Saying Goodbye to our Precious Jr.

Tuesday, May 5, 2015

We had to say goodbye to our precious little Junior on Sunday night. We know that this is Heavenly Father's will, and we are at peace that Jake Junior was needed back home.

Spencer W. Kimball wrote "I am positive in my mind that the Lord has planned our destiny. We can shorten our lives but I think we cannot lengthen them very much. Sometime we'll understand fully, and when we see back from the vantage point of the future we shall be satisfied with many of the happenings of this life which seemed so difficult for us to comprehend."

We do not know why we were chosen to have this special experience just 7 months after losing our precious Elise, but we have faith that we will understand our Father's will more completely at some future time. From so many of the wonderful experiences that you, our dear friends, have had and shared with us, we believe that Jake's little mission on this earth was to help build faith and testimony in his parents, sisters, and all of our friends. He was successful.

Thank you so much for your faith and prayers. We believe they were able to carry little Jacob through long enough to spend these two precious weeks with him.

Thank you for all of your love, support, and prayers,
Jeanne, Jake, Madi, and Kate

Memorial Service for Baby Jacob

We will be having a memorial service for Baby Jacob this Saturday, May 9. There will be a viewing from 10-11 and a short service at 11:30. All are welcome, but there is certainly no pressure for any of you to attend. The address is: 10312 S. Ashley Park Drive Sandy, Utah 84092

In lieu of flowers, please send donations to the University of Utah NICU. Contact Suzy Ricker at 801-581-2121. She has a number of different things people can donate besides money.

Calling all prayers!

 Saturday, May 2, 2015

Today has been a pretty hard day. We are posting earlier than usual to request some specific prayers on Juniors behalf.

This morning Junior started struggling to keep enough oxygen in his lungs.  The x-ray showed that his lungs were actually hyperventilated, so they couldn't increase the amount of ventilator support other than giving him 100% oxygen.  Then, they switched ventilators back to his original ventilator that doesn't keep a residual pressure.  This didn't help too much and his oxygen was still way down.

They tested the blood oxygen level between his wrist and leg, and it was different by about 10-15%, showing that his oxygenated blood wasn't circulating.  They were able to give him some nitric oxide which helped increase the blood oxygen level overall and increase the amount of oxygenated blood circulated throughout the body.  Even with this extra support, they have had to keep him on 100% oxygen.  Our doctor told us they are running out of options to treat him if this doesn't work.  That was very hard to hear and we have been teary today. They think that the PDA (hole in his heart) is shunting blood without properly oxygenating it.  The faster the PDA can close, the better it will be for Junior.  Right now it doesn't look like the Tylenol is being very effective.  They also gave him an extra steroid, hoping it will help his lungs.  There is a small chance it could result in brain damage, but low oxygen could also do that.

The bright spot of the day was that he opened both of his eyes and was looking around a little today. It was so cute and was just what we needed to lift our spirits a little.  We have felt very blessed to have so many good days with Baby Jacob the past two weeks.  We trust in the Lord and have felt his comfort and love throughout this tough day.

We would love your prayers
Here are the things we are praying for specifically:
1. Tylenol will be effective in closing his PDA.
2. He will be able to have enough oxygen in his blood and that his body will circulate it properly.
3. His bleeding in his brain will decrease.
4. That he will be able to be stable enough that he can tolerate feeds and his intestines will work properly.

Thank you so much for your faith and prayers.  We are hoping that as we unite in specific prayers, he will be able to receive these specific blessings.

Both eyes open!

Three Generations

Wink!

Friday, May 1, 2015

It was a better day than yesterday.  When we got to the hospital this morning Baby Jacob opened his left eye.  Our hearts melted!  He kept it open for a couple of seconds and then had to rest with it closed the remainder of the day.  He also got to rest on his tummy for few hours, which he seemed to like okay.

They are upping the dose of Tylenol to help close the hole in his heart.  It will take several days before they will do another echo-cardio gram to see if the hole has shut completely.

The blood cultures still have not grown any infection so our fingers are crossed that the possibility of menigitis is going down, but we still won't know for certain for awhile.  He was given his first dose of antibiotics before the first blood cultures were taken, so the lack of culture growth doesn't necessarily mean no infection.  They will do another draw tomorrow and see how his white blood cells are doing and then may stop the antibiotics since he has had a seven-day course.  We remain very hopeful.

Jr. opening his eye for the very first time.  Such a cute wink!

Another visit from the twins

Thursday, April 30, 2015

So the twins got to visit Jacob Jr. again today. The NICU allows siblings under 14 to visit infants two times a week for 15 minutes. The girls love seeing him move and wiggle.  They especially love his binky!  He has the smallest binky made and he doesn't take take it very often, but it calms him down sometimes when he is fidgety.

Junior had a good morning but a rough afternoon.  The nurses have 3 indicators of pain/discomfort.  1) excessive movement or fidgeting, 2) elevated heart rate, and 3) low or greatly swinging blood oxygen levels.  Junior was exhibiting all three this afternoon even after his sedative and painkillers had been given. The doctor was a little worried and ordered an immediate chest x-ray to see if any internal changes were evident.  Fortunately there weren't, so they asked Jeanne to do a containment hold (where she holds his feet and head snug) and he calmed down a bit.  Finally, he was due for another dose of painkiller and that calmed him down.

Tonight they also finally pulled out his umbilical arterial line which was almost at its limit and were able to successfully put in a secondary line on his wrist where they can continue to draw blood and monitor blood pressure.  They were concerned about being able to install that line but it went in smoothly.  His liver has remained stable with the Tylenol treatments they are giving him to close the hole in his heart. They will stay on that course and do another echo-cardiogram early next week to see if it has been effective in closing the PDA.

Thank you for all of your love and prayers.  Here are a few more pics for you!

Madi with a big cheesy grin for Junior

Kate being a good big sister

Junior practicing his reverent pose, with penguin feet

Echo-cardiogram Update

Wednesday. April 29, 2015

So Junior got what they call a "blood draw holiday" today.  Kind of like a little birthday present for him: you get to keep almost all of your blood today!  They now have a few external sensors on him (like the red light finger sensor they put on adults for blood oxygen level) that allow them to closely approximate his blood gasses without having to draw them so often.  The blood gas draw is 0.3 mL, so in a day where they have to take a bunch of those they could end up taking several mLs of blood.  As long as his blood gasses stay fairly stable and they get a good read on the sensors, they can minimize the actual draws.

The trade-off, of course, is lower quality information.  They didn't get any new information on white and red blood cell counts today without those blood draws, so its harder to tell how effectively he is fighting infection.  They did finally get some growth in one of the cultures they took from the fluid in his lungs and found it is mycoplasma (We are going to start linking some of the more technical information for easy look-up).  They said this will cause his lung disease to get a little worse but they have already treated it with the antibiotics, so hopefully the effect is minimized.  The doctor is hoping that this is the extent of the infection his body has been fighting, so hopefully that means no meningitis, but we still won't know that for sure for a little while.

So the big news of the day was the echo-cardiogram (heart ultrasound).  Good news and bad news.  The good news is that the heart is properly formed and appears to be functioning normally.  The bad news is he has a Patent Ductus Arteriosus.  This is a hole in the heart that doesn't close on its own in some newborns and is more common in preemies and micro preemies.  The effect of this PDA is that the heart sends more blood than it should to the lungs, which are already struggling and have too much fluid. Also, the heart is working harder than it should to pump the blood to the rest of the body, which might be contributing to his low blood pressure issue.

The treatment for PDA is usually ibuprofen or another NSAID.  In Junior's case, the doctors are afraid that a NSAID will harm his already immature tummy and contribute to his bleeding issues (NSAIDs are blood thinners).  Acetaminophen has been trialed recently in several studies with pretty good results and without the above-mentioned side effects.  They have started him on that today and will monitor liver function for the next few days to make sure it doesn't decrease with the new drug (liver dysfunction is the main side effect of Tylenol, so make sure to follow the instructions on your home use).


We are so grateful for your prayers on our behalf.  We feel your strength every day.

Junior is thinking about something....

10 days old

Tuesday, April 28, 2015

We had a lot to digest yesterday with all the test results,  but have had a good day with Baby Jacob today.  We got to see him during "CARES", so Jake Sr. was able to change Jr.'s diaper again and Jeanne was able to take his temperature.  The little things are still so sweet to us.  Baby Jacob's skin is looking better each day.  The black and blue bruising from his emergency delivery is slowly going away.  It looks like he has grown a little bit too!  His weight swings quite a bit depending on how much blood/fluids they have to give him, so take it with a grain of salt, but his weight is currently 1 lb 6 oz.

Jr.'s blood gases were stable and they only had to take a couple of blood draws today, where yesterday they had over 10 draws in one day.  His blood pressure is still low, so he got another transfusion today.  His white blood cells are up but somehow they can tell that many of the cells are immature, which means he is still fighting an infection.  They are still not sure which infection he might have so they are keeping him on a few different antibiotics.

He got an IV placed back in his head for the transfusion.  It was nice to have both of them out for a day so he looked more like a regular preemie, but we knew they would return.  We are just so grateful they can help him.  The regular IVs (where he gets blood plasma and transfusions) usually only last 1-2 days.  The PICC lines where he gets all of his fluids and antibiotics can last up to 30 days.  He also has an umbilical arterial line where he gets his blood drawn and they can continually monitor his blood pressure accurately.  Those last 10-14 days after birth before they become a large infection risk, so it will have to come out shortly.  They will have to replace it with another arterial line in his wrists or lower legs.  Our poor little guy is a pin cushion!

We were able to view the ultrasound images with the head neonatal specialist for the NICU.  She showed us where and what the bleeds on the brain looked like and discussed short term and long term outcomes.  It is possible that the bleeds could stop as well as for the bleeds to get worse.  They will continue to monitor the bleeds with weekly ultrasounds.

The doctor also showed us his history of lung x-rays.  He will have chronic lung disease for sure, but can hopefully grow out of it as he will continue to develop new lung tissue until age 6.  She said that if and when they finally get to the point where they can discharge him to come home, he will need to be on supplemental oxygen for at least a few months and maybe up to a year.

Ultrasound Update

Monday, April 27, 2015

Baby Jacob had an ultrasound on his head this morning.  He did a great job holding still for it and seemed to enjoy the short head massage.  We waited anxiously for the results and got a call from the neonatal specialist doctor at the NICU this evening.  The ultrasound showed that Baby Jacob does have bleeding on his brain called an intraventricular hemorrahge (IVH).  The bleed is a grade 2 bleed in the ranking system of bleeds.  There is nothing that the doctors can do for this particular bleed.  A grade 1 or grade 2 bleed involve a smaller amount of bleeding than a grade 3 or grade 4.  Most of the time, there are not long term problems as a result of the bleeding when compared to preterm infants that don't have IVH.  We are hopeful that this is the case for Jr.

Our doctor then went on to tell us that they had found additional bleeding on Baby Jacob's brain that is less commonly found in preemies.  It is called a cerebellum hemorrhage and is only on the left side of his brain. This region of the brain plays an important role in motor control.  It contributes to the coordination, precision, and accurate timing.  At this time our doctor is not sure what the long-term outcome of this bleed will mean for Baby Jacob.  He will have a specialty team with an occupational therapist and physical therapist as well as other specialists that will be added to help him in the future. They will continue to monitor both of these hemorrahges with weekly ultrasounds and we pray that they will decrease in size as he grows.

As far as having meningitis, the doctors are still not sure if he has it.  He is showing signs of an infection with a fairly low white blood cell count and they are treating him with antibiotics.  So far it seems to be working, as his white blood cell count is going up a bit each day.  Unfortunately, the only way to test for meningitis is with a spinal tap and he is not stable enough to tolerate it, so they just continue to treat with broad spectrum antibiotics that will hopefully eliminate the infection.  We will know more each day.  

Jr.'s blood pressure was very low today and they are still trying to figure out why.  He has about 40 mL of total blood in his body and they have to take sometimes 4 mL of blood in a day, 10% of his total supply!  This is the reason for a lot of the transfusions.  There are some different treatments for low pressure they can give him but they are trying to see if he can sustain it on his own for a few days.

We are staying positive with all the news we were given today about our precious boy.  It could have been a lot worse and we are grateful that there are things we can do to help him as he grows to have the best possible outcome.  Of course, he is in our Heavenly Father's hands and we don't know exactly what is in store for Jr.'s future, but we continually pray that we can align our will with His and be worthy of any blessings He sees fit to bestow on our little family according to our faith, and the significant and powerful faith of all of you who are praying for us.  THANK YOU!

Our Precious Boy