Update

It's 12:30a, October 3, 2009. My son is soundly sleeping as I update this blog. So many things have happened since my last post. So many blessings. A recap:

July- we finally started receiving our Private Duty Nursing hours with PSA- the home health agency. We had qualified for over 100+ hours. We now have nurses M-F from 7a-7p and night nurses on M, W, and Th from 9p-7a. Now we can somewhat sleep. Having nurses is a blessing indeed. Without them, I don't know how Paul and I will be able to function. Of course, we still do everything for Caleb. It's just nice to have assistance.

In July, Caleb also had another Modified Barium Swallow Test and it revealed he still had silent aspiration.

The picture above is the MBS test. He is starved first, then fed formula with varying consistencies. A live x-ray then follows where the food goes. In his case, some food went to his lungs. Not a good thing.


We also started OT/PT with ECI. The therapists continues to work with his motor skills. I think Caleb is doing really well. He can sit up for hours! He still can't roll over and crawl. This delay is correlated mainly because of his trach and his g-tube being in the way, in my opinion.

Above picture shows he can sit up unsupported. So proud of him!

The same month, we started his twice/week Speech Therapy. She works closely with Caleb with his Passy Muir valve and his swallowing. So far, he hasn't really taken anything by mouth yet. We're still with the formula via g-tube.

We also found out that it's doctor's orders to always have at least 2 adults when transporting or traveling with Caleb. If we are not in compliance, CPS can get involved. Good information to know.

August- we had a very big scare. Neurosurgeon thought that Caleb may have to undergo brain surgery. This was very concerning. I couldn't fathom yet another surgery. So we went to day surgery for an MRI. Through prayers, the doctor decided against it...for now. He scheduled us for an MRI in March to reevaluate his cerebral cysts. God is good. I have faith in Him.

September- Caleb got really sick with a bronchial infection. This required him to be on O2 for two weeks. My DME company decided to give us a concentrator. That way, we always have access to oxygen.

The same month, we met with the Metabolic Geneticist. He stated that all genetic tests he had ordered turned out to be negative. This was a relief. However, to the doctor, that meant two things: Caleb's condition is rare or unknown or technology isn't available yet. Doctor seemed frustrated about not knowing Caleb's diagnoses. It appeared he was challenged. He recommended we not have anymore children until they can determine his diagnosis and they can be sure that what ever it is... isn't hereditary. I had mixed emotions.

On September 30, Caleb cried for the first time since he was trached. For most, a crying baby is normal. Some may even find it annoying. To Paul and I, it was music. Our baby boy can cry. Of course, only with his Passy-Muir valve. But regardless, it was a huge milestone. I cried tears of joy.


Caleb is 8 months now. Yesterday, Oct. 1, we met with his pulmonologist and his ENT doc. They are talking about a possible decanulization (sp). It means trach removal. Yesterday was a happy day. Then it hit me, without the trach, we won't have nursing, without the trach, we may lose Medicaid. He's near his lifetime maximum for our private insurance. What are we to do? I kept stressing about it. Just because he doesn't have a trach doesn't mean all his other medical issues will go away. We still need insurance. I pray that somehow everything will be alright. All I can do is pray.

On a personal note, I'm really beginning to feel alone here in Texas. It's just Paul, me and Caleb. Some friends and our nurses-whom we've grown to love and consider as family. We really need to be with family.

I asked his doctors if we can travel to Vegas during the Thanksgiving Holiday. It seems just getting there is a process. Have to get clearance from all doctors, then the plane has accommodate us-since we have so many medical equipments.

I'm optimistic we'll be able to travel. I need a dose of family right about now. I'd love for all to see my Caleb.


I love this pic.

Caleb Update

So, the last time I've updated this blog was June 2. I have very good reasons for that... We have been so busy. To keep you up to speed:

• May 28- Private Duty Nursing ended and we were pending Medicaid application
  
• June 2- Caleb, Mom, and Dad checked in at a nursing home in Copperas Cove (2 hours away from home) to fulfill the waiver requirement to get Medicaid. This was really difficult, as this was the first time we travelled with Caleb.


• June 4- Doctor's appointments in Austin. They told us he was in the 97th percentile on weight.


• June 8- I went back to work Full-Time. That was a very emotional day. Since his birth, I have never parted from him. I recall crying the night before. Since returning to work, I always come home from 12pm-1pm to see him and do his trach care.


• June 24- Physical Therapists start their visits. Caleb begins his daily exercises to help him reach his developmental milestones.


• July 2- First Trach Clinic Appointment- Caleb was seen by many experts to determine his progress. Paul found out that day that if Caleb is transported by less than 1 person, CPS will be contacted. (SCARY... we will always be in compliance)


• June 6- Medicaid approved and we begin the process of finding a Home Nurse Agency


• July 14- FINALLY get nurses. Allison and Sandy begin their Monday through Friday 7am-7pm shifts. (It was my personal request not to have nurses on weekends, so we can be a family)
  

He is six months now at a whopping 22 lbs. He demonstrates excellent head control but needs to work on trunk control, belly time, rolling, and other developmental milestones. We try not to compare him with other babies because we don't want to be disappointed. We are very excited every time he does something for the first time. He laughs, he giggles, he wiggles, but without sounds.

During the time we were without nursing help, Paul and I worked shifts. Our rule was "sleep only when the other's awake." Naturally, we have not slept on the same bed since Caleb's homecoming. Our sleep schedule is brutal, especially since I work weekdays 8am-5pm. There were days I slept only for two hours!!! Paul quasi-quit his job. His boss allowed him to stay and work 9am-1pm on Saturdays. It may not be much, but Paul's happy.

Caleb and Daddy stay home and I'm so totally in love with Paul!! He has proven to be a wonderful caretaker for both Caleb and I. 99% of the time, a home cooked meal awaits me for lunch and dinner. Paul and Caleb have bonded as well. At times when Caleb is super cranky, Dad can calm him down.

Work is work. They have accomodated me quite a bit and they are supportive of my home situation. I have made the decision that if my work ever interferes with my home life, I will do whatever necessary so it doesn't happen so.

To others, our daily life may be challenging, and it is... but it's also our way of life. We have accepted that our child has special needs and we will do all we can to provide for him. We are blessed everyday in many ways. We thank God for our little miracle baby.

Finally Home

It's been a while. It's now June and I haven't updated this blog since Mother's Day. I will provide updates.

• May 14- After several denials for Private Duty Nursing (24 hr. care) from my insurance company, they finally gave in. They allowed for Caleb to have 24 hr. nursing care for a duration of two weeks only.
  
• May 14-May 28- We had two nurses daily to assist us in caring for Caleb. As we had expected his care involves constant supervision. Paul and I were able to sleep while nurses were here.
  
• May 18- Caleb had his first appointment with his pediatrician. He weighed 17.2 lbs.
  
• May 27- Caleb returned to his pedi and weighed in at 18.6 lbs-- what a gain in a week! And he's only 4 months.
• May 28- Caleb, his nurse, Paul, and I took him to his surgeon to change out the G Button. He also went on his first excursion. We ate lunch at a Chinese Restaurant. Then we went to the Outlet Mall. Was that an experience! We brought so many medical equipments with us. We've decided we're not going anywhere unless it's for medical reasons.

We pretty much kept the NICU schedule. I don't see a reason in changing it- life is so much easier when it's on schedule. Only thing we revised is a morning bath or bed/sponge bath and oral care. So yes, he gets 2 baths daily.

Caleb is so accustomed to his routine as well. He's improved so much during the most difficult part of the day--the trach care. We do this twice daily. During the procedure, he mostly just lays there in a hyperextended position and sucks on his pacifier. He doesn't even get restrained anymore.

His room is now organized. All medical supplies and machines are put away. We joke about having a NICU room in the house- it resembles one. Since we no longer have nursing care overnight, we moved Caleb in our room. We're all used to the various noises his machines make.
Caleb tends to sleep most of the day. But when he is awake, he is alert, kicking, and playing around. Oh another thing, he was spoiled by his wonderful home health nurses. They held him most of the time. So now... he loves to be held. Sometimes, can't even put him down.

Caleb demonstrates head control and touches my face and will play with rattles now. He smiles quite a bit as well. Because of his trach, he's muted. So we can't hear him giggle, coo, or cry. As a mother, I feel I'm deprived of hearing my baby's talk/sounds. This also means that it's difficult to sleep . Because my Caleb doesn't cry audibly, Paul and I fear sleeping too soundly. So our solution you ask? Well one of us is awake, while the other sleeps. This translates in walking zombies.

But at least we're home.

Mother's Day

My first Mother's Day. Paul was so sweet. He took care of Caleb most of the day so mommy can get some sleep. I have been exhausted from sleep deprivation- this was a welcomed luxury. I also got breakfast in bed. While Caleb napped, daddy left the hospital to get mommy breakfast from Denny's. A home cooked meal of a typical Filipino breakfast would have been awesome, but it's hard to cook when we haven't been home for almost four months.

There's many reasons to be thankful for. Biggest one is that God gave me a son who is stronger than anyone I know. A son who fights for his right to be here. A son so perfect in his own way. A life partner who will do anything for me and our child. And family and friends who have been there with me through this most difficult time in my life.

Rooming In Updates

It's our last night of "rooming in." It has been a difficult venture for us. So far, no major mishaps. Although Paul and I are still in desperate need of 24 hour care nursing (that insurance won't provide), we're confident that we can do this. We have to, Caleb's our baby.

The most difficult has been staying up late to give him his medications and to perform regular suctions in his trach. Also, since his cries are muted, we can't hear his cries at night. We literally have to be awake to know he is crying and needs attention- what ever it may be. To remedy this, I have requested to be sent on an an oxymeter/pulse sock saturation monitor. With the machine, it will loudly alert us if he is desating.

The four nights of actual care for Caleb just makes us realize that he is a special baby and we need assistance from a medical staff at all times. At least, until we get acclimated with our new situation.

There's so much to learn still and so much to get accustomed to. Few more things we need to do/figure out:

• How to organize his necessary medical equipments in one convenient, large bag/suitcase- whis is to include his CPR bag, meds, trach care, G-tube supplies, suction, etc.
• How to schedule our lives around his needs (who sleeps at what time and who wakes up at what time)
• Contact the local Fire Station/EMT in case of emergency- we need to do this in event of emergencey- that way they already know where to go, what the problem is, and Caleb's medical history
• Contact the electric company that our home cannot go without electricity- because he is dependent on machines that require power
• Contact a compounding pharmacy and schedule medication pick up (closest one is 30 miles away from home)
• Contact a home health care agency
• Contact various agencies for therapy

To top it off, we have to work out a plan B in event my insurance company do not approve 24 hour private duty nursing. That plan is to get medicaid for my medically dependent baby.

Rooming In

Despite the fact that the request for the nursing care was denied, we're still optimistic that the insurance company will have a heart and approve it. Thus, the neonatologist and the pulmonologist appealed the denial. It's a waiting game. We're in limbo...all because of insurance.

Plans to room in was in the works. Today, it happened. Rooming in is the process where Paul and I stay in a small room at the NICU to pretty much provide all of Caleb's care. The medical staff are here, only to observe and sign us off. We've been here since 7:30pm and we've done everything: meds, bathing, trach care, suctioning, diaper changes, etc. It's not any different from what we do when we're visiting, but this time, we are in a room and we get to sleep in with Caleb. We also use all of our home medical equipments, not any of the hospital's. This is to get us acclimated with the home life. We plan to room in as long as it takes to make us feel comfortable. We're thinking four days/nights.

Talk about sleepless nights. I can't even think of closing my eyes. Since we can't hear Caleb's muted cries, we have to be on top of things. My cell phone is set to alarm at different times.

• 8am- Cardiac Meds and EBM (Expressed Breast Milk) Feeds
• 10am- Trach Care
• 12pm- Formula Feeds
• 2pm- Cardiac Meds
• 4pm- EBM Feeds
• 5pm- Cardiac Meds
• 7pm- Bath and Trach Care
• 8pm- Cardiac Meds and EBM Feeds
• 10pm-6am- Continues Feeds Begin, 70mL/hr (first four hours are EBM's, the next, Formula
• 2am- Cardiac Meds
• 5am- Cardiac Meds

Trach care is a two person minimum job. The feeds last an hour long.

To add to the list, suctioning, diaper changes, rash medications, cuddle time, splint/physical therapy, and speech therapy that we've incorporated with play time.

I'm gonna be a zombie tomorrow. There's no way I can sleep tonight.

God, please bless us and guide us.

Going Home?

Since my last post, nothing has changed. We're still here at the NICU at Dell. We've been ready to go home. It's just a waiting game with the insurance company. I'm so upset. The only thing we're waiting on is for Blue Cross/Blue Shield to approve 24 hour nursing care at home for at least the first two weeks after discharge. And guess what?? The company won't approve it. Even though the national clinical standard for all babies with a tracheostomy is discharge with round the clock nursing care, the stupid insurance won't approve it.

Their policy doesn't allow it. They say if the baby needs 24 hour care, then he should be at the hospital. They won't pay $40/hr for 24 hours/day at $960/day but they will pay for $5,000/day at the hospital. Someone should teach the insurance company simple arithmetic!!!

Yup we're stuck. The hospital case managers, social workers, doctors and my company is advocating for Caleb's discharge conditions. The insurance company is even acknowledging the national clinical standard, but they won't budge. Send us home.... please.

MRI and Getting Ready for Home

The nurse called me this morning stating that Caleb is scheduled for his MRI at 10:30am. I immediately hurried to Dell. Due to his procedure, he was NPO since 4am and only has pedialyte in his hungry little tummy. He took it very well. Not very grumpy at all. This was a reschedule since he did not cooperate with Monday's MRI. I had already mentioned to the medical staff that hydrochlorate isn't the best anesthetic for Caleb. Of course, they didn't listen. So this time, they called the anesthesiologist to give him general anesthesia via (another) IV port. I mentioned to the doctor that he's not a "good stick." Meaning, it takes usually 5 or more attempts to get his IV. Lucky for Caleb (mostly for mommy), the doctor was successful the first time. I pray that the results reveal no significant change to his cerebral cysts.

After the procedure was concluded, it was time to discuss his progress with the medical staff. I discovered that prior to discharge, there is so much to be done.

1. Schedule follow ups with--- the molecular geneticist, genetecist, cardiologist, pulmonologist, ENT, gastroentologist, neurologist, and the surgeons
2. Contact pediatrician for initial appointment
3. Contact home health care for schedule of nursing care, speech therapy, occupational/physical therapy, and developmental therapy
4. Meet with home health care for medical equipments and training on the saturation monitor, suction, ambu bag, oxygen, feeding machine, etc.
5. Contact Medicaid office
6. Contact pharmacy for cardiac meds
7. Clean the Ronald McDonald House
8. Clean our house and organize our room/his nursery (since he can't sleep in his own room)
9. Finish up his medical book (for our reference and easy access to his medical history and other important info)
10. Schedule special CPR class for Trach babies- completed, scheduled for May 8, 3pm

Wow. That's a long list. I can seriously say "I'm done." We've been in the NICU system for 101 days (and counting).

Out of the NICU

On Friday, Caleb experienced one of his firsts. His nurse thought that since Caleb was getting old enough to get bored, she'd decided to take him out for a walk. The nurse first borrowed a wagon from the pedi ward and obtained a saturation monitor. Soon, Caleb was riding on his wagon on his way out to Dell's Healing Courtyard on the 2nd Floor.

Since Caleb's birth, he's always been at the NICU, either St. David's or Dell's. He only got to experience life outside of the NICU twice. First was his transport where he was in an isolette and finally Friday's excursion to the 2nd floor.

I was so excited. Poor Caleb didn't even have a shirt on because we wanted to get him out. We wrapped him up in a blanket and headed out. I think he was out of his comfort zone because the expression he had on his face was that of confusion. Regardless, Caleb breathed his first non-hospital/NICU air. He tolerated it very well.

The Way He Was

Caleb's progress. First picture, on ventilator. Second, on trach collar. Third, on HME, last on a smaller HME.

Since my last entry, my little Caleb has changed so much. Here's a recap.

On Monday, Caleb was still on IV and his ventilator. I bought him a mobile and a music box at Wal-Mart. He is way more alert than the past few days. We were still bonding, but because of his PICC and his tubes, it was still difficult.

Tuesday, Paul left work early so we can both learn the trach change together. The actual apparatus has to be changed weekly. The first time was done by his surgeon and this time, it's us, observed by the RT and the nurses. It was difficult because the stoma is still not healed. I'm very proud of how Paul accomplished this task. As for Caleb, he's such an obedient boy. He allowed us to change it without any fussing. Another plus was that he was no longer on the ventilator. He had a trach collar.

Wednesday, Caleb began eating formula... yay, no more TPN's. But he still had his PICC line. The staff wanted to start him on a special formula with very little fat content. They suspected his diet of breast milk as the culprit for the fluid in his lungs. Caleb also received his first real bath since his surgery. I know that was a treat for him. Pre-op, mom and dad gave him nightly baths. This helped him sleep better. He was so relaxed that during trach care, he was zoning out. At weigh-in, he was 15.4 lbs. Wonderful, he's supposed to be around that range since the fluids he's retained post-op should have been eliminated.

Thursday, the nurse stated that prior to discharge, mom and dad had to do 3 trach changes each. According to their check list, that was the only thing us parents had not yet demonstrated proficiency of. The nurse decided that I should do one all by myself. This way, Paul and I would have only 2 more changes each. It was very difficult again, but I did it. I had to psych myself to do it. When we returned for our night visit, we noticed he no longer had his PICC line. For us, that meant he was wireless. He was no longer bound by the saline flushes, TPN's, lipids, and what not. He was receiving all his feedings via G-tube. All he had was his pulse sock and his heart monitor leeds. Prior to his routine baths, we played with him. He was definitely happier without that PICC on his head. He was alert and smiling more. Paul and I did his trach care. The bath/trach care routine takes about an hour and even before we had finished, he was asleep. Another good news: he was on an HME (filtering system for the trach). His saturations were excellent, mostly in the mid to high 90's. He's breathing on his own now via trach. Paul and I also mastered the suctioning.

The Lord is good. He is working wonders. We have received many blessings during this trying time. Main thing is: our son is on his way to recovery. Paul and I feel very confident we can provide the care he needs at home.

Three Month Old

Caleb is three month old and it's also a reminder that we've been in the NICU for three months.

When Paul and I arrived at the hospital, his nurse had taken pictures of him and made a scrapbook page that says "I'm 3 months old today!" That was wonderful.

Last night we received a call from Dr. Lloyd from Dell and it wasn't a good one. He said that the inflammation in Caleb's right lung has gotten worse and it needed to be drained. For the past few days, it seems we've received only bad news. He is still swollen. But has been losing the excess fluids he's retained from surgery. Tonight, at weigh in, he was only 17.8 lbs. Compare that to Wednesday's 20.8 lbs. He's also back on IV drips because of last night's setback. He ate today at 8am, and that was the last time. For a hungry baby, he's taking it very well.

He is a little more alert now. Moving more and definitely playing. But still not the same Caleb. The nurses say, "one step forward, two steps back." That's really true. We are learning to the virtue of patience. Also, every progress or challenge is all up to Caleb. When he's ready, I'm sure we will be out the door.


I did trach care again tonight and I also got to hold him twice today.

Despite the bad news, we've received blessings. A good friend from Houston sent Caleb a care package and other things. Since he's so much bigger now, most of his clothes do not fit him. The new clothes we received will definitely be a good fit.


As I type this blog, my baby sleeps like an angel in his NICU standard crib. I'm still on the hunt for a mobile. He needs something to stare at. The one on his bed is NICU owned. It only plays music, no circular movements.

Mother & Son Bonding

April 15, 2009. While Americans were occupied with filing taxes, I was at my son's bedside patiently awaiting his awakening (part two). Yesterday was fun. But today, I expected more. From 11am-1:30 am, I was with Caleb. I just didn't want to miss out on anything.

I was there when he opened his eyes. I was there and did his trach care. It was really intimidating, but it has to be done. With practice, I know I will get better with it. It's a two person job, so the nurse was with me the entire time.

Caleb moved around a bit more. He was still on Fentanyl, so he was limited. Swelling decreased as well. If yesterday, he did twitches, today he wiggled. He appeared to have mastered opening and closing his eyes. I was very content with his progress.

Around 11pm, I felt really depressed. I just needed to hold him. I missed my son. Imagine not holding your child for 8 days and not being able to do anything about it? I said my good night and was ready to retire for the night but my little man started wiggling and looked at me. I saw tears in his eyes, as if saying "Please don't go." I decided to stay. Of course, I was in tears the whole time. Nurse Lisa, also a NICU mom, was so observant and asked if I wanted to hold him. Of course, I missed him so much.

After careful logistical planning of how Caleb was to be transferred from bed to mom's arms, he found his loving and warm destination. Two nurses and an RT organized the move and mother and son bonded in no time. As soon as he made it in my arms, I cried and cried and cried. It's difficult to explain my emotions. My son who was wide awake during the transfer, suddenly closed his eyes and fell asleep.

We were in the same position for an hour. With minimal movement, we spent time. Of course the staff were outside his door in event an incident occurs. Caleb was still on IV's, the ventilator, and various medical equipments. Add to that, his neck had to be hyper extended the entire time. I left after two good byes (a 30 minute feed and a 15 minute pump session). Caleb who was sleeping in my arms, suddenly was wide awake. It 1:30am when I left. Tomorrow is another day. More progress for sure.

Thanks to his nurse, I did not go into severe depression. Bonding with Caleb was an instant mood enhancer. I guess it showed: as I walked the long hallway to the exit, the staff commented that I looked much happier.

The Awakening

Tuesday. April 14, 2009. The day my son was to awake from his drug induced slumber. After a week of medications, IV drips, PICC's and immobilization, Caleb woke up. I expected so much. I thought "waking" up meant that he was going to be a normal infant. I set myself up for disappointment.

The day started with me getting ready at 8am so I can head to Dell and wait by his bedside...I wanted to be the first person he saw when he woke up. I immediately headed to the hospital after my morning routine. Carla, our favorite nurse from St. David's visited Caleb and took me out to lunch. An hour later, I saw the ENT surgeon Dr. Sawyer. Right on schedule, he performed the first trach change. I was ordered to put on gloves and assisted him the entire time! It wasn't the best experience, but it sure was very educating. 3 hours after Dr. Sawyer ordered to d/c the paralytic med, Caleb twitched! It's the most movement he's made since the surgery.

Paul was so excited, he left work early. When he got to Caleb's room, we observed more twitching. After dinner, we excitedly returned to Dell. We gave Caleb a sponge bath. I know he loved it. It was his first in a week! We observed more twitching and we felt elated every time he twitched and attempted to open his eyes.

We knew that was probably the most action we were going to see. After his bath, we hung out for a few hours and just spent some family time with our little man.

Wednesday will definitely be the day! I can't wait.

One more day!

I can't wait. I'm so excited! Tomorrow is the day! Caleb will be off his sedative and paralytic meds. It's been 7 long days since I last held him in my arms. When I went to visit him earlier today, he didn't smell so nice :( The first thing I'm going to do is hold him and then bathe him.

Before I left the hospital I requested for the staff to call me in the morning when they plan to wake him. I want to be there when he comes back to consciousness.

Happy Easter!

Caleb is doing much better today. Paul and I spent Easter with Caleb at the hospital. The nurse told us that the doctors wanted to discontinue his vecuronium (paralytic drug). But, it hasn't been 7 days. I told Nurse Loren that if Dr. Sawyer (surgeon) did not approve it, I didn't want the neonatologists to write the order. I'm afraid that he might move quite a bit and disrupt the healing of his trach. Trust me, Paul and I can't wait until he wakes, but if it's at the cost of his recovery, then we'd rather wait two more days.

He is still unconscious. But overall, he's having a better day. Happy Easter all!

Horrible day for Caleb

It's been 3 days since Caleb's tracheostomy. He is still sedated and paralyzed. He's currently on a ventilator and several meds, as he is not allowed to move. Any movement can cause his trach to not heal properly. According to the Dell NICU staff, he's right on schedule with his recuperation.

Yesterday, it was decided that he needed a PICC line. From the beginning, it's been difficult to get an IV line, but post op, it's even more challenging because he's so swollen. Today, the PICC team unsuccessfully tried to put a line in him. After 2 hours (what seems like eternity), someone was able to do one. Poor baby, so many pricks. Although he's paralyzed and sedated, I know he's stressed to say the least.

It was hard for Paul and I as well. While they were attempting the PICC line, we weren't allowed in the room. Also, we can only imagine how painful all that is... We're here in his room comforting him, the best we can, as I write this post.

Tomorrow is another day. We pray that he'll have a better day.

Pictures

See how much he's grown!! He was 10 lbs. 4 oz. when he was born. The last time he was weighed on April 6, 2009, he was 14 lbs. 2 oz. He is beginning to outgrow his 3 month old clothes. In fact, he's wearing 6 month sizes (depending on the brand).



A few days old

A month old

Two months old

The Beginning

At 1am, I'm wide awake thinking about the challenges God has given my little family. Sometimes, it's hard, but I know that this too shall pass.

We are very thankful for the support we have received from our family and friends.

We have experienced so much since the birth of our son Caleb Josiah Viernes. We have so many friends and family to update about our life here in Texas and I thought why not begin a blog? So, I will quickly summarize our roller coaster life thus far.

• June 2008- Found out we were pregnant, estimated date of delivery will be February 5, 2009
• July 2008- It's a boy!! Paul named him Caleb Josiah
• September 2008- OB/Sonogram visit revealed heart beat irregularity
• October 2008- Met with the Perinatal Specialist, diagnosed Caleb with Premature Atrial Contractions-nothing major, but needs follow-ups
• November 2008- Perinatologist found fluid in Caleb's stomach (Fetal Ascites) and he had Supra Ventricular Tachycardia, I was admitted to St. David's Labor & Delivery Floor for 48 hour observation and possible delivery- I was given steroid shots, but after 48 hours, I was discharged
• December 2008- Diagnosed with Polyhydramnios, OB/Perinatology visits increased to 3 times a week
• January 19, 2009- Baby boy Caleb Josiah Viernes was born via scheduled C-section. He was 10 lbs. 4 oz. He was only 37 weeks. He went straight to the NICU at St. David's

3 days into his NICU stay, his heart condition was diagnosed as Chaotic Atrial Tachycardia. He was and is still on several cardiac meds. Also, he had feeding and reflux issues. February, he underwent a surgical procedure called Nissen Fundoplication and Gastrostomy.

March, we were set to be discharged, but Caleb experienced multiple desaturations. A pulmonologist and an ENT doctor evaluated him and recommended a tracheostomy. Paul and I were devastated. We didn't want him to have another surgery. W e opted to wait it out- maybe if we allow him to grow a bit more, his floppy epiglottis will mature and will not obstruct his airway.

In April, Paul and I both decided, with the help of the doctors that the trach was the best and safest option for Caleb. April 5, we left St. David's NICU to go to Dell Children's Hospital's NICU to get the procedure done.

April 7 at 10:45am Caleb had a muscle biopsy done as was ordered by the neurologist and the molecular geneticist, as well as the tracheostomy surgery.

Caleb's Surgery

Picture above was taken 20 minutes before the surgery----> Today was a long day. Caleb had his muscle biopsy and his tracheostomy at Dell Children's Hospital. The procedure started at 10:45am with signing consent forms and ended around 1:00pm. Paul and I spent several hours last night with Caleb just playing with him-knowing that he will be sedated and paralyzed for at least 7 days.

We were already at the hospital today by 9:15am and we left at 11:45pm. In between, we had lunch nearby. Although our son is not "alert," I know he can feel our presence. Whenever his father and I touch him or talk to him, we just know he feels us. We ended up spending the rest of the night beautifying his door.