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.