With a Twist

When Avery came home I wrote that we had removed our patient identification bands because we didn’t need them anymore. I could not have known how wrong I was.

Our first days home were great. Avery seemed to be enjoying her new environment and was adjusting to getting more sleep. Unfortunately she was adjusting too well. On the evening of Christmas Eve her monitor began alarming with such frequency that we became very concerned. Looking at her we could tell that she was fine but the monitor was telling us that her heart rate was dropping, and most of the time it was happening when she was sleeping. After a few hours we determined that the monitor was malfunctioning and called the company that owns the equipment. The on call representative recommended some adjustments and told me to call back if the problems persisted. Within an hour I was back on the phone with him. The monitor had stopped alarming but it had also stopped working. Out of fear I decided to stay up with Avie until the new monitor arrived. At 7:00 am on Christmas morning I finally was able to go back to sleep.

The new monitor seemed to work fine throughout the day, but then on Christmas night the alarms started again. This time Robin stayed up all night. Each time the alarm would sound we would look over at Avery and then wake her up. She was less than happy with us.

On December 26 I picked Maddie up for her stay with us and she was very excited to see her baby sister. When we arrived at the house she kissed Avie numerous times. Unfortunately the monitor was alarming again. I called the NICU and spoke with one of the doctors that had cared for the baby and he suggested taking her to the emergency room. When I told Maddie what was going on she asked where her nurse bag was and said that she would help.

So on the day of her five month mark we packed a few things and drove Avery to Fairfax Hospital. Upon our arrival at the emergency room we were quickly admitted and she was moved to a room. On the ceiling in the room I noticed that there was a picture of a Monarch Butterfly-the symbol that we had come to associate with the loss of Sienna. I pointed the picture out to Robin and we both started crying.

From the monitor that was in the hospital it was clear that our home monitor was not malfunctioning as Avery’s heart rate was indeed dropping below the standard of eighty beats per minute that is considered acceptable for infants. Additionally her body temperature was below 96 degrees. The doctor that was seeing her ordered that blood and urine samples be collected as these symptoms are often signs of infection. He further told us that since the samples had to be monitored for forty-eight hours, Avery was going to be admitted to the hospital and due to her extensive medical history her admission would be to the Pediatric Intensive Care Unit.

Robin and I decided that with the baby in the hospital and Maddie at home with Robin’s parents, one of us would stay at the hospital while the other went back and forth to help care for Maddie. Since Avery was doing quite well breast-feeding Robin would have to do a bulk of the stay in the hospital. Because of her dedication she wound up staying the entire time.

The doctors in the PICU reviewed Avie’s medical record and consulted the doctors in the NICU as well as other specialists and then decided that she did not need to be in intensive care so the decision was made to move her to the regular pediatric unit. And then the doctors and specialists told us that the dips in her heart rate were just going to be something Avery will have, especially while she is sleeping. Because she recovers so quickly, almost always by herself, they told us that they were not too concerned with the issue. Then, after multiple rounds of antibiotics, the tests that had been run came back negative for any infections. Avery was free to go home again.

Throughout this second stay in the hospital, with more needles and catheters, Avie cried only once. And that was when the nurse was removing the tape that had been used to secure the nasal cannula to her face. Her warrior ways continue.

Within a few days of the release from the hospital Robin and her mother took Avery to two follow-up appointments. The first was with the Retinologist that had done her second eye surgery. He told Robin that Avery’s right eye seemed to be getting better and that her left eye, the one that had required the second surgery, though scarred, also seemed to be improving. There is still some concern with both of her eyes, but the encouraging news was that he believes that the baby will have at least some vision in both eyes.

The second appointment was with the Pulmonologist (doctors who specialize in respiratory issues). This appointment also brought good news. The doctor downloaded and reviewed the data from the home monitor and said that nothing on the monitor concerned him much. He further stated that he would order that the parameters on the monitor be reset, thus allowing Avery’s heart rate to go below the standard eighty beats per minute that is the norm with infants. Since these settings have been changed, the only alarms that have sounded have been associated with shallow breathing.

Neither Robin nor I have slept much and we feel like we’ve each lost another couple of years of our lives, but at least Avery seems to be doing well again. The world is right again.

Avery The Elf-Christmas 2010

Momma and Baby Avie napping after Christmas dinner.

 

Santa's little helper.

"Okay, Mommy, I'll try to let you and Daddy sleep tonight."

"Hey, I just wanted to come back here to see my favorite nurse! Bring me Racquel!"

"You're sure funny, big sister. I think I like you."

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4 Responses to With a Twist

  1. Erin and Steven Shillingburg says:

    i am so glad that shes adjusting at home so well! you all will continue to be in my prayers! Happy new year!

    Erin

  2. Nicole Malachowski says:

    So glad Avery is back home…sorry to hear about the ”side trip.’ We had one of those ourselves and we know how it can age you over night. Your daughters are both beautiful, I love the picture of them together. So happy to hear the good news from the two specialists…what a great way to leap into 2011! Each day will find Avery stronger and stronger. She is a champion! So are her parents 🙂

  3. Angel Roggenkamp says:

    I was so worried when you told me Avery was back in the hospital. But’ once I got to mom and dads I felt better knowing she was okay. I felt even better when dad told me she was going home in a couple of days. I brag all the time to people where I work about you, Robin, Maddie and Lil Miss Avery. I love you brother. You are an amazing man

  4. Danielle says:

    We know the doctors in the PICU all too well from our oldest daughter’s stay there just over a year ago. They rival the wonderful talent in the NICU and I’m sure you were glad to have only the best for Avery. I often give thanks that we don’t live in a rural area that is void of excellent hospitals. I’m sure you won’t miss those “beds” for the parents – not something you can explain to someone who hasn’t “slept” in one.

    I also know all too well the horrible sound of that apnea monitor alarm. It’s hard to explain the feeling of bolting out of bed to that incessant noise, rushing to your daughter’s bedside hoping that you don’t have to remember “look, listen, feel, 2 breaths, 30 compressions, 5 sets then call 9-1-1.” So many times I’ve reviewed those steps in my head. Hoping that it doesn’t go off as I’m driving on 495 where there is NO WHERE to pull over to start CPR. It warms my heart to hear that she is back at home and though I know you still aren’t sleeping well, I’m sure you have some sense of comfort in knowing that the pulmonologist is happy with the information from the download. Hopefully you will continue to adjust to your “new normal”. I find that every day gets a little easier as you adjust your expectations.

    Your comment about the butterfly brought tears to my eyes as I thought about little Saint Sienna, Avery’s own protector watching over her. I will never look at a butterfly the same way, although if a representation has to be chosen, what a beautiful choice. Such grace and elegance that is so perfect for a beautiful baby girl.

    I appreciate the release from thank you notes…I have a long list that I have not been able to complete. Your words were perfect in explaining the importance of support from others and your feelings about receiving that support. It’s like a bolis dose of caffeine ;)And with that, I’m sending you both warm hugs. And although we only met briefly, my heart is bonded to your family and I do hope that we can get together one day. You are both rockstars in my book! Keep the Faith and Courage – it is an inspiration to me and my husband.

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