mirrors for the hospitals

Lance and I have set up an account if anyone is interested in donating money to buy mirrors for Good Sam and Childrens. The account is in Parker's name at US bank. All of the money will be donated to one of these hospitals. Kangaroo mirrors are nice to have available to the parents holding their baby. We will place plaques on each of the mirrors that says...

In loving memory of Parker Ringhand 7/28/2009 - 10/30/2009

Please feel free to email us with any questions @ www.laneylindsey@hotmail.com or in this blog.

A Good Day

October 30th was Parker's actual due date and we had 95 wonderful days as a family with him. Yes, some of the days were emotionally challenging. However, through the support of our friends, family and most of all our faith in Christ the burden was seemingly light. Lindsey and I are doing remarkably well at this point in the grieving process. What we have come to understand is that this process is very personal and unique to each individual. There is no right or wrong way to heal. We also understand that our friends and family have had to endure this time along with us. Please be comforted that all is well with us and our little man is in a better place. No more struggles, pain or limitations.

I am going to give a short account of yesterday but I'm sure Lindsey will want to post and I don't want to take anything away from her. Without question there were some tears, but no anxiety. Our immediate families, Aunt Barb, Uncle Barry and Uncle Clay came by to spend some quality time with us. Despite the added commotion and conversation in the room Parker slept soundly.

Before our families left the hospital we had a prayer and Parker received a beautiful blessing from Ben Mizukawa. There was not a dry eye in the room. Lots of tears but also lots of smiles and love.

Lindsey and I will have hundreds of pictures to go through in the next few days. We were also fortunate to have a professional photographer come by and take pictures of Lindsey, Laney, Samantha, Parker and myself. A group of photographers volunteer their time and provide the pictures at no cost to the families. We will not have these photos back for a while but will share them when they arrive. Parker was awake for a few pictures at the end and seemed to be happy.

My good friend Vivek Narendran, the director of the neonatology group at University Hopsital also stopped by to visit. He came by to offer condolences and support. He also said that all of the doctors met and agreed we were making the right decision for Parker. It has always and only been about what was best for Parker. Vivek also pointed out that getting the group to agree unanimously on anything was rare.

The rest of the afternoon was surprisingly calm. Around 3:30 the nurses gave Parker some medicine to keep him comfortable and I picked him up out of his crib to hold him. Renee the RT, gently peeled back the layers of tape and adhesive from his little face and removed his feeding and breathing tubes. My little boy seemed not so little now. I remembered back to when he was only a third of his present size. Lindsey and I took turns holding him and almost instantly Lindsey and I could see he was gone even though his body hung on briefly. We had only imagined what we would be feeling at this point and nothing was as we expected. We were at peace and very thankful. Lindsey and I have always been on the same page and we know our lives and the lives of our families have truly been blessed.

We had made plans to leave at that point but we both decided we would like to stay. Lindsey and I made a little casting of Parker's right hand and left foot. We took our time to bathe him and put him in a beautiful little outfit. We thanked the staff and finished our goodbye to Parker with lots of hugs and kisses.

Walking out of the hospital for the last time a told Lindsey, "Today was a Good Day". She smiled at me and said " yes, it was"....

"Therefore I endure all things for the elect's sakes, that they may also obtain the salvation which is in Christ Jesus with eternal glory."
2 Timothy 2:10

a decision made

Last night Lance and I prayed together. We came to a decision on our own and then took that decision to our Heavenly Father in prayer. We asked him if we were making the correct decision for Parker and for our family. I was fortunate to receive conformation right after our prayer. Lance received his conformation this morning as we were walking through the halls of the hospital.

We met again with Dr. Crossman, Parker's Nurse and a Nurse Practitioner. (Lance wanted them to review the MRI results will me...in their own words) After we discussed the results, they were able to show me pictures of Parker's MRI.

Through prayer and conformation, Lance and I have decided to extubate Parker tomorrow afternoon. This is not a decision that we take lightly and we feel that tomorrow is most appropriate. Parker was due on October 30th. He will be 40 weeks adjusted. Our families will be able to visit tomorrow during the day. In the early afternoon, Parker will receive a blessing. After the blessing our families will be asked to leave. Lance and I will be able to have our own tender moments with our son so we can each hug and kiss him. At that time he will be extubated in our arms.

I am thankful for my testimony of the Atonement of the Savior and know that Parker will be made perfect after he passes. I know that he will be all right and not miss out on any blessings he would have received on earth.

Thanks for every ones thoughts and prayers. We will post again in a few days. We love and appriciate every ones support over the past couple of months.

Quality of Life???

I will never take my "normal/boring" life for granted ever again. I used to say my life is not book worthy. I have been blessed with so many wonderful things: loving parents, supportive family and friends, an amazing spouse, two beautiful daughters and a precious little baby boy.

Today the results of the MRI came back and the news was devastating. Parker's brain has suffered greatly over the past couple of months. Most of his brain did not show up on the scan, because it was absent. It is not what the MRI showed...it is what it didn't show. His brain also showed signs of hemorrhage. Because of the amount of damage done to Parker's brain, the doctor's believe he may not ever be able to breathe on his own even with the surgery.

Right now the plication surgery is scheduled for Monday. Lance and I have to make a decision whether or not to put Parker through this surgery. At this time we know we need to pray about this and make the best decision for Parker and our family. Please give our family some time...and we will let everyone know what our next steps will be.

We are so thankful and feel very blessed to have the support that we have from all of our family and friends. Every moment that we have had with Parker has been an absolute blessing. The next couple of days Lance and I will be spending the majority of our time at the hospital with Parker. Thanks for all of your prayers...we have not felt alone.

MRI Today

Parker had his MRI today. Lance was able to be there for the procedure. It took about an hour. We will not know the results until tomorrow.

Samantha and I spent the day running errands. We opened up a bank account for Parker. Followed by a trip to the social security office. (Parker being a preemie is eligible for SSI.) Then we went to the mall to return a few items. We both got a quick hair cut and had a nice lunch at McDonald's. I was pleased with everything we accomplished and was glad I got to spend some time with Samantha. Samantha is at the best age and is actually fun to hang out with. She talks to everyone and made me smile many times today.

Care Conference 1:00pm

(Nissen - explanation below)

(Picture of a G-Tube/Parker may need this in the future; The Doctor described this to us as a button on your stomach)

Today we had a care conference with 6 people from the medical staff. Including: Dr. Crossman (Neonatalogist), Dr. Frischer (surgeon), Mellisa (Nurse Practitioner), Another Nurse Practitioner, Nurse Care Manager, Careen (Fellow). Overall I would say that the conference was productive. We discussed Parker's current state from our point of view as parents and we discussed what the next couple of weeks are going to possibly look like.

The first procedure Parker will have is a Plication. This will fix the diaphragm by folding it in an accordion fashion and tacking it down. The incision is through Parker's chest. This doesn't "fix" the paralyzed diaphragm it just gets it out of the way so the lung can start to rehabilitate. We learned that his lungs create more tissue up to age seven.

The next two surgery's may or may not be on the horizon based on Parker performance after the first procedure. The first is the G-Tube. This is a feeding tube that is more permanent than the one he has now. It will go directly into his stomach instead of the one he has currently that goes through his nose. This helps him to get more nutrition.

http://www.cincinnatichildrens.org/health/info/abdomen/home/g-tube-care.htm

Explanation About Gastrostomy / G-Tubes
Your child has had a tube placed in his / her stomach called a gastrostomy tube or g-tube. This tube provides an alternate way to offer food and / or medicines. It also can be used to vent your child's stomach for air or drainage.

The third possible procedure is the Nissen fundoplication. This is a surgery that treats reflux by taking the stomach and wrapping it around the esophagus.

MRI and Plication

We are going to move forward this week by scheduling the plication and brain MRI. Parker will be having his MRI in the next couple of days and will have the surgery as soon as they can schedule the operating room. Lance and I asked what limitations Parker may have with this surgery and the surgeon said...the surgery itself. The surgery is very rough and painful. He said he may have to break a few of Parker's ribs just to get to his diaphragm. Once the surgery is over, Parker will need a few days to recover before we will know anything.

Every day we learn more and more. We will know more after his MRI and we will know more after Parker has this needed surgery.

Parker Ringhand's Developmental Observation October 23, 2009

Parker was observed from 8:45am until 9:45am surrounding his morning care and start of his feeding. The purpose of this observation was to assess Parker's developmental goals and to develop a developmental care plan to help him achieve those goals. The information gathered from this observation will be shared with Parker's family and care team.

Environment

The large rectangular room called Pod D held 7 beds, 5 of which were occupied. The room was brightly lit by the long row of overhead lights down the center of the room and by several small amount of light at other besides and from light filtering in from the hall. The room was quiet as 4 nurses cared for the babies in the room. A cart used to hold care items for the baby next to Parker was setting next to Parker's bed and made his bed space quit crowded. A tall swivel chair sat next to Parker's bed and several more swivel chairs and a few rocking chairs were scattered throughout the room.

Bed space and Bedding

Parker's radiant warmer bed was in the second bed space on the right side of the room as one entered. The counter behind his bed held many care items and one of his new sleepers. The shelf behind his bed held his purple pacifier and his mouth care supplies. His bed was made with a colorful quilt and he lay atop his Z-flo positioner.

Parker's Behavior before Caregiving Interaction

Parker was observed for a few seconds prior to his care beginning as he was awake and crying and his face was bright red and purple. His monitor read his heart rate at 184 beats every minute and his blood oxygen level 84%. He forced to breath with the ventilator at 25 breaths every minute.

Parker's Behavior during Caregiving Interaction

Parker was observed as he was calmed and cared for by his nurse and the observer for the next 20 minutes. The observer began to talk to Parker and held him in a seated position in his bed. but Parker continued to fuss and squirm. As his diaper was changed he kicked out his legs and pushed his feet against the observer's hands. Once his diaper was changed and he was held in a seated position again Parker began to calm and look around as he breathed faster at a rate of 60 to 70 breaths every minute as he caught his breath. As he sat cradled in the observer's arms, Parker licked and smacked his lips as he looked around at his world. His assessment began and Parker began to cry again as his chest and tummy was listened too. He calmed again when his head was rubbed and his feeding started through his small orange feeding tube that stretched from his nose to his tummy. Parker was then laid in his bed on his back and given his pacifier. He stretched out his legs and held his arms close to his body with his hands in tight fists. He tried to bring his left hand to his mouth, but the IV board on his arm got in the way. The observer held his pacifier and he sucked and licked at it until his care was done. Parker was washed off with warm cloths, during this he turned bright red and stretched his body out straight with his arms down at his side. Once his neck was clean Parker calmed when his arms and legs were moved and the tone in his extension was broken (the stiffness of his arms and legs was stopped and he was able to relax and not drop his oxygen level. This is similar to an older child holding his breath.) He was again given his pacifier and bundled with his covered hands to near his face. Parker was now awake and looking around at his world. A soft heart beat sound was playing at the end of his bed and the observer read Parker a book as he gazed at her face and interacted with her through his facial expressions. During this time his monitor read his heart rate between 164 and 184 beats e very minute and his blood oxygen level 82% to 98% on 40% oxygen from the ventilator. His breathing was easy and uneven as he breathed over the amount of breaths given by the ventilator at a rate of 32 to 68 breaths every minute. Once Parker was calm and relaxed his color became pale pink with rosy areas over his nose and under his eyes.

Parker's Behavior after Caregiving Interaction

Following his care, Parker was observed for 10 more minutes. He continued to gaze at the observer as she continued to talk to him for 4 minutes longer. He then began to close his eyes as he became drowsy. His mom scented Snoodle was used to shade his eyes from the bright light at the bed next to him and Parker continued to bat his eyes for 2 more minutes before he closed them and drifted into a light sleep and his heart rate decreased to 150 beats every minute. His monitor read his heart rate between 150 to 168 beats every minute and his blood oxygen level 98%. his breathing was easy ranging between 32 and 58 breaths every minute. His breathing became more rhythmic as he settled into a light sleep.

Summary

Parker is now almost 3 months old (12 weeks) and is 39 weeks post-conceptual age. He was born to his mom Lindsey and dad Lance at 26 weeks post conception after several weeks of stressful events. At 14 weeks Parker's placenta began to separate from his mom and she began to have bleeding, then at 17 weeks his water sack began to leak. The sack sealed on its own and stopped leaking, but Parker's mom continued to have trouble with bleeding and required a blood transfusion before he was born. At 25 weeks Parker's mom went into labor and after 7 days the labor could no longer be stopped and Parker was delivered by vaginal delivery. Parker did very well at birth and needed little support to breath. He was given CPAP and taken to the NICU. During his stay at Good Samaritan Hospital, Parker was intubated several times for swelling of his nasal passages and sepsis. Between his intubations, Parker was on room air, breathing all on his own for 16 days. He was then brought to Cincinnati Children's Hospital Medical Center on October 12, 2009, after failing several extubations. Parker has a history of e-coli infections in his CSF (the fluid that surrounds the brain). This has caused some irritation or damage and caused Parker to have seizures, which he is now on a medication called Phenobarbital to help stop them. It was also found that the right side of Parker's diaphragm did not move like it should and later found that it was raised and not moving. Parkers's airway was looked at yesterday in the O.R. during a Micro Land B (Microsopic Laryngosogy and Bronchoscopy) procedure. Not much was found and soon Parker will return to surgery to have his diaphragm fixed. Parker currently needs his breathing tube very much and does not do well when he pulls it out. It must be replaced very quickly. He is receiving his mother's pumped breast milk that is being fortified to 26 calories per ounce and is being feed through his NG tube over 1 hour. He is slowly being transitioned to bolus feeds were he will be given all of his milk for the feed by gravity over 5 to 20 minutes. Parker has grown a lot from his birth weight of 940 grams (2lbs, 1oz). He now weighs 2410 grams (5lbs, 5oz). This tells us that he is growing slowly and is using his calories for recovering and breathing rather than growing. His calories have been increased in the past week to help his growth. Parker's mom and dad come in every day to spend time with him and today his mom is kangarooing with him, which he loves very much. Parker was held and kangarooed a lot before his transfer and he misses being held.

From this observation Parker shows us that he remains sensitive to his care and environment and continues to need lots of support to breath. He shows that he is very interested in his world and likes to interact with his caregiver when he is awake.

Goals

• From this observation Parker appears to be working toward the following goals:
• Continued strengthening of his breathing
• Continued efforts to console himself
• Continued interaction with his world

Recommendations

• To help Parker achieve his goals the following recommendations are offered:
• Continue to position Parker in ways that help him breathe more easily and bring his hands near his face. (Parker does not like his left side, but needs to work on turning his head to his left.)
• Continue to approach Parker slowly and offer hand containing before care to allow him time to adjust to the change in his environment and prepare for the care and interaction.
• Try to allow Parker to awaken on his own for care and feedings.
• Continue to follow Parker's cues and continue to offer him breaks in his care when he shows his stress cues, (crying, stretching out his arms and legs, turning bright red and purple, and dropping his oxygen level.)
• Continue to provide Parker with boundaries to brace his feet against, when he does not have boundaries to push against, he locks his legs out straight and has difficulty pulling them back close to his body.
• Continue to stay with Parker after care and interact with him and supporting him as he transitions to drowsy and/or sleep states.
• Continue to talk to Parker and allow him to see your face as his care is provided or when he is awake and interested.
• Continue to support Parker's mom and dad with holding him and kangarooing with him as he loves this and does best when held.
  

RSmith RNC
NIDCAP Specialist.