Cath and tummy results!

So after my post last week I got an email from GI at MUSC stating that they decided there were less invasive tests they could conduct before they scoped him. Jackson and I were really disappointed because we felt that is where we will ultimately end up, but maybe not.

Monday we headed to MUSC for a GI appointment. The nurse practitioner for peds cardiology asked if she could go with us to see what they had to say, and I am so happy I told her yes! We came up with the game plan that Jack would be admitted to 8D after the cath and Wednesday morning a gastric empty scan would be conducted to determine if his stomach emptied into his intestine properly. If it did they would place an impedance probe for 24 hours to see if he was refluxing above all the reflux meds.

This morning I watched the gastric empty scan. They filled his belly with only 2 ounces. I usually feed him 2.5-3. For 1 hour he laid in an MRI machine while pictures were taken as his stomach emptied. The techs couldn't tell me results but it sure looked to me like there was a lot left. About an hour later they called with the results and after the hour only 1 ounce had made it to the intestine. After all the pain I am praying this is truly the answer. It is treated with a low dose of an antibiotic whose side effect is helping the stomach empty more quickly. They said I should see significant difference in a week. The technical term is gastroparesis and after reading the symptoms it is the only thing that does fit what's going on perfectly. Hoping this is really it!

Ok now the cath. It went great which is a good thing and a sad thing. The pressures in his heart and his size is ideal for surgery. They are putting in a surgery request for 6-8 weeks and will be calling us with dates in about 2 weeks. That is so soon. Dr. Ryan Butts, also an Irmo native, drew me another one of his lovely pictures of a heart to explain exactly what happens for the Glenn procedure. I'll go into those details later.

This is Jack coming off his sedation. He was pretty funny which surprised me because I thought he would be upset.



I am so happy we got some GI answers and to know that is heart is doing so well! Thanks for all your prayers. God is listening and I know he is watching over this sweet boy! My Jack of Heart!

Location:County Road S-36-28,Peak,United States

We need some prayer warriors

I cannot tell you how crazy life has been. We have had so much going on it hurts sometimes. I wish we could get to some sort of normalcy, and I am told it will happen, but I feel like it is never coming.

So to start his third month we ended up in the ER. Fortunately it had nothing to do with his heart but of course, that stupid g tube. I seriously thought it was infected. It was so red and unfortunately still is. I have no idea what changed but it will not go back to being flesh colored. So anyways, we were sent to the ER to get IV antibiotics. Well after all the ER docs treated us like we had "done something to it" they finally called the pediatric surgeon who agreed it was NOT normal for it to look the way it did and he agreed we had not tampered with it, prescribed some antibiotics and wanted us to follow up with him or the ped surgeon at MUSC. I chose to go to MUSC and I am sooo happy I did. The visit spawned all kinds of things. First we went and saw one of our favorite OTs. She worked with Jack for a bit and we told her what had been going on with Jack's g tube, his constant screaming while eating and the white tongue he had for so long. She immediately began calling people to come and look at him. I was so happy. I really feel that everyone at MUSC is so helpful. So we started to get on the right track for some answers. Peds surgery came down and looked at the g tube. They decided to go ahead and do a g tube study just to make sure it was in the right place and not blocking the the intestine. Everything looked great so that was cleared from the eating issues. The following week we had a follow up with peds surgery. They thought, just as I had, that the white tongue could possibly be thrush. So we treated it. Unfortunately I knew after 7 days of treatment it was not thrush. So I called his pediatrician and asked if he would refer him to a GI at MUSC because in Columbia they were not helpful with entertaining my ideas to discover what the eating issue was. In addition, no matter how many times I explained it they were so dense on his heart. They aren't the only ones though. I am so shocked sometimes how people in the medical profession know so little about the heart. I know more than most!

So, MUSC GI was the best place we could have gone. When the doctor came in the room I didn't have to tell the whole story again. They had read his chart and told me what had been going on! I think my chin was on the floor. They first checked his stool for blood and sure enough! So they switched him to Neocate. I was so happy thinking "Finally THE answer." I typically try not to get too excited because most things work for a few days then quit. Well I have seen some changes. The white on his tongue is almost gone! He is recovering sooner after eating but it can still be an hour before he is up to anything, which is delaying some of his therapy. And he is not throwing up as much throwing up but it can be an hour later which makes me thing something is wrong with his intestine. Sigh.

So the prayers we need. He is having a heart cath Tuesday, November 8th. I am a little nervous about what they may find but it will tell us how his heart is doing. They will base the next surgery date from this cath. We may or may not have an overnight stay depending if they have to make any repairs. The letter they sent me also said they may have to stay "depending on the severity of the heart defect" and I would say Jack qualifies in that category. We are also working to coordinate scoping him that day while he is under the cardiac anesthesia. Please pray that his heart is ok and that we find some answers to his tummy issues!

Thank you so much for all your support! I am going to try to update more frequently. I am so happy that many of you have been asking me about the next update! Keep on me!

Happy 5 Months Jack!

November 1 this guy was 5 months old!












Weighing in at a whopping 14 pounds 10 ounces! He really starts to feel heavier after about 5 minutes of holding. He is a happy little boy despite all his tummy troubles and has started mocking our sounds and facial expressions. My favorites, one is we pucker our lips at one another and say "hmmm" then I start laughing and he laughs too. The other is I ask if he is huuuuuungry, and he will growl it back to me. He sure thinks his dad is especially funny. Their latest thing is Jackson says "Say Cheeese!" and Jack starts rolling! He is ticklish almost everywhere and I am sure he get tired of us tickling him all the time just to hear him laugh.

We've been trying out sippy cups which he seems to like and if you attempt with one don't try to give him the bottle after. He will just get mad at you. Speech therapy has us working with something called a Z Vibe and he hates it! It is to strengthen his oral muscles. I haven't even made it vibrate yet and he cries. We have to do it three times a day so I am sure he will eventually get used to it, I hope. Everything in his hands goes straight to the mouth and his lower gums look white on certain days so I am thinking teething is not too far.

Physical therapy is going great! He hates it but works so hard! We are working on tummy time still, which he despises. I make him do it anyways. The PT and I both agree that once he strengthens that chest he will be crawling. He's got the legs but that big scar is holding him back. So when you do put him down for tummy time he ends up making himself into a tent on his neck. If he could figure out how to get his arm in the right position he would roll over to his back. Rolling back to sides or tummy is no problem, he just gets mad once he gets to his tummy. He will sit for about a second on his own so I am hoping he will be sitting well in about a month.

His favorite toy is his Scout, a green stuffed dog that sings songs using his name and his favorite things. When he is upset all we have to do is let Scout start singing and he stops crying. Needless to say, I know all the songs by heart after all the times I feed him everyday!

He still sleeps in our room. Until we get his tummy issues figured out I am not comfortable with him in the crib. He loves his sleeper though. I clipped some toys on the sides for him and he happily plays until he falls asleep. He has started sucking his thumb too which I think is really sweet. Someone said to me " Oh no, you need to stop that!" I have no intention to. If he is still doing it in a year we will address it then, but for now it is sweet.

Happy 4 Months Jack!

Oh how sweet he is!

Yes, I am a little behind. His four months was October 1st. Sorry Jack!

Three months!

Our sweet boy is three months old! He just gets sweeter and sweeter by the day too. He currently weighs 12 pounds, 13 ounces is 23 inches long and we just moved to his 6 month clothes.




He does something new everyday. He LOVES to talk. Doctors and nurses are very impressed by the way he coos, smiles and jabbers with them. When I am on the phone he will carry on along with my conversation. Perhaps this is one reason everyone who meets him adores him, and as I found out today some people can't wait to meet him! When he smiles it is not only through his mouth but in his eyes. I know, everyone uses their eyes but his expression is so precious. (I may be slightly partial!) I pray every night we will find the answer to his reflux. I get so excited when something seems to be working only for it not to. I will try everything possible to make him comfortable. Feeding is still challenging. We have awesome days where he takes everything from a bottle and other days he just won't do it. Dr. Bonnet says we are ready for solids and I have been working on him getting used to a spoon so maybe that will make him love to eat! We are making big steps on head control and he is close to rolling so I know those will be coming soon. Jack loves toys especially mirrored and talking ones. Sing-a-majigs are on the top! He is taking naps in the crib some days but is still sleeping in our room at night. He is ready to sleep in the crib but until the reflux is under control I like him in arms reach. I look forward to my morning wake up. He lets out a yell and when I look down from the bed he is smiling and kicking his feet. We just adore him and he has filled out hearts with so much love!




It is crazy how three months can go by so slowly. I feel like the day he was born was so long ago. I reflect on everything we have been through all the time and how much it has changed our lives. It has been hard, and I often wonder who it was harder on, us or him. I know he will not remember a minute of this time, but we always will. We went back to MUSC 2 weeks ago for a swallow study, which he passed (this just means he can drink thin liquids). We visited the PCICU and 8D and it was so good to see everyone! They could not get over how big Jack had gotten and he played his usual possum so no one really got to see his sweet personality. The visit was great but it made me realize how soon we will be there again. After talking to the nurse practitioner she predicted, and unfortunately I agree, he will need the Glenn surgery sometime between Thanksgiving and Christmas. He is growing so quickly and in the past week I have noticed more blueness around his mouth. Just one of the signs the time is getting near. The Glenn will keep us at MUSC for 5 to 10 days and I've been told he will come back pink! We will go in November for the heart cath to officially make the determination. I thought the first time was tough, I cannot imagine this time, especially now that we really know him.

Until then I am just going to enjoy and love the heck out of him. I mean, how can you resist this sweet face!

Location:Three months!

Finally sharing...

I finally felt comfortable enough with Jack's bottle feeding to let someone else feed him and who better than daddy! Trust me, it wasn't that I was just being a crazy mom. Jack was just awful at the bottle. Either he would suck so much so quickly that he would choke or he wouldn't suck hard enough to get anything out. The choking was terrifying. If he wasn't getting anything he would be worn out, we would have wasted time and I would have to tube him the full amount. It also takes FOREVER to feed him. A quick feed is 45 minutes. Most feeds last at least an hour- 30 minutes on the bottle, burping (which he never does), then tubing the remainder. Jackson has watched me feed him so many times and I finally felt comfortable that he wasn't going to choke, so I passed it on. The first time I watched, not too closely ;), but I thought it went great! What a relief and Jackson loved doing it too! It is such a huge help. Maybe now I can get to that laundry, or dusting, mopping... Yuck.





Also, some GREAT news! Dr. Bonnett called and the test results for Maple Syrup Urine Disease are negative!! Prayers answered! Now we can move on to enjoying Jack! Also, Dr. Bonnett said I didn't have to wake him up to eat anymore! Guess who slept all night...




This guy! (and me!)

Happy 2 Months Jack!

I cannot believe he is two months old! Honestly, it has been the LONGEST two months of my life. I feel like June 1st was so long ago. I remember each day since he was born so vividly. He is the sweetest baby. He has patience, which I know sounds crazy. When he needs something he lets us know with just a small cry and if we don't respond after a minute he will let another out, like when I am heating his bottle. He coos all the time and loves to talk to anyone who talks sweetly to him or coos back. He loves his baby gym and will play for 30 minutes to an hour on it! He is beginning to smile and I am still not quick enough to catch it with a camera. In all the chaos of the day I almost forgot to take his picture. So here is what I shot!





Here is what we have been up to! It has been a long time since i updated so I will be as brief as possible! We came home Friday, July 8th. Jack slept the whole day and night. When he finally woke he studied the house. It was like he knew he belonged here. We spent the whole weekend just holding and loving on him! No more needles, exams or thermometers. Monday we had our first pediatric and cardiology appointment. He passed both with flying colors! Tuesday he had a follow up hearing screen. He passed the newborn but they wanted to be sure he could hear because downs children are high risk for hearing problems. He failed. I seriously thought I was going to be sick. I just didn't want anything else stacked against Jack. They told us we would be referred to an ENT for further testing. Wednesday we went to a GI doctor Dr. Bonnett (our pediatrician) referred us to watch Jack from a nutritional standpoint. In the office Jack had a dirty diaper that had blood in it! I was happy it happened there and not at home. So I they send me with a sample over to the children's hospital at Richland for some labs. They called me later that day to tell me Jack had colitis from antibiotics they had given him before the G tube surgery. He had to have another antibiotic to treat it. Thursday Dr. Bonnett's nurse called me to tell me they wanted to see Jack on Monday. MUSC had tested his amino acids 3 separate times and they were all abnormal. Monday Dr. Bonnett sent off the test for his amino acids. I began researching amino acid disorders, which Jackson had told me not to, and was terrified. I decided just to try not to worry and wait for the results. That Thursday I noticed Jack had developed thrush so we headed back to the doctor's office. Monday we had another appointment with Dr. Bonnett. He upped his reflux meds because Jack has the worst reflux I have ever seen. He turns red, then purple, while gagging and then it shoots out of every hole in his little face. It is terrible. That evening my phone rang and it was Dr. Bonnett. He asked me to come to his office the next day. Jack's amino acids were still abnormal. Dr. Bonnett said he may have maple syrup urine disease. MSUD is a life threatening metabolic disorder. Jack would alway be on a special diet and when he became sick he would more than likely have to be hospitalized to have IV fluids. MSUD can cause swelling of the brain, coma and death. Tuesday, after battling a flat tire, I went in, and then down to the children's hospital again for the tests. We were told the tests would take 2 weeks. I can find so many beautiful things about all of Jacks other disorders, but not MSUD.
Today we went in for his two month check up. He is doing great and weighs 11 pounds, 1 ounce! We got back the results for the MSUD blood test and they were all normal! Praise the Lord! Now we are waiting on the urine results. We also went to see the ENT today and Jack can hear just fine! The doctor said he doesn't anticipate that Jack will have any hearing difficulty!
So that has been our lives in a nut shell. Other than all our scares he has gotten lots of love and play! He is such a joy and I can't wait to watch him grow! We are so fortunate to know many wonderful photographers! The have helped me lose the feeling that I missed out on so many good pictures since he was born!












Ashley Uhl Photography




Ashley Uhl Photography