Oliver had to use a biliblanket to treat his jaundice. We were very happy that he was able to be treated for his high levels of bilirubin in our home!
Oliver loves to sleep just like his daddy!
His smiles make everything okay!
My little poser.
“Oh, the stress!”
So much has happened with our sweet Oliver in the past month. Each time I go to the doctor I pray for good news. But, each time I am sent on my way with more disappointing news. Because Oliver has Down syndrome and tetralogy of fallot, he has multiple factors working against him. Often, the doctors are unable to determine if the cause of the problem is related to the Down syndrome or the tetralogy of fallot, or maybe even a combination of both.
First, Oliver has failed his hearing screening four different times. We have an appointment scheduled in less than two weeks to meet with an audiologist and an ENT (ear, nose, throat) doctor. Fortunately, it is only one ear! He passed his left ear! It brings me great joy to know that he can hear my voice, the music I play for him, my other children laughing and fighting, and the beautiful sounds on his bouncer and swing.
Second, we discovered Oliver has an issue with his bladder. He has what is called a patent urachus. This is a tube that is connected from the bladder to the umbilicus and drains urine. This is something that will need to be surgically repaired after his heart is fixed. We will be meeting with the urologist in about two weeks.
Now, about Oliver’s heart. This is the most concerning of all his issues. The pediatrician and the cardiologist have been seeing him weekly to make sure he is not in any distress. Last week, the pediatrician noticed Oliver was having increased labor with breathing and his respirations were increased. She sent us to Children’s Hospital for a chest x-ray. The x-ray showed Oliver’s heart is enlarged (more than when he was first born) and he has fluid in his lungs. Oliver then met with his cardiologist. They decided to put him on Lasix (a diuretic) to help pull the fluid from his lungs and to decrease the workload on his heart. The doctor stated Oliver will probably need to be on three different medications here soon. One of the meds will be to remove the fluid in his lungs, one will be to help with his heart rhythm, and one will be to help with the function of the heart. The doctor told us we need to prepare ourselves because Oliver will be getting worse. This is to be expected with babies that have tetralogy of fallot. As they get bigger, there is an increased demand on their heart. He said there is a good chance that Oliver will need to be hospitalized for some time in the future. They are still hoping to perform the open-heart surgery when he is approximately 4 months.
Another issue has been Oliver’s feedings. Because of his heart, he has increased breathing and this makes him very sleepy. Unfortunately, he is unable to be breastfed because it requires additional energy that Oliver does not have. I have been pumping and feeding him the breast milk from a bottle. This is even challenging for my little guy. (Talk about an act of love! Pumping and bottle feeding is so much work! But, it is well worth the benefits.) It is hard to wake him to eat every 2-3 hours. Often, he falls asleep while eating and we cannot wake him to finish his bottle. Oliver has been having frequent weight checks that continue to show he is not gaining. I have been working with the doctors and the nutritionist to get him on a “high calorie” diet. We mix breast milk and formula together.
At the weight check on Friday, Oliver had lost weight. Because Oliver needs to get bigger for the open heart surgery, they had to admit him to the hospital. Oliver was given a feeding tube. The tube goes into his nose and down into his stomach. He seems to be tolerating the tube, but we have had issues with the volume of the feedings. Last night the doctor adjusted the volume and he seems to be doing much better. He is getting 2 ounces of milk every 4 hours. The cardiologist also increased the dose of his Lasix and he is breathing much easier! We have a swallow study scheduled for Monday to determine if Oliver is aspirating (fluid entering into the lungs) when he is eating. We are very excited that Oliver’s cardiologist approved him using a pacifier. Originally, they did not want him to use a pacifier because it uses additional calories (energy) to suck. Oh, he is so happy to have a binky!
Please continue to pray for our sweet Oliver. We know God is bigger than all of this! We believe that “the prayer offered in faith will make the sick person well; the Lord will raise them up” (James 5: 15).
Adventures of the Kuhns 
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