It was the best of times, it was the worst of times

Didn't Charles Dickens write a book that started that way? Anyway, that is the perfect way to describe what's going on in the Banner Desert neonatal intensive care unit right now. We've noticed such individual, distinct personalities in Connor and Mckenna, and when the twins are doing well, it's the best of times. When Mckenna struggles badly, it's pretty much the opposite. Our little Con-man is growing quite a bit, currently at 3 pounds 4 ounces--more than double his birth weight. Mckenna is at 2 pounds 14 ounces, exactly twice her birth weight.

Connor is a fast-progressing little man who demands attention when it's too noisy outside his incubator or when he's frustrated. That would be pretty much all the time unless he's sleeping because of his lack of appreciation for oxygen machines, wires, thermometers, and vital sign probes-- he wants them off his body..immediately. Earlier this week I was kangaroo caring with Mckenna and I saw his nurse exclaim "Connor!" and rush to his cube. His oxygen and heart rate had dropped and his monitors were beeping because he had removed the nose oxygen apparatus and put it in his mouth, where it was giving his tonsils some unnecessary air conditioning. After the nurse restored some order, his O2 and heart rate levels returned to normal. Then she called some other nurses over and they all had a good laugh, along with us. He also loves being held and loves his mommy so much that she can calm him down immediately whenever he starts waiving his arms in frustration. He melts when she does kangaroo care with him, and loves it when grandma Burns, who is visiting for the week, holds him as well. He is doing great so far.

Mckenna has had another rough week, maybe her worst since the pneumonia. She has "crashed" almost every day this week-- meaning she goes to 100% oxygen support on the ventilator. It's extremely frustrating, especially now because she is on some controversial steroids that are supposed to be helping. This particular steroid, Decadron, is controversial because it can affect the development of a child, but the doctors all agreed that it would be necessary to take in order to help clear up her lungs. Yesterday, the steroids seemed to be working, because she was down to 30% oxygen level on the ventilator, and we were extremely hopeful. Her lungs regressed throughout the day, and she became increasingly agitated. She was put on two different sedatives in order to calm her down. She's obviously in pain or agitated somehow, because normally Verced works fine to calm her down, (even after her heart operation). When Verced didn't work, they added phenobarbital to her system which is used mainly to inhibit seizures. She reached 100% support again by 9pm last night, but still wasn't getting enough oxygen circulation through her body. She turned the sickly white/gray color that is always present when her oxygen saturation is poor. After an x-ray around midnight, they noticed that the right side of her lungs had collapsed, and oxygen was only going through the left side. They adjusted the tube slightly to allow more air passage through the left side while trying to re-inflate the right side. This morning they are doing some blood cultures and aspirate (sp?) checks for infection, and she got another blood transfusion, her fourth so far. They started her on antibiotics again as they wait for the results of the blood tests. We really don't know know how long she'll struggle like this, but have found some peace in the scripture Matt 11:30 when Christ says "Take my yoke upon you.. for my yoke is easy, and my burden is light." Our prayers used to mostly involve pleadings with God that she would live and get better, but we're not so sure that it's the Lord's will at this point. We appreciate all the prayers and support, but also ask that prayers and requests for Mckenna will involve the Lord's will for her. We are hopeful that she'll turn things around and improve, and have good reason to believe that they will, but we believe that sometimes with God's infinite love and wisdom, healing is not part of the plan and death can be a blessing. We also know that we'll see her again if this is the case. We love our kids dearly and are confident that things will get better, and are still hopeful at this point. They are, after all, only seven weeks old and supposed to be in mommy's tummy for another seven weeks. Thanks again for all your prayers and support.

Crazy kids

It's funny to see our little babies develop personalities.. Connor has proven and continues to prove that no tube is too big to rip out.. he has successfully performed surgery on himself by ripping a ventilator tube out of his mouth (all the way from down in his chest) c-paps off his face, and temperature probes off his body. When I saw his first cpap machine, I new it didn't stand a chance and figured he'd have it off pretty soon. Sure enought, he's now on his second version of cpap, because the first he kept pulling off his face. He also really dislikes it when we change his diaper, wipe/suction his mouth, check his temperature, or really anything except for kangaroo care or leaving him in his little incubator with the covers down to block the light.. He loved it today when Karisa held him and sobbed audibly when we put him back in the incubator. It really was the first time that we've heard him cry, other than a wheezing sound. it's still obviously a premature-lung cry, but at least it sounded like a baby. A nurse standing about 6-7 feet away said she could hear him, and in the past we've had to put our heads very close to him to hear any sound at all. He is at 2 pounds 12 ounces tonight, and has gained a lot of weight recently, almost doubling his birth weight of 1 pound 10 ounces. Yesterday for about an hour he successfully breathed room air with no help from a ventilator, cpap, or anything! His nicknames are "Con-man, and "Dong" (for ding and dong--Mckenna is "ding")

Mckenna has lethargic movements, and constantly holds her hands out, almost like she's showing us how open and wide she can open her hands. She loves to put her hands over her head, on her head, or covering her eyes. It's almost like she is telling us that she's had enough and covers her head for comfort!! She opens her eyes really wide when she's feeling well, and she has big blue eyes. The eyes can't focus very well yet according to the doctors, but they certainly are wide and we can usually tell when she's feeling OK because the eyes get wide and she just looks up at us when we're doing her "cares" (every four hours the nurses have a schedule where they change diapers, etc). She doesn't cry as much as Connor, but she's dealt with a lot more with her surgery, lung disease and pneumonia. A diaper change is no big deal at all for her, contrary to her twin brother. She is still very high on oxygen support, on an aggressive ventilator, and we are still pretty worried about her. She really hasn't improved on the oxygen, and for some reason really seems to be getting worse instead of better. Her nicknames are "Peanut" and "Ding" and some of the nurses call her "little miss Prissy," since she has such funny hand movements. She weighs 2 pounds 10 ounces at the moment.

Eye exams and weight check

The babies both had their first eye exam today, and so far so good! They now both weigh a little over 2.5 pounds and are a month and a half old! They've both nearly doubled their birth weight at this point and probably will within the next 1-2 weeks. Their original due date was supposed to be March 23, so the little rascals have done pretty well considering they should still be in the tummy for two more months. Their eye exams both went pretty well. With premies, doctors worry about ROP, which is a problem with blood vessels growing in the place where the retina should form. In a premie, the retina is still growing at birth, and starts from the back of the eye and moves to the front until it forms a complete circle around the center of the eye. The problem is that sometimes blood vessels formed by the presence of oxygen block the retina from finishing it's growth, which causes permanent blindness. If caught early enough, the doctors laser-surgery the blood vessels to help the retina form, which helps a baby to see. Right now, Connor and Mckenna are both free of ROP, or the presence of those blood vessels, but the retina is only approximately 30% developed in Mckenna and 40% in Connor. Basically, it's so far, so good.. the blood vessels can still develop because the doctor said it's really too early to tell much, but he did tell us that he didn't see any problems yet. The problem can occur until the retina is 100% developed, so he plans to come and check again in two weeks. We're excited that so far we have cleared the first eye hurdle, and hope that the next exams will produce the same results. Mckenna is doing a little better today, and she's being weaned down on her oxygen needs. She's back to about 54% right now, which is high but much better than she's been the last two days. She is a little bit bloated in the abdominal area, which may have been one of the reasons that she had her little crash two days ago. Connor has remained around 25% O2, which is great, and for a few minutes today the nurse took him off the cpap completely and he was breathing perfectly with no help from a ventilator or anything, which is extremely encouraging to see! He has a little bit of a toaster head from laying on his right and left side, because he hates lying on his back. We're forcing him to try the back occasionally though because we don't want him going through life with an abnormally thin head, which sometimes can happen to nicu babies. Anyway, that's about all the news today... thanks for the prayers!!

Roller Coaster ride with Mckenna

They say that good days are often followed by bad days in the NICU, and that things can change at any time without notice, and that's exactly what Mckenna decided to do yesterday. About 5pm yesterday, they were bringing her down for a kangaroo care, where they put the baby on mom or dad's chest for some skin to skin contact. When they brought her to me, for some reason she started to "de-sat" (oxygen saturation), which means her oxygen level in her body is reducing. When this happens, usually they just turn up the ventilator to fix it, and the kids bounce back with their oxygen levels. Our twins are certainly no strangers to the de-sat, because that's basically all they've done since coming to the NICU-- (some nurses have even nicknamed them "ding" and "dong" because monitors always beep when the kids de-sat, and it happens so often with them).. Anyway, yesterday Mckenna was de-sating when they put her on my chest, and the nurse couldn't turn up the ventilator high enough to keep her saturation level around 85-95% which is where it's supposed to be. The vent was turned up from 40 to 50, then 60, 70, 80-- all in a span of about 30 minutes. We had to put her back in the incubator because something was definitely wrong.. she still continued to de-sat, so I called Karisa who was home cooking dinner and gave her the not too unfamiliar news that "Mckenna is struggling." She rushed over, and unfortunately Mckenna still continued to drop while in her incubator. The vent was turned up to 90 and then full blast, 100. It still wasn't as bad as last time, which ironically happened exactly two weeks ago, when she was sick with pneumonia. Yesterday the nurses were able to keep her sat level in the 85-95 o2 range with the ventilator on full blast. (Last time she was around 30-50 sat level on 100% O2 for a few hours. She went limp, and she had no color to her skin at the time. Two high risk doctors, a heart specialist and a respiratory specialist, two nurses and a social worker were all on the scene then, and we didn't know if she would make it). Yesterday was different because she was moving around a little bit, and still had her color, so although we were worried, we knew that she had made it through worse than this. There were only nurses on the scene yesterday instead of half a dozen doctors and specialists like last time. She was only at 100% support for about 20-30 minutes yesterday, as opposed to several hours last time. Anyhow, they brought in a new ventilator and it took her down from 100% support to 60-70%. Today she remains still higher than usual on the ventilator but at least she's "sat-ing" in the 80's and 90's like she should. She may have an infection, but they think it's just her lung disease and the only thing that can really fix it is for her to grow. She is tolerating her feeds OK, and we're so anxious for her to put on weight and for this problem to correct itself because it's causing us mucho stress. Anyway, the good news is that Con-man is doing just fine on the cpap machine, and may not ever need to go back to the ventilator if he keeps it up. We have heard him cry for the first time since coming off the ventilator because the vent tube prevents throat noise. His cry sounds more like a wheezing sound than a cry, because his voice isn't very well developed, but I'm sure that will come with time as well

Both babies are 2.5 pounds!

It's been a pretty good few days for the little guys, thank goodness! Both babies now weigh in at a whopping 2.5 pounds, with Connor at 2 pounds 9 ounces, and Mckenna at 2 pounds 7 ounces. The doctors are pleased that they've been gaining some weight over the last couple weeks, and expect it to continue-- Mckenna is feeling much better, recovering from her pneumonia and is completely off the antibiotics. She opens her eyes quite a bit more often now, and has big blue eyes. It's funny to see her with her eyes open, because premies don't control their eyes very well, and the eyeballs sort of roll around as she tries to focus on things. Connor is very similar, but prefers to keep his eyes closed more often and they aren't as big as hers are when they are open. Mckenna is still on the ventilator right now, and it's still at 50 on the 02 support (still pretty high), but the doctors expect that it will take some time for her lung disease to cure itself, and have warned us about not looking for a quick lung recovery for her. Her kidneys and other organs look good at this point, and she passed her last head ultrasound with flying colors, putting to rest the concern of her slight brain hemorrhage that she had at birth. Connor was a naughty boy a few nights ago and yanked his ventilator tube all the way out of his body!! The nurses frantically put it back in, and I guess it was a struggle to get it in (fortunately we weren't here to witness the trouble, since it was in the middle of the night), but they were successful eventually. He had the ventilator tube in for a few more days, but today the doctors thought they would try the Cpap machine another time to see if it's successful. It's been about 8 hours, and so far he's been pretty good. He's had a few "apnic spells", where he doesn't breathe very well, but he's still hanging with it for now. Last time he lasted one day and then had to go back to the ventilator tube. The reason the doctors want the kids on the Cpap as soon as possible (a helmet-like looking breathing apparatus that has a small plastic tube entering each nostril--there's a picture of the cpap that was posted about a week ago)is because the ventilator tube can cause scar tissue in the esophagus and is a possible breeding ground for infection. Hopefully Connor continues to do fine, and can keep the cpap machine on. It's tougher for a premie to use the cpap because a baby must breathe mostly on its own, with a little support in the nostrils, as opposed to the ventilator which blows air right into the baby's chest. Anyway, the Con-man has done pretty well so far. On Friday the kids will have their eye exams, so we have our fingers crossed for that. We are a bit anxious, because a lot of O2 is dangerous for a baby's sight, and both kids, especially Mckenna, has had a lot of oxygen. We're just putting it in the Lord's hands and praying that his will for the kids will be accomplished. We know that it's been a miracle so far that he's kept our little babies alive (especially our little miracle girl), and have no reason to doubt that our blessings will continue! Thanks for all your prayers and support!

Connor flexing the "guns"

That a way, little man! He's getting the guns ready to impress his sister when they come home.

Do we look like twins?

Hey Connor, I'm practicing my dance moves, check this out!! My chest hurts, but I can still move my arms!!

Tiny feet!!

They're doing much better!

After a huge scare exactly one week ago, both kids are doing much better! Mckenna is off the "jet" ventilator and nitric oxide, and is on the normal ventilator again. Our little sweet girl developed pneumonia exactly one week ago, but thanks to antibiotics, she is doing much better again. She scared mom and dad quite a bit when she turned white and stopped moving from a lack of oxygen last week. Her oxygen was extremely low because the bacteria in her chest blocked passage to key parts of her body. We believe that it's a blessing from God for her to stay on this earth when it looked really grim for a few hours. Both kids are back on the feeds (Connor never stopped) and weigh over two pounds right now!!

Mckenna holding mom's hand

This is how the babies like to be "contained"

They do best with a hand on the head and the other hand on the legs and feet

Mckenna Ruth Burns!

Connor Isaac Burns!

Here's our little man, compared to the size of a phone. We started calling him "the Con-man" the other day, and now the nurses have even joined in on the nickname

Mckenna with her favorite blanket

Mckenna's first blanket!

Connor's foot!

We took this picture to show the size of Connor's feet

Mckenna up close

Connor's awesome sunglasses!

These sunglasses look hysterically funny on Connor. Too bad that he hates them. He goes under the lights a little more than Mckenna for jaundice

C-pap machine for Connor

The doctors tried both kids on the CPAP machine, which is a nasal oxygen system, instead of the ventilator tube down the throat. It didn't work very well, and they had to go back to the ventilator

Mckenna says she's had enough of the NICU!!!

Please keep breathing, sweetheart!!

This is Mckenna's large supply of oxygen.. there's three large oxygen machines keeping Mckenna alive. The two closest to her incubator are the "jet ventilator" and the last tube is one they just brought in, Nitric Oxide. Both were turned up to the maximum level that a baby can tolerate on 1/6 and 1/7, her roughest days so far. She has pneumonia, but is feeling a little better today

Connor with his mouth tubes-- the top one is his ventilator tube, and the bottom one is his feeding tube with mom's milk

Is the diaper bigger than the golf ball?

We took this picture to compare the size of the kids' (this is Connor) diapers to a golf ball!!

Mckenna loves to put her hands near her head