30 November 2010

Mom's First Day Back at Work
Yesterday was my first day back at work since Jereth was born. It was harder on me than on Jereth since he had both Dad and big brother, Spencer, taking care of him. He seemed to handle the transition very well.

Doctors' Visits
Today was spent with doctors. We first went to see Dr. Eloisa Walker, the pediatric cardiologist. Jereth is looking much better than when he went to the hospital a week and a half ago and has reached the milestone of weighing more than he did at birth. She ordered a test to check his thyroid functioning as well as an electrocardiogram (EKG). We'll know the results next time we see her, on December 10th.

28 November 2010

The evening feeding was difficult for Jereth last night until we repositioned the feeding tube. The home health nurse that came by on Thursday helped us put the feeding tube back in, but put it in about 3 centimeters further in than Jereth was used to from the hospital.

Since then he was more fussy during feeding times, so we backed the tube out and taped it back down to see if that would help him feel better. It seemed to help to have things more like Jereth was used to. He has acted more comfortable with the tube feedings today.

26 November 2010

Thanksgiving Dinner Together

Today has been a good day for Jereth. He has been awake and alert several times and has slept well. We're grateful for a restful day after a day of Thanksgiving.

Thanksgiving 2010



Jereth at home on Thanksgiving Day



We have so much to be thankful for - especially being home together as a family for Thanksgiving.

Jereth is looking much better, not nearly so gaunt as last week. We're trying to find the delicate balance that will allow him to continue to grow. The trick is to provide enough calories for Jereth to grow without causing further stress to his heart and lungs.

He is now taking two diuretic medicines to keep the amount of liquid in his lungs down and another medicine to strengthen his heart. These are to prevent congestive heart failure and get him through until he can have the open heart surgery he needs.

24 November 2010

We're Home!!
This morning I was sure we would be staying in the hospital for Thanksgiving. Jereth did not gain any weight, in fact he lost a couple of grams (less than an ounce).

However when the doctor came in this afternoon he went over symptoms to watch for and other instructions then sent us home. So we will all be together for Thanksgiving and we truly have cause to give thanks.

23 November 2010 (pm)

We'll be here at least one more day, possibly more. There was more fluid on Jereth's lungs in the X-ray taken today than the doctor was comfortable with. He is consulting with the pediatric cardiologist about increasing the dosage of the diuretic.

Here's the dilema: We need Jereth to grow. In order to grow he has to take in Calories. To get the Calories he requires fluid. The more fluid in his system, the more likely he is to get excess fluid in his lungs. The more fluid in his lungs, the harder his heart has to work. The harder his heart has to work, the more Calories are burned just keeping his blood pumping. The more Calories burned by his heart, the less Calories available for him to grow.

23 November 2010

Jereth gained another 50 grams today. He's finally back up to his birth weight of 2.8 kg (6 lbs 2 oz). He should have been at this point four weeks ago, so this is a big step for our precious little one.

We should be able to take him home today, but we haven't seen the doctor yet. The target time for discharge is this afternoon and I expect to see the doctor anytime now.

22 November 2010



View from PICU room window

 Jereth gained weight again today, 50 grams (just under 2 ounces)! As long as he continues to grow we'll be home tomorrow.

We moved out of PICU onto the pediatric floor as planned.

21 November 2010

Jereth gained weight!! He weighed 2.55 kg (5 lbs 10 oz) when we brought him to the hospital, and the same on Saturday morning, but this morning he was up to 2.7 kg (5 lbs 15 oz). If he continues to gain weight without any other issues, we'll take him home on Tuesday.

Mom and Dad have some learning to do before he comes home, though. We have to learn to insert the feeding tube so we can change it when it needs changed and reinsert it when Jereth grabs it and pulls it out - like he did this morning (I had my first try inserting the feeding tube then). There is a pump used with the feeding that we will learn to operate. We also need to be comfortable mixing the formula and supplemented breast milk at the right concentration for the Calorie count the doctors want.

The PICU doctor and nurses have commented on how alert Jereth is when he is awake. He was watching the doctor this morning while we had our consultation. It was as if Jereth wanted to understand everything the doctor had to say.

20 November 2010 (pm)

Jereth at St. Lukes PICU

After a night of tube feedings Jereth maintained his weight - no loss, no gain. The nutrition has been increased from 22 to 24 Calories per ounce either as formula or as fortified breast milk. We're bottle feeding during the day at least to start. After 15 minutes anything he hasn't taken by mouth is fed through the tube.

Because of his heart defect Jereth is using up the calories he is taking in and more just to suck and swallow and for his heart. He's lost all of the reserves he had when he was born.

20 November 2010

We had to take Jereth to St. Luke's in Boise Friday afternoon. He was born five weeks ago at 6lbs. 2oz., he is now at 5lbs 10oz. The Pediatric Intensive Care Unit (PICU) doctor said the cause of it is heart failure - not that his heart has stopped, it is just failing to do what it is designed to do. He has two holes in his heart, one about 5mm in size, which is a goodly portion of his heart.
Because of this his heart is working much harder to provide his cells with the oxygen and nutrition they need - a normal infant's heart burns about 110 calories a day, his burns 150 to 160 calories a day. He also tires easily, making it hard for him to eat, so he has not been able to take in the proper nutrition. If all goes well, we should be bringing him home on Sunday.

19 November 2010

Jereth has been taking a diuretic for a couple of days now. Although the excess fluid on his lungs has decreased - well at least he is breathing much more freely - he has lost fluid everywhere else, too. His weight has gone down and he looks emaciated, his legs and arms are tiny sticks and his eyes are sunken and dark.
We'll be seeing our family doctor this afternoon so we'll find out if this is normal.
On the plus side, he has been eating much better, so hopefully that will bring his weight back up and get him looking more healthy. He has been as awake and alert as before so that is a comfort, too.

18 November 2010

We have an amazing family doctor. Dr. Mumford is a very caring and dedicated doctor. We really appreciate knowing he is watching out for our precious Jereth.
Saturday he sought us out at a church function to discuss options to help Jereth gain weight; Jereth still has not returned to his birth weight. On Sunday he again came to find us at Stake Conference, another larger church meeting, to give us instructions for supplementing Jereth's feedings.
Yesterday he called to see how things are going with the supplemental feeds and to see if we had been contacted by the pediatric cardiologist. His dedication and support is helping make this difficult time a little easier. It's very nice to know he really cares.

October 15, 2010

I taught as normal all day although I was having contractions for most of the day. Since I have had false labor with most of my children, I didn't think these contractions were any different, just annoying. I'd been having somewhat strong contractions for the past two weeks and when I saw Dr. Brett Mumford on Tuesday he and I agreed that it would most likely be a week or more before the baby actually came.

November 16, 2010

First Visit to the Pediatric Cardiologist

Today we took Jereth to the Pediatric Cardiologist. We are blessed to have been referred to a caring heart doctor who has a wonderful manner with both the patient and the parents. She explained exactly what is going on with Jereth's heart. The atrial shunt didn't close when he was born and he has a large (5 mm) hole in the top part of the ventricular wall. For now we will be suplementing his feeding so he gets more calories per milliliter and he will be taking a prescription to relieve the pressure on his lungs. We hope these steps will help him gain weight.