Care4Conway: Weight Gain

Wednesday, January 30, 2008

Weight Gain

Connie was weighed this morning (right after he threw up his morning feeding) and his weight is still climbing nicely. He was up another few ounces from last week and is now 21 lbs. 14.5 oz. Yesterday was his first day of getting 10 more mL (1/3 of an oz.) in each of his four daytime feedings and we decreased his overnight feeding by 40 mL. The goal being to get him off of the continuous overnight and strictly on daytime feeds, either by mouth or enterally. This is a slow process, for sure, but one we are confident that he can achieve in God's time. Our OT said yesterday that he is making wonderful progress, faster than her other clients with similar feeding issues. Guess he's a bit competitive. . .I wonder where he gets that from ;) Of course, today he's only taken in 5 mL of milk and 7 mL of water. I blended up our leftover meatloaf, carrots and potatoes from last night's dinner for him for lunch and served it along with ritz crackers. He won't hardly take anything off the spoon from me, so I let him use his nuk brush to dip into the mixture. He sure covered his face and bib and arms, but I'm not sure if any got in. It's good experience for him nonetheless. We're hoping that once his self-feeding skills improve, he'll really take off. He's just still pretty averse to anyone going near his mouth and he wants the control. I forgot how nice it was to have a bald baby at feeding times. When Mary Kathleen was at this stage, she was bald so mealtimes were a bit less messy! He gets it in his hair and everything. She didn't mind being cleaned up. He can't stand to have his face wiped. We're really starting to see a little personality come out in him. Today he was playing peek-a-boo with his blue bunny elephant and putting it on his head all by himself. He also knows what it means when I say, "Give me a bite." He puts the food or whatever he has in his hand up to my mouth and offers it to me. It's so cute how he's starting to understand more and more. I'm just so proud of him!

Mary Kathleen appears to be completely back to normal based on her activity level, but she is still complaining about her throat hurting.

5 comments:

Unknown said...: Erin,

It's great to hear how Connie is improving! Some may be small steps, but all together, they are milestones!

Thank you for the postings! I look forward to reading them and hearing about Connie's triumphs.

Continued prayers for your family!

Love Kim Froehlich; January 30, 2008 at 2:56 PM
Anonymous said...: Sounds like Connie is coming right along! That's so great!

Erin, I didn't realize you were also a Duchesne Alum until I saw Connie's picture and the article in the "Duchesne Leaves"! So ironic (of course, you were there just a few years later than I! Christine went there, too!).

Thanks for the update,
Debbie Gentry; January 30, 2008 at 6:55 PM
Anonymous said...: Erin,
I told mom we need to be looking for a small shower cap.
We will use it in the kitchen.
Love Grandpa George; January 30, 2008 at 10:29 PM
Anonymous said...: Erin George! Hi it's Jen Schulte from high school... I saw your son's website in the Duchesne Leaves Flier that came yesterday. He is a beautiful little boy. I hope that things continue to progress for him. You are in my thoughts.
Jen (Schulte) Edwards; January 31, 2008 at 8:45 AM
Anonymous said...: Hi Erin and family! I saw your precious Conway's picture and article in the Duchesne Leaves. I also watched your darling video of him "jumping" with his sister. It brought tears to my eyes because I can't imagine what he's had to go through in such a short time & how it must be difficult for you. We have 2 little boys and I can't imagine. He looks like he's doing much better from the video and pictures! We will most definitely be praying for Conway's complete healing & restoration! We serve a God who's much bigger than we can imagine! Nothing is impossible with Him!

Meredith (Stipes) Engelmeyer; February 2, 2008 at 3:59 PM

Conway's Heart Story

Conway's Heart Story

Conway David Beckemeier was born on March 3, 2007. His heart defects went undetected during pregnancy and he was diagnosed at two days of age with L-TGA, a large VSD, sub pulmonic stenosis and Ebstein’s Anomaly. Just before turning six months of age, he underwent open heart surgery to reroute the bloodflow in his heart. Called the "double switch", this procedure is the most technically challenging for pediatric cardio-thoracic surgeons to perform. The version of the double switch that Conway received on 8/28/07 was called the Rastelli-Senning with VSD closure and sub pulmonic resection. He suffered a grand mal seizure following the surgery that lasted over an hour and had several other post-op setbacks including surgical heart block, which required another operation on 9/18/07 to insert a pacemaker. Following surgery and such a long hospital stay, Conway developed an oral aversion (he would not eat) and he was 100% NG tube fed for eight months. He also lost muscle tone and required both physical and occupational therapies. In April 2008, he had a cardiac cath and attempted balloon angioplasty on his pulmonary arteries that did not work. Although his recovery was very long, he had a solid year or so of being a "normal" kid . Then in May of 2009, it was discovered that Conway was having rhythm disturbances, specifically atrial flutter. His pacemaker allowed it to go undetected for several weeks until he showed signs of heart failure and was admitted to the ICU for a week to be placed on IV heart meds and undergo cardioversion on 5/6/09. He went home and his heart function started recovering when he had another episode of flutter (6/16/09). This time, he was again hospitalized and put on IV milrinone, but he converted back to normal sinus rhythm by himself. At that time he was placed on the anti-arrhythmia drug, amiodarone. On 7/22/09 he had to be cardioverted again for yet another episode of flutter. The following week, he got worse instead of better. His cardiologist did a full work up and it was determined that his aortic, mitral and tricuspid valves were all leaking worse and were felt to be the cause of his heart failure. On 8/24/09 he had a cardiac cath and attempted ablation. The electrophysiologist was unable to induce a single arrhythmia. Then, just two days later, he went into atrial flutter on his own. He was placed back in the cath lab where he underwent mapping and a total of 17 burns were made to try to knock out his arrhythmias for good. The next day, 8/27/09, he had his second open heart surgery to repair his mitral valve called ring annuloplasty. He also had a partial Maze procedure done. His surgeries are performed at C.S. Mott Children’s Hospital at the University of Michigan (Ann Arbor). This time he was discharged just six days later! His Left Ventricular function improved drastically. In December 2010 we noticed he began getting more winded during physical activity. A January 2011 cath showed that he is outgrowing his RV-PA gortex conduit, but he was not symptomatic enough to warrant intervention. In April 2012 Conway’s fatigue increased and an echo at the end of May revealed that the ratio between the right and left sided pressures has gotten too high and it is time to replace the homograft that was placed when he was five months old. He had a cardiac cath on 5/25/12 which confirmed the echo findings. He had surgery on 8/8/12 to replace his pulmonary valve and RV-PA conduit, add an additional pacing wire to his left ventricle, and change his generator to a bi-ventricular model which is shown to preserve function and help the heart muscle pump more efficiently/effectively.