Noah's Story

Welcome to Noah's story. I've decided to write this blog to help others who are facing Pierre Robin Sequence and its obstacles. Along our journey the web has been our source of information. Everything from scientific explanations, to stories like ours, to images. We have found multiple sources that explain what Pierre Robin is and even some touching stories of families who have travelled along this path. Still many of these resources didn't chronicle the child's developmental milestones or growth. Therefore, I decided to make it  my mission to share with you our experience with PRS in hopes that our story can help you. While this journey has not been an easy one, we've survived and conquered PRS and it's challenges with the help of our Lord Jesus Christ. I can't share our story without sharing all about HIS grace, love, and strength in the most difficult experience I've had as a mother. Christ has been our center and our strong hold in the most desperate and frightening scenarios and we praise HIM for the work he has done in us and in our Noah.

As a Foreword....

My husband and I have been married for 8 years as of 2012. We welcomed our first child in January 2009, Caleb. Caleb has been our "perfect gift from above" and has brought much joy to our lives and to our family as a whole. In 2011, we decided we wanted to have another. As with Caleb we quickly were expecting. Baby #2 was due two days after Caleb's 3rd birthday. My pregnancy evolved without a hitch. I gained just the right amout of weight and all my ultrasounds revealed that baby #2 was a healthy baby boy we named Noah Levi. Towards my 36 weeks I was measuring larger than I should have so an ultrasound was done. My ultrasound only revealed that my amniotic fluids were low so we had a stress test. That resulted normal. I had been experiencing contractions off and on for weeks and was already 2cm dilated. The following week I had yet another ultrasound and stress test. All seemed fine though the ultrasound technician asked multiple times if I had had a genetics test, which we hadn't. The following evening my contractions became stronger and consistent.  By 11pm on December 29th we were checking in to the hospital. Labor went as expected... strong contractions, epidural heaven, and severe back labor. By 5:45 we started pushing and Noah Levi was born at 5:54am. He was a crier. At 37 weeks, on December 30th,  he weighed in at 7.2lbs and 18 1/2 inches long. We thought he was beautiful and didn't think anything was wrong. But there was....

 

 Breathing on his own...before mandibular distraction...proving to us all that he was a fighter and the LORD was with him.

Pierre Robin Sequence/Syndrome

During Noah's newborn evaluation, the nurse noticed that his jaw was pushed far back and that he had a cleft palate. They sent him off to the NICU to be evaluated and observed. Dad followed him along.

Next time I saw Noah I held him for a few minutes as tears flowed down. He had tubes and wires hanging everywhere. I cried at the sight of him but I had hope that everything would be okay. How could it not? I expected nothing but good news in the next hours and expected to take him home in two days. Well that didn't happen. Soon we were told his air way obstruction had caused his lung to collapse, Drs were successful in inflating it again. By 3pm the Dr told us Noah would be transferred over to the Children's Hospital of Philadelphia for specialized care. They told us the name of the condition but explained nothing further nor what it meant. He had Pierre Robin Sequence/Syndrome. A condition in which the jaw was underdeveloped. In the womb it didn't have a chance to pop forward during development which resulted in a cleft palate. A condition that made the two major functions of life: breathing and eating difficult.  He was in the NICU for the rest of the day.

Family came to visit and meet Noah. No one knew exactly what to expect or what was happening but when they saw him, they cried as did I. By 9pm Noah was transported and Daddy went with him. I was left behind. Still recovering...with a broken heart...and alone. Still clueless to what lied ahead.

First Month...Mandibular Distraction...Hopefulness

Less than 24 hours after Noah's birth he was transferred over to the local Children's Hospital. Immediately he was surrounded by a Pediatric team that included ENT, Plastics, and a Genetics Doctor. The renown Genetic Dr evaluated Noah and gave her opinion that this PRS case was not genetic as Noah's features did not resemble any syndrome however a genetics test would still be given and would take 4-6 weeks. During the next 24 hours we were educated on PRS. We learned the possibilities that PRS was linked to other syndromes and health concerns.As we continued to be educated and practically frightened with all the worse scenarios, our little Noah had a breathing tube and a feeding tube in place. The Drs discussed the various procedures that were performed for PRS. They seemed to lean towards Mandibular Distraction. .....

The next four weeks they evaluated Noah for Stickler's syndrome, checked him for a heart murmur, checked his hearing, evaluated his lungs and heart, had physical therapy, a speech therapist, and even circumcised him. All his tests would return normal. Before leaving we got the results of the genetics test that concluded that PRS was not genetically linked. This was a relief. Any genetic mutation put Noah at a higher risk of having complications of the heart or brain.  Doctors couldn't tells us exactly how this happen; they could only suggest that sometimes PRS is a result of fetal crowding.

We didn't know what to expect and how long Noah would be admitted. The first week they had him intubated and he barely was fed. I couldn't nurse him and because of his condition he wasn't given a bottle so I pumped breastmilk around the clock to stimulate production. I pumped every 2 hrs.They fed him very little via a feeding tube. By the end of that week they took him off the breathing tubes and tried letting him breath on his own. Noah did well and didn't need anything but a nasal cannula but required specific positioning. We hope this meant that he didn't need surgery but 3 days later the Drs confirmed that mandibular distraction was the best option.

On January 12th Noah underwent mandibular distraction. Thanks to the LORD surgery went well but Noah was intubated once again and spent about 4 days under sedation for pain management. He looked like a 4 month old baby due to the swelling on his face. When I spoke to him he would squeeze my finger and his eyes would break my heart. After a few days the the distraction began.
By week 3 Noah was up with little pain management. He now cried a whole lot. Looking back I truly believe he was hungry and suffering from acid reflux. We started bottle feeding with a special Habermann nipple for cleft palate babies. He did well but feeding took a long time and a lot of energy. He never finished his 70mls. He took 5-10 and the rest was via feeding tube. A speech therapist came daily to help.

By week 4 nothing but feeding was keeping Noah at the hospital. We were ready to stop our daily, full day trips to the hospital. Every day I prayed Noah would increase his feeds. And he did, slowly. Thankfully, a very special nurse urged  that we try another cleft palate nipple, the pigeon nipple, with him. The speech therapist wasn't very hopeful but as soon as we did Noah took all if not 95% of his feed. Within 3 days and at his 1 month mark Noah was sent home. 
He came home still with a feeding tube and we distracted for about 4 more days but there was nothing like having our baby home finally.

That month at the hospital, despite the wonderful care he received, really shrunk our little guy. He gained only 1lb more and grew only 1/2 inch.

Swollen after Mandibular Distraction...

Second Month...Difficult

Bringing Noah home was more of a nightmare than all. Yes it was wonderful to have him home but the challenges, stress, and overwhelming anxieties made for a very difficult situation. It was a situation that hurt to be in and that I hated to be in.
The first week at home was crazy. Having to feed Noah was a challenge. We still battled with the bottle and the feeding tube. It was a challenge to deal with the feeding extravaganza. Let's not forget I was also pumping breast milk around the clock to help my milk production. Add the immense crying Noah did. Mostly because he was hungry, tired, and in pain. It was not fun. By the end of the first week Noah managed to pull his feeding tube out. Although we were trained on how to insert it back in, we could not bare having to do so. And so we took a desperate measure and cut his nipple to make the opening bigger and viola! No more feeding tubes...more ounces...more satisfaction...a little less crying...no more feeding tubes! Praise the LORD!
We conquered one thing but feeding him was still a challenge. We had weekly weight checks and started him on some acid reflux meds. His pediatrician stressed he needed to drink more milk and we tried but acid reflux was not kind.
Slowly things were slightly better but Noah wasn't as easy as pie. By the end of the second month he weighed ten pounds and was doing better. He still cried a lot and well sleeping wasn't his forte. Still we could see the horizon as his distractors would come off mid March.

Month 3...Disappointment

By March Noah was growing slowly and we were beginning to feel more comfortable with the situation. He had caught an infection with the distractors and we couldn't wait to have the final surgery. A week before the surgery date we were disappointed to find that Noah's chin had regressed. Though he could eat and breath without any concerns...he physically didn't look that well.  And so his Plastic Dr had us start the process again. We started distracting for two weeks and needed to wait 6 weeks before they could come off...a new surgery date was set for late May.

In the next month Noah battled another infection and lots of bandaids and wound cleans. I still remember his cries and discomfort. He continued to grow and eat but when the acid reflux med seemed to stop working I bought Colic Calm and gave it to him. That did the trick...no more acid reflux discomfort and Noah began to really enjoy meal time.

Our faith could have been shaken after the mechanical malfunction but this was yet again another opportunity for the LORD to remind us that HE was in control. And HE really was.

Fourth Month...solids

At four months old Noah was growing. He weighed 14 lbs and was about 22 inches long. He was still sporting bandaids and his distractors. We were counting down the weeks until his surgery. Despite his challenges Noah was a wild child. He was rolling from his tummy to his back and from his back to his tummy. He had even discovered how to scoot on his back.  We would lay him at the center of the room and find him against the wall. He was still feeding through the night although he now was only getting up once and every so often he would sleep through the night. The Dr also gave us the green light on solids. After much googling, I found that some cleft babies did better with solids than others. But overall most stories were positive; moms suggested that it could take baby a while to learn to move food past the cleft and down the throat instead of up the cleft. I also read about the big sneeze, a way of baby clearing up the nasal passage from the food. And so I jumped into solids with Noah and I was thrilled to see he took it so well. He had no issues and loved food. A handful of sneezes but not often at all. Noah got it quickly.

Fifith Month....Hoorraayy!

May 21st was Noah's big day. Daddy was away in a training and I had to tackle this alone. My sister came along and I was grateful for that. But Daddy was missed. Noah was turning 5 months in about 10 days and we couldn't wait to celebrate without the distractors.

Surgery Day was long. Noah drank his milk at 6am and wasn't taken back to surgery until 1pm. Brutal. But God was good. Noah wasn't cranky; he survived the prep work and fell asleep for a nap as they rolled him away. He had no idea what hit him.

Next time I saw him He was whining and groggy. He was in pain and he was getting morphine what seemed like every 5 minutes. He was so swollen he looked like he weighed 30 lbs. I stayed with him that night. He was practically sedated and didn't wake to eat till about 3am and didn't take much. The following day he was given the okay to go home if he increased his feeds. We worked on it and back home I drove with him...alone.

The first night home he slept through the night and had one dose of pain medication. His appetite wasn't back yet and I worried a whole lot. He also wore mittens as not to pull the tape over his stitches. The next couple of days he slowly started to gain his appetite. His swelling worsen the two days after surgery. He looked like a sumo wrestler. A week after surgery he was back to his routine and looked a lot better.

We praise the LORD for bringing Noah through this. Now to heal and focus on growing.

Before prep work.

 Sumo

 1 week after surgery.

Month 6-7...Summer Time

After his surgery our family had our first vacation as a party of four. What a relief not to have to worry about distractors and band aids. Our family needed to get away and the timing was perfect. Noah was back to eating well and napping was a work in progress.

By 6 months Noah was 17 lbs and 24 inches long. He was growing beautifully despite all his setbacks. Praise the Lord Almighty. He was also crawling in all directions and nothing was stopping him. He was sitting independently. He could even feed himself the baby puffs. Developmentally he was doing well except that besides "la" he was not saying much. He wasn't mute but he wasn't saying specific sounds. We also introduced a sippy cup...NUK being the best for his cleft palate.

By 7 months Noah was a speedster. He was pulling himself up and even cruising. He was able to sit up on his own and responding to his name. But the most thrilling summer news with our Noah was that a day after my birthday he said MAMA. Clear as a bright sunny day, MAMA. How joyous this was for us. He continues to say Mama. He has added "na" to his sounds. We are working on Papa. :)

 

Pump it....My Breastfeeding Journey...and the Magic Milk

My first experience with breastfeeding wasn't such a great one. Caleb was breastfed for a total of 6 weeks. Six weeks that included 2 battles with Mastitis, one that admitted me into the hospital for three days. Yes...pretty horrific. But with my second pregnancy I was willing to attempt it again.

My hope and trust that Noah would be okay and discharged from the NICU in three days only encouraged me to keep with my goal to nurse him. While he was in the NICU no one discussed feeding yet..I pumped to stimulate breast milk production. Once Noah was transferred to the Children's Hospital, the nurses there handed me a pumping kit and showed me every pumping station in the NICU area. So...I pumped. I knew that my pumping schedule had to resemble that of a nursing infant and so I pumped every 2 hours. I still hoped that at some point I could nurse Noah but talks with the Lactation Nurses and the Speech Therapist it was clear that nursing would be extremely challenging. Noah was having enough feeding obstacles to defeat...I was not about to introduce and force the breast. So I pumped. I pumped and had no real clue if pumping would work or not. However given that he has the distractors in place and needed the most nutrition possible I felt breast milk would be best and I was determined to produce milk. I rented a hosptial grade pump and our health insurance reimbursed me. And I was blessed....

Noah was not being fed and he had his first feed 4 days after he was born and they offered him 5mls via a feeding tube every 3 hours. I know the hospital staff is educated but really what infant eats every 3 hours? Nonetheless I pumped around the clock...yes I woke every 2 hrs even at home without an infant by my side. My milk came in slowly. By day 6 they tried to feed him 1oz of breast milk and he vomitted. In hindsight I realize that Noah was suffering from acid reflux. I wonder if this was because he hadn't been feed anything for 4 days. ?? And so they dropped the feed to just 1/2 oz of breast milk. They slowly worked it up to 2oz and by the end of the month when he was being discharged he was up to 70ml every 3 hours. At the hospital Noah cried a whole lot. I really think he was partly hungry and partly in pain from acid reflux.  I arrived home with a good milk supply. I was pumping plenty and came home with tons of frozen milk.

When Noah arrived home the feeding extravaganza took a toll on me. I was waking to feed him and pump. It was insane. I continued to pump every 2-3 hours for another month. Noah was drinking 2-3oz of milk every 2 hours. By this time I was pumping 3-4 oz of milk from each breast. I thought that was completely normal. Since he was not drinking all of the milk I pumped at each session, I started freezing.

By the 3rd month I stopped pumping every 2 hours and switched to every 3 around the clock. I continued to pump plenty of milk, 4-5 oz from each breast. Noah was now drinking 4-5 oz every 2 hours. I was still over producing so I kept on freezing. By the end of this month I could not take the acid reflux...I researched natural remedies and tried Colic Calm. That worked like a charm. Hooray for no more reflux... meal time was more pleasant and Noah was more pleasant as a result.

By month 4, I was pumping every 3 hours during the day and only once at night. I was tired and refused to wake up just to pump. If Noah was sleeping (which he was) I was going to sleep. I would wake in the morning and pump out a total of 16 ounces of milk; during the day I was pumping between 6-8oz each pumping session. I was still overproducing so I continued to freeze and store.

By month 5, I was still pumping. I pumped every 3 hours to follow Noah's feeding schedule and stopped pumping at night. I still had an over abundance. I continued to freeze. Noah was now drinking 6-7oz every 3 hours.

By month 6 I was just shocked. I started trying to feed Noah frozen milk but he would not take it. He just loved fresh. I decided to use my frozen milk for cereal and solid foods. Noah started drinking 8oz of milk every 4 hours and so I started pumping every four hours. I still pumped 16 oz in the morning and 8-10oz at each pumping session. Still plenty of milk and an over abundance of frozen milk stored.

It's been 8 months now and I can't believe that I am still attached to this pump. I now only pump 3 times and pump anywhere between 6-8 twice a day and 10-16 oz in the morning.  Noah still prefers fresh milk and I am still trying to go through milk from February. 

This has been one wild ride. I have learned to pump in the car, at the beach, even at an amusement park. It's been a tough job to keep up. The demands of caring for an infant and toddler and a home plus responsible pumping is hard. No matter how much time I dedicated to pumping I have to acknowledge that my abundant milk supply is extremely rare and is a testament to God's grace and blessing upon Noah. Breast milk, in my opinion, has truly helped Noah recuperate from all his battles.

While I wish I could part ways with my pump and be free like a bird, I feel pressure to keep up what I started. Noah is at high risk of suffering from ear infections which could lead to hearing loss due to his cleft. Breast milk has the magic touch and PRAISE the LORD Noah has not suffered an ear infection to this date and I have to attribute that to breast milk. Therefore the pressure is on. I hope to pump until the first year. I am praying that Noah's breast milk can help Noah heal and recover from his cleft surgery. So here I go...another 4 months to go. Can I make it? I have no clue but we shall try.

One Pumping Session

Month 8...

By 8 Months Noah was sweeter and more active than ever. He was cruising faster and going for everything. We introduced NO at 6 months but let's just say "he is not a good listener" in his brother's words. He is developing quickly in his fine and gross motor skills. His speech is not advancing as we hope. We aren't sure if it's to blame on his cleft or if he will develop speech a little slower. He babbles a whole lot and makes lots of noises. Sometimes he sounds like he is saying a word but then its not. He continues to say MAMA and we are convinced he knows the meaning of it.

We shall keep reading, singing, and talking...can't wait till he surprises us with new words.

Month 9...Walk this Way

At 9 months Noah got to visit Florida and meet his grandpa. He does well as a travler over all. Nap time is our struggle still at times. I'm not sure why he still has such a hard time falling asleep at this point. If he is in his stroller, carseat, or in his crib he is perfect. If not...he has a hard time settling even in my arms. This is a very stressful situation. Otherwise, he is doing well.
At his check up he weighed in at 21 lbs and 27 1/2 inches long. Still short but a lot chunkier. He saw Plastics and scheduled his cleft palate surgery and will have ear tubes put in at the same time.
A week before celebrating 10 months...He walked. He took his first 5 steps and in a matter of a week he was attempting to walk across the room. Sometimes he is successful and well other times he trips. Not bad...I wasn't sure if I should really expect him to walk so fast but he keeps on surprising us. He also has been enjoying lots of table food. He does awesome with chunks and new textures so much so that we rarely puree anything for him. He loves to eat.

We are counting down till his next surgery...praying it will be the last.

10 Months...Go Go Go

At 10 months Noah is walking and running. He even learned to stand up independently...no more pull to stand. He is eating all types of table food and is now solely on frozen breastmilk. We introduced some Similac to his diet just to have it available after his surgery. We wanted to make sure he didn't have any reactions to it and he didn't.We continue to try a sippy cup but are having no luck; he just seems not to be interested. :/ He is in preparation to have his cleft repaired a month before turning 11 months old. We are looking forward to what we hope will be his last surgery. We are planning his first birthday..it will be a big celebration.

Cleft palate Surgery

On November 29th Noah underwent cleft palate repair surgery and ear tube surgery. He was scheduled to arrive at noon at the hospital but for typical hospital reasons he wasn't taken back to surgery until about 4pm. After 40 minutes we spoke to ENT and they confirmed that everything had went well with the ear tubes...though upon looking in his ears he had lots of gunk and some puss they had to clear out. ENT believed he had an ear infection but had yet to show any signs. They cleared it out and prescribed some antibiotic to finished clearing up everything.  Cleft palate surgery was a success and Noah's Plastic Surgeon was pleased with the outcome and does not anticipate the need for further surgries in the future. We Praise the LORD for seeing us through once more.

Though all went well,  recovery was anticipated with lots of pain managment, limited slow feedings, and limited mobility because of the no-nos. But within minutes of coming out of the OR and still needing morphine for the pain, Noah was trying to crawl and stand. He had two more doses of morphine that evening, the last being at 9:30pm...while cranky and in need of mommy's arms...Noah didn't need any further pain meds. By the morning it was clear that he was dealing with the pain like a champ. He wasn't going to be limited because of the no-nos and he had started drinking 3-5 oz of milk. The no-nos weren't stopping Noah...he was crawling, standing, and walking in his crib with lots of  energy. By that evening we were on our way home with meds for pain management which he never needed.

No one would know Noah had had surgery just 24 hours prior...maybe they thought it wasn't true. Noah was walking and playing as if nothing had hit him. Obviously he did have surgery and we give allllll the Glory to God for seeing him through....for easing the pain...paving the way for Noah to resume feedings..for making him a champion! I give due credit to Noah's creator for other children can't manage the pain and discomfort nor resume feedings as well as he did.

Three weeks later Noah visited his Dr for Post-Surgery Follow up. They gave the green light to take off the no-nos, resume an all-you-can-eat diet, and schedule a year's appointment. While everything to this date has been successful, Noah's Doctor once again reminded us that while the palate was repaired we won't know the need of another palate repair surgery until he is older and has develop significant speech (probably about 3-4 years of age). For now we are thankful that he has healed and continues to grow. We shall jump through any future hurdles with the grace and mercy from above.

 Before Surgery

After

Home 24 hrs later

 on the run No-nos and all

Cleft Palate Surgery: What to Expect

As a PRS parent cleft palate surgery is in the horizon for you. The following serves to give you an example of what to expect. It is solely based on our personal experience at the Children's Hospital of Philadelphia and is based specifically on Noah's own journey. Please remember that all hospitals handle Cleft Palate Surgery differently and in a personalized way to meet the needs of your child.

Cleft Palate Surgery was scheduled for Noah 6 months before. Noah had a cleft both of the hard and soft palate. Typically Cleft Palate surgery can take place between 11-15 months of age. Because I was scheduled to return back to work after Noah's first birthday I really hoped that his cleft palate surgery would be scheduled at 11 months. This would provide me the time to care for him before returning to work. His surgeon scheduled him for November 29. Noah was not allowed to eat anything past midnight the night before surgery  except breast milk (3 hours prior to arrival time) or formula (6 hours prior to arrival time). Noah was scheduled to be at the hospital at 7am. I fed him exactly 3 hours before and arrived on time. Unfortunately our wait was super long and Noah was not taken until 4pm. No water or food during the wait time.

Once taken Noah was changed into his hospital gown. They inserted an IV and began an antibiotic. Noah fell asleep in by arms. When he was all set, the nurse carried him off to the OR. We watched they walk away. We waited for just about 2 hours. At that time his Surgeon came and told us that the surgery was success. He had been able to close it completely. No holes or openings were left.

We met Noah in the OR recovery room. He face was swollen. They had done their best to clean him up but there was dry blood on his face. He cried and moaned of pain. He was getting small doses of morpheme every 5 minutes. He was not intubated by this time nor had a nasal canula. After a period of time we got transferred upstairs to recovery. Noah continued with pain management. We tried to feed around midnight but he was not too interested. He slept well on and off my arms. By mid morning he ate and started to take a few ounces at a time every few hours. By later morning he was standing up and crawling in his crib. Now feeding depends on what your doctor recommends. Some doctors don't want the child to use a nipple and prefer a sippy cup. Noah's doctor said a nipple was no problem. He had been using a pigeon nipple since birth and he continued to during his recovery. he was not allowed to eat solids for about 3 days. When he started on solids again we did stage 1 for the next two weeks. Total healing time was about 3 weeks. During the tree weeks we had to be very careful to not let him put things in his mouth. He only used his bottle. Noah didn't use a pacifier so that wasn't a problem. He wore the no-nos for the full 3 weeks. That did not prevent him from running, walking, standing up, or playing (well some playing was difficult).  He recovered nicely from the cleft palate surgery. While his Doctor couldn't guarantee he wouldn't need another surgery he said it was unlikely at the moment. We would have to wait and see how his speech developed.

If you want to asked a more specific question, I would be happy to try and answer it.

Month 11...time has flown!

During his 11th month Noah has spent most of his time healing. However in those weeks he continues to amaze us. He has learned to identify more objects and people. He has added the /b/, /g/, /n/, /k/ sounds to his speech and is attempting to say more words like Abuelo, Abuela, Caleb, and Hello. He isn't always successful at saying it clearly but he sure tries. He also is saying more Papa and Dada.

Noah has been communicating in some positive ways. If he wants to read a book he will sit and turn the pages alone, if he wants you to read it he will give it to you and sit or raise his hands so you can sit him on your lap. He also knows to respond to "dame" (give me); he doesn't always obey but he is getting there. He has become more obedient too.

On the other hand he has picked up on that little thing of showing his displeasure by throwing himself on the floor. Um, really? I thought that wasn't happening till beyond 18 months?? If he wants to act like a big boy he better start behaving like one...maybe get this potty training thing going. :)

No luck with a sippy cup yet and he still prefers his old nipple. But nothing is stopping him from eating all types of solids. He also finished up a week on frozen breastmilk, did a week and a half on Similac, and now is on cow's milk. Hip Hip Hooray!

Another good thought to share is the amazing relationship he has with his brother. He lights up at the sight of him in the morning and upon his return from school. He loves him dearly and they both love to play together.

We are in the preparation for his first birthday...we hope all our family and friends can come share this very special event and hear the testimony that is Noah.

Happy Birthday Noah!

On December 30th we celebrated Noah's birthday. We had a big Wild Jungle Party. We invited all our closest family and friends. We had face painting, games, and a special video made just by Daddy. Noah ran around laughing and playing.

Developmentally Noah is on a roll. He has been talking and singing and dancing. He is so affectionate for others. He loves to hug and kiss his brother and cousins.

We look forward to Noah's first year full of new adventures and milestones.

A Mother's Reflection

What a wild year it's been. So many long nights. Enough tears to fill up one of the great lakes.  Many days filled with fear and anxiety. Moments of disappointment and failure. Moments of momentous successess. Moments of resounding laughter echoing about. Moments of  joy bursting at the seams.

December 31, 2012....a year ago to this date I was home with a broken heart counting down to a new year with a broken family. Three of us at home and one intubated at the Children's Hospital. I had never felt more miserable, alone, and empty then on that very night. I wasn't even prepared for what was coming my way but I soon learned that this feeling of sadness, worry, and fear would overtake me.

I could remember how encouraging the first month was with many family and friends reaching out to us via phone calls, visits, texts, and emails. Looking back the first month was difficult but it was the months that followed that put me through the fire. It was having Noah home that brought me to my knees. The next few months I was consumed with cleaning wounds, dealing with infections, battling severe acid reflux, nap training, pumping breastmilk, learning to be a mother of two, and not neglecting my husband. I am thankful for those who never forgot about us past the first month. Those who still visited, still asked about Noah, still called, still sent messages of prayers. I know God heard all those prayers and was merciful to us. I am more thankful that the Almighty never let me go. He was there by my side at every step.

This entire experience has humbled me. Who am I not to have trails or troubles? I am nothing but a sinner. I deserve this and much more. I am grateful. I have learned patience, love, grace, mercy, forgiveness, and faith. For my precious Noah all I can say is "you are fearfully and wonderfully made." God has chosen you for this experience. You will grow up and share this testimony. Great things will come from you. And three simple words that have a meaning deeper than the depths of the ocean: I love you.

If you are dealing with PRS or any medical condition, Keep your Faith in Christ. It is HIS peace and comfort that has seen me through the tears I have shed. It is HE who will continue to guide us and see us through this journey. We pray that the hardest moments have passed but nonetheless we have complete confidance on our Father above who holds Noah and our entire family in His hands.

A thank you for all who have supported us through every single step, every surgery. Who celebrated the ups and hugged us through the downs. We see Christ through you.

13 months

We officially have a toddler on our hands. Noah finally went for his 1 year check up at 13 months. His doctor was excited on how well he is doing. Despite battling a stomach bug which affected his diet for a week Noah weighed in at 23lbs. I really believe he lost 1-2 lbs. He measured at 30 inches long. He is 50 percentile in all.

He passed his evaluation with flying colors. His gross and fine motor skills are developing. His communication and social skills are improving too. Noah calls Mama and Papa. He identifies lots of objects and says a good 5 words. He has tried to say Leche, Agua, and Bunny. It's all a work in progress but he shows real promise. He babbles a whole lot. He mimics lots of sounds too. We look forward to the next couple of months...each sound and word that we hear him say is like a sweet melody.

Noah really enjoys playing with his brother, playing peekaboo, and reading books independently. Sometimes he brings the book and then turns around so you can sit him down on your lap to read. He usually sits for a minute or so but then quickly moves on. However, when he is alone he can sit and turn the pages of a book for some time.

He has become a picky  eater over the past week. I'm not sure if it's all a result of the bug he was fighting. One thing we are trying to work on is transitioning from a bottle to a cup. We've tried all types of sippy cups with all sorts of drinks inside to get Noah interested. We haven't had much success. I'm not sure if it's partly because of his cleft (despite its repair), his love for the bottle, or a little of both. We hope that by his next appointment at 15 months we can say that he has been weaned off the bottle.

We are working on updating his feeding schedule. He is doing well now but we want to change it up as part of the weaning process.

That is all for now. We are blessed to see Noah grow in all aspects and we are thankful to GOD for always providing the healthcare, health professionals, and funds that we have needed thus far for our Noah.

Sippy Cup Success!!

Our sippy cup journey started at 6 months of age. Since then we have invested in many different sippy cups, modified different sippy cups to no success. At Noah's first year visit we discussed our concerns with the Dr. As a mom I wasn't really sure how much of the sippy cup battle was due to Noah's palate or just preference. Our Dr. shared that it was most likely a preference issue and not a result of his palate. As of 11 months Noah had been showing a little more interest in the sippy cup but not enough to drink an entire serving of anything. He wasn't a juicer, or a water boy; he really just prefered milk. Our efforts didn't cease. We are so happy that at 13 months and 10 days we are successfully off the bottle and on a sippy cup only! Yahooo! Today marks 1 week since we stopped offering Noah the bottle and only offered his milk in his sippy cup and to our surprise he has taken all his milk without any problems. In fact, he seems to be more enthusiastic about drinking his milk than ever before. We are currently using the Born Free 12+ sippy cup with ehe valve. He is in love with it. We hope to introduce a straw cup over the next month. :) So long bottles!!!

Seems that all along it wasn't a cleft palate or palate repair issue....just a preference. Praise the Lord!

Talk to Me Baby! Noah's Speech Development

I remember the day we were told of all the health concerns and possibilities related to PRS and a cleft palate. I remember being told the concerns about speech development and the need for speech therapy. I was scared and heartbroken to think that perhaps Noah would struggle with his speech. We were told repeatedly that truth was they would not guarantee he would have issues or that we wouldn't have issues. We decided again to pray and leave it at the hands of God trusting that His Will for Noah was perfect no matter what awaited.

At his 6 months check up we were asked about his speech. Well we had to admit that Noah wasn't mute, he made lots of sounds and noises but besides "la" he didn't make any other consonant combinations. He hadn't said Ma or Pa or Da. I remember crying thinking that it would be long before I would hear Noah call me MaMa. But at 7 months, a day after my birthday, Noah said "MAMA." Clear. Loud. Meaningful. Since then Noah has produced more sounds and said new words and has attempted to say other words. We speak to him both in Spanish and in English but mostly Spanish at the moment.

I've decided to make a list of things to keep track for our sake. The *** mean that it is a consistent part of his vocabulary attached to the correct meaning. Some words he has tried to say not with every single sound attached to it of course.

7 months- Mama***
11 months- Papa*** and Dada*** and Isaac***
12 months-Bomba*** and ball*** and ibo (libro) and eche (leche)
13 months- verde and iba (arriba) and buelo/buela (abuelo/abuela) and mas***and baba*** (bunny) and ugo (jugo) and ba-bye*** and ijah (Elijah) caeb (Caleb)***
14 months-ball*** ma (mas)*** huevo***
15 months-nathan, danny, i love you***, ye (yes), elmo, big bird, sings "bom bom bom"
16 months-wawa*** (agua), baball (basketball), michael, nana, titi, mami, papi***, That's me, mami, naty, nana (banana), lele/eche (leche), touchdown***, titi***, papi***, mano***, balloon***, luna 

ENT Post Surgery Follow Up!

Noah finally had his ENT post surgery follow up.  All looks good. We haven't had any issues post surgery and no ear infections. We also have not had any concerns with hearing. Since birth we always knew Noah had a keen sense of hearing. He always reacted to every noise that was made. Nonetheless, with the possibilities of hearing loss or hearing concerns related to the cleft palate we always prayed that he would enjoy the beautiful sounds God created. Today he had his second hearing exam; thanks to his Creator, he passed. ENT and Audiology want to see him every 6 months.  We move forward thankful everyday that to this date he can hear us.

 

14 Months

Noah turned 14 months at the end of February and he is one funny kid. He is learning so much and in turn teaching us a lot too. So far he is growing taller and chunkier. He loves to eat; my least favorite thing is how messy he is. I guess I got spoiled with his big brother being a clean eater. He has learn to roll a ball, throw a ball, and say the word ball consistently now. He loves to dance and spin. Noah loves to sit and look at books. He still has not fallen in love with TV or any particular movie. He recognizes who Elmo is and attempted to copy his song... "Lalalala...lalalala..." Noah loves to play instruments. He loves playing the piano, drums, guitar, and blowing his whistle. Noah understands "vamos a banar (let's go take a bath) and vamos arriba (let's go upstairs) and vamos a dormir (let's go to bed). He responds to all these and climbs up the stairs. He also has fallen in love with holding his own utensils...we are working on helping him learn to use them. He has the idea and has surprised us on how well he does with it. He has learned to point to YOUR nose when asked. He knows to show you his teeth and tongue. He has identified his hair and nose but won't do it everytime asked. Noah surprises us every day. He repeats lots of things even if he doesn't say it back everytime. These are just a few of the funny things he has done thus far.

We look forward to his 15 month check up in May. We also need to schedule another ENT appointment for the summer.

Noah loves playing with his brother Caleb. They truly melt my heart when they play. Noah is enjoying his time at Abuela's house when daddy works and his time with Daddy has him walking in a straight line. :)

15 Months

Noah is a happy and active 15 month old. He loves all sports and balls; in fact anything that is round he refers to as "ball." We are looking forward to his 15 month check up at the end of the month; he will actually be 16 months by then. He is a chunky little monster and we think he has had a growth spurt...he looks a little taller.

He loves to play peek-a-boo. He hides behind his hands or any object, looks at you and says "BOO!"

His speech development seems to be coing along. He has been really copying everything he hears. The sweetest thing he has repeated has been "I LOVE YOU!" Ahhh super sweet. He even put his first two words together... "uh oh Mama," he used it correctly and all! We hope he continues attempting more words and consistantly using them.

I shall need to make his ENT follow up appointment for this summer. They want to see him every 6 months. He won't follow up with Plastics until the end of the year.

Teething: well his 6th tooth finally pierced his gums...but as with all his others...it will be a couple more weeks before it's really visible. Having few teeth isn't much of a concern with eating. Noah eats anything and has not had issues mashing up his food.


This month's adventure included a trip to the ER...as Noah suffered a dislocated elbow (Nursemaid's Elbow). I had warned him he had used up the allotted hospital stays for his lifetime but well we had to do a visit. Instantly after his elbow popped back in he was himself.

16 Months...

(Noah doesn't wear glasses. He was just playing with moms.)

Happy 16 Months to our Smarty Pants! In a month Noah has grown a lot. At his check up he came in 65 percentile in height and 75 percentile in weight. He is growing beautifully. I am grateful to his Creator for this given that all the PRS sources I read described children who were small and often looked a year younger than their peers. I worried Noah would be the smallest kid in his class...this thought overwhelmed me at his birth and throughout each day of his first year. Every waken moment I thought on ways I could help him grow. But God's grace has been poured upon our Noah and we feel blessed.

So far Noah is adding more words to his speech and has repeated lots of things. I constantly bombard my school's speech therapist (I am a teacher.) and ask her for advice and activities I can do with him. I remind myself that each child develops speech at a different rate. We shall see how much his speech explodes over the next few months. He really has been repeating many many things and has added some new consistent words to his speech.  Here is the list.

Repeated words/phrases:
That's me.
babeball(basketball)
mami
naty
nana (banana)

New words used often:
wawa(agua)
lele/eche (leche)
touchdown
titi
papi
mano

In other developmental milestones, Noah has ben using utensils (spoons, forks, sporks) during feedings.  He practically feeds himself 90% of the time. I have a hard time letting him do so most times because he is a very messy eater. Otherwise he prefers to feed himself. He also learned to use a straw cup. I was very worried about this but he accomplished it.  Noah now has a total of 8 teeth. Still no molars but it isn't stopping him from eating everything and anything. Noah has also combined his wave and the word "hello" when greeting people, often strangers. He enjoys saying hello and chatting on the phone or anything that looks like a phone. Noah has also begun to communicate effectively with a yes or no nod. Anytime we ask him a question, specifically during meal time, he nods no or yes. Super cute!

In fun news, our family traveled to the west coast on air and Noah (and his sibiling) did awesome. Noah surprises us often being a great traveler and explorer in training. :)

In a positive foreshadow, Noah now tells us that he pooped by touching his diaper. At home he rushes upstairs to his room. And when asked he nods yes and sometimes manages to say "yea." I hope this means painless potty training.

Over all, Noah is doing spectacular. He is scheduled for his next ENT appointment in late July and I shall be calling Plastics in the summer to schedule his check up for the end of the year.

We are grateful and humbled to be watching Noah grow happy and healthy. We know he is willful and  energetic but he is also very loving and heartwarming. To God be the Glory for our Noah!

17 Months...Joyful

Our Noah is 17 months old and it's hard to believe. He jumps. He sings. He babbles and is communicating. He is 150% all boy. Active, curious, and busy. We went camping recently and Noah and his brother  Caleb enjoyed the wilderness. Noah ate dirt and touched the bugs without reservations. 

As it goes, Noah is doing well. He is talking and saying lots of new words. He even sings. I'm beginning to forget the count on the words he is saying. We can say, without hesitation, he is saying a consistent 10 words, if not a little more. We are keeping a close eye on this just incase he needs speech therapy we can start as soon as needed, but so far his Dr. says he is doing well. 

Noah loves everything that has to do with water. He is keeping us busy chasing and correcting him along the way. But his hugs, smiles, and kisses are priceless. He is doing amazing and his smile every morning is a great reminder of God's grace. 

18 months....Busy Boy

Can't believe it's been 18 months since our world got turned upside down and we began an unpredictable roller coaster. Today, I have never felt more grateful and blessed to see Noah growing happy and healthy. I can't give the credit to the doctors and care he has received, although without a doubt they were the means through which the Lord completed HIS work. But all the Glory and Honor to the Creator of all who reigns in heaven!

While some days Noah's energy and curiosity can get the best of me, I can't help remember all the concerns and fears that once consumed me. I am instantly grateful for the wild thing he is.

At 18 months Noah is jumping high into the air, identifying things from a book, saying lots of new words, and definitely communicating his needs. He loves water and everyday there is a tantrum to get him out of the tub. Looks like swim lessons will begin sooner than we anticipated. We can say we can't get enough of Noah's affection. It is priceless. He often hugs us all. He loves hugging and playing with his older brother, Caleb. He enjoys playing with other children too. Oh and yes!!, What a social kid he is. Out and about he is waving hello and good bye to EVERYONE!!

Here are some new words he has added (or improved) to his vocab:
pipi, cacqui, agua, done, down, me, bye-bye, go, bamos, beep-beep, twee, nite-nite, bird, mine, bunny...

So far so good...I'll update his weight and height at his 18 month check up in a month. He will also be seeing ENT in about 3 weeks to do a routine check up on his ears and hearing.

19 months ENT Appt.

Noah is now 19 months. He just had his 18 month check up. He is growing big and fast. He is now 90th percentile for weight at 28.10 lbs and 51 percentile for height at 32 1/2. He is developing his speech. He is communicating using the words he already knows. He is pointing to objects, naming objects, recognizing people by name, identifying body parts, and making lots of connections about his world.  Noah is singing and dancing. He is running, climbing, jumping, and kicking. He really is doing well all around. He has been working on three molars in the past month too!

We are working on speech still to help him put his first two words together and start using phrases.

Noah recently had his ENT appointment and his ear tubes are still in place and his ears have been happy and clear. His audiology appointment also went well with another successful hearing exam. We can't help but thank the ONE who has held him before we even knew and who continues to see Noah through, Christ.

22 Months

It's been awhile since we have updated Noah's story. The summer came to a close and with that Mom returned to work.

Noah just celebrated 22 months. He is growing and more energetic than ever. We have officially claimed the terrible 2s even though he is not two yet. Nothing much is new. Noah continues to feed well. He is climbing on everything; he likes to move boxes (or pretty much anything) to use as a stool to reach and touch things he (most times) shouldn't be touching. He is also doing relatively well with his speech. He is putting two word phrases together like "goodnight mami" "good night daddy" "bye mommy" "mommy, I love you" "one minute mommy." He also is doing well communicating his needs. He is understandable to us 80% of the time. We are working with him by doing lots of reading, talking, and singing. Big brother Caleb is a great help; he often has Noah repeating words. Noah is doing well with repeating just about everything and anything. He is deleting a few sounds and so we are keeping an eye on that.

Otherwise, we are now looking forward to celebrating his 2nd Birthday. We can't believe we started this journey just about two years ago. At times I find myself reliving those hardest moments and I shed tears of pain which quickly transition into tears of gratitude. We couldn't be more humble and blessed by God's mercy and faithfulness in our hardest time.

With this experience our family moves forward with a deeper understanding that the creator of all is leading our family and is walking by our side through every step. We are blessed to be expecting our third child in the next 6 months. Noah will become a big brother and it should be an interesting transition for our baby. He knows the baby is in mommy's belly and he loves to give it a kiss.  He is ever more sensitive to seeing babies in pictures and in person. We hope all this is building the excitement for our new family member.

Super Two

We can't believe it's been two years since we welcomed Noah to this world and were forever changed. We are humbled and blessed to share that the past year was a great one. Watching Noah grow and learn over the past 12 months has been a joy. We couldn't help but celebrate Noah and his big brother Caleb's birthday with a Superhero Bash. We had so much fun and know that Noah is truly a superhero with his strength, fearlessness, and invincibility. :)

Noah has grown a lot and here is the scoop:
-walking up and down the stairs.
-talking with 50+ words, phrases, and even questions.
-running, jumping, and kicking.
-sharing and not sharing.
-coloring, building, and destroying.
-reading books.
-singing.
-counting.

Noah recently had a speech and overall developmental assessment (mom's request). We are grateful to know he did not qualify for any services at the moment. The therapists said he is communicating well and he is right where he should be in his development. This puts us at peace knowing we have no need for concerns. His next evaluation won't be until December, right before his 3rd birthday when he starts seeing the Cleft Team.

In other news we have started potty training. It's been exactly two weeks and Noah is doing great. NO accidents and 100% potty success. We hope we can keep this up as we are welcoming a new member to our family this Spring.

We have yet to know what Noah's weight and height are now at 2 but his wellness check up is in a week or so. We hope to hear good news about his growth.

That is all for now! God is gracious and merciful!