New Year's Eve 2010

Jereth's temperature last night and this morning hovered around 102-103 degrees Fahrenheit. His weight was down below his weight when we came to Primary Children's, due to diarrhea. The blood and urine cultures were normal and the viral panel preliminary results were negative, so a stool sample was tested. That came back positive for the rotavirus, a stomach flu virus, which explains the temperature, upset tummy, and diarrhea.

30 December 2010

This morning things were looking really good for getting us home on Saturday. Tonight Jereth has a temperature that is causing concern. To decide whether or not to send us home poor, sweet baby Jereth has been through the ringer tonight.

29 December 2010

There is a plan for us to go home -- well at least a tentative plan -- on Saturday morning.

Jereth is stable with the higher rate of air flow and is up to 7 lbs and 8 oz (3.4 kg). As long as he continues to gain weight and does well in the safety tests they have planned for him, we will be heading back to Idaho soon.

There are two safety tests planned for Jereth, one to make sure he will be able to handle the high flow being off for 30 minutes or more, to simulate him getting the nose-piece out of his nose without us noticing, and a much longer simulation of the ride home in a car seat.

28 December 2010

Out of PICU - Again
Yesterday Jereth had an upper GI Barium Swallow procedure (he didn't swallow the barium this time because of the aspiration risk - they used a tube to put it directly into his stomach) to see if he has problems with his stomach emptying into his intestines. That test came back normal which means he will continue with the NJ tube for feeding. The PICU doctors had discussed the possibility of putting a line directly into Jereth's intestines (a gastronomy) but the results of the upper GI don't support the need for one.

26 December 2010

Christmas Weekend Excitement
After a pleasant Christmas Eve and Christmas Day, Jereth struggled last night and is back in the pediatric intensive care unit (PICU).

Friday morning we had a parade of doctors. We had 3 hospitalist doctors, the on-call doctor, the resident, and the intern visit first. Then we had two heart doctors, the specialist and a fellow. Finally we saw the lung doctor. The plan at that time was to continue trying oral feeds and a lower air flow rate, trying to fine-tune how much help Jereth needs and get him ready to go home.

23 December 2010

Jereth got to see the younger four of his siblings for the first time since the Wednesday before we left Idaho. While he was in the PICU the children under 12 were not allowed to visit, so when the family got here Tuesday night JD, Karianne, Dustin, and Sam had to wait in the waiting room but were not able to see Jereth. Each of them were able to hold him today and they really enjoyed being with him.

22 December 2010

Out of PICU
Jereth is doing well enough to be moved out of PICU today. The high-flow air was down far enough that he is now on regular oxygen which means he no longer needs to be in intensive care.

We are enjoying being in the infant pediatric wing. He rests comfortably and they are slowly trying to wean him off the oxygen completely if he can handle it. There are still a couple of tests they want to run before deciding when to send Jereth home.

There has been talk that he might be released before Christmas, but I am not getting my expectations up. I would rather he stay long enough to be certain he will be able to remain home until he is ready for the surgery.

21 December 2010

The plan was to try taking Jereth off the ventilator at 2:00 pm today. He had other ideas. By 12:30 he had the tube partly untaped and coming out of his throat, so the doctors approved taking it out early. Because we were not sure what caused his airway to be blocked there was concern that he would have to go right back on the ventilator so everything was prepared in case they had to put another tube in.

20 December 2010



After the bronchioscope



Jereth had his first procedure requiring sedation today. Although the procedure went well, the aftermath was scary.

To prepare for a bronchioscope where a doctor looks at his airway with a tiny camera all the way down to his lungs, Jereth's feeds were stopped at 5:00 am. He was a very sweet boy for having an empty tummy all day long. I held him most of the day and he slept quite well.

19 December 2010

Sundays in a hospital are usuallyquiet and uneventful. Today was no exception. Jereth and I spent a quiet day with no new tests or procedures done.

Tomorrow he is scheduled to have a scope of his airways down to his lungs and possibly a simple laser surgical procedure to repair his larynx if the scope shows the procedure is warranted. He will also have a swallow study, where he will drink a mixture containing barium, a radioactive element, and x-rays will be used to see what happens when he swallows.

The nurse talked like he will be sent home (without the heart surgery) as soon as they can figure out what is going on with his airways and he can be weaned off the high-flow air.

18 December 2010

Today the doctors explained that they don't feel comfortable performing heart surgery on Jereth right now because they don't see the expected indicators that he is in heart failure. His poor growth and difficulty breathing are a problem, but they don't feel that the VSD (hole in his heart) is the primary cause of either problem.

At this time they believe there is a problem in his lungs that combined with the malacia (weak airway walls) is causing his breathing problem. To perform surgery on his heart right now could damage his lungs further due to the bypass machine that is used to take over the heart/lung function during the surgery. So  I met with a pulmonologist (lung doctor) today.

17 December 2010

Jereth in the transport incubator

The transport team from St. Luke's came to our room at 7:30 this morning to get Jereth ready to go. They brought an incubator on a gurney for him to travel in. The set-up included monitors, a machine for his feeds, and air, but the air was not moisturized like he needs. The transport team consulted with Dr. Jansen from PICU about the best method to keep his airways hydrated with the high rate of flow he needs. They determined that saline drops put into his nose every 15 minutes during the transport would keep him from drying out.

16 December 2010

 

Ready to make a trip to Utah


Dr. Walker came by this evening to love on Jereth before we go tomorrow morning. She expressed her confidence in the team at Primary Children's. She is grateful they recognized the struggle he is facing and the need to get his heart repaired so he can start to grow.

We're supposed to be leaving here at 9:00 am. Once we get to Salt Lake the doctors there will evaluate Jereth and start the process for scheduling his surgery. Until the doctors there see him in person they can't make a final decision about when the surgery will be best for him. There are a lot of factors to consider which is why I'm grateful that a team of experts will be calling the shots.

Surgery Update

It looks like our most important Christmas present this year will be a mended heart for precious baby Jereth.

Dr. Walker called this morning. Jereth's surgery is scheduled for next week in Salt Lake City, Utah. St. Luke's is arranging for an air transfer on Friday to Primary Children's Medical Center which means Jereth and I will be flying to Utah. Dad and the rest of the family will drive down later.

14 December 2010

Jereth's Gift from Santa

Early Visit From Santa
The Boise Fire Department brought Santa Claus for an early visit to the pediatrics floor of St. Luke's hospital today. Jereth got a stuffed animal (I think it's a cat, but I can't be sure) from the big man himself, but I forgot to get the camera out until after Santa had already left.

13 December 2010

Scope Results
The scope of Jereth's upper respiratory tract confirmed a moderate case of laryngomalacia or weak walls of the larynx. When he breathes in the moving air creates an area of low pressure in the larynx. Since his larynx walls are weak, the larynx collapses and makes it difficult to breathe.

Dr. Beck who did the scope said he appears to also have mild tracheomalacia or weak walls in the trachea. Both are conditions that are made worse with reflux so the treatment for reflux he is getting should help. Neither condition is severe enough to need special treatment and the walls should get stronger as he gets older. To confirm the tracheomalacia would require a scope with Jereth sedated so the scope can get past the vocal cords.  Since the treatment would not change with a confirmed diagnosis there's no good reason to do a sedated scope.

12 December 2010

Today has been a quiet day, letting Jereth sleep as much as he will. His weight has increased slightly while here, from 3.0 kg (6 lbs 10 oz) to 3.1 kg (6 lbs 13 oz) and he is breathing much easier with the forced air therapy.

Tomorrow Doctor Beck will scope his upper respiratory tract to see how much damage there is from reflux and how much of his breathing issue comes from malacia, weak walls in the airway.

Once she has the results of the scope, Dr. Walker will contact the doctor at Primary Children's Medical Center in Salt Lake with that information as well as the results of the echocardiogram he had on Friday. She expects to hear back from that doctor quite quickly and they will determine how soon the surgery can take place. We're hoping to know something a little more definite about the timing of the surgery by Wednesday.

11 December 2010

Back in PICU
We started the day with a trip to Dr. Walker, the pediatric cardiologist. Jereth had another echocardiogram then we met with the doctor. She had considered doing a sedated echocardiogram but since the doctor at Primary Children's will need to do that procedure before the surgery she chose not to do it here, too.

When Dr. Walker saw how much Jereth was struggling to breathe and considered that he still has not gained much weight, she decided he needs more help than he was getting. She sent us back to the pediatric intensive care unit (PICU) at St. Luke's Regional Medical Center in Boise.

9 December 2010

Dad and Jereth had a busy day while I was at work today. The insurance company called to set us up with a case worker to follow Jereth's medical needs and work with us to keep costs down for both us and them. Then the home health nurse came for her weekly visit.

Jereth has gained another 7 ounces. He is up to 6 lbs and 10 ounces!!

7 December 2010

Baby Bright-eyes

We met the physical therapist for Jereth yesterday. She came to the house to teach us ways to help Jereth conserve energy so he can use those Calories to grow.

He's struggling so much just to breathe that he doesn't have much energy left to eat, so he's getting more and more of his nourishment through the tube. The therapist tried a technique to get him to take more from the bottle, but after seeing how he struggled told us that it would be better to go ahead and give him almost all his food through the tube. That way he can use more of the Calories he is taking in to help him grow.

4 December 2010

Reflux Issues
Our home health nurse got to see firsthand on Thursday what happens each time Jereth spits up. It is a rough experience for him and he gets sweaty, pale, and clammy. She called the doctor's office to see if they would call in a prescription for reflux for him.

Friday we got a call from the doctor's office saying that Dr. Mumford was out of town but his partner, Dr. McGuffey had approved a prescription and we could pick it up at the local Albertson's so we'd have it for the weekend. So we went to Albertson's after I got home from work and the adventure started.

2 December 2010

Another Snow Day
Icy roads this morning meant another day of no school, and another day for me to enjoy cuddling with little Jereth.

Home Health Nurse Visit
The nurse, Shawn, came this afternoon to weigh Jereth - he's up to 6 lbs 3 ounces from 5 lbs 14 ounces on her scale last week. Jereth has been spitting up quite a bit since he started having enough in his stomach to spit up, and the nurse felt there might be value in getting him a medicine for reflux. She's going to check with the doctors, both our local doctor and the pediatric cardiologist, to see if they believe it will help him.

1 December 2010

Snow Day!!


Last Night's Snowfall

 No school today so I didn't have to go to work and got to spend more time with my precious little Jereth. We snuggled and cuddled and enjoyed a lazy day. Jereth's brothers and sisters were glad to have more time at home with him, too.

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.