool aid. I do have 3 kids, a schedule to keep up with, and a life to live. If he honestly needed all these things, I would find a way but anyone who knows and sees my baby on a consistent basis can tell you he is happy, doing well, and growing great.

Perhaps the most aggravating and infuriating moment of the day came when my baby was paraded through the office in just his diaper, "this is what a well-fed breastfed baby looks like." Okay, my baby is beautiful and healthy. He has rolls, so smushy and we love him, all of him. But please don't show him around to all your colleagues and then tell me he is overweight for weight-to-length and that I need to decrease his milk intake. He is growing well, we are a short family. He will thin out as he becomes more mobile. He IS a GREAT example of a baby thriving who has every reason not to, and a story of a MOTHERS determination and heart to give her baby the very best. IF you knew our story, you would understand the miracle of my son and truly feel the pride and joy and thankfulness I feel when I look at his breastmilk-made rolls of love. He is succeeding at something everyone told us to give up! We are OVERCOMERS!

Dont Give Up On Us

I am quickly learning that raising a child who is medically involved means dealing with rejection of a new sort. I was prepared that some people may choose not to be involved in our lives or that some kids (and even adults) may stare (or worse). i was notprepared that his medical team might throw up their hands and say, "We may never know." I was even less prepared to be told "We have done all we can. We will see you for his Well-Child in July, unless he is sick between now and then. You should contact his Neurologist for any follow-up concerning the breathing pauses." They had nothing to say about when to discontinue the breathing treatments or the apnea monitor.I left feeling utterly alone in this fight for my son. His Pediatrician is supposed to be the first line of defense, and they have basically washed their hands of us. Well, I won't be tossed out on my keister that easy.

Back to Life

Wow, we had a crazy day. Silas had no fever or breathing spells overnight and was great on his big sister tater's field trip today. He enjoyed getting a new carseat and snagging dinner on the beach. All in all, a great first day home. He still has quite a few ouchies from all the sticking they did at the hospital. Proud of my tough guy! Glad to be home.

Heading Home

So, we must say goodbye to our room today. We are going home. Silas will surely miss his PICU friends, his safari mobile, and all the extra cuddles and hugs from everyone. But, this is a good thing. While we don't have the concrete answers we had so hoped for, we are confident that this too is a process. Numerous tests have been sent off, follow-up appointments have been made, monitors and training sessions have been given and scheduled. It is a work in progress, like so much of life, when you have a medically involved cchild.

I would like to extend a public and heartfelt welcome to all of the people who have come together to offer support, encouragement, love, and meet tangible needs.

To Ultimate Faith church and our family there- we are honored by your big hearts and grateful for your love. We can't wait to be back in God's House and worship with you.

To Cynthia, Ma D, Bri & Daniel, and all of our visitors who cheered us up and prayed over our son, THANK YOU. You made this a little easier.

To those who have helped take care of my beautiful girls, grandma and grandpa, Amanda and Emma, I couldnt be here fighting for answers if I had any doubt that my girls were okay. You put my mind at ease and you make a difficult road a little less treacherous. My girls love you all. Just ask them!

To our many Doctors, Nurses, housekeeping staff, cooks, and therapists at the hospital, we are blessed beyond measure through your service. Thank you for making us feel like family, for treating us as if you had nowhere else to be, and for putting up with our many questions.

For all the prayer warriors that number in the hundreds, for all the facebook messages that were sent privately, for all the phone calls that were made, we are so grateful and appreciative. There is so great a love. It was all these things that reminded me to keep the faith, that bolstered me when I was in tears. Thank you.

And GOD bless you each abundantly. May we be so able to serve you in your time of need!

Sarah

You Cant Compare, My Love

One of the most difficult things of being the parent of a child developing a little slower than typical is that everywhere you go, some happy parent, proud grandma, or well-meaning friend wants to talk about milestones. And if that were not enough, as a mother you are surrounded by other mothers with other babies. I see friends' children eating textured food, crawling, pulling up on things, clapping their hands, reaching for mommy and daddy, saying mama and dada and it sometimes makes my heart ache. I know children grow and develop on their own. And I know that Silas is a little behind the rest because of his slower brain development. But I also know as a mother how beautiful those milestones are, and how my heart longs to share them with my friends rather than just nod and smile and say "soon.." I'm in no hurry to make my boy grow up, because I cherish every precious giggle, smile, coo, and snuggle. This phase passes so fast and you don't get it back.

Even if you are a little slower or a little tipsier, Silas, you are amazing and precious. You can't compare, my love. God hand-picked you just for us and you and your sisters bring us the greatest joy. Love you my handsome Frog Prince :)

Why Concrete Answers Matter

When your child has a breathing episode, the last thing you think of is what you need to take to the hospital. The first and most consuming thought is making it there in time. Once you are there, the goal is single-purposed: find out why it happened and how to prevent or treat it.

The Doc was just in. Silas' EEG confirms NO seizure activity, even during the breating spells. His blood and urine culture are clean after 24 hours. Waiting to hear on the spinal fluid culture yet. So far, we have NO IDEA what set off the fever or the cyanosis and apneic breathing spells. He hasn't had any since yesterday afternoon. There was mention of 'the earliest we could send you home might be tomorrow.'

I am THRILLED Silas is doing better, but I DONT want to leave here without knowing what to expect, without answers as to whether this will happen again.

While driving to the hospital, I had both eyes on the road and both ears on the sound of my son's breathing. When we got stopped at a railroad crossing, I had 911 on the phone explaining the situation. I was seconds away from an ambulance ride when the crossing opened and cars started moving. The whole way there I kept talking to silas, willing him 'BREATHE!' and counting the seconds between breaths. When we pulled upto the ER I literally RAN in with my son and said to the nurse "my son is having breathing difficulty." Only once he was in a room and being taken care of did i stop to breathe and think about what had happened.

So, YES concrete answers matter, especially in a situation like this. Please keep praying that God give the Doctor and Nurse taking care of Silas pieces to the puzzle, wisdom in their investigation, and even if needed more episodes in our current controlled environment to analyze in order to figure out the cause.

I come against any confusion, hiddenness, and attempts of the enemy to keep us in disarray and speak conclusive, revealed medical proof of what is and had occurred. We stand on faith that this will be brought to LIGHT so that it can be dealt with AT THE ROOT CAUSE. In jesus name, amen.

Puzzle Mania: update 4/7/13

so, theres not a ton new, but here is what we know today.

1) His white blood count is down from 28000 to 11500 (cut in half, God be glorified)
2) His c-reactive proteins are high. Normal is less than 1. His was 5. This indicates there is infection/inflamation somewhere in his body.
3) His fever is under control. Yay, prayer answered!
4) cultures might come back tomorrow... might!
5) His EEG comes off tonight.

Another thing we are studying is whether his apnea is part of the infectionor alongside it. We removed oxygen today, to get a better picture of what these apnea spells look like.

Still praying for conclusive answers. Still here. And so blessed. Thank you to all our visitors, family who have called, friends and family who have watched out for my girls and husband in my absence, and those who have brought goodies for me. We covet your prayers mostly and stand on FIRM FAITH that we WILL have concrete answers and healing for our beautiful boy!

Too Many Needles, Not Enough Hay

Its wee hours of the morning, and I can't sleep. For those who are not aware, Silas is in the PICU. He was admitted 346 Saturday morning with a 102.2 Temperature and respiratory distress, code blue.

The fever pointed to infection so once we had a room on the Pediatric floor we began collecting blood work, urine for analysis, and a lumbar puncture to check for meningitis. They did a chest xray in triage to check for pneumonia reoccurrence and it was clear. The lab work has not come back yet, except he was negative for influenza and RSV.

We were moved to PICU around 7 Saturday evening following a possible seizure and some slowed respirations. When moved over, the PICU nurse was able to listen with a stethoscope during an episode and discovered apnea. It was quite scary to hear "he is not breathing right now. He is apneic." So we are trying to find the cause of this as well, and whether it relates to his illness.

Silas is on several monitors, has an IV, and is currently being video recorded. He is very cranky at times, as you can imagine after all he has been through, but he still is a sweetheart, albeit a pitiful looking one at the moment.

For anyone who would like to call or visit, vising hours at the PICU are 9am-9pm. You must check in at the desk in the main lobby to get a pass. Please call or message Sarah to make certain we are not out at testing or otherwise isnt feeling available to visitors.

We covet your prayers at this time and thank you immensely for them. God speed.

What We Can Do

Happy 8 Months to my beautiful boy!

A few things he is now doing a little.better than before.

Staying in a seated position
Grabbing at things
Attempting foods (puree)
'ba' sound

What we are working on: hand to mouth coordination (lots of trembling), dropping hips for all-fours position (he hates this and cries much!), texture sensitivity and gag reflex.

Upcoming Stuff:

Follow Up for Breathing Treatments
Follow Up G.I.
Follow Up Urology
9 Month Well-Check

Missing Pieces: Long Overdue Update

A few things I have forgotten to mention here, or have not updated on lately. Sorry, January-March was a really tough time for us medically speaking.

 Medical Mumbo Jumbo

Silas caught a cold in January, around the time of his 6 month checkup. On February 2nd he was diagnosed with bacterial pneumonia. We did a round of antibiotics and checked back in with the Doc middle of the month. "It takes a few  weeks for the cough to resolve" but his was still not better a month later, so we took him back again. They gave us breathing treatments, a second round of antibiotics, and a follow-up appointment in 4 weeks to discuss stopping the breathing treatments. So we are currently doing pulmicort twice a day and albuterol as needed. We finished the second round of antibiotics on Wednesday. Yesterday (Saturday) I forgot to give him his treatments and this morning he woke up sounding just as bad as before we began them. We go back early April to discuss all this. My gut says we may be doing treatments for a while, and that was something mentioned at the prescribing visit, that if he stopped them and sounded worse within a day or two, we might try doing them for 3, 4, or 6 months. Okay, I'm fine with that but my burning question is WHY is he having all this congestion. His pneumonia looks to be gone, so what is causing all this to stay in his system? No one else in the house has caught anything from him, so we know that he isn't just getting cold after cold. We have all been healthy except for that onset cold that we all had where his turned into pneumonia.

Another thing we haven't discussed (more because I am waiting on results than anything) on our blog is that Silas recently underwent a 72 hour EEG. I know I talked about the 15 minute one but after that we were still having activity looking stuff and I sent the videos to his neurologist who decided on the 72 hour EEG just to make sure we weren't missing anything with the short version. That came off on Thursday, still no results. The worst part about this particular EEG is that he now has little sores all over his head from the electrodes. They should clear, and we hope they don't scar. I'll be sure to post photos soon.

Food & Therapy

Silas has since our last post began his CDSA interventions. We LOVE our therapist! She comes out to the house once a week and works with us and the baby to get him moving and developing strength and abilities for his next milestone. She brings goodies for him too, toys he hasn't seen before, and swaps them out with others he is tired of. Our first goal we are working on is trying to introduce some food. This goal is honestly the one that scares me the most. Silas has done okay with it, but it is definitely not consistent. He still has a very sensitive gag reflex and so lots of what he tries comes back out at us, and yes that's fun getting all covered in baby slobber and food particles.  So far we have tried real oatmeal mixed with breastmilk, mashed peas, green beans, broccoli, a taste of yogurt, and yesterday I let him gum on a cucumber slice. He has no teeth yet. He really seemed to enjoy sucking the life out of the cucumber. Most of what he tries is only a few bites and half of that doesn't stay in. We have had small luck with fruit puffs that dissolve in the mouth on occasion. He likes to play with his spoon and can get it to his mouth on his own, so I often put something on it and let him have it to play with and he seems to really enjoy this kind of early self-feeding. We only do this about once every other day, as it does seem to tire him out having to sit in the highchair. It also seems to increase his hand tremors (probably because he is developing a new set of muscles he hasn't needed before).

My daughters have had the chance to meet the therapist and they always ask when she is coming and if they will get to be there. They are really looking forward to activities they can do WITH their baby brother. We are incorporating signs for "eat," "more," "milk," "mommy," and "daddy" into our daily interactions. Loving that!

Well, I think that's all for now. I will try and post some photos soon on the blogs. I haven't done that lately. Have a great week and I will get better at doing this again very soon. Oh, for those of you wondering, I still have the caringbridge site but there is something going on there and I cannot get into it to update right now, which is why I am posting here and not there for the time being. Blessings, love and light :)

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: :)

Happy Half-Year Froggie (from his caringbridge)

Our little Silas is 6 WHOPPIN' MONTHS OLD! I can hardly believe it. So proud of him and his sweet laugh and uber goober baby cheeks. He is such a cute baby. Toadally hoppin' over that froggie of mine :) Thanks for sharing this milestone with us.

Oh and.... happy 3 months breastfeeding to us too! More on this math soon ;)

Resources & Support (from his caringbridge)

I often get questions from people about my son's condition from people who obviously are masters at google and wikipedia. So, for all who may be searching for answers, here are some better resources and supports

The Foundation for Children with Microcephaly: www.childrenwithmicro.org This is a great site with information for those who have kids effected my microcephaly, lyssencephaly, and polygeria. They also have a facebook page, so if you are on facebook check them out!

Syndromes Without a Name USA http://www.undiagnosed-usa.org This site is for persons with many varying syndromes which have no name. Several of the stories there involve children with microcephaly and no known cause. Only about 50% of microcephaly cases have a known cause/diagnosis. Microcephaly is not typically a diagnosis, but a symptom.

Microcephaly group on Facebook. I am part of a very supportive group here that is also active and worldwide. One of the most helpful resources for hands-on experience. It is a closed group, but you can search and request to join :)

Many states actually have local foundations for microcephaly, so check and see if your state has one already. If not, consider talking to your child's neurologist about whether there is a need for one. You may find you aren't alone!

And one of the most encouraging and relevant resources are the other caring bridge pages, blogs, and websites written by parents just like me and you! I am working on gathering a list of these and hope to have one soon with the author's permissions that share the stories of strength, hope, and experience of other children with microcephaly.

Hope you all have a great day and thanks for visiting!

Sleep Deprivation & Tears (from his caringbridge)

4:30 AM- Slam head on nightstand trying to hit snooze on my phone. Oh right, it's EEG day! Ugh! Roll out of bed

6:30 AM- Get kids up. Pack lunches. Make breakfas

7:30 AM- realize the middle child with curly hair lost my keys, call mother in law, freak out, dig through dirty clothes basket, find keys

9:00 AM- Check In at OPSU at NHRMC FOR EEG.

10:00 AM- EEG COMPLETE

So, it was quite the day. Arriving late after a hectic morning at the house, not having my wallet (thankfully we have been there so often they don't usually need our ins. cards and such), and then nearly being hit by a car on the way to the hospital. I was actually happy when we were shown to the room and the electrodes were placed with little fan-fare from Silas. He did fuss a little. Thankfully, we had a well-experienced tech at the helm. Paul, our tech, had been doing this for about 20 years. It was interesting watching him stare at my son, then back at the screen, even if a bit alarming. I did ask him about what he saw, and he said *MOST of it looks like involuntary movement* but threw in the disclaimer about Dr Tennison, our neurologist, doing the reading and report. He told me Dr. Tennison usually has quick turn-around time and to call later today if I had not received results by 4pm. So I called, no results yet. Hopefully soon. You'll know when I know. As always, we wait and see...

Edited to add a few questions I was just asked twice by two different people:

What will the results answer?

A few possible answers we might get for our questions:

1) is his shakiness seizure activity
2) where in the brain are the abnormal movements coming from
3) does he have any abnormal brain wave activity that gives us any information about why his head is so small

"But His Head Doesnt Look Small" (from his caringbridge)

This is probably the comment I hear most often when I explain what the term microcephaly means. Head appearance can be deceiving. Because of how Drs measure the circumference of the head, many children who don't physically appear to have smaller-than-average heads in fact do. Even Silas' physical therapist had a difficult time seeing his "small head" until I showed her a photograph of him with a typically developing baby his age.

"But why does a small head matter?" comes in a close second. There is no way to measure the size or weight of the human brain while it is in the body. We can examine the structure, placement, size relative to other portions of the brain, proportionality overall, and even distinguish surface texture. A normally developing brain has ridges and groves that give it that funny wrinkled appearance we have all seen on models. Brain growth determines head growth. In fact, if the head is not growing, it is a sure bet neither is the brain. The growth of the brain is what CAUSES the head size to grow. Head circumference growth directly shows brain growth, ALWAYS. This is why you may also see microencephaly as part of Silas' diagnosis. Although, many physicians just use one or the other. Because we know Silas' head started out smaller than the average baby of his gestational age, is growing at a slower rate than typically developing babies, we also know the same is true for his brain

The next logical question usually follows: What does slow brain and head growth mean? How does it affect Silas

This may well be the most difficult and least conclusive question to answer. Brain growth accounts for a baby meeting milestones- like learning to eat, clap, roll over, sit up, walk- as well as emotional maturity, physical coordination, and intellectual ability. What we do know is that Silas has been slow to meet his milestones and required physical therapy help in this area and occupational therapy help to learn to feed properly. What we do not know and cannot predict is how the continued slow growth of his brain will effect him in the future. This effects every baby differently. There are children with small brains who are minimally effected and others who depend on their family for every aspect of daily living. Only time will reveal where on the spectrum Silas will fall.

We do have a few positive predictors to consider. One, physical therapy helped him catch up on his milestones. Two, his father has a smallish (about 5th%) head and is of normal inteligence. Three, he has been able to learn new skills with guidance. Four, he shows some signs of fine-motor development beginning (scratching, pointer to thumb reflex at random) which are precursors to later milestones.

So, how can you help? If you have the chance to play with Silas, use lots of varying positions for playing. He loves tummy time. Encourage him to try and reach for objects. Help him with supported sitting and give him a toy to hold. Talk to him, mimic his sounds, and let him try to mimic yours. Please do not give him food. He is not ready for this and cannot control his gag reflex which is a choking hazard. Love on him. Tickle him. Smile at him. He will probably smile back!

Solving a Mystery (from his caringbridge)

One of the issues I am having with Silas lately is discerning what is him having an off day and what is him having something that warrants a medical opinion. As his mom, I distinguish every cry. I know if it's hunger, fatigue, pain. But sometimes I'm not sure . Last night is a perfect example

We had already had our night feeding. The girls were in bed. Silas was asleep. All of a sudden, he woke up with this piercing cry. Because of his microcephaly there are times he is shrill. Last night was one of those. I tried intercepting the cry with cuddling, changing, feeding, patting, investigating for too tight clothing or wrapped fingers, toes, etc in mommy's hair. No luck. It just kept on. After 30 minutes I was concerned enough to look up the vitaline number and consider calling, and in an instant he was quiet and acting happy

What gives? Did he just have a bad day or is it something invincible causing him pain? I don't know. I think this may be my biggest struggle. Not knowing what is wrong with him in those moments and all of my soothing techniques failing to help him. There is nothing that saddens me more than watching my child(ren) cry and being unable to help.

Unpredictable: Neuro Consult Update (from his caringbridge)a"

I am sorry it has taken me so long to chronicle our appointment with Dr. Tennison. Partly, I have just been busy with other appointments, partly I have been trying to gather my thoughts. I am going to do this chronologically

We got there on time, checked in, were weighed, measured, and put in the room. At the specialty clinics, you have to fill out a ton of patient, medical, familial, and other history on the computer. When you are finished, the Doctor reviews it and then comes in to the room.

Meeting Dr. Tennison was kind of funny. He is Christopher Lloyd Weber meets Dick Van Dyke. I had lots of questions, I had them written in my notebook. I jotted down his head circumference 39.2cms and all his other measurements.

We talked about the movements in his hands- abnormal involuntary movements they are being called- as signs of a still-immature nervous system. He didn't feel an EEG was necessary, even with a family history of seizures, but did say that many children with micro do have seizures at some point in their life

We also discussed developmental delay, cognitive impairment, and mental retardation. This was one of the more difficult topics. 95% of children with microcephaly have some level of cognitive impairment, and because Silas has had developmental delay in the past he is more likely to be impaired in the future.

The most interesting topic for me was learning the differing causes of microcephaly: cerebral palsy/stroke, brain structure, or genetic/metabolic influence. Dr. Tennison ruled out brain structure and cerebral palsy/stroke as the causes of Silas' microcephaly based on his MRI and prenatal and birth history. He has congenital microcephaly, meaning it has been there since birth, and likely stems from a genetic/metabolic source

He performed a thorough physical exam of our son and noted any anomalies: sacral dimple, epicanthal folds, unique iris pattern, pointed ear, micrognathia (small jaw/chin), post auricular creases. From this and the measurements of all our heads, he decided we were candidates for genetic consult. The wait time for this is lengthy, but the outcome could give us answers to many of our questions

I left feeling both hopeful and cautious. The Dr. could give us no prediction of how our son would fare as time passed. He could not assure us we would find a genetic/metabolic link (only 50% do). There was no way to know whether Silas would speak, walk, or be able to eat typical age-appropriate food. The wait and see method is the most difficult to accept when it concerns the well-being of your child, but that is what we were advised to do

We go back in 6 months, right after his 1st birthday. Will he even be able to enjoy cake? Time will tell...

Another Day, Another Appointment (reposted from his caringbridge)

So, I have not updated on the big neurology appointment we had last Friday, but I promise to get to it tonight.

Today we saw the pediatrician about some sleep disturbances Silas has been experiencing, and while we don't think they are seizures, we also can't know with certainty without an EEG. So, we put that on the books for Jan 30th at 830AM. It's a sleep-deprived EEG so I have the joy of waking him at 430 am and trying to keep him awake until his EEG, and you know how they just LOVE to run behind! Wish us luck, good brain wave vibes, and SEE SOMETHING thoughts! I either want a *FOR SURE* yes or no! Nothing inconclusive PLEASE

Twenty Questions (reposted from caringbridge)

Our Neurology consultation is less than 48 hours away and I am reminded that I should make a list of questions for and about my son, but I don't even know where to begin stringing coherent words together. For anyone out there who may be reading this and have experience in special needs or microcephaly, what are some of the important questions to ask? What are some of the important things to make sure the neurologist knows? Thanks in advance!

Sent from CaringBridge Mobile

Food for Thought (reposted from his caringbridge)

One of my current battles with Silas's healthcare team right now is whether or not to introduce him to solids. His physicians suggest it is important because he has had delays. But after talking to other moms who have babies and children with microcephaly, there are some unique concerns for Silas

When Silas progressed from bottle feeding, it was not a perfect transition, but we were grateful to be past the ng tube and syringe feedings. We were assured he would become more efficient and proficient as he got used to the bottles, but he never did. He would drool milk out one side of his mouth. He made an awful clicking sound while bottlefeeding, and he drifted to sleep before the bottles were finished. It was all these signs that led us to Kacey Trout, the Occupational Therapist who noticed his lip ties and possible tongue tie. She gave us homework to improve the tightness in his lips and allow for a wider latch on the bottle. It worked, sort of, but he still had other struggles with his bottles. The sleepy feeding concerned me most

About 4 weeks after his bottle strike, which led to us learning to breastfeed, I left him with a bottle for family and went somewhere for a bit. My phone rang and I ended up having to go get him. He wouldn't take the bottle. At first we thought it was preference, but as I tried once a week for the next 4 weeks, it became quite apparent that not only did my son struggle with bottlefeeding still, but worse he had honestly forgotten the proper motions for his tongue. He didn't know what to do with that thing in his mouth! This is called regression

What am I getting at here? Because of Silas having a history of feeding difficulties and regressing and losing skills he is no longer using, starting solids could be very tricky. Many of the moms with children who have microcephaly said their children did not have an easy transition and struggled to learn to feed. Some even required feeding tubes because they could not take in full nutrition by mouth.

So, because I want to preserve breastfeeding for Silas, as it is the most nutritionally sound for the first year of life, I am taking the path of least resistance. I will not offer my son any solid foods unless he gives me cues that he desires them (picking them off my plate, mouthing them, etc). Silas and I will continue our feeding relationship and work on developmental milestones like holding a spoon, pincer grasp, and other food-related milestones in other ways. The goal will be to make it to 1 year before solid food becomes an important part of his life. This approach will offer Silas the easiest path to success in beginning solids and remove some of the worry from me over possible regression.

World of Questions (reposted from caringbridge)

 

From the first ultrasound revealing his possible double collecting system to his first broken cry in the operating room where he was born, I knew something was unique about my son. I knew our journey would be new, different, and that there would be struggles, but what I did not know is just how many questions I would have.

In those first 48 hours my questions brought me to tears. Why can't I see him? Why can't he nurse? Is he going to be okay? It was difficult enough dealing with my own trauma from our emergency c-section, but the ceaseless concern and separation from my son was awful.

During those first days, we just were not sure why he was having so many struggles. He was acting like a 33/34 weeker, not the 36 week baby he was. The Pediatrician chalked it up to WWMS WHIMPY WHITE MALE SYNDROME, saying that boy babies tend to struggle more when early. And there was the trauma of my failed induction, finding out he was footling breech, and having the unplanned emergency c-section, plus all the magnesium sulfate I was given to prevent seizures from pre-eclampsia. So no one was certain why he couldn't feed or maintain his temperature or was having pulse-ox issues. What we did know is he needed to get better, so on day 5 the NICU staff came into our room and told me he was going downstairs to their unit. We were hours from discharge and Silas just wasn't getting better. It was time for further action. So that brought even more questions into our lives. When would he be coming home? Would he always need an NG tube? What was causing all this

When we got to go home a week later, he was taking milk from a bottle. We were happy with his progress and exuberant about our family being back together. Things were looking up.

It didn't last long, the period of no questions. Silas continued to struggle through his bottle feedings and wasn't progressing in milestones. We kept being told it was because he was early, that we had to consider his adjusted age, but he wasn't even holding his head up and he should have been able to do that, right?

As each new question came up, and each milestone passed without being met, I began to wonder if we would ever understand our son's struggle. Was he really so delayed from being 4 weeks early? I had doubts. His Pediatrician ordered Physical Therapy evaluation because of his feeding delays and apparent pain. The lactation consultant kept working with us to foster a good relationship there, but it was three months before we ever saw the fruit of that labor. There were nights I sat crying, holding a crying baby who was hungry but wouldn't eat for a reason I couldn't understand. I would watch as his hands tremored and clenched wondering if these were what infant seizures looked like, or I would cradle him and try to imagine him one day crawling, walking, speaking. But at three months old he still wasnt doing anything more than a month old baby, and I was becoming discouraged and so we started therapy, hoping it would help him along.

At his four-month checkup I heard the word microcephaly for the first time, and while it was terrifying to put a name to what may be delaying our son, it was also relieving to know it wasn't all in my head.

Today I still have questions and I probably always will. But as we get closer to his neurology consultation, I find myself asking what we might find out, what his future will hold, and hopeful that we are on the road to finding some answers to where this crazy road is heading.

Running Ragged

I should have started this blog long ago, but I didn't. I should have, but something prevented me from doing so- whatever that something was, I do not know it's name. Either way, here I am trying to piece together the past almost six months into a coherent face for you all who are reading.

From the very beginning, Silas had struggles with breathing, body temperature regulation, feeding, blood sugar levels, and movement.

We knew when he was in the nursery, before moving the NICU, at the hospital that his kidney was dilated and he had GERD. He has had three ultrasounds on the kidney and a barium swallow test for the GERD. He sees both a urologist and gastroenterologist for the GERD and hydronephrosis.

He bounced between NG tube feedings and syringe feedings two or three times before progressing to taking food by bottle. Even after he was home from the hospital and gaining weight, he did not progress to latching at breast the way we assumed he would. Six weeks came and went with no progress. We saw an ENT for a possible tongue tie, a P.T. for a possible torticollis affecting his ability to position properly. He was miserable. It was not until he was three months old that he was able to breastfeed and that came about because he striked his bottles and we landed in the hospital for dehydration monitoring. I firmly believe if that had not occurred, we would not be breastfeeding today. I am so grateful for the Lactation Consultants locally who worked with us to get Silas where he needed to be. They offered countless hours of encouragement, support, and never gave up on us, even when every thing we tried seemed to be another dead end. We finally got there, and when we did, we had a whole team of people celebrating with us!

Suck, swallow, breathe- some of the most vital abilities a baby needs and my son couldn't coordinate them well at all in those first weeks. The NICU provided him with proper training to regulate his swallowing and sucking, but the breathing part was something he couldn't be taught. So, we worried and watched round the clock to make sure he didn't show any signs of breathing difficulties. Those first few days at home with him, I was on the NICU phone line with a nurse daily. Something about having a NICU baby makes you feel like a first time parent all over again. We finally grew past these difficulties around 6 weeks and boy did I feel good about that.

Since birth Silas has had tremors in his arms and legs. We knew these were neurological symptoms, but had no idea what they pointed to. This has continued throughout his infancy. We see neurology later this month for a consultation. More on that later.

Silas also has had severe delay from birth onward. At first we thought it was just him being a little early but when all our attempts to get him nursing failed and his stiffness, morrow reflex, and tremors did not subside we were referred to a wonderful occupational and physical therapist for intervention. Physical therapy has been a God-send. Silas was very behind when he began meeting with Renee. Thankfully now, almost three months  later he is current on most of his age-adjusted milestones.

My weeks are slammed with Dr visits of one kind or another. I always feel like Im stretched so thin the holes are beginning to show. My hair is a mess. My clothes are wrinkled. My eyelids are so droopy I could trip over them, but I am doing what is best for my baby. I am being his advocate and getting him the help he needs.Dont ever give up on your child- you are the only voice they have.

What is Microcephaly?

Microcephaly or "small head" occurs in about 2% of the population. It can be caused by genetics, syndromes, or injuries. The current standard for microcephaly is a head circumference measuring  3 or more deviations below normal on the growth chart. Microcephaly touches each person differently, so the variation of signs and symptoms is vast. Some microcephalic children have no signifiers other than the below-average head and brain size. Others may be severely effected and require constant care and supervision. No doctor can predict the person's quality of life, struggles, or health concerns for the future. It truly is a wait-and-see disorder. Regardless of the severity of the disorder, those with microcephaly are amazing and beautiful. They deserve every happiness and provision possible to ensure they have the best life available to them. Love them, cherish them, and know that no matter what, they are still the same sweet, loving, fun people you know them to be.

The Nitty Gritty

So, everyone wants to know the statistics.

Here is what we know:

Silas has the following conditions - microcephaly, hydronephrosis, GERD, tremors, epicanthal folds, low set, misshaped (elf) ears, high-pitched broken cry, feeding difficulties (NG, syringe, bottle, finally breast), mild developmental delays.

Here is what we aren't sure of:

Possible seizure-like activity, cause of microcephaly?

Birth Stats:

Current Stats:

How I Met My Son

After enduring an awful pregnancy with complication after complication, labor and delivery visits piled one on top of the other, and more close calls than I care to recount, we were finally admitted to antepartum for hospital bed rest.

It was a beautiful, hot, and stormy Friday morning when I hobbled into the triage bay one last time. Every thing was wrong. I was puking, my head was screaming, everything hurt. I just wanted some relief from the pain, but what I received instead was a hospital stay that ended with my son being forced into the world before he was ready.

The plan initially was to wait it out in the hospital til 37 weeks and then deliver via induction, but I never made it past 36 weeks. Monday morning arrived and with it the announcement that I was being induced. I've been induced before , but no one told me what this induction would be like, no one prepared me for the road ahead.

It was some time after noon when I made it to my delivery and labor room. When I get there, I learn that I will have to labor flat on my back. Immediately the tears begin falling, my fear nearly strangles my breath as I try to ask to speak to the doctor about what they are planning. I have to be on magnesium sulfate, the Dr tells me. And that means a catheter and monitors continuously and a very LONG labor process. I make peace with the medication and bargain for not getting a catheter until I cannot walk to the bathroom on my own. l watch as they slam my body full of poison, at least it feels like poison. My face is on fire. The cyatek, which isn't approved by the FDA for use in hospitals for laboring women (but is used for laboring animals), goes three rounds before they decide to move on to the next phase. Sometime around midnight they start me on pitocin. I don't progress as planned. They don't ultrasound as planned. Tuesday afternoon, almost exactly 24 hours later, my water breaks. Another unplanned occurrence.

We are reeling as the Dr checks me and discovers my son's foot lodged in my cervix. Not only is he not head down, but with my water now not in tact, they won't even try to turn him. My failed labor induction becomes an emergency c-section. As I lay there waiting for the Dr to confirm there is no other option, I am frozen with fear. There are no words for how I felt lying there, lights blaring as people rush around me, asking who they can call, if I am alone, where my husband is and when he will arrive. Someone comes in to shave and prep me, a most horrendous experience. The catheter goes in. The phone rings. I answer. A friend is on her way until my spouse can arrive.

I am wheeled back to the OR, alone, with my friend standing in the hallway. My husband is still not at the hospital. I am shaking, half naked, completely a wreck, on an operating table in a cold, sterile room with people all around me. The spinal tap goes in, and my body, nearly lifeless, is positioned on a table. My legs still feel as if they are bent though they assure me they are straight. I feel exposed. though I am draped.

Finally, I see my husband entering the room, his gown, cap, shoe covers, gloves, all there. He is sterile too. The realization that my baby will be born in this cold, unfeeling room, with lights blaring on my open body is too much. I focus on trying to breathe. On feeling my husbands hand through the glove, on the sound of his voice and the glimmer in his eyes. I don't know if they are tears or joy. I only know that he is with me now, and he is speaking. I listen as the blades begin. I talk through the whole procedure. That's what they call it. A surgery. I talk. I talk about how I cant wait to meet the baby, about how much I love my spouse, about how weird everything feels. I talk until I hear my baby, a tiny weak cry, ushered from his lungs, and then I know.

He is not ready. Before that moment there is still some hope that he will be perfect and healthy and ready to meet the world, but that wimpy cry shatters the light in the room. I feel darkness all around. Everything is silent. The Doctors have stopped speaking, though they continue working, the team assembled around my son, out of my line of sight, works hard to rouse him. His dad is called over. He cuts the cord. The baby is swaddled and passed to dad, who brings him over to my head, where I can glimpse his sleeping form. He is not rosy, but rather some pale shade of pinkish blue. I'm told his foot is bruised ad swollen. My heart aches for him. He will go to the nursery. Dad goes with him.

They stitch me up. I go to recovery. I am given ice chips. They check me. I am okay. I go back to my delivery room. I have to endure another 12 hours of magnesium. Around 3am I am placed in a recover y room. I have compression socks as I cannot walk yet. I have not seen my baby. I cry and ask for him. They cannot give him to me. He is not able to come out of the nursery. He is not able to stay warm. he is not eating well. I cannot nurse him yet. I have to be able to walk and do things first.

Morning comes. I eat. I keep it down. I am forced to stand and walk. I walk to the nursery. I sit, and cry, beside my son, and I hold his tiny fingers. I massage his black and blue foot. I talk to him through my tears. I cannot take him out of the warmer. He is having breathing trouble. They watch him. Some time the next day, I can hold him. Finally. I am pumping for him, but it is not much. Just a little for now. It's something I can do when so much else is out of my control .

He makes progress and finally he is released to our room, but the next day, he is sent to NICU . We follow. Seeing him there in the isolette with all the wires is torture. But they assure me when he is warm, they will help us hold him, care for him, love him. And we do.

Five days later, Wednesday, a week after his birth and one day, we are home. It is still no easy thing, as he still struggles, and I still fight fear, but my son is here. He is lying next to me, sleeping. His five pound body barely makes a dent in my mattress. But my heart brims with joy and sadness.

Joy for his life and for his beauty, sadness for all the shattered expectations. Perhaps it hurts more because we likely will never have another, or because some day, this story will be part of his life, part of the history of how he came to be, and I somehow wish I could change it for him. I wish I could make it more beautiful, more like him, my peaceful frog prince, but I cannot. I can only take comfort knowing, that out of something rather unlovely, a beautiful child thrives. I met my son in fear, embraced my son in hope, and will raise him in love.

*** And then the following day I went back and added the positives I could think of...***

ONE... my husband was a GREAT support during my c-section. He talked to me through the whole thing.And I remember looking in his eyes after asking the Dr if I was going to die.. and knowing that it was going to be okay. His voice was all I needed to hear. I wouldnt have made it through it without him there....

TWO... my doula was GREAT with heloping me cope with the pitocin and magnesium. She rubbed my feet, massaged my back, brought me cool cloths for my face, and reminded me to change positions. She helped me to the bathroom, and probably saw more of me than anyone ever needed to, but still was so sweet and reassuring even in my terrified state.

THREE... my friend Tesa was lots of fun, which was a good distraction. We all talked and laughed through most of the induction attempt. She reminded me that birth is supposed to be lighthearted, which is just how i HAD hoped it would be... and even though it didnt turn out to be tht way, I was able to enjoy most of my induction and stay relatively peaceful even though I felt terrible and scared beyond belief....

FOUR... seeing my son... I cried. He was beautiful, even if he wasnt the perfect color. He made faces at me, and I think I even saw his eyes one second before they took him away. I stroked his cheek, and hoped it was enough love to get him to fight ... and it was...

FIVE... God provided the right person for each of my shocks during the process.

Vanessa called me just moments after I was told I was having an emergency c-section and she came to the hospital to sit with me while my husband arrived. I was a wreck-- she'll tell you. She had been through a c-section with the twins, and was able to tell me it wasn't all terrible.

Dawn showed up in the middle of my finding out Silas was being admitted to NICU. We had been prepping for discharge the following day. She had been through a NICU experience, and helped me make sense of my world at that moment.

So thankful for God's hand on us... in all these ways... It still hurts to remember it all, but the good part is that my son is beautiful, mostly healthy, and growing. Maybe it wasn't how I planned it. Maybe it wasn't even how God intended it, but He worked it all out for good. Through every obstacle we faced, we have overcome.

Hello, Micro (from his caringbridge site)

Hello, Micro.

 

I dont think I will ever forget the first time I heard the term *microcephaly*. After months of worrying about my son, of struggling to get him to eat, of not meeting milestones, I finally felt confident we were headed in the right direction. I entered the office feeling confident we would have an easy-breezy appointment to check all the numbers and be on our way shortly. My presumptions could not have been more incorrect or shattered.

"Im concerned about Silas' head size" the rotund Dr said over his thick-rimmed spectacles. His voice still bubbly as he swayed my son in his arms. "It's not growing well, slower than average and it's very small."

I remember asking what that meant, what the possible causes were. The words he threw back at me were all scary, terrifying. Tumors. Brain Damage. Syndromes. "I'd like to schedule an MRI. I could do an ultrasound but they would likely just say it was inconclusive and ask for the MRI anyway, so we can step over them."

I drove home ith his words slamming around my head. "Silas has microcephaly.   Hopefully the MRI will give us an idea of why, but it might not." 

The call came later that day, scheduling the MRI for my 4 month old son. When the scheduling nurse started going over the rules and precautions for the procedure I about lost it. "You want my four month old baby who has struggled with eating all his life to go how long without any nutrition?" I nearly slammed the phone in her ear, but instead I said I understood and vowed to do some research when I had a minute.

The MRI went well. There were not any complications, but I was a wreck. I was there the first and last two hours alone. They had to fully sedate Silas, which meant intubation to preserve his airway. He looked awful when he was coming to, but he did well and we were on our way home shortly after coming to the recovery room. I had no sooner unloaded the car when the results came in on the phone.

The MRI showed a normally structured but very small brain. Everything looked normal. So, Silas' microcephaly was not caused by a brain injury, stroke, or trauma. He had no tumors or missing pieces. Those were all good things. Tears of relief slid down  my cheek as I hung up the phone. But then the fact that we were no closer to answers than before hit me, and I felt ache all over again. Thats the struggle, the unanswered questions.

So here we are, waiting on his neurology consultation to discuss further testing, go over his complete medical history, and try yet again to find answers to the burning question: What is causing his brain to not grow the way it should? Is his microcephaly genetic, part of a syndrome, or something unexplainable? What can we expect for the future?

His neurology appointment is the 18th of January 2013. I will do my best to update as soon as we know something or have a plan in place. Thanks for the thougts, prayers, words of encouragement, and taking the time to share in our journey. Be blessed and amazed!

5 Months

Months 2 to 4

Weeks 4-8

Week 3

Week 2

Coming Home

Week 1