Sunday, April 6, 2014

Our Tucson visit to Paxton and family

Joe and Joi watching Paxton after his first week
Our new grandson, Paxton Nielson, was born 3-1/2 months early on Feb 28, weighing 1-lb 3-oz. His mother Joi suffered pre-eclampsia, raising her blood pressure quickly into the 200's and requiring an emergency C-section to save her life. Joi spent two days on a respirator in ICU at UMC in Tucson while Paxton was in the UMC NICU unit.
Family and friends in Tucson rallied to help, and hundreds around the world have joined in praying for them.

Us talking to Paxton Mar 26

Pres Berry obtained permission for us to interrupt our mission for a week to go to Tucson to be with them Mar 24 to Apr 1. What a blessing it was to be with them and feel the Lord's blessings, reassurance, and peace.

Paxton's still tethered to a hi-frequency ventilator to help get his lungs open and reduce fluids, so he can't be held or removed from his humid chamber. His oxygen saturation drops if he moves much, but he generally just lays still with his eyes closed ... no indications of discomfort, just busy surviving. We feel his strong determination when near him, and know that all of the prayers on his behalf give him extra strength to hold on.

Paxton's feet are about 1-3/4" long. His G'pa's ring fits his wrist
Paxton's a tiny little guy, as the pictures here show. In fact the NICU staff labeled his bed-side monitors with the name "little guy" for his first few days while Joi was still on a respirator because she and Joe hadn't yet been able to talk about a name for him due to his sudden birth.
Joi already has some "tiny" size clothes for him, which he should grow into before he leaves the NICU. Although his weight dropped to 1-lb after birth, he reached 2-lbs by 5-weeks when we got back to Florida.

Joi and Joe with the Fritzsche and Nielson grandparents

We were privileged to attend a meeting with Paxton's doctors, nurses, parents, and Fritzsche grandparents on Mar 26, where his medical condition, survival, developmental outlook, and treatment options were presented and discussed. We gave Paxton a priesthood blessing afterward, and also gave one to Joi and one to Joe. They are showing great strength and faith in God in this difficult time, and we rejoice in their courage to follow God's will in choosing the path forward despite the expected ups, downs, and uncertainties.

That weekend Paxton took a downturn, and we learned that he has a staph infection in his bloodstream and cerebro-spinal fluids, causing meningitis. They removed his PIC-line and went back to IV's for his antibiotics until the infection is controlled. By Apr 2, his blood-protein levels were nearly normal again, and spinal fluids probably doing better ... it's hard to get enough spinal fluid for more cultures.

Paxton's oxygen, heart, and respiration monitor

We got quite used to looking at this monitor to see how Paxton was doing during our visits to the NICU. We were fortunate to come to see him a number of times while in Tucson. The rest of the time we enjoyed staying with his siblings, Ava, Aubri, and Dallin while Joe and Joi were at the hospital or while Joe was at work.

Saturday night, Mar 29, Paxton had an emergency event requiring 1-finger chest compressions to assist his heart, but he survived it well, with great blessings from heaven. Joi describes this event and so many others beautifully in her facebook blog "Pulling for Paxton" that can be found via google.

Paxton with Shannon, his NICU nurse

One of the first times Paxton opened his eyes briefly was when Shannon, one of his night nurses, was singing to him, "I am a Child of God". Joi said their children always ask to sing that song as they go to bed each night, and that Paxton must be familiar with it from before his birth.

Fun times with Ava, Aubri, and Dallin

We enjoyed some wonderful time with Paxton's older sisters and brother while staying at their house in Tucson. We went to a neighborhood party, where Ava and Aubri got their faces painted and they planted seeds into peat pots. Also enjoyed playing in the backyard swings, working with tools and toy trucks with Dallin, and renewing our acquaintance with them. What a great spirit we feel in their home. Joe took time off work to be at the hospital the first couple of days we were there, and later he went to the hospital in the mornings and worked in the afternoons and evenings. Joi went to the hospital every day, but also spent time at home while we went to visit Paxton. Their neighbors and ward friends have been gracious and brought meals and much encouragement, love, and prayers to help them along their way.

Joe and Paxton with his NICU beads

The NICU adds a bead to Paxton's bag for each medical procedure they do on him. Joi and Joe have put the ones for the first two weeks onto cords, as shown here. Certain colors and shapes signify certain procedures such as new IV insertions, transfusions, etc., so some are more frequent than others. The bag has more ready to put onto the cords.

Jan taking a last look at Paxton before leaving for home

Paxton's room setup contains his monitors (upper right), feeding and IV controls (right), chamber humidity and temperature controls (center), and high-frequency respirator/ humidifier (left).
Paxton has been more stable since we returned to Florida on Apr 1, starting digestible milk instead of his TPN IV feedings. Joi and Joe have attended to his needs in addition to caring for their other 3 children, with help from family and friends, and lots of prayers, which have blessed them all. We trust that God will continue to grant them courage and peace as they navigate this difficult time in their life.