Benson– Tetralogy of Fallot Surprise (Part 2)

I left off just when Benson had had his heart cath done. It really is amazing– the doctors inserted a catheter up the major artery in his leg and weaved it up to his heart into the pulmonary valve. Then they stuck a small balloon through the catheter and pumped it several times. We got that on video, and it was incredible. That was on Wednesday. The improvement was very noticeable. His O2 levels were stabilized and the nurses were able to start weaning him off of the O2, and off of his other drugs as well. On Thursday, they were able to start feeding him. He took a bottle and drank a little (not enough) and so they inserted what is called an “NG” tube up his nose and (Nasogastric tube– it goes into the nose, and straight into his stomach) “gavage” or “boulous” fed him. He remained in the CICU (Cardiac Intensive Care Unit).

I arrived Friday, just as they were ready to move him up to the Cardiac Surgery Unit. Lest I forget, I must thank my brother-in-law Eric for giving up his birthday weekend (and my sister-in-law Amy for giving up Eric!) to drive me down to SLC as I was still loopy and on drugs and recovering from the C-Section and was not allowed to drive. I was lucky in a way that I really didn’t have to see Benson hooked up to many tubes aside from the normal pulse-ox and lead wires. They removed the umbilical wire just as I got there.It was good to see Aaron, and amazing to see Benson. You must remember, I saw him for about 15 minutes max before they wisked him away to SLC on Monday. I hadn’t seen or really held my baby since he had been born. After I had been there about an hour, they moved Benson up to the CSU floor (something surgery unit). We spent some time there, and then headed back to Aaron’s dad’s place.

This was the first time I saw Benson since he had been flown to SLC. It was an amazing moment!

As I mentioned earlier, I never really got to hold Benson before he was taken away. This was the first time. It was surreal!

Aaron left early Saturday morning, a bitter-sweet departure to say the least. We decided that especially since Benson wasn’t nursing yet that I would just sleep at Aaron’s dad’s house, and get to the hospital as early as I could and spend the day there. I was really grateful for having my own pump, as there were a lot of pumping moms on the floor, and I didn’t feel like fighting over the pump, or waiting.

Here is a picture with Benson and his feeding tube. AND no wires (he had just had a bath. This was a real treat to see him not hooked up!)

Once I had arrived, the Speech Therapists began working on getting Benson to eat orally. Because he missed the golden window of opportunity where sucking was a reflex, we had to teach him all over again. Not only that, but nursing and eating takes a lot of energy, and energy was at a premium with his compromised heart and O2 levels. So, we started by giving him a pacifier, and having him try a bottle and take as much as he could– 5 ml, 10 ml at a time. Painstaking. And each time he drank from a bottle, it would wipe him out for 6 hours, so every 3 we would just gavage feed him through the NG tube. Thankfully, within a few days, he was able to take every other feed by bottle, and then two feeds in a row. Even if he wasn’t able to drink the whole bottle, every time he was awake and alert, I tried that bottle.

The one thing we were really disappointed in with the speech therapist was that Benson was NO CLOSER TO TALKING THAN HE WAS BEFORE SEEING THE THERAPIST! Hehehehehe Just kidding. They were amazing!

In the mean time, the nurses tried to teach me how to insert the NG tube in case Benson pulled it out, and I think that was one of the most traumatic experiences of my life. Benson has a really narrow nasal canal, and the nurses always had the NG tube on the left side. Well, they wanted me to practice on the right side, so I tried. And I couldn’t get it in. And the nurse couldn’t get it in. And Benson was screaming in pain. And the head nurse couldn’t get it in on the right side, either. Poor Benson was NOT happy. Finally, they put it back into the left side, and we decided that if I ever needed it inserted, then I would come back in. We didn’t think he’d need it long.

I also was working on increasing my milk, mostly by pumping and pumping and pumping. I really grew to hate that pump.

It was amazing to hold this little baby boy, and to watch him. So much pain and suffering already, but so strong. So adorable. SO MUCH HAIR! Brown hair, with blond tips. Holding him was so different than holding my other newborn babies… Maybe because I didn’t take having him in our family for granted as much. I knew that his surviving was a miracle– even 10 years earlier, or giving birth in the wrong place (like my little town), would have been a death sentence for him. It was a miracle to have him in my arms.Yet, being away from the family was horrible. And lonely. I didn’t feel like calling anybody, talking to anybody. Things were still raw, and I was still trying to get a grasp on what all was happening to this precious little boy.

Each day was more of the same– an x-ray early in the morning, speech therapists, rounds by the doctors, questions, answers… The genetics team informed us that Benson was missing 1 1/2 genes, but nobody knows what those genes do. But all of the other genetic testing came back negative, so that was a huge relief.

We did have an hysterical experience! I had left to get some lunch, and when I came back, the nurses were changing his diaper. JUST before I got there, the nurse had him bare-bummed and aimedjust right.And he GOT her! AND the floor. It was incredible. Nice not to have to clean it up, though! LOL

Benson and his infamous explosion. It was classic. And hysterical (because it wasn’t me) AND gross! But, hysterical! Look at the distance!

On the Thursday after I got there, they were ready to release Benson. He was eating well orally, and was improving. I had yet to nurse him, but I was ready to try with him once we were out, and once he was taking all of his feeds by mouth.

Benson was discharged on the 8th, on Thursday, after a HUGE hullabaloo about taking home a pulse-ox or not, getting O2 prescribed (just in case, and for the drive home), getting your drugs prescribed (Propranolol) and packing up. He was 10 days old when he finally was released from prison… ahem… the hospital. Removing all of the leads and wires was exhilarating! My son looked ALMOST like a normal kiddo!

Bringing Benson home was a completely new challenge. He was a night owl, and was getting more alert and HUNGRY! I had a very hard time keeping up with what he was wanting to eat, so had to supplement a little. I was quickly able to get him to take all of his feeds orally, however, and by Saturday, was able to remove the HORRID NG tube. Seeing his little face, his little body, seemingly perfect, was amazing and liberating. I also started trying to nurse. Just like with the bottle feeds initially, the nursing was exhausting for him. I started once a day, for several days, and then would bottle feed until he was full.

Benson taking a nap while having some tummy time, with his K9 buddy!

Spending the alone time with Benson, no beeping machines or alarms, was amazing. And Grandpa was really enjoying the bonding with little dude as well. It was a special time. I spent a lot of time just watching him.

Valentines day came while I was in SLC, and Aaron went all out and sent me roses. 4 dozen, plus a white one. One dozen for each of our living children, and a white one for our little angel Madeline. I cried.

We stuck around in SLC for a week, just to make sure the ballooning was sticking and that Benson was growing and progressing. We had a well baby check-up on the Monday, and then met with the Cardiologist on Friday.

The appointment with the cardiologist was a little disheartening. They did an echo and an EKG, and Dr. P was a little concerned that the ballooning was not holding well. While we had been told that the repair typically happened around 4-6 months, he anticipated we would be back within a month or a month and a half. And he wanted Benson on O2 on the way home in the car.

I felt like crying.

The next day, Bill and I packed up Benson and his amazing accumulation of stuff, and headed to Idaho Falls, where we were going to meet up with Aaron and the kids, who would then take us the rest of the way home the next day. This was the first time the kids were going to meet Benson, and the first time I had really seen the kids and Aaron in 3 weeks. I was just as giddy to see them as they were to see me!

Kidletts are meeting their little baby brother for the first time!

Benson hated having the nasal canula in his nose for the oxygen. And after about 7 p.m., he did not want to be in the car. And, can I just say this? Pumping in the car is THE PITS. But we made it home with happy kids, and safely.

It was amazing to be back together as a family. Finally, reunited. And the kids loved having their baby brother at home. And mom. Olivia just kept repeating, “Mommy. Home. Glad. Home. Glad.” It was heart breaking.

Aaron’s favorite thing– cuddling and sleeping with the babe

Kade, delighted to feed Bens!

The two youngest

Charlie has a very tender spot in his heart for babies. He has been amazing with him!

Finally, I would be remiss if I failed to mention and to thank all of those who helped us out, whether it was watching our kids during the day, bringing us meals, giving us money for travel and medical expenses, and especially prayers. Your prayers reached heaven and blessed our little Benson, and our lives. There were so many miracles, great and small, and our friends were some of the greatest miracles of all.

Throughout this whole ordeal, Aaron and I felt so much love, from everybody, and especially from our Father in Heaven. It doesn’t matter what struggles we go through, His love is so real, and He is aware of our needs, and what is best. We felt God so closely throughout all of this, and our faith was strengthened as we prayed and watched over this little baby of ours, and His.