Medical Update

Here is an update on Lincoln's medical status.

Medicine:
Lincoln is still on Sildenafil four time per day for his pulmonary hypertension and the plan is to stay on the same dose and out grow it. His morphine dose has been the same for months, but has now been reduced to twice per day last week and once per day this week. He has not needed this medication for pain for quite some time, but has been addicted to it. He is scheduled to discontinue the morphine all together next Wednesday! Lincoln is taking Pepcid twice per day for his reflux which has been working great. He still has the reflux, but it is less painful for him, so he is less fussy after eating.

Respiratory:
Lincoln continues to be on one liter of 100% oxygen flow as his baseline. He is turned up to 1.5 liters to feed just so that he doesn't expend extra energy to eat. He still has quite the temper and needs to be turned up on his flow when he gets too mad and desaturates. This only happens a few times a week though. He is getting better with being able to cry and not desaturate every time. Last week Lincoln did have a bit of congestion due to a mild cold, I believe, but this did not get bad enough to interfere with his breathing or eating (which is when we need to contact a doc ASAP.) He still gets stuffy occasionally and I just use saline drops and bulb suction his nose.

Nutrition:
Lincoln is taking a multi vitamin once per day in his bottle. He is also taking a protein supplement three times per day to help him gain weight. He has not been taking to the breast lately so he has been almost exclusively bottle fed and I pump after each feeding (if I can!). Lincoln still has some latching issues and does not associate breast feeding with feeling full so my hopes of breastfeeding have not come true. Since Lincoln is not feeding at the breast very much, my supply is not enough for all of his feedings. So Lincoln is taking four full bottles of formula per day along with two full breast milk bottles. He is on a formula recommended by his neonatologist that is for premature babies so it has more calories per ounce and has partially broken down protein to help with digestion.

I am not happy about giving formula to Lincoln, but he has to eat and some breast milk is better than none. All things considered, I guess I should be proud to have supplied Lincoln this far. He has been having difficulty with the transition with throwing up a few times the first week and having a hard time pooping still today. I started giving small amounts of formula to him three weeks ago to ease into the new food. With Lincoln having his bowels shifted during surgery, digestion is a real challenge for him. Lincoln is still eating on demand, but I make sure he gets in 6 feedings per day. His volumes fluctuate, from 2.5 oz to 4.5 oz per feeding.

Home Visits:
Lincoln was getting home nursing visits twice per week. His vitals were taken and his weight measured. The nurse also would report about his feedings and general health to the pediatrician. Last week the visits were discontinued by his pediatrician since he is gaining good weight and I am comfortable with his care. Between doctors visits and the home nurse visits, Lincoln has been monitored very closely this first month at home.

Lincoln also has occupational and physical therapy once per week (two separate visits). His occupational therapist comes on Tuesdays and works with Lincoln on feeding issues and any behavioral issues or concerns of mine. She is also there to help make sure Lincoln reaches his developmental milestones. We have been working on desensitization of general handling and diaper changes especially. Lincoln is a very touchy baby and can go from happy to angry in a flash. We are also working on getting Lincoln more interested in toys so that he can work on his motor skills.

Lincoln's physical therapist comes to the house on Thursdays. She visits to make sure Lincoln has full range of motion and is hitting his milestones as well for anything physical, such as holding his head up and sitting. We are working on tummy time to strengthen the back of Linc's neck and pull-to-sit to strengthen the front of his neck. We also work on range of motion of limbs and fingers. Since Lincoln spent so much time just laying in bed at the hospital, he has a habit of holding his arms and legs in the fetal position and clenching his hands tightly. He is getting better though and we do exercises daily (when Lincoln permits) to help loosen him up even more. It is so difficult to catch Linc in a good mood that his occupational therapist has only been able to work with him once and his physical therapist has never had an opportunity. So on those visits, I relay his progress and we discuss activities to work on.

Doctors Visits:
Lincoln went to see Endocrinology at Children's last Wednesday. This was just a follow up visit to discuss his lab results from testing that was done while he was still admitted. All results were normal and as of now it looks like Lincoln's hormones are doing what they should. So the doc said that unless another doctor or I feel like there is an issue in the future, they are pretty much out of the picture. Great news!

Monday we went to the pediatrician for Lincoln's 4 month vaccinations. It was two weeks early, but it had been long enough since his 2 month shots. Linc's pediatrician wanted to keep a close eye on him for the first month at home, and this was the first week we didn't have another appointment, so she asked us to come see her. Lincoln got four shots, two in each thigh. We will need to go back for one oral vaccine that it was too early to give this visit. Other than that, Lincoln is good on shots until 6 months.

We talked about Lincoln's feedings and how the Pepcid is helping. Lincoln is still fussy and having difficulty eating sometimes. Some of his issues are due to the transition to formula so the doc suggested giving it a few more weeks and trying to add some prune juice to his bottle if he is constipated. She also gave a sample of another formula that is broken down even more that we can try if things don't get better in a few weeks.

Lincoln weighed 10lbs 6oz. The doctor was pleased and wasn't concerned with Lincoln's off and on feeding troubles just yet, since he is still gaining weight. He is still taking about the same volumes per day that he was  one month ago though.

Our next appointment is on Monday at the hospital. We actually see two doctors - newborn medicine and surgery. They are controlling Lincoln's meds and oxygen support so there could be some changes next week.