March 29th, 2010

Kierson continues to do well in the Continuing Care Nursery in the NICU. She had her 100th day of Life celebration late last week. She is feeding well and continues to pack on the weight. She is up to 5lbs 4 ozs and looking more and more like a typical baby (at birth). She is actually 40 weeks and 2 days old now today.

She continues to be on supplemental oxygen but at a mere 0.5 L/min. Her neonatalogist has been weaning her but this is as far as he has been able to go as of yet. It's such a small amount but if it is turned off completely, Kierson starts to desaturate.

The latest prediction is that Kierson should be home in about 2-3 weeks. We were hoping sooner but we certainly don't want to rush things. Over the next few weeks she might actually be weaned completely off the oxygen (which would be fantastic). We have been bracing ourselves for having oxygen bottles and tubing around the house and attached to our baby. Now we might actually be able to avoid these things. Only time will tell.

Kierson had a big vomiting episode this afternoon. Her neonatalogist drew blood and obtained urine for basic labs and cultures to search for possible infection. This episode could be a simple gastritis or it could be something more serious. We had a prior engagement to go to tonight to help support a great ministry called Hope Pregnancy Centers. We were a bit pre-occupied with Kierson, however. This could be absolutely no big deal or it could be another speed-bump along the road to coming home as these extreme preemies get sick fast and can deteriorate in a hurry. No word just yet. Deitre headed up to the NICU as soon as we got home.

We have greatly appreciated all your words of encouragement and your thoughtful prayers for Kierson and for us. We are so close to hopefully closing this chapter of our lives and opening another. We ask for your continued prayers for a smooth transition home and no illnesses over the next 6 months (at the least) for Kierson - and for us.

Emmie has decided it is time for her to start walking. She is only 9 months old!! I was hoping that she wouldn't be interested in this for a few more months. She hasn't been (and still isn't) interested in crawling no matter how much coaxing we gave her. She now loves to grab our fingers to help her stand up and starts walking. She "walked" around the coffee table to me while I was sitting on the couch watching the news. This totally surprised me as she had never done this before.

March 21st, 2010

Kierson is now 1 week status-post surgery and doing well. She continues to show signs of bulking up, however, her GI track does not like the fortifier they are adding to her feeds. She has been suffering through a lot of gas. Deitre says Kierson will be crying and inconsolable one moment, pass some gas and then go to sleep or smile for a little while until the next gas cramp. This has made for a long week for Deitre seeing this ongoing cycle.
Kierson remains on 2 liters/min of supplemental oxygen. We are hoping that with the return of her primary neonatologist, she will possibly make some headway towards weaning this down. We are optimistic despite him telling us that she will go home on supplemental oxygen.
Otherwise, Kierson has remained infection free (and so have we...). We are apprehensive about germs and infection now more than ever. Emmerson made it through the Fall and Winter without getting sick and we hope that once we get Kierson home, measures we have been taking will continue to work to prevent infection.
We greatly appreciate your continued prayers for little Kierson. She is not out of the woods just yet (even after coming home...). She is still very vulnerable to a "simple" respiratory infection which could spell disaster given her bad lungs.

March 14th, 2010

The pediatric surgeon relayed to us that he's glad they went ahead and took Kierson to the OR when they did. They repaired a very small inguinal hernia on the right. When he cut to open and view the canal on the left, he saw Kierson's ovary, fallopian tube and part of her uterus being pulled into the left inguinal canal. It's uncertain if there has been any compromise to the blood supply to the ovary that may have seriously injured it. Time will tell. Overall, the surgery went well and now both canals are closed.

Kierson came back from the OR still intubated. A friend of ours was the anesthesiologist on the case and did all that he could to try to safely extubate Kierson shortly after the procedure but she couldn't breathe enough on her own as there was too much anesthetic in her system. Kierson remained intubated overnight following the surgery. There were no problems during this time.

We arrived at the NICU the following morning hoping to find her extubated thinking the anesthetic should be long gone. However, she was still on the ventilator. After some discussion with the docs, she was given a chance to breathe on her own. Thankfully she did....with some coaxing as she had numerous apneic spells during the first 1.5 hours. From that time on, she did great.

Later that night, Deitre went up to visit her thinking it would only be a "hands on" time, but she was doing so well that they allowed Kierson to nurse. We are so relieved that this surgery did not end up being a nutritional set-back.

She continues to do well throughout today. She's performing all bodily functions without assistance but does seem to be in pain. This should subside over the next couple of days.

Thank you for your continued prayers for Kierson. She will hopefully be coming home sometime in the next 4-6 weeks barring any unforeseen setback. It has been a long 12 weeks already in the NICU. We are so ready for Kierson to be home with us.

March 12th, 2010

I got a call today that I hadn't wanted to receive. I was moonlighting and was in the midst of a handful of patients arriving around the same time. Deitre called saying that Kierson's hernia was back and PediSurg states she needs to go to the OR today. They had tried to reduce the hernia again, but it wouldn't go back this time. After re-evaluation a few hours later, there was concern that either her left ovary or some of her small intestines had herniated through her inguinal canal. There was concern for the blood supply becoming affected.
Thankfully, Dr. Juergens responded to my pleas for help and came to cover the rest of my shift (would this be a pinch-physician?). Deitre and I were able to meet with the Pedi Surgeon and we agreed that despite the risk of complications due to her lung immaturity and disease, the repair needed to be done. The surgery itself is relatively simple and typically without much complication. Our concern was the potential need for intubation and then the possibility of Kierson not being able to be weaned off the vent for days. This would be a huge set-back as the primary goal at this time is for GROWTH. If intubated, she would be off feedings for a few days and then back to incremental tube feedings, etc.
They just wheeled Kierson off to the OR about 30 minutes ago. We wait with anticipation for the good news that the surgery went well and everything that belongs in the peritoneal cavity is back in place (and in good shape).
Emmie is at home with Grandma who jumped in her van and flew up here to allow Deitre to be up at Kierson's bedside with me. I am so glad that Emmie is so young while all this is going on. She doesn't even know she has a younger sister yet!
Thank you for your continued prayers for Kierson and for our family. We have been through enough (in my humble opinion) and we are asking for a reprieve from any more "speed bumps" along the way to getting Kierson home. We know she has a long road ahead of her as far as development is concerned and is at a much higher risk of future hospitalizations over things such as a cold or asthma. We are just worn thin right now, and the thought of these things is a real discouragement in the present.

March 6th, 2010

Kierson has recently been diagnosed with an inguinal hernia. Over a three day period, it dramatically increased in size. Pediatric Surgery was consulted. They were able to reduce the hernia in the NICU as she is not able to undergo surgical correction at this time out of concern that she would not be able to be extubated after the surgery for many days. This would be a huge set back for oral nutrition. Pedi Surg is watching her hernia closely as we don't want it to return and put her at risk for bowel obstruction.

Her oxygen requirement remains elevated but we have made some progress in weaning her down from 4.5 L/min down to 3.5 but still with an FiO2 in the 40-50 percent. This is very slow progress but we remain encouraged.

Kierson is now taking breast milk by bottle and just 2 days ago, began nursing for the first time. She is doing remarkably well with this and tomorrow will be nursing three times a day. Hopefully her feeding tube will be removed soon - one less tube to her face. She is now up to 4 lbs 5 ounces.

She is at 36 weeks now, 11 weeks in the NICU behind us and about 4-6 weeks to go (hopefully, no more setbacks). We are more than ready to have her at home - but not before she's ready.

Emmie went to the park for the first time with the boys. She had a great time and the boys were a big hit with the other kids. She is trying to walk, with help, and shows no interest in crawling. She's talking more and more and is getting so tall. She's only 9 months but is wearing 12 month-old pants.