Lunch time!

Phoenix's First Bath!

Late last night (just after 2 am on Monday morning) Phoenix had his first submerged bath! Prior to this, he just had sponge baths. He will now get a "real bath" every Sunday, Tuesday, and Thursday, here in the NICU. He has his leads (to monitor heart rate, respiratory rate, and oxygen saturation), his gavage (feeding) tube, and his nasal cannula (for oxygen) all still attached to him, but none of these things are attached to anything else while he is bathing. Phoenix was measured and weighed again and he is now 18" long and 4 lbs. 12.5 oz. (2168 g). Phoenix is up to 42 ml of milk, every 3 hours now. This is based on his current weight, so it will increase as his weight increases. Needless to say, he has not been able to actually "eat" (bottle feed) this larger amount. But, his doctor says he has to be able to not only tolerate the feeds, but do it himself (bottle feed or breast feed) the 42 ml every 3 hours BEFORE he will be allowed to go home. Right now, he will only eat between 2 ml - 20 ml before he has to be gavaged (tube fed) depending on how tired or hungry he is. This, of course, is worrying his mommies who are trying to figure out just WHEN he might be able to come home with us! We're still trying to work out our routine to spend time with Phoenix at the Bend NICU, while Steph is back to work and Lisa tries to keep up with the back log of laundry and housework that still needs to get taken care of (in Redmond). This now includes yard work, since Spring is here. Phoenix seems to be a night owl like his Mor (Lisa) which makes it interesting to schedule bonding time with him, while still being available throughout the day for his feedings and other "hands on" time (burping, diaper changes, temperature taking, and occasional kangaroo care). Please keep Phoenix in your thoughts and prayers that he will learn to do all of these things (eating, digesting, breathing, and maintaining his temperature, heart rate, and oxygen saturation) that we take for granted, since our bodies do it automatically.... so that he can "graduate" from the NICU and we can take him home!

Resting Back in the Bend NICU

Back in Bend!

On Thursday, April 23rd, Phoenix and Lisa flew back to Bend, thanks to the generosity of Doernbecher's Children's Hospital who covered the cost, since our insurance did not. This was very exciting, although, Lisa has informed Steph that if there is ever another life-flight situation, Steph will be Phoenix's flying companion... way too much air turbulence for Lisa! Phoenix is back at the Bend NICU, in an open bed, but in his own room (so he has a quiet place to grow)! He has a nasal cannula with a low flow of oxygen due to his need to adjust from the Portland area (near sea level) to Bend (high desert) with a higher altitude, making breathing just a bit more difficult for preemies. Phoenix will be at "full feeds" (42 ml of breast milk, every 3 hours) by Sunday (4/26) afternoon. He has been getting bottle fed every other feeding time... taking the others by gavage (feeding tube, through his nose and in to his stomach). On Saturday night, he actually successfully (first time try) breast fed... like he knew what he was doing! But, to make sure he's getting the right amount, we will continue to bottle feed until he is gaining weight (20+ grams per day). As long as he takes his feedings well, for the next day or so, he will get his PICC line removed from his leg. This was allowing him to get IV supplements until he got to full feeds. He is still being closely monitored for NEC and so far has shown no symptoms. Phoenix has already had 2 xrays since being back in Bend. One showed that his bowels still look good and the other showed he still has signs of lung disease. However, a second film (xray) has shown improvement in his lungs since being on a higher dose of oxygen, since being back. Although we appreciated being able to stay at the Ronald McDonald House in Portland, Phoenix's moms are quite happy to be back home -- to be able to sleep in our own bed and shower in our own bathroom! And, of course our "furry babies" (Nacho, Lucky, Sable, Princess, Pookie, and Speedy) are all very happy we are home, too! Thankfully, we had great help from Ellen who came to pet-sit while we were away. This included lots of clean up, feeding / watering, dog walking, and dog holding!

Phoenix's Stats

Phoenix's Stats: At Birth: 4 lbs. 3 oz. and 17 3/4" Now... after initially losing weight (3 lbs. 13 oz. at day 5) and also after fasting one week: 4 lbs. 11.8 oz. and 18 1/8" He is weighed every night and measured (head circumference and head to feet length) weekly on Sundays. The doctors and nurses say when he gets to his "full feeds" by the end of the week, he will start to gain weight and hopefully grow taller, too! He is not considered "full term" until May 27th (5 more weeks)... when he will be compared to other babies' birth weight and length.

Learning to eat, while still breathing...

Phoenix is learning to eat (suck and swallow breast milk) while trying to remember to stop to breathe! A normal thing for a full term baby, but something that doesn't come naturally to a preemie! He does have a gavage tube that goes through his nose and down to his belly for when he can't (or won't) make any attempt to take the milk through a bottle nipple. Phoenix started very slowly (3 milliliters, every 3 hours, the first day) and progressed to 5 ml the second day. Yesterday he was at 8 ml, every 3 hours. Today (Tuesday) he is up to 13 ml every 3 hours. Beginning at 11 pm he will increase his intake by 5 ml every 12 hours. He will be considered at "full feed" status when he gets to 40+ ml per feeding. He should be at that point in 3 days (Friday at 11 am, 4/24), if all goes well. Phoenix has had good bowel movements (no blood... YAY!) and good bowel tones with a soft belly. These are all good signs that everything is working correctly and that the triple antibiotics he's been on since 4/12 have been working to alleviate the NEC in his bowels. He was back out of his isolette for a about a day, but last night had to be put back in, due to the growing population of babies (and all of their visitors and medical staff) in the area we are now in. It just gets too loud (people talking, babies crying, alarms, bumping / banging of equipment / furniture, etc.) for Phoenix to relax, rest, and breathe at a steady rate. He is still off of the nasal cannula (with oxygen) and is just breathing room air. Tomorrow (Wednesday) is Phoenix's last day of his 10 day cycle of the triple antibiotics. His moms will be happy, as he will smell like a sweet baby again (instead of a medicine baby)! One or more of the antibiotics makes his sweat and urine have a horrible smell! Of course, he will always be our "sweet baby" but now he will smell like one, too! Phoenix is finally back on the list for a return flight to Bend, if there are any flights to Portland from Bend. When he goes back, he will return to the Bend NICU to complete his care until he is ready to go home. This won't be until his breathing and eating has stabilized and he can manage without all of the medical monitoring (as a full term baby would). Please keep Phoenix in your thoughts and prayers so that we can get him on a flight back to Bend and that he continues to progress without any more medical complications! Thank you!

THANK YOU FOR ALL OF YOUR PRAYERS!! I almost forgot to add this update... Phoenix's echo cardiogram to check his PDA yesterday came out great! Thanks to the daily doses of liquid ibuprofen, the valve closes completely now, so all the blood that was going to his lungs, is now dispersed throughout the rest of his body (including to his bowels). His heart is now in good working order! On to the digestive tract!

There was another baby from Bend that had to be flown to Doernbecher's today and we really thought we were going to get to hop on the return flight back to Bend (with the isolette). However, our doctors and nurses changed their mind and told us that we had to wait until, at least, Monday to see how Phoenix's feedings were going. This was a huge let down, because the flights have been very sporadic and a bit few and far between, recently. The Bend NICU flight nurse came to visit Phoenix for a minute before returning back to Bend. Steph shared her concern and requested that they make sure that Phoenix is added to the back-flight list, starting Monday, so that we can get him back to the Bend NICU, as soon as possible. We still want you to keep Phoenix in your thoughts and prayers that these feedings (with breast milk, instead of formula, this time) that we will start this weekend, will go through him without any medical issues with his digestive system. Thanks!

LOOK MA(s)... no tubes connected to my face! I got my nasal cannula removed today! And, I seem to be breathing on my own fairly well. Tomorrow I will have to have a gavage feeding tube taped back onto my face. But, for one day, I don't have anything to try to pull off of my face. I still have plenty of other wires and probes on the rest of my body though. I like to give the nurses a hard time and get all tangled up in the wires! I could only keep one eye open while my moms keep flashing that silly camera all day! All I can see are spots!

Oh Mor, that's ENOUGH with all the flash photography, don't you think? I'm getting a head ache with all the bright lights!

I LOVE MY BINKY... especially since my doctors and nurses won't let me eat! But Mom told me, today, that I will get to start to eat again (through a tube) tomorrow (Saturday) so I'm really quite excited! In the meantime, I've been practicing my sucking skills with this binky.

New Update on Phoenix

UPDATE on Phoenix Sebastian (still at Doernbecher's Children's Hospital in Portland). Not only did his Mormor and Morfar (grandma and grandpa, Peppe and Dave) and Aunt Anna Maria and her fiance Dimitri stop in Portland on their way back to Seattle to help get Phoenix situated at Doernbecher's, while his moms (Lisa and Steph) tried to catch up with him (driving to Portland, while Phoenix flew)... but, the next day, his Uncle Per stopped by to see and hold his new (first) nephew. The scare of bowel surgery quickly subsided and after many fretful hours in a strange and different setting, we were pleased to learn that Phoenix would first be treated medically (with antibiotics and anti-inflamatories, as opposed to surgery) for his NEC (necrotizing enterocolitis). Then, we had a new scare... a "whopping heart murmur" was found during an exam. This was found to be PDA (Patent ductus artriosus). This may have caused or exacerbated his NEC. We are currently attempting to treat this condition with medication (liquid ibuprofin!) before surgery will be considered. He has had many xrays and echocardiograms, not to mention daily blood tests. Poor little guy has been through a lot in his short life, already. He has had his gavage (feeding tube) replaced with a stomach suction tube (that was just removed today). He has had multiple IV's in his hands and feet replaced with a picc line (peripherally inserted central catheter, from his leg to his chest). And, just today had it pulled 2.5 cm to relocate it. He also had his velcro stickers that held his "cool shades" for his phototherapy (for his jaundice) removed. He does still have his nasal cannula with a moderate amount of oxygen flowing. And, all of the wires / probes to monitor his respiratory rate, heart rate, and pulse. He's quite the master at pulling tubes and wires from his body. And he is a regular Houdini at getting his hands / arms loose from any swaddling job that the nurses try to use to contain him. Although in this setting we can not "kangaroo care" hold Phoenix as we did in the Bend NICU, we do get to hold him several times a day. We talk to him and read to him and try to comfort him the best that we can. It is now a wait and see situation, to see if he will need surgery on his heart and / or his bowels. Our hope and prayer is neither. We will find out about his heart on Thursday (4/16) or Friday (4/17). And, we will find out about his bowels when they begin feeding again (after his fasting for a week, IV fluids / lipids / protiens, only) to see if his NEC has healed and if he can digest properly, on Friday (4/17) or Saturday (4/18). If all is well, he will get to go back to the Bend NICU for the remainder of his NICU needs. Because the OHSU / Doernbecher NICU has just filled up with new, critical care preemies, Phoenix has actually been moved to where the "growers and feeders" are cared for, just this evening, due to his now, somewhat "stable" status. We are taking this as "good news". Please keep Phoenix in your thoughts and prayers.

PLEASE SAY A PRAYER FOR PHOENIX... as he is air lifted to Doernbecher's Children's Hospital in Portland today (Easter Sunday) due to just being diagnosed with necrotizing enterocolitis. Check out wikipedia to find out more (http://en.wikipedia.org/wiki/Necrotizing_enterocolitis). Steph and I (Lisa) are on our way up to Portland, now (driving, as they would not let me ride in the helicopter due to me just having had a c-section). We will keep this site updated as we can. This was all a surprise as we all thought he was progressing wonderfully and looks quite healthy (for his being a preemie, etc.). He was even visited this Easter weekend by his wonderful Aunt Anna Maria and his proud Grandma and Grandpa (Mormor and Morfar, Peppe and Dave).

Our Little Trooper

After just 24 hours, Phoenix has been fighting like a real trooper trying to overcome both Respitory Distress Syndrome and jaundice. Some of these photos have a blue tone to them, because they were taken in the blue "grow light" in his NICU room, to alleviate the jaundice. And, note his "Joe Cool sunglasses" to protect his eyes from the bright blue light!

Hey, when can we take this stuff OFF?

Phoenix Sebastian's BIRTHDAY

HAPPY BIRTHDAY TO PHOENIX SEBASTIAN

Please join us in welcoming PHOENIX SEBASTIAN BENNEFIELD to this incredible journey, we call LIFE! Phoenix was born, by c-section, on Monday, April 6th at 3:39 pm in Bend, OR. Weight: 4 lbs. 3 oz. Length: 17 3/4 " Hair: Wavy, light brown, somewhat sparse Eyes: Dark blue, as of now Most of these first photos show Phoenix with feeding / breathing support systems, due to his early delivery (32 weeks and 5 days ... out of a possible 40 weeks). Please do not be alarmed. He is in the NICU getting excellent 24 hour care. We hope for the CPAP (breathing tubes) to be removed within the next few days.