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.

February 26th, 2010

Kierson is at 35 weeks now and continues to show steady improvement despite small ups and downs dealing with her oxygen requirement. She is now down to 5 L/min of oxygen with an FiO2 of just under 50%. She has been at this setting for awhile now as she is no longer on steroids that help simmer down inflammation in her lungs. We are grateful that her oxygen requirement has not increased past this.
She had her second eye exam today which showed no change in the retinopathy (which is good). She will continue to get these exams every 2 weeks. We made a sign to help Kierson's nurses and respiratory techs to remember to keep her oxygen settings as low as she will tolerate so that her retinopathy isn't made worse (due to unnecessarily high O2 settings).
Kierson continues to have heart rate drops and oxygen saturation drops as well. This is most likely due to her prematurity. Doesn't seem to be anything we can do about this other than hope her nurses aren't pre-occupied with one of Kierson's neighboring babies and is able to respond soon enough to prevent anything bad from happening.
Kierson is now feeding from a bottle as well as by tube feeds. She does great, however, yesterday she had about a 10 mL spit up without signs of aspiration. She did well today according to the latest report. Kierson is now up to about 3 1/2 pounds.
Overall, she is doing well and remains stable. Her doctors and nurses continue to prepare us for a little one that is going to be oxygen dependent for some unspecified amount of time when she comes home. We just hope that she continues to improve and is only on minimal amount of oxygen supplementation. We also hope for no tracheostomy.
We greatly appreciate your continued prayers for our little miracle baby. Her older sister is doing great and we are so grateful that she has not gotten sick yet. If momma gets sick, she can't see and hold Kierson.

February 17th, 2010

These past few days, Kierson has made steady improvement in her oxygen requirements. She is still on high-flow nasal cannula but this has been decreased to 5.5 L/min and an FiO2 of approx 28-30%. This is the best she has done, ... ever. This seemingly good news is tempered by the fact that this has been enabled by her being on steroids that act to reduce inflammation in her damaged little lungs. Her neonatologist is slowly weaning her off of steroids over the next number of days - as being on steroids blunts neurological development (so did being on the ventilator, but for different reasons). He said we can expect her oxygen requirement to go back up. We are hoping for the best.

Kierson's tube feeds have steadily continued to increase without any difficulties or complications. Today was a milestone as she was fed also by bottle for the first time. We are a little bitter about this, as we weren't notified that this was going to happen and WE wanted to be a part of this "first". Reportedly, she did well with the nipple feeds.

Deitre has begun making Kierson clothes to wear. Here is a picture of her Valentine's Day outfit. This has been a good project for Deitre as it makes her feel that she is able to do something for Kierson. This is one of Kierson's first smiles...if you look closely, she is getting mother's milk through her feeding tube.

Emmie continues to be her cheerful self. She is growing-in her bottom front teeth, babbling almost non-stop and smiling all the time. We have had to make the first adjustment to her crib, lowering it down six inches to prevent her from pulling herself up over the rail. She moves all over the crib and we find her sleeping in strange and what look like uncomfortable positions during her naps. She is a lot of fun. She likes to play with all her toys and especially likes you to play with her. Emmie can't wait for Kierson to come home!

February 12th, 2010

Kierson continues to require high flow oxygen at 7 liters/minute. Thankfully no significant desaturations. She does much better when she and her momma are doing Kangaroo Care (Deitre holds Kierson cuddled on her chest). Kierson becomes calm and her O2 requirements improve. Deitre wishes she could do this all day long (she is doing it up to 3 times/day).

Kierson is doing better with the tube feeds which are slowly being increased. Minimal aspirates. Having bowel movements with the help of glycerin. They have talked about having Kierson try to breast feed early next week. Deitre is a little nervous about this (she is a very, very private person).

Kierson had her first eye exam today. Deitre called me during my shift today and asked to meet me in the lobby outside the ED. She was crying as she told me the findings. The bad news is that she does have Retinopathy of Prematurity (ROP). The upside is that it is only Stage 2 (of 5), so it is not too severe and will be watched.

We continue to feel so helpless as our little girl is having such a struggle to survive with premature, damaged lungs. We are glad to have the most recent apneic spell behind us and very happy that she is extubated and taking breast milk again. It's just hard to take the news of ROP (this develops due to the high oxygen environment that she has been requiring to survive). I was really hoping that she would come through this without developing ROP. I think I may have been fooling myself.

Kierson's neonatologist continues to make mention of the real possibility of Kierson being trached (cutting small hole in her neck and placing a breathing tube into her trachea). We are very much hoping that we can avoid this. Kierson really needs to grow and develop new lung tissue. This is the only way that she will avoid being trached. Please pray for growth and development of new lung tissue as well as no new infections. Please continue to pray for both of us as we are worn thin.

February 10th, 2010

Kierson was extubated 2 days ago with much apprehension on our part. Her oxygen requirement was erratic over the weekend prior to the extubation and her CXR appeared to be moderately worse. Following the extubation, she was put immediately on CPAP (continuous positive airway pressure) to help her continue to ventilate (roll down your window at highway speeds, stick your head out the window allowing the wind up your nose, now breathe...this is like CPAP). She didn't tolerate this very well and they removed this after about 2 hours.

They then placed her on high-flow nasal cannula with 8 liters of oxygen/minute and an FiO2 of 80% (this is pretty high flow and very high percentage of oxygenation - we breathe 21% oxygen). This was concerning as she wasn't on such high settings prior to her apneic episode. She still continued to have major retractions and oxygen desaturations throughout the evening, night and following morning. Her neonatologist sat Deitre down (I was working in the ED) and discussed the possibility of re-intubation if Kierson continued to work so hard to breathe. She began to stabilize the following day and remained with less severe desaturations yesterday and today.
Her tube feeds continue to be increased and there is no sign of any bowel issues at this time. This is the best news so far. We need her to grow and put on weight as this is the only way her lung condition is going to improve. Her neonatologist is increasing her tube feeds very slowly as he wants to be certain Kierson continues to not have any bowel issues.
We continue to do what we can to pass the time. Deitre has been making preemie clothes for Kierson. They are pretty impressive. I have been working. Emmie is continuing to grow up, cutting some bottom teeth and doing lots of talking. She is not interested in crawling but loves to stand up (with some assistance). She continues to be a very good-natured little baby, never fussin' and goes to sleep when you put her down to bed (and wakes up giggling). She has been a real blessing in our lives.
Thanks for your continued prayers for Kierson and for us. Pictures to come soon.

February 7th, 2010

Kierson showed quite a bit of improvement by Friday the 5th but has really been unchanged over the weekend. We were hoping she would be ready for extubation but she is making too many tracheal secretions and her CXR looks more hazy the past two days that the neonatalogist felt it was better to keep her intubated. She is taking very small quantities of breast milk through her feeding tube and having intermittant residuals for unknown reasons (we had been up to 27 mL every 3 hours without residuals and now at only 3 mL every 3 hours with residuals). We are glad that her belly continues to feel soft and non-distended and that she is having small bowel movements. This suggests no intestinal issues.
We are still anxious for Kierson to be able to take more tube feeds so that she will put on weight and grow. She needs to develop new lung tissue to help her get past the current complications with her damaged premature lungs.
We continue to pray for patience and peace in these rough times. Please pray with us for Kierson's continued development and for resolution to her current condition. Today, Kierson turned 33 weeks gestational (8 weeks since birth).

February 3rd, 2010

Another long day up in the NICU. Kierson is certainly getting better with her breathing. She remains on the ventilator and according to her neonatologist will probably continue on this for the next few days. He doesn't want to rush anything. Although her CXR looks much improved (the pulmonary edema has cleared, but the damaged lungs remain unchanged), it was noted on the xray that some loops of small bowel appear suspicious for necrotizing enterocolitis (NEC).

Hearing this possibility this morning made the hair on the back of my neck stand up. This can get bad (as I remember from reading about it in medical school), causing dead bowel requiring surgical resection. There is a spectrum of NEC according to our neonatalogist. Mild to severe. If this is the beginning of NEC, we hope that this will only be a "mild" case of it since Kierson has been on antibiotics for four days now that would normally handle the most likely culprits. We must wait and see.

The good news is that her tummy remains soft, she continues to have bowel movements and is no longer having bilious gastric aspirates (essentially, no signs of obstruction or bowel dysfunction...). The downside is that her neonatologist says "no more tube feeds (ie, no more breast milk) for the next 7 days" to see what her bowels do (to see if this is NEC or not). She is back on TPN (total parenteral nutrition) through a PICC line (peripherally inserted central catheter) in her tiny little arm. This means that overall growth will probably slow down as compared to what she was doing on tube feeds with breast milk. This is NOT what we want. We need her to continue to grow and put on weight as the growth brings new lung tissue (this will help with the primary problem of having damaged premature lungs).

So, the unpleasant NICU journey continues. Just as we thought we were getting past the recent infection with Proteus and E. coli (they just reported the E. coli in the tracheal aspirate culture today) that caused her to stop breathing requiring re-intubation, we are faced with the possibility of significant morbidity from the NEC.

We continue to be encouraged by other couples who have similar micro-preemies in the NICU undergoing similar but different complications. We also are greatly encouraged by the kind words and prayers of our family and friends. We don't see the end in sight, yet. We are being prepared for a very long road (hasn't this been long enough?...) by our neonatalogist...of course, we hope he's wrong.

Please pray for Deitre as this has been an extremely stress filled day for her.

February 2nd, 2010

Kierson has made substantial progress over the past two days. She has stopped having major oxygen desaturations and heart rate drops. However, she continues to have minor desaturations that the nurses prevent from worsening by simply turning up her oxygen concentration. She is now getting nebulizer treatments every 3 hours that seem to be helping prevent bronchospasms that may have been the problem all along. Her tracheal aspirate culture came back yesterday showing signs of bacterial growth, specifically Proteus. She was initially put on 3 broadspectrum antibiotics (amikacin, vancomycin, zosyn) but now is down to 2 antibiotics (ampicillin and amikacin) since we now know what we're fighting. We're glad it's not the pseudomonas that is 'going around'.

Our neonatologist stated that if she continues to do well, he'll consider extubating Kierson tomorrow. Doesn't mean that it will happen tomorrow, but he is going to consider it. He doesn't want her intubated any longer than necessary as it causes blunting of her neurologic development. He thinks that she may need to go back on steroids to help her lungs get past the inflammation related to the recent infection but will evaluate this in a few days once we're past the infection. However, despite the benefits of the steroids helping her lungs out, their use comes with the trade-off of also causing blunting of her neurologic development.

It's been a miserable past 4 days. We are emotionally exhausted from the critical condition that Kierson has been in. We are very much relieved (...but still very tired...) that she is showing some stability. We know that we aren't out of the woods just yet.

We are very grateful to my fellow residents have taken my shifts in the ED so that I can be up in the NICU with Kierson and Deitre. Thank you all for your continued prayers for Kierson, her docs, nurses and respiratory therapists, and for us.

Here's a pic of Kierson's older sister, Emmerson, showing her recent interest in tools (...soft, chewable tools...). A girl after my own heart...

January 31st, 2010

Today, Deitre and I drove up to the hospital to see Kierson before I started my 9a-9p shift in the ED. Just as we got to the bedside, we noted her nurse and respiratory therapist at the bedside. I also noted they were having to manually ventilate Kierson. This definitely was NOT what we were expecting to see on arrival. I looked at the monitor to see her O2 sats down in the 20% range (normally 85-95% for her) and her heart rate in the 40s (normally 140-160s). She still had a pinkish hue so we knew that this had just started. Within seconds the 2 people became 6 as other nurses and her NNP came from other parts of the NICU to help out. We stood by, helpless (they don't allow family to get involved in resuscitations). Thankfully, Kierson recovered to normal saturations within several minutes and this time did not become cyanotic. An arterial line was placed for closer monitoring of her blood pressures and for serial arterial blood gasses. Her first blood gas looked totally normal, which was comforting. However, her neonatologist was still not certain as to the cause of the sudden drops.

A short while later, another drop took place. There doesn't seem to be any precipitating factors that we are aware of. Labs from yesterday continue to not support infection as the etiology. She has a negative influenza and respiratory syncytial virus tests. CXR today looks unchanged. Blood cultures and tracheal aspirate are still pending.

Kierson has remained stable for the past 3 hours with only small oxygen saturation drops down into the 70s which she recovers from on her own. Her lungs sound rhoncherous (make a gurgling sound with saliva in the back of your throat and try to make as low a pitch sound as possible....that's rhonchi - due to secretions in the airways as air moves past). My suspicion is she aspirated stomach juices but I don't have any objective support of this right now. She did have approx 1 mL of bilious stomach aspirate from her nasogastric tube early this morning. This is somewhat new. However, ruling out infection is the most important thing currently.

Thank you for your continued prayers and encouragement.

January 30th, 2010

Since our last post, Kierson has been having small ups and downs but for the most part has been doing well. She has put on almost 1 full pound and has grown 4 inches in length. She is looking so different to us and despite her breathing difficulties, seems to be making her doctors proud.

I was working in the ED tonight when I got a call from my wife. I was in the middle of removing some staples from the scalp of a kiddo. One of the staples must have gone right through a little artery that, upon removal of the staple, shot a tiny pulsatile stream of blood from the top of his head. Holding pressure on the bleeder, I answered my phone. My wife's voice was shaky and I could tell that she had been crying. She was out with a friend spending a well-deserved night off from seeing Kierson three times a day and pumping every 3 hours. She told me that our neonatologist had just called. He told her that Kierson had stopped breathing and that they had to intubate her and were having trouble getting her oxygen saturations back up while bagging her. I asked my nurse to continue to hold pressure on my patient's head as I calmly walked out of the exam room and made my up to the NICU.

As I arrived at Kierson's bedside, there were 7 folks huddled around working on getting her stabilized. Her NNP brought me up to date. She was just now returning to normal oxygen saturations. I was told that she had dropped down to the 20-30% oxygen saturations and that her heart rate was in the 40s. They described her as mottled and cyanotic but now she had her normal pinkish hue again. I noted that she was moving all 4 extremities and was opening her eyes. She was also fighting the endotracheal tube. A plethora of labs and a CXR were ordered.

Her initial lab work didn't seem to indicate infection but more results are needed for confirmation. Her CXR looked slightly more opacified bilat but could be due to over-exposure (she already has terrible looking lungs which makes it difficult to note subtle changes...for me, probably not the radiologist).

Over the next several hours, Kierson had some more saturation drops immediately followed by heart rate drops. After suctioning she would slowly recover. She appeared to finally stabilize and we decided to go home for some rest as it was midnight and I had to work in the morning.

Please continue to pray for Kierson's damaged lungs that God would bring her complete healing and protect her from infection. We also ask for your prayers for our doctors and nurses that God would give them wisdom and insight into what processes are taking place so that early intervention can be instituted (they are a smart bunch, don't get me wrong...). Please pray for us as we are worn thin with a 7 month old precious little girl at home that needs our attention and love and a very sick preemie (now at 32 weeks) up at the hospital that's struggling to breathe on her own and now has failed (for unknown reasons).

January 18th 2010

Kierson's neonatologist told us today that her CXR (chest xray) is looking worse. Over the past 2 days, there appears to be a worsening pulmonary edema but it could also be a pneumonia setting in. He started her on some diuretics as well as a couple of antibiotics to cover both possibilities. Her oxygen requirement remains around 60% (you and I breathe 21% oxygen). Otherwise, she is doing pretty good.

Because of Kierson's overall condition, Deitre hasn't been able to have any 'Kangaroo Care' time (this is having Kierson on her chest) in the past several days. This has been hard on Deitre as she loves this time with Kierson. I'm sure Kierson misses it, too.

I've included some xray photos showing Kierson's progression during her NICU stay. Starting top to bottom: 2 hours after birth, Christmas day, January 4th (doing much better), January 16th (doing worse).

Thank you for your continued prayers for Kierson and for us. We are so grateful for everyone who has provided warm meals, gift cards to restaraunts, offers to watch Emmerson (we may need to take you up on your offers soon) so that we can go up and visit her little sister, etc.

A very special thank you to the awesome folks up at King's Daughters ED (you know who you are...) for the special collection y'all made to help out with Kierson. I was very moved by y'all's thoughtfulness and humbled by your generosity. It's a real pleasure working over there with you all.

January 16th, 2010

Kierson graduated from the critical care area of the NICU 4 days ago. She was showing steady improvement with her lungs and tolerating steady increases in her tube feedings. However, the very first day she was out in the general area of the NICU, her oxygen requirement began to slowly increase. She had been on 38% supplemental oxygen for about 4-5 days prior to the move, but now she was requiring 65%. This continues now, four days later. Her neonatologist states that this just happens sometimes. He states her chest xrays are unchanged (they still look bad).

Dietre continues to be able to go up multiple times a day to the NICU to visit Kierson. Some times she gets to hold her but other times Kierson is too cold to be taken out of her isolet. This has been real hard on Deitre who wants the best for Kierson, but really wants to continue bond with her.

Now that I am back in the ED this month, I have been asked to not come into the NICU unless I go home first, bathe and change clothes. Naturally, after I finally get home, I'm too tired to go back up to the hospital, so I try to see her before I start in the mornings.

Kierson continues to have intermittant heart rate drops. Overnight last night, she had 5 episodes. Today, she had four while Deitre was holding her. Two of the four drops required stimulation for her to rebound. These are naturally concerning for us to hear about and unsettling to witness. The CXR today showed pulmonary edema (extra fluid in the lungs). They are going to start her on some medications to help get this fluid out. We are hoping the medicines do the trick.

We sincerely thank you for your continued prayers and encouraging words.

Kierson's first 'spa visit'

January 11th, 2010

Kierson is at 29 weeks gestational age (yesterday).

Deitre showed up to visit Kierson today and had the pleasant surprise of getting to see her first bath. It's so hard to believe that just 6 days ago she was on the ventilator and not doing well. But now, she is completely breathing on her own. She still requires supplemental oxygen, though.

This is Kierson right after her first bath. Her hair is really becoming much lighter in color. She weighs in at 2 lbs now and not much longer than a brand new pencil.

Kierson's older sister, Emmerson, continues to do so many firsts (for those who do not know, we adopted Emmerson back in June, 2009. We had the privilege of being in the delivery room at her birth and got to go home with her a few days later. Four weeks later, we found out we were pregnant. This was only 6 weeks after our 3rd miscarriage and several unsuccessful rounds of IVF). Back to Emmie....

Emmie is growing so fast, 'talking' all the time and is such a smiler! She is very active and extremely contented little one, hardly ever fussy (which is such a blessing). She is just over 7 months old now and going to be a great older sister to Kierson. Emmerson got kinda spoiled this Christmas as she is the first grand-child for Deitre's folks.

January 7th, 2010

Deitre arrived today to check on Kierson and to her surprise, found that she had just been extubated (her breathing tube had been removed). She was put on a special breathing apparatus called CPAP using nostril jets. She was breathing fast (around 80 times/minute) but was still maintaining good oxygenation. Her blood gasses have been decent all day. Her CXR (chest xray), on the other hand, still looks terrible but at least no signs of pneumonia.



We visited her again this evening to find she was no longer on CPAP but just high flow nasal cannula. She is still breathing very fast but seems to be maintaining great oxygen saturations and her blood gas this evening looked decent. There is discussion about the possibility of re-intubating her if her respiratory rate doesn't settle down a little.



Tonight was the first time we got to hold her close. Usually by this time, they encourage skin to skin contact called "Kangaroo Care" but Kierson has been too critical to remove from her isolet. Now that she has become much more stable and extubated, they encouraged us to try it tonight. It brought tears to our eyes. She is so tiny and fragile but yet fighting to keep on breathing. Deitre couldn't help but laugh as Kierson drooled on her chest.

January 4th, 2010

Thanks Kenny for setting this up! We are technologically incompetent (well, at least I am; Deitre on the other hand, surprises me at times...).

Kierson is now at 28 weeks and still fightin' (her nurses all comment on what a little fighter she is). Born at 25 weeks, weighing in at 1lb 11oz, she is now a full 2 lbs!

She initially did quite well in the NICU for the first 3-4 days life on the ventilator but then developed pneumonia. This infection proved to be resistant to the first 2 broad-spectrum antibiotics and a third broad-spectrum antibiotic was added (initially ampicillin and gentimicin, then changed to ampicillin and zosyn and now vancomycin added).

Unfortunately, simultaneously with the pneumonia, Kierson developed PIE (persistant interstitial emphysema) which is often seen in extreme pre-emies as their lungs get damaged by the pressures of the ventilator (called barotrauma, there's more to the story on that but trying to keep it short). Essentially, because of the PIE, there is very poor exchange of carbon dioxide for oxygen. This results in an otherwise perfect little neonate that ends up retaining lots of CO2 and gets little O2 into her bloodstream because of immature and now damaged little lungs.

The neonatologists have tried 3 different types of ventilators trying to correct this life-threatening imbalance. With each change in type of ventilator, there appeared to be improvement but this was only of short duration. On December 26th, Kierson's doc came to us and told us she didn't think Kierson was going to make it as her blood gasses were steadily worsening. Never have we ever felt so helpless. Some tears were shed and some close friends called.

The following day, Kierson amazingly began to show a reversal in her abnormal blood gasses, they were small changes but changes in the right direction. Over the next 3-4 days, her twice a day chest xrays also showed signs of resolving PIE and pneumonia. On Dec 31st, however, the PIE looked much worse on chest xray and Kierson was changed to a different ventilator in anticipation of her condition deteriorating. Now that the pneumonia appeared resolved, she was also started on steroids to help simmer down inflammation in her lungs and promote the production of surfactant. She was given some surfactant (naturally made by certain lung cells, this is a necessity for proper lung function) down her endotracheal tube (her breathing tube) which did show immediate benefit.

As far as her blood gasses go, there has been marked improvement since Dec 31st. However, a new problem has discovered. Kierson has developed intermittant episodes of bradycardia (slowing of the heart). She will go from cruising along in the 150s and suddenly drop down to the 50-60s. She hangs out here for what seems an eternity and then rebounds back to the 160s. Sometimes, however, she requires the nurse to stimulate her to do so. Other times, she rebounds on her own. Because of this, her doctor has put her on one-to-one nursing care so that these episodes don't get missed, preventing Kierson going into cardiac failure.

Thank you for your continued prayers for Kierson, her nurses and doctors, as well as for us. This has been a very difficult time for us in light of having a 6 month old (older) sister at home that is doing lots of "firsts" and needs us to be around to "oooh" and "ahhh".

Paul