Benson, Tetralogy of Fallot (Part 5) Chylothorax

Aaron and I decided that we would split the time during the day with Benson. One of us would get there early in the morning, the next would go after dinner, and stay until about 10:00 or so. Since he was still so little, and we needed rest, we left him at night in the capable hands of the nurses and slept at Aaron’s dad’s house. The next day we would switch, until I was able to resume nursing. Aaron started the first shift at night since I spent all day at the hospital with Benson during his surgery.

About half way through Aaron’s shift the first or second day after the surgery, and after they had started to feed him some of my expressed breastmilk, he called with some disturbing news. There was a complication in surgery. The drainage tubes in his chest were draining chylo– basically fat and cholesterol. Benson’s lymphatic system was damaged, and was unable to process the fat from my pumped breast milk, and it was leaking into his chest cavity. This condition is somewhat rare, and is called Chylothorax. Untreated, Benson would slowly be asphyxiated as the chylo built up around his lungs and crushed them. The nourishment that was the absolute best for him was suddenly deadly and he was put on a fat free diet. He was not allowed to nurse for 6 weeks, and the chest tubes were to stay in until he was no longer draining chylo.

I was devastated. And angry. FURIOUS. I worked SO hard to get him to nurse the first time, and I HATE pumping! And I wanted him to get the best nourishment possible and was being told that my milk as it was would kill him. I was ready to throw in the towel, right then and there! I continued pumping anyway, hoping for some sort of solution, and within a day or so, Benson was moved up a floor to the CSU. And I vented on Facebook.

PCMC has a great Lactation department. And they have state-of-the-art equipment. So they offered to “spin” my milk in a special centrifuge and remove all of the fat. He still needed the calories, so the fat-free breastmilk was then supplemented with formula. We started off with a fat-free formula called Enfaport. And the screaming began. Benson was usually a very calm baby, but nothing we did could soothe him. For days this continued. It was difficult to get him to sleep, and to stay asleep. Despite simethicon (sp? a generic Mylicon), and all of the other pain meds he was on, we could tell he was just plain uncomfortable, and would SCREAM every time we tried to feed him. And his diapers were GROSS. We were all just stumped. So, I felt prompted to ask if there were other formula options for Benson. They did some hunting and discussing with the nutritionist, and came up with Vivonex T.E.N., an adult liquid diet formula powder. It had the correct calorie count that he needed, so we gave it a try. Instant relief! Benson was soon a much happier baby. Hooray for switching formulas!

Aside from the oxygen, and an IV, a tubeless Benson. Still very swollen from surgery.

With that, Benson continued to rest up, the chest tubes were removed one by one, and Aaron and I continued to take turns staying with him. I continued to pump and to freeze. They didn’t need nearly as much milk as I was pumping since they were spinning and supplementing. They were using breastmilk and formula at a 50/50 ratio. I had them spin my milk, and then we froze it and used it as needed. My biggest worry was when we got home. If I was going to continue pumping, I wanted and needed to know that he could drink it somehow. The thought of pumping and storing and never being able to use it, and to put him on formula, depressed me and I felt very discouraged. My feelings were that if I couldn’t use my milk to feed my son, then I was done. I hated pumping enough to just give up once we were out of the hospital, unless we could find another option. There was no hospital nearby in Montana that had the ability to spin my milk. And I vented on Facebook again.

Once Benson was on a formula that was not distressing him, he bounced back very quickly. Apparently the typical stay at the hospital after heart surgery is 7-11 days, give or take. We were out in 8 days. Benson recovered well, and aside from the awful, horrible chylothorax (easily treatable, thankfully), he had no other complications. He had daily x-rays to make sure the chylo was clearing up (and it was), and when the day to be released came, it was bliss!!! We stuck around in SLC for another week just to make sure things were healing as they should.

Once Benson was out of the hospital, Aaron took the opportunity to go and work a little at the SLC airport. And I took on the 4 kids myself. We found some activities to do, some as an entire family, some with me and the boys, and some with my friend and mission companion Anna (Townsley) Clegg.We did Temple Square, visited the Air Force Museum, went to the park and had a picnic as a family, went to a farm and pet the animals… we tried to have some fun together!

To cut things short and save the technicalities for another post, I will just say this: between my friends on Facebook, the amazing Head Lactation Consultant, Ellen, my husband, and a generous sister in my branch, we were able to find a to spin my milk at home, using, of all things, our washing machine. And we were able to cut down the time he needed to be fat-free to 4 weeks instead of 6 (thanks to the persuasions of Ellen with the NP’s… because she knew I was not willing/emotionally capable of trying to pump those extra two weeks and take care of my other 3 kids and the house!). I also was able to build up quite the stockade of fat-free milk to take home with me and tide me over as long as possible. We ended up only needing to spin 3 days worth of milk, and we were done! And on May 12th, Benson was allowed to nurse again. Well, to try to nurse again, anyway! And he only had one hiccup and transitioned nicely back to nursing instead of the bottle. It was a marvelous day! With that, Benson was finally a “normal” baby.

Benson, Tetralogy of Fallot, Part 4 (the Repair)

We left for SLC on April 7th. We were hoping to make it down to the valley that day, but we got a really late start, and traveling with a nursing baby, who was still having coughing fits, and a baby we couldn’t let cry for long periods of time, made progress really slow. That, and we left a lot later than we were expecting to. We arrived in ID Falls around 7:00 to eat dinner and decided that driving the rest of the way was probably not a great idea. Benson hit the “witching hour” around 7:00 p.m. every day and would cluster nurse and be super fussy. We just didn’t want to risk having a tet spell. So we got a hotel room, got everybody settled, and went to bed.

We spent Easter Sunday driving to SLC, and then spending time with Grandpa. Monday was spent as a family, and then Tuesday it all began. We started by having some lab work done, and then to have his sedated echo. I must admit, I was a little curious why they had to sedate Benson– he had done fine for all of his other echo cardiograms– but that is neither here nor there. He had a mild reaction to one of the sedatives and had to have an albuterol treatment. Once the echo was done, we were sent to recovery. We were hoping to be out of there in a couple of hours and to spend those last few hours before surgery as a family again.

Then he had a coughing fit. And with the pulse-ox attached, we saw Benson’s stats drop to 46. Dangerously low blood oxygen levels.Once the fit was over, his levels rose to 80 again like normal, but it made the doctors very worried. They were concerned that he might have a major tet spell, and decided that we were being admitted that day instead of going home.

We feel just plain horrible! While we truly had done what we could to try to get Benson’s cough taken care of, diagnosed, and treated, none of the doctors seemed as worried as we were prior to this. We had no pulse-ox to test how low he was getting when he had a coughing spell, and had NO IDEA he was statting THAT low EVERY TIME HE HAD A FIT! Had we known this, and had the cardiologist known how low Benson was getting, the surgery may have happened even sooner. He was having small tet spells every time! While there wasn’t much that could be done in retrospect, we worried that maybe we had caused permanent damage to our little boy for letting him get so low so often! ESPECIALLY since we did have Oxygen in the house. We just never figured we needed to use it! We had no idea.

Anyway, since Benson was nursing, I stayed in the hospital with him that night. I had Aaron bring me some things, and was able to scrounge up some PJ’s at the hospital as well. Once again, he really didn’t have any other coughing fits (oh, the irony!) and we had a quiet night.

Benson, less than 30 minutes before he was wisked away for his surgery

Aaron came to the hospital around 7:00 am and we spent that last hour just holding Benson. Our hearts were breaking. No baby should have to go through something so horrible!

Holding Benson right before he is taken away

Right before Benson went into surgery

They had us walk him down to a waiting room. I was really grateful that they let me hold him until the very last minute, while the nurse and Aaron pushed his little bed down the halls. Then they took him away, gave us a pager, and sent us upstairs to the waiting room. Aaron’s dad was not able to watch the kids all day, so Aaron stuck around in the waiting room as long as he could. He waited until Benson was on by-pass before he left to watch the other 3. I sat in the waiting room, reading, praying, (pumping), trying to do anything I could to keep my mind off of the fact that our little boy was being sawed open, heart stopped… waiting for the pager to go off for any and all updates. After a couple of updates, and 7 agonizing hours, Dr. Burch (the cardiothorasic surgeon), came and talked with me. He said that surgery went well, and that I would be able to go up to the CICU in just a little bit and be with my little man. He talked about his pulmonary valve and expressed his amazement that Benson had lasted as long as 2 1/2 months– the opening in the valve that the blood had to get through to go to the lungs was a mere pin prick! He had spliced open the valve and stretched it and put a patch in it so that the blood could now get into his lungs. He explained that this was still a temporary fix, and that at some later point, probably when Benson was a teenager, his pulmonary valve would have to be replaced via OHS again. But at that point, they would insert a stent so that future valve replacements could be done in the cath lab. He also had patched the ASD (the hole between the two ventricles) and showed me the little patch they placed in Benson’s heart– the size of a small white bean, or a little hole punch. The patch would remain in place for the rest of his life, but the muscle would grow around it so the hole should never open up again or be a problem. By patching the hole, he effectively “corrected” the overriding aorta problem.

When I finally got to see my little baby, I felt such a mix of emotions! It was painful to see so many tubes and wires all over him again, and looking so swollen! BUT, there was another feeling– RELIEF, and BLESSED! Because, when I saw our little boy, HE WAS SO PINK!!!! It is amazing how as a parent, you can grow so accustomed to the off color of your baby, slightly blue-tinted. But once that blue was gone, the difference was amazing!

Benson, right after being released from surgery.

Benson, after surgery

I sat there, staring at my little boy, wanting to hold him, and being unable to do so. But it was amazing to see his oxygen levels so high! 96%! Now, to recover, and to be a normal kid!

Benson, Tetralogy of Fallot, Part 3

Coming home was wonderful! However, with coming home with a sick, immunologically challenged baby came new worries, the biggest of which was how to keep him well. Any kind of respiratory illness could easily land him in the hospital. Frequent use of hand sanitizer and staying at home except for the weekly trip to Great Falls for cardiology appointments was put into full force.

When you have a child in school, however, keeping germs away proved MUCH more difficult than we imagined. Soon after we got home, Benson ended up with what started out as a cold. Then the coughing hit. And HARD. I kept Benson right next to me at night in a pack-n-play, and every time he would start coughing, the worry set in. These were not regular coughs, but horrid coughing spells lasting a minute or more. He couldn’t hardly get a breath. And he was turning horrible shades of blue as these coughing spells would happen. The coughing was particularly bad at night, but he also almost always had a coughing fit any time he would wake up. He couldn’t catch his breath. It was terrifying. Once the fit stopped, he was able to return back to normal, but it left Aaron and I both shaken up every single time.

And it didn’t seem to get better with time, either.

The coughing lasted week, after week. And no matter how much we brought it up to our cardiologist or the doctor at the walk in clinic, they didn’t seemed as concerned as we felt they should be. The biggest problem was that he never would cough when we saw the doctors.

The coughing and turning blue made Aaron and I very anxious for Benson to have his heart surgery and get his heart repaired. We wanted it sooner than later. MUCH sooner than later. He was really scaring us with the coughing spells, and we didn’t want a major TET spell (where he would turn blue and go limp. They can be deadly.) We couldn’t wait for the call that told us to pack up and go.

While it remains officially undiagnosed, I suspect very strongly that our little heart-challenged baby had contracted whooping cough. Infants don’t always produce the whooping sound, and Benson didn’t. But the recordings of coughs I heard sounded just like the coughs that Benson had. And the symptoms– cold-like symptoms for a week or two followed by week after week after week of coughing– were dead on what we were experiencing. Scary for a normal baby, terrifying for our little blue-baby!

Finally, towards the end of March, every time I would finish nursing him (he went to full-time nursing sometime the first week of March), he started to have a coughing fit and would throw-up everything he ate. It lasted all day. So I called our Cardiologist, and he had us come down the next day with an overnight bag, just in case. And we were admitted, just in case he got dehydrated.

And he didn’t have but one or two coughing spells.

Go figure.

The coughing eased up after over a month, although it never quite went away, and then towards the end of March we got our much anticipated phone call. April 11th. Benson would be 2 1/2 months old. The surgery would happen. The relief was tangible.

We had a couple of weeks to get things in order– Aaron had a business trip for several days the week before, I needed to get 3 weeks worth of work for Kade, pack our family, clean the house, etc. We decided that this time, our family needed to go down together. Imposing on our Branch to help with the kids for 3 weeks was too much, being apart from each other for 3 weeks again was too much. Being alone through this ordeal was too much. And we had a place to stay, with Aaron’s dad, again. So, we all planned on going.

Things that happened as a family between February 18th (when we got home with Benson) and April 7th (when we left for SLC):

* We arrive home, and Kade promptly gets sick with a stomach bug. He shares it with me.
* I get less sleep than I ever have with a newborn, as I am pumping, feeding, and NOT napping
* We got our first call from school today… some girls were teasing Kade during recess and told him the devil was going to come out of the sidewalk and get him. He was very frightened (lots of tears!) and concerned for himself and for his friends and teachers.
* We bless Benson at church, and have a lot of friends and family come up and celebrate with us. The baby blessing was beautiful. Aaron held up a blue crayon next to Benson’s mouth, and we realized just how blue Benson really was. It made me very nervous and scared. Food was provided by Bountiful Baskets :-)
* We FINALLY got internet at home!
* Benson gets sick, and stays sick.
* He is admitted for one night to monitor his coughing/throwing up. He does neither. :-/
* His surgery is scheduled for April 11th.
*We watched General Conference at home for the first time ever
*We watched the UK/U of L Basketball championship at home, the first basketball game we’ve ever watched at home ever. My Alma mater, UK, won. Of course!
* We got our first major EOB. $65,000.
*Kade turned 6

 

 

 

Our crazy day! And a Benson update

Yesterday was CRAZY!

We started the day with a 45 seconds (yes 45 SECONDS!) consultation with the urologist for Benson (Aaron) while I shopped at Target, Charlie’s 5 year and Benson’s 6 month check-up and shots (me) while Aaron shopped at Wal-Mart and got the oil changed in Clifford. That wound up taking longer than we expected, so Benson, Charlie, and I walked from the Doc’s to Walmart (1 mile). We then had a quick lunch, and I had a play date with my friend Beth and her kids while Aaron took Benson to see Dr. Ruggerie (our cardiologist). THAT appointment went over (more on that later), so I had to walk a mile with Kade for his eye appointment while Beth graciously watched Livvy and Beaners. Aaron met me at the Opticians, and we picked up the kids, played at the park, met up with Eric and Amy and their 3 girls (including new baby Everley), then to Sams, back up to Eric’s house to pick some things up, drive thru at McDonald for 10 cent ice cream cones for the kids (at 9:45 p.m.!) and then back home to Shelby.

Through this CRAZY schedule, the kids were amazing!!!

We got home at 11:00, and were we exhausted!!! LOL

Benson update: While he was at the cardiologists, he had an echo cardiogram. Then the Doctor listened to his heart. And he was perplexed. He was  hearing something he wasn’t seeing on the echo, and ordered another one. Basically, he discovered more pulmonary stenosis (narrowing) right as the arteries are leading to the lungs, which is causing added stress to his already compromised and leaky pulmonary valve. We’re not sure if this narrowing is new or was always there, but it is causing the blood to be pushed back through the pulmonary valve more than we were anticipating. His valve is already starting to fail, much earlier than we were expecting it to. Basically this means that instead of having his valve replaced in 10-15 years, we’re looking at 1-3 years. Another open heart surgery much sooner than we wanted. Depending on how his pulmonary arteries improve/continue to narrow, there may be other procedures done as well. Not news we needed/wanted to hear, but at least we have a heads up anyway… :-/

 

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.

Benson, Tetralogy of Fallot surprise! Part 1

As almost all who might read this blog (all 2 of you) know, Benson was born with a congenital heart defect. And we had no idea. Sometimes these defects are caught, and if you read the previous post, the ultrasound techs had a slight suspicion that something was wrong, but not enough evidence to warrant any concern. And I post this, not to rehash information that you’re probably aware of, but to have something out there on the web for another worried TOF parent, to know they aren’t alone.

Benson was to be my 4th c-section. Kade was an emergency, Charlie was breech (I was trying for a V-BAC), and after that, I really had no other options in Great Falls other than a c-section. I started having some Braxton-Hicks with Benson about 2 weeks before the scheduled c-section date. I have never had Braxton-Hicks before. And thankfully, these never hurt. But we live over an hour away from a big hospital, and not only was Benson going to be my 4th c-section, I had also had a T-cut incision (both vertical and horizontal cuts) which put me at a greater risk for hemorrhaging. So, although initially I was hopeful that I was going into labor, I soon got over that and prayed that baby would stay in until the scheduled date.

He stayed in. Thankfully!

When it was time to go and have the baby, we left the other kids in the loving care of my parents, and we headed to Great Falls the night before. And I threw out my back. We hobbled to the labor and delivery floor, and got things going. I tell you, if you HAVE to go the c-section route, the no-contractions part is a nice perk! I got on the surgery table, and as they were cutting me open I heard my OB proclaim that my uterus was stretched paper thin. A nurse later told me she could see the baby’s hair through it! Scary! Everything else was progressing text-book, surprise, it’s a boy!, when they then cut the umbilical cord. They let me do the token “hold your baby” for a couple of seconds, and then the nurses whisked him off.

This next part is from Aaron from the journal we started for Benson, as I was still recovering from the c-section and the anesthesia:

We got to walk into the operating room to get set-up. They let me come in after everything was done. At 8:17, Dr. Lee delivered you by c-section. Man, child, you had some hair! The nurse let mom see you for a sec, then over to the warming bed. After a little clean-up, you were grunting and not crying. You were getting pretty blue. I held you as we walked to our room. You got your first shots, eye medication, all the while receiving O2. The nurses made the call and you were taken to the NICU. Once in the NICU, many tests later, we were talking with the cardiologist. The official medical issue is called Tetralogy of Fallot (TOF). And with that understanding, a plane ride was ordered and I left your mother in recovery and flew to SLC. Before we left, your Uncle Eric came in and we wanted to give you a blessing. The nurse asked if Eric was a minister. If not he was not allowed in. I said, “He is now.” It was funny. He came in and we gave you the blessing. Then off in the cart to a ride in the ambulance. We went Code B– lights and sirens– to the airport. The flight over was bumpy, but you did great.”

Benson’s Private Jet Ride

 

I was told as Dr. Lee was stitching me up that Benson had been sent to the NICU, and once I had recovered I talked a little with our Pediatric Cardiologist, Dr. Ruggerie, about what was going on. I was informed that Benson would be sent to SLC. I didn’t even really get to hold him aside from that initial meet-and-greet. Once I had enough feeling in my feet to at least be wheeled down to the NICU, the kind nurses took me down to see the baby. It was awful. There were all sorts of wires and tubes already all over my precious boy, a breathing tube taped to his mouth.

Not exactly the first picture of your baby that you want…

Not how you want to see your much anticipated newborn.

We named him Benson Crain Shepherd Matthews (Benson was Aaron’s grandmother’s maiden name and his dad’s middle name, Crain is a family name on Aaron’s side, Shepherd was my grandmother’s maiden name)

The nurses were not able to let me hold my baby– all I could do was touch his precious little toes. Dr. Ruggerie told me they would be doing some genetic testing on Benson once he was in SLC to see if he had a condition called DiGeorge Syndrom (thankfully, it tested negative!), as TOF commonly occurred with DiGeorge.

While Aaron was in SLC, I was in the hospital, beginning my detested relationship with the breast-pump, and recovering from surgery. I was released Thursday morning, and headed down to SLC early Friday.

An abbreviation of Aaron’s experience in SLC with you:

“…after we landed in SLC, we got another ambulance ride to Primary Children’s Medical Center. It was a mad rush when we got here. Doctors and Nurses, 12 of them around… How did it look– there is an adage– no man is an island. You proved it wrong, my son. You are the island and you have a sea of doctors that want to help you. And they did. Now is a 48 hour waiting game… (Jan 31) No change. Many of the drugs you are on have been brought so you are not as red. Your vitals are stable. If it was not for your heart issues… you are perfect. I sit here in this room next to you and think– wow– how lucky I am that Heavenly Father has blessed us with you in this time where we can help you. The Lord has given us understanding/wisdom about our bodies…(Feb 1)… Talked with the cardiology team and have some paths to take… we have 3 options to take. Option 1 is a full repair. It has to happen anyway. Downside– it is really risky at the onset. We need to watch and then you would need more repairs down the road. However, it would be fixed. Option 2– a BT Shunt. This to me was/is the most risky. The risky part is being so far away up in Shelby. If something was to happen [i.e. a clot or the shunt were somehow damaged] it would be a death sentence for you. 3rd option is to place a balloon in your heart to open up the pulmonary valve. This has less risk for the long term issues. It is the least invasive. But of course, there are issues with this procedure as well [if it was ineffective, then we would have no option but to do one of the first options.]“

He had a reaction to the Prostaglandin E1 that was used to keep his ductus arteriosus (umbilical artery) open. While red and blotchy looking, it didn’t seem to cause him any discomfort. Once they were able to stabilize his O2 levels, they were able to stop the medication, and the discoloring went away.

The doctors could not agree upon which path would be the best for Benson in the long run. So they gave Aaron the options, told him to consult with me, and to consult with the Lord in the Meditation room.

The machines keeping Little Dude alive before they did the balloon valvuloplasty.

Once it was explained, your grandfather and I went into the meditation room and prayed. He then gave me a blessing. During the blessing I was told the right thing will be done. I felt immediately Heavenly Fahter’s love around me. It is going to be OK. I called your mother and we talked about all the options. We did weigh all of them and went with the balloon. The first reason was it is a starting point. It was less invasive. And if it works we can go home soon. So it was thumbs up and sign on the dotted line. 30 minutes later, it took 5 people to wheel your bed and all of your equipment down a floor to the Cath lab. I kissed you and they gave me a pager with a ‘Go Away’. 3 hours later, the pager went off…I walked in as they were getting you all hooked back up. Your O2 was at 98%. You look great. It is now 2 hours since the procedure. you feel a little bit better– pinker. You look healthy. At this point all medication has been stopped. Your levels are stable. We do make changes to your liquids that are called TPN. However, it has been labled by me– Mountain Dew, with a kick. It is your mixture of things you need, from minerals, vitamins, lipids, protein. It is a lot better for you than real Mountain Dew… Your room has a joyous ring to it my son. The team– your team– is so enthused on how well you are doing after this. We keep weaning you off the ventilation. Slowly you are showing great signs of improvement. The Lord’s had has been shown today.”

Daddy finally getting to hold Benson

 

The MOTHER of ALL updates!

Okay… so we’ve been slacking. BIG time. What can we say, other than we’ll do better? SO… I am just going to try to update as thoroughly and quickly for our sakes. You can choose to read it or not, as it will most likely be a long entry, but it is what it is. A year and a half or more, condensed into one entry. I imagine there will be a couple of expansions on a few topics, but those will follow later.

I will just start with January 2011 and go forward from there, month by month as I remember it (I may actually start liking Timeline on FB after all!!!)

2011

January

- Olivia turns 1
-The never-ending winter continues
-Aaron and I turn 31
-I finish Bill’s quilt made out of Cindy’s old shirts

 

February

-We took a quick trip to SLC as a family and spent time with Aaron’s dad and “Special” Eric Olsen

-My Grandparents and Aunt Kathy and Uncle Bob were in a car accident. My grandmother suffered very serious injuries
-Kade gets glasses. They last a week before they’re broken.
-Aaron becomes a certified EMT First Responder Ambulance and begins working part time for the Toole County Ambulance as a “Hobby”
-I slid off the road into a ditch, but we survived without nary a scratch. I did manage to break the CV joint, however…

March

-My Grandpa unexpectedly passed away, so the kids, Sharon Alfrey and I take an impromptu trip to Mesa for his funeral. While it was a sad reason to go down, it was wonderful to see all of my family and introduce them to Olivia. I also got to meet my brother’s wife Holly and their baby, Rockwell. We went to the Phoenix Zoo with Clarissa West, and got to see my Grandma, who was still in the hospital. She was not doing well.
-I do a sourdough display for our stake’s Emergency Preparedness Festival. It was fun doing all that baking!

April

-My Grandma joined my Grandpa 23 days after he passed away. This time I leave the boys in Shelby and Livvy and I fly to Arizona for her funeral. I go to the Easter Pageant at the Mesa Temple, something my Grandparents helped to start so many years ago.
-Kade turns 5. He requests a Volcano cake for the third year running!
-Olivia is absolutely obsessed with the boy’s underwear. She is frequently found with 10 or more pair around her arms and legs.

May

-We have fun with our bird feeder and are able to watch many different types of birds stop on their migratory routes.
-Kade learned how to ride his bike without training wheels
-Livvy’s hair is long enough for pig-tails

June

-We discover that we’re pregnant with baby-the-last! And have miscarriage fears. Thankfully, there was no miscarriage.
-We celebrate 6 years of happily wedded bliss
-Clarissa Layton West and her little guy came to visit
-A school bus full of kids gets toppled over by the wind. Aaron is able to help out transporting kids to the local hospital.
-I made aprons for the kiddos
-I tried making Dandelion Jelly– interesting!
-Aaron installs flashing lights on the Neon for the Ambulance.
-Aaron buys a grill!
-A deer visits our yard.

July

-Solomon and his buds and Natalie and Emma Boelter come and visit!
-I start baking for the Farmers Market
-I enter several things into the fair, and win Rookie of the Year :)
-We buy Ladybugs to help eat all the aphids. That was fun!
-Charlie turns 4 years old!

August

-I make Applebutter for the first time. And dilly beans. And dill pickles.
-Kade starts Kindergarten!
-We went camping
-Vacation in Seattle– and driving, OMSI, swimming, vomiting (Livvy only,) family reunion (walking the beach, gutting crabs, armory museum, fortress exploring), Exploring Port Townsend, Ferry, Space Needle, Pacific Science Center, Aquarium, Pike’s Market, a cruise, Monorail, EMP, traffic up hill in Seattle, Woodland Zoo, another family reunion, meeting friends, mansion living, good food, Silverwood today, camping tomorrow … full vacation!
-I try my very first Bountiful Baskets! And I start to train to open a new site in Shelby

September

-Olivia is obsessed with the Muppet’s Mahna-Mahna. We watch it on YouTube what seems like a million times!
-A lot of canning– peaches, apple sauce, and lots of jams and jellies
-I wrap up baking for Farmer’s Market
-Aaron is gone at Rooseville for a week
-A quick trip to SLC for the sealing of Eric and Trena Olsen, as well as an unexpected date night to see the UT symphony and MoTab!
-A Jogging/Bike stroller is added to the family’s accumulation of strollers.
-Half-way through pregnancy

October

-Canned tomatoes from our garden
-We eat all of the tiny tiny carrots from our garden for dinner in one meal. But they were good!
-Kade and Charlie are “Thing 1″ and “Thing 2″ for Halloween. Olivia is the 3rd child to be a dragon for a halloween party early in the month. THEN, she is Cindy-Lou Who. Aaron is “Dr. Seuss” (we aimed for the Grinch… but that didn’t work out so well) and I was Daisy-Head Mayzie!
-Bountiful Baskets site secured
-Aaron gets his yearly “Raise”
-Have 21 week Ultrasound, some concerns by the tech. Tech was concerned that she wasn’t getting a good view of baby’s heart

November

-Diagnosed with “Marginal Insertion of Umbilical cord” and get to schedule another Ultrasound. Dr. not concerned about heart.
-7 years of knowing Aaron!
-Aaron goes to San Fransisco for a week for work, and gets to try REAL ramen.
-Olivia becomes absolutely OBSESSED with “Harrold and the Purple Crayon”
-Bountiful Baskets starts in Shelby with a BANG!
-I make a “TURKEY” shaped pumpkin pie for the branch Thanksgiving feast!
-WE BUY A NEW-TO-US CAR! And it’s not a Subruban… An EVEN BIGGER Ford Excursion. VERY comfortable!
-Buy a Christmas Tree
-We buy a citrus juicer, to help get through the inexpensive boxes of citrus suddenly available because of Bountiful Baskets! HEAVENLY
-Homemade Bagels for the first time. WHY DID WE WAIT THIS LONG?

December

-Have second ultrasound for Baby-the-last, and everything looks OK. Tech spends a little more time on the heart again, but baby isn’t moving and cooperating, so he is unable to get a good view. BUT things look OK from his and our Doc’s stand point.
-We make Tangerine-Lime-Pineapple sauce with our abundance of fruits, and don’t feel guilty about it!
-Olivia moves to a big bed and out of the crib!
-Our first Christmas here at home alone. We are invited to a Christmas Eve party and a Christmas party by friends in the branch. Great Christmas!
-Learn that my parents WILL come for the birth of their last grandchild from us at the end of January! EXCITED!
-We make our own Meyer Lemon and Orange extract! Funness!

2012

January

-Olivia turns 2
-The seal on our toilet breaks, water floods the bathroom.
-Lots of Braxton Hicks with this pregnancy the last few weeks
-We get a new Dyson!
-My parents come from Kentucky to help with the kids while we go have Baby!
-Aaron and I both turn 32
-Benson Crain Shepherd is born on January 30th. And we discover that he has a Congenital Heart Defect called “Tetralogy of Fallot” and is quickly life-flighted to SLC’s Primary Children’s Medical Center. Aaron goes with him, while I remain in the hospital recovering from my c-section (more details later!)
-My parents are a HUGE blessing to have here, as I leave for SLC a day after I am released from the Hospital.

February

-Benson has a balloon valvuloplasy in his Pulmonary valve, giving him a little time to get bigger.
-I spend two weeks in SLC with Benson, and Aaron returns to Shelby to take care of the kids. The members of our branch were SUPER-HEROS with all of the help they so freely offered and gave.
-We remove the feeding tube for Benson, as he nurses for the first time.
-We are grateful for the love, prayers, help, and money that flowed in from everywhere to help for Benson
-Kids and dad do really well while I’m gone, but we’re all happy to have our family back together finally. Kids are THRILLED to meet their new baby brother!
-Get our first call from school. Some girls were teasing Kade, and he was terrified and crying.

March

-Benson keeps getting sick. I suspect he contracts the whooping cough, as he has violent coughing spells that last a minute or two, and he turns blue (scary!) but he never coughs at the doctors so we never do receive a diagnosis. However, when he starts coughing hard enough to throw-up, it’s a ticket to the hospital. Of course, then he stops coughing as much and we have a calm night at the hospital.
-WE GET THE INTERNET AT HOME!
-Weekly trips to GF for cardiology appointments
-Aaron leaves for a 5 day business trip.
-We schedule Benson’s heart repair for 2 1/2 months, much sooner than the 4-6 months we were initially told. While worried, we are also very relieved. His coughing really has us scared.
-UK wins the NCAA Basketball championship!

April

-Kade turns 6! We get him a nice, big bike, which he promptly declares he hates. (And continues to say that until he figures out how to stop on it.)
-We leave for 3 weeks in SLC as a family for Benson’s heart repair on April 11th and get to spend time with Aaron’s dad. We’re grateful to have a place to stay.
-Benson is admitted a day early as a precaution after his sedated echo when they discover his blood oxygen level drops to 40% after a coughing fit.
-Surgery goes well, and Benson suddenly looks like a pink baby, but has a complication from surgery– Chylothorax. No breastmilk for 4-6 weeks.
-We try to find fun things for the kids to do while we’re in SLC. Airforce Museum, Ikea, and a few other activities. Lots of parks.
-Aaron and I work to find ways to spin my milk and remove the fat for Benson
-Benson is out of the hospital in a record 7 days. We stay home, and Aaron works a little while he is in SLC, which will allow us to go to KY for Christmas!
-We go home!

May

-We order a half-case of lemons and make lemonade concentrate. Next year, at least one whole box, if not two!
-We figure out how to spin my milk at home for the last few days after I ran out of the frozen spun milk from SLC.
-Life returns to normal.
-Benson is weaned off of the bottle and resumes nursing with only one little hiccup! GLAD to be done with the milk-man, aka pump.
-Aaron works a LOT this month between the Ambulance and problems at the ports.
-Kade finishes his first year of school. Next year, we’ll have two in school.

June

-Aaron and I make strawberry jam together. FUN!
-Boys start Swim Team. Hoping they actually learn how to swim this year!
-Kade loses his first tooth!
-Charlie learns how to ride a two-wheeler bike!
-We buy our VERY FIRST COMPUTER as a married couple. It’s nice to have something work so fast!
-7th anniversary!
-Benson gets his first hair-cut
-I french-braid Olivia’s hair into twin braids. It looks great!
-I start cross-country baking with my Sister in Law Holly and we make Blueberry cream cheese braids
-I buy a bike!
-Kade goes to Summer Camp. Charlie was supposed to go too, but they said he was too young and wouldn’t let him go.
-We go camping at our favorite site and bump into our old ward as they’re having their ward campout. LOTS of fun!
-We FINALLY have Kade’s birthday party and I make his 4th volcano cake.
-Kids play on slip-and-slide and in the mud during an impromptu cook-out with friends

Congratulations if you made it all the way through!!! There will be a couple of detailed posts coming later, particularly about Benson! And hopefully we can keep this up better this time!