April 8th, 2010

Final tasks were taken care of in the NICU over the past several days including one last bath. Kierson doesn't seem to mind the baths anymore. I guess we'll see once she gets home.

We came home after saying goodbye to many of Kierson's NICU nurses yesterday morning. Deitre had a "thank you" cake done that had the images of Kierson's feet at 29 days and 115 days of life. It was pretty awesome to see how much she has grown.

After a few pictures and loading all of her stuff in the car, we headed home. Emmerson wasn't even phased by the crying little bundle in the carseat next to her.

Getting Kierson situated here at home involved some last minute decisions. The living room will be her temporary living quarters for a little while despite having initially set her up in our bedroom with a bassinet. This will work for now as we get a routine down.

Kierson is home! It's so hard to believe. We are so glad to have her here at home with us. She is doing well so far.

I took the first night duty so Deitre could rest. Besides the pulse/ox machine beeping all the time (the sensor has a hard time when Kierson moves her foot, which she does often), Kierson did well overnight (me, I got about 45 minutes of uninterrupted sleep....I really despise this pulse/ox machine...).

Last evening, the home health company brought Kierson's oxygen concentrator which looks like a portable dehumidifier. It makes a constant low pitched hum with small intermittant bursts of air every few seconds as it releases pressure. It'll take some getting used to. It may end up out in the living room instead of in our bedroom!

Kierson is on less than 1/4 L/min of supplemental oxygen. This is such a small amount, but without this, she doesn't do well. Of course, I vividly remember her being maxed out on 8 L/min NC and still struggling to maintain oxygen saturations in the low 80s after being taken off of the ventilator the second time. In a real sense, we gladly take the humming and hissing intrusion; but no doubt, this machine is going to take some getting used to (as well as the 20 feet of oxygen tubing running from it).

Emmie doesn't seem to mind the "intruder" in her life. She has looked over at Kierson in the bouncer on the floor as she walks nearby holding onto the coffee table. But she hasn't seemed too interested in her yet. Emmie is such a great baby. She was in her room for about 45 minutes last night right before bed-time for "alone" play time, sitting in the midst of her toys on the floor and just babbling up a storm. I snuck in to check on her and she gave me the biggest smile and clapped when she saw me. Just before bedtime, Deitre read her a book and she went off to sleep. I have never known a 10 month old to be so easy going!

Thanks for your continued prayers for Kierson, Emmie and for us.

April 6th, 2010

T minus 2 days and counting...

Kierson is to come home in just 2 short days. She has continued to do well enough that her neonatologist feels comfortable with her going home. Of course, it won't be without oxygen, nebulizer treatments and a diuretic for the first few weeks.

We found out the good news just about 4 days ago and over the past few days, we have been scrambling to get items necessary for her arrival. Deitre gets to spend the night tonight up at the hospital in a transition room with Kierson to see how she does with Kierson's needs. She is a bit apprehensive about the whole thing and would have preferred to have me up there as well but I am staying home to watch Emmie. If everything goes well overnight, Kierson will be home as planned.

Emmie has no idea of what is about to happen. It will be really interesting to see how she responds. She is mobile now and grabs for everything. We are going to have to watch her like a hawk when she gets around Kierson's oxygen tubing!

We ask that you would pray for a smooth transition home for Kierson as well as her continued growth and healing.

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.