Conner when he was 3 weeks old, taking a bottle...let's get back to this buddy! You can do it!
Conner PASSED his (3rd) swallow study!!! I cannot tell you how excited we are, and proud we are of our sweet little Conner! He did so great! The feeding therapist that performed the test on him is so cute and will be the one to continue working with Conner through the whole process of learning how to orally eat again. She first started by mixing the barium with sweet potatoes (so weird to think that he is old enough for baby food!) and spoon fed it to him (ok, more like just had to shovel it in his mouth and hope he didn't spit it all out!). He got mad and coughed and cried...but then began to swallow. And he didn't aspirate! She did a few more spoonfuls to make sure they got a good look at his swallowing and how it was going down. Then she made a thinner liquid to give to him through a bottle (barium + nectar). This too she just had to squirt into his mouth and hope enough would stay in for him to swallow. Again, he got mad and did throw some of it up, but through his tears, he swallowed a few times and didn't aspirate! What a big boy and what proud parents!!!!! (by the way, I did cry, but it was before they had even started, and then once they were doing the test, I was fine!).
This truly is such wonderful news, and such a relief for us. We can now start working on teaching him how to eat again, and although it will be a long process, and will require A LOT of patience, we are thrilled to get going! This also means that most likely they will be moving his NJ tube (meaning the tube is feeding his small intestine) into an NG tube (feeding his tummy). We are hoping that feeding his tummy milk will help his throwing up not be so painful (because right now he is throwing up straight tummy acid/mucous) since it will be mixed with the milk and it will be easier on him. We are also hoping and praying that with more time, he will start to out grow his reflux, even to the point of just 'normal' reflux, to avoid surgery.
Each day I will be practicing with a mixture of rice cereal/breast milk and giving him tiny little tastes, and doing simple things like spreading it on his lips and getting him used to the taste/texture of food and the spoon. Like I said...it's going to take a lot of time and a lot of patience! :) I also will continue to do facial exercises with him, making silly fun sounds and smiling a lot while I'm doing it (our facial expressions make a huge impact on how he feels about letting things in/around his mouth). It all has to remain positive and fun for him in order to make any progress. They say the faster you try and get them to eat, the more reluctant they become, so it will be so interesting to see how long this process takes. I honestly don't know if it will be like a month before he is eating, or if it will be 6 months. Who knows. All we know is that we are excited for a change and feel very hopeful. I know he is doing so well because of all the prayers that have been said in his behalf from all our wonderful family and friends, and from all the Fathers blessing's that Paul has been able to give him.
Conner's first full bath since his heart surgery! He loved it!
Tomorrow is Conner's 3rd Swallow Study. He has not had one since March, when he was still taking a bottle and his binki. Now, he doesn't take either, doesn't remember how and throws up when we try and practice with him. I'm so nervous for my sweet little baby to have to go through the 'test' tomorrow. What they do for the test, is they feed a baby a liquid called barium (a yucky chalky substance that can be seen on an x-ray), and watch it on a live x-ray to see what happens with the swallowing. This is how they can see if the baby is aspirating (getting liquid into the lungs, which is dangerous) and also check for reflux. Seeing as how Conner doesn't swallow anything right now (other than his own saliva, and I'm sure some reflux), it makes me so sad to think of how it will turn out tomorrow. They said that they will most likely just have to squirt the liquid into his mouth to see what he does with it. How would you like it, if you were just sitting there and then all of sudden a nasty liquid was squirted into your mouth without you being prepared? You would probably choke and cough and be pretty sad, right? That is what I'm sadly expecting for tomorrow, and I'm thinking I will probably (actually I'm sure I will) cry, when they are doing it. My sweet little Conner. I wish his reflux could disappear and he could miraculously remember how to eat from a bottle and love and take his binki like he used to. Hmmmm, wishful thinking. We would sure appreciate a few prayers in Conner's direction to help him do the best that he can with the swallow study and that it can be an accurate depiction of how is doing with swallowing/refluxing, so that it can give us some direction to know what to do with his feeding/reflux issues.
The 3rd day after surgery. Conner awake and aware for the first time since surgery.
Conner awake and moving his arms for the first time since surgery (the 3rd day)
This is a much overdue update on Conner! Conner was able to come home July 2nd after 11 days in the hospital. The doctors thought he might be able to come home just 5 days after surgery because he was doing so well, but then Conner's heart rate started rising, and he started to be more fussy. Conner was the fussiest and most upset we have ever seen him. He was hard to console, (which is unheard of for him) and just seemed very uncomfortable. His heart rate Sunday night was around 179-180 bpm. Then by Monday morning, Conner's heart rate had climbed to 200 and stayed between 190-210 bpm nearly all day. They ran a bunch of labs and tests, but everything came back negative. The doctors didn't know what was causing his escalated heart rate, but decided to send him back to the CICU (he had moved to the 'floor' on Friday) to be able to monitor him more closely. The doctors decided to give Conner lots of fluid through his IV (even though he was not dehydrated according to their testing) just to see if it would help. It did seem to help a little, and by Monday night his heart rate was staying around180-190 bpm which was better than 190-210! Tuesday it stayed at 180-190 and then slowly started lowering even more. By Wednesday his was at a stable 160-170 so they felt comfortable in sending back to the 'floor' (this is where they do not have one-on-one nursing care anymore, but rather one nurse assigned to 3-4 different patients, and so you basically have to be with them 24/7 and you can sleep in those rooms). Ideally, his heart rate should be at around 130-140, but he was stable and everything looked good, so they weren't concerned about the 160-170 bpm. We slept there for 2 more nights, and then they gave us the boot on Friday, July 2nd!
As a 'fun' little side note, let it be known that since Conner has been home, we have had to have his tube replaced twice, which makes a running total of it having to be put back in 9 times in approximately 3 months. In fact, on Monday night, June 21st, his tube became clogged (it had just been replaced 3 days before!!!!) and we could not believe that it was happening THE NIGHT BEFORE his surgery! And I was supposed to be stopping his feedings in just 12 hours from when it became clogged! How frustrating! We seriously were in disbelief that the one night we wanted to be super calm and relaxed, that would happen! I cried because all I had wanted was for Conner to get in a really good nights rest, and and feel the peace in our home and that we could enjoy the night before the big day. We tried unclogging the tube pickle juice and coke and the 'clog zapper' solution we have from our home health care company, but nothing worked.
So up to PCMC we went at around 9p.m.
We explained that his surgery was the following morning and wanted to see if they knew of any other way to unclog the tube so Conner wouldn't have to go through having a new one placed, when they would take it out for surgery anyways in just a few hours! The doctor came in and decided to try and run a wire down the tube. The wire is what is inside a new tube when they are placing it. He just pulled the wire out of a new tube, and then pushed it down in Conner's tube. Well, it did the trick, and unclogged the tube! We were so thankful that that worked and that they didn't have to replace the whole tube!
Having Conner home and having his heart fixed is WONDERFUL!!!! It has been amazing to see the difference in his energy level. The last day before we left the hospital, we had a funny experience. Conner needed his diaper changed, and it was MESSY! So Paul was on one side of his crib, holding his legs in the air, while I was on the other side of the crib, cleaning him up. And he was MAD! He did not want us to be bothering him or touching him! He was arching his back really strongly, and crying. Paul was holding his legs/bum in the air pretty high since I was having to wipe down his back, and then all of a sudden, Conner arched really hard, and really fast, and then before we knew it, he had flipped himself over and was on his chest(but like upside down!) It is hard to describe his position, but it was ridiculously hilarious! Paul and I could hardly control our laughter as we hurried and flipped him back over. He was so strong with his new-found energy! And even his cries are more loud and demanding now!
We had hoped that Conner's reflux would maybe improve from the surgery (we didn't expect it would, but still hoped...). While in the hospital he only threw up 3-4 times, so we were really happy about it. But since he has been home, it is back to what it was before the surgery. He throws up anywhere from 3-7 times or more, a day. It is so sad. Volume-wise, it's not a lot of throw up (it's his tummy acids) but when he throws up it is forceful and hard on his sweet little body. Sometimes the reflux isn't too painful and he will throw up pretty quietly, but most of the time, it really upsets him. His whole body tenses as the reflux makes it way up, and he turns red and gets mad. Sometimes he will throw it right up, and other times he will gag several times before he throws up. His little head gets all sweaty and his breathing is rapid for a minutes afterward. I think the saddest part is when he makes little moaning, sad sounds when he knows that it is coming. It is like the most worried little squeaks and moans you will ever hear. It is at those times especially, when I wish more than anything I could take away his pain and just let him feel free of it all. It will be quite the journey ahead to figure out his feeding and reflux issues. We are praying that he will outgrow the reflux quickly, but it doesn't seem like that will be the case. We are really hoping to be able to avoid the nissen surgery that would make it so he didn't reflux or throw up anymore. We don't want to have to have him go through another surgery, but know that it may have to be done.
Conner has been really cute with his mouth lately. He is smiling more and we can sometimes get a little bit of a chuckle-grunt out of him (not anything quite like the video I posted last time yet again), but he is learning. The past 2 days, he has been pulling in his bottom lip, and what it looks like, sucking on it. It looks so cute. And he has been doing a lot of sticking his tongue out. His tongue looks so pointy when he barely sticks it out, it makes us laugh. He likes it when I try and "get his sugars" (an expression that I got from my mom, who it it from her mom)- It just means that I'm burying my lips in his chubby little neck and trying to munch on him :) He thinks it's funny, and is always smiling a big cheesy smile when I pull away and look at him. He is reaching for my face now whenever I am close to his face. I love it. He reaches out his little arms and puts his hands on my cheeks. If I'm kissing his cheeks, he will open his mouth to try and lick my face. I giggle when he does that. How can you not? He really likes when daddy does "Ah-Boo!" with him, and jumps just about every time, and then gets the biggest grin. Paul loves to rock Conner, and Conner loves it just as much! Paul has this magical way of rocking him that gets Conner so calm and can put him to sleep. Me, if I try and rock him, he usually wiggles and squirms and sometimes will actually sleep on me. It's just a daddy thing I guess!
We had our first cardiology follow up yesterday and they said everything looks really good! Yay! We can now give him regular baths, instead of just sponge baths, so Conner will very much appreciate that. His incision scar looks really good! It looks like it's been healing for months, when it's only been weeks. We will have another cardiology visit in 6 weeks, then probably 6 months after that, and then it will be yearly visits for the rest of his life. Conner is the biggest blessing in our lives, and we love him dearly. We have felt the power of prayer through this whole experience and have felt the love and concern from so many wonderful family and friends and people that have fasted and prayed for Conner and our family. Thank you so much to everyone!
Paul and I met at LDS Business College in 2003 and got married in September 2005 in the Salt Lake Temple. Marriage is the BEST! We love to have tons of fun! Whether it's playing games with friends, going on a cruise, having pillow fights, or just hanging out, you will always find us laughing! In February 2010 we welcomed with much excitement, our greatest joy, baby boy Conner. He was born with a heart defect called Tetralogy of Fallot and spent 72 days in the NICU. He had open heart surgery when he was 4/12 months old to repair his sweet, broken heart. He is now fed via a gtube in his tummy, and is on the long road of learning how to eat with his mouth. He is our greatest accomplishment and teaches us everyday about love and patience. I am blessed to be a SAHM to Conner, and we just love our little family!