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!

Bountivores!

A few weeks ago, at my sister and mom’s recommendation, we watched the documentary Forks over Knives. The basic gist of the film was that eating meats and dairy increase your risk for heart disease and cancer exponentially. After watching it, Aaron said, “Interesting, but I am not giving up my meat! I like my meat!” BUT he also thought that adding more plant-based foods wouldn’t be a bad idea. I also found it interesting, and wondered if I could start eating in that direction. I knew that going 100% “plant based” was asking a little much of myself and my family, and would be nearly impossible to stick to. But I wanted to cut back, definitely. After eating several meat heavy dishes last weekend, Aaron came out of the blue and said words I NEVER thought I would hear,

What if we tried living 100% off of Bountiful Baskets?”

What?

We wouldn’t cut out meat entirely, and we’d keep milk (I like your yogurt!) and eggs, but I think it would be interesting to try it. This is probably my ‘meated’ out self talking right now, but I’m willing to try it.”

The root of this desire of his (and mine) is two-fold. We want to be healthier, and to take care of our hearts. It’s a promise made to Benson. AND, we would like to lose weight before we go to Kentucky for Christmas. There are other health concerns as well, but basically, we just want to be better.

This was my chance to try something I’ve wanted to for a while. My biggest concern was getting enough protein. While we’ll be having a big “MEAT MEAL” once every couple of weeks, we still needed a source for beans and lentils and grains. Those don’t get offered often (aside from breads, which we will continue to get) through Bountiful Baskets. I told him how I would probably need to buy lentils (as a ground beef substitute) to make it happen (we have a whole bunch of canned beans right now, and brown rice and wheat berries). BUT then, we wouldn’t be living completely off of BB. Hmmm….

And so I got onto Bountiful Baskets to see what was available for this week.

LENTILS!

It was destiny.

So, this week we contributed for 3 baskets. Our current max per week has been 2. And we contributed for a case of Mangos, a gallon of Organic Spanish Olive Oil, 25 lbs of Lentils, and a Guacamole Pack. For our family of 6. It should be interesting! To help myself be more accountable and to stick to it, I will be doing a weekly menu round up on Saturday after we pick up our baskets. I will post it here, but also will be posting occasionally to the Bountiful Baskets Blog to help others use their baskets as well.

What was also interesting was what came up in our nightly scripture reading as a couple. You guessed it. We came to Doctrine and Covenants section 89. The Word of Wisdom. Here are a few of the verses:

10 And again, verily I say unto you, all wholesome herbs God hath ordained for the constitution, nature, and use of man—

 11 Every herb in the season thereof, and every fruit in the season thereof; all these to be used with prudence and thanksgiving.

 12 Yea, flesh also of beasts and of the fowls of the air, I, the Lord, have ordained for the use of man with thanksgiving; nevertheless they are to be used sparingly;

 13 And it is pleasing unto me that they should not be used, only in times of winter, or of cold, or famine.

 14 All grain is ordained for the use of man and of beasts, to be the staff of life, not only for man but for the beasts of the field, and the fowls of heaven, and all wild animals that run or creep on the earth;

 15 And these hath God made for the use of man only in times of famine and excess of hunger.

 16 All grain is good for the food of man; as also the fruit of the vine; that which yieldeth fruit, whether in the ground or above the ground—

 17 Nevertheless, wheat for man, and corn for the ox, and oats for the horse, and rye for the fowls and for swine, and for all beasts of the field, and barley for all useful animals, and for mild drinks, as also other grain.

 18 And all saints who remember to keep and do these sayings, walking in obedience to the commandments, shall receive health in their navel and marrow to their bones;

 19 And shall find wisdom and great treasures of knowledge, even hidden treasures;

 20 And shall run and not be weary, and shall walk and not faint.

 21 And I, the Lord, give unto them a promise, that the destroying angel shall pass by them, as the children of Israel, and not slay them. Amen.

I love that the produce we get from Bountiful Baskets is produce in season. And, I love that our family will be eating the word of wisdom, even down to the eating meat sparingly. The Lord did not forbid meat, but to eat it sparingly. We can do that.

I am excited and nervous for this new adventure. It will be a challenge to try to make school lunches on this new diet for the kids, and a challenge to putt meals together quickly some nights, so any suggestions are welcomed!

And with that, we are officially BOUNTIVORES!

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

 

 

 

Down to ONE!!!

A few weeks ago, I decided it was time. Olivia had been ready off and on since before Benson was born to be potty trained. She was able to use the toilet no problem, just not consistently. I didn’t want to do it, however, until Benson came, because I didn’t want the frustration of regression, and I was hugely pregnant and didn’t have the energy to deal with it. And then, Benson came, and with him, a slew of unanticipated complications. So I wasn’t going to worry about it until after his surgery. So three weeks ago I decided it was time. So I cleared my schedule for an entire week, didn’t go ANYWHERE, and we focused on one thing. Getting Olivia out of diapers.

And, I am proud to announce that we are down to one in diapers! She was a breeze to train! Within a couple of days, she was only having accidents when she was outside playing. A couple days after that, she was freaking out when she had to go when she was outside. And a day or two after that, she was completely dry at night. Way to go principessa!

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… :-/

 

Bountiful Baskets!!!

OK… If you know me, you know I am a fanatic. About Bountiful Baskets. A friend mentioned something about Bountiful Baskets Food Co-Op coming to Great Falls on Facebook back in August, and I was curious. So when it arrived in September, I volunteered/trained and I brought it back with me to Shelby!

What is Bountiful Baskets? It is a food co-op, and each site contributes towards baskets. The money contributed goes towards purchasing fresh produce at wholesale prices, and takes out the middle-man. Every two weeks, we get a basket full of 4-6 fruits, and 4-6 veggies, worth between $35-$65, for $15 (or, $16.50). And then they offer breads, and cases of fruits and veggies as they are in season.

In our little community, and other communities, the savings and quality is huge!

I opened our site the first weekend of November. My family has gone from barely finishing 1 basket every 2 weeks, to finishing 3 baskets every 2 weeks, plus breads (which Aaron likes better than the bread I bake… lol), plus the extras as we want. It has been fabulous! More to come as I get pictures!

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

 

4th of July

Since Aaron had the day off, we decided to make a trip of it and go to Great Falls for the 4th of July and spend time with Eric, Amy and girls, and Quinn, Kasie, and kids. We enjoyed the parade– and it was not too hot this year– and then had a fun barbeque and a spectacular firework display! Before the parade started, there were people handing out free American Flags. Of course, we took them up on it!

Benson is FLOORED!

Benson enjoys his tummy time most of the time. He is quite proficient in rolling from his tummy to his back, and has recently figured out how to roll from his back to his tummy. He is also beginning to scoot and to spin. Here comes trouble!

 

Banana Splits for Ryan

On Facebook, I was invited to an event that I could not pass up. Banana Splits for Ryan. Basically, Ryan was a toddler with Downs Syndrome and also a congenital heart defect (CHD), and the heart defect was so bad that the doctors did all they could but were unable to repair it. The parents made the heart breaking decision to put a DNR order on him. People kept asking what they could do for the family, and the family’s response was to go and create a memory with their families and have a banana split for dinner– no chicken, no broccoli, no rice. Just a banana split.

I thought, “This is something I can do!” While I have never met Ryan, nor will I have a chance to meet him as he passed away last week, I did want to honor him and other CHD angels. So we had banana splits for dinner, and created a memory! And the kids thought it was the most wonderful thing– they could not believe their luck!

Benson, sadly, was asleep throughout the dinner. But he had mashed bananas for dinner a little bit later (Sorry, no pictures of him this time!)

Feel free to join us and hundreds of thousands others in creating a fun family memory with your family in honor of little baby Ryan! Just click on the link above and join in on the fun :-)