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