We're having some fun!

In between feedings and diaper changes, we're managing to have a little fun. The attached photo was in planning for some time. Thanks for Jean Hadfield, a truly gifted knitter, for doing the hats. By the way, Charlotte had a weight check yesterday. She's gained 18 ounces in 12 days and is nearly 6 pounds! You go girl! The boys get another weight check on October 6, but are eating well and feel heavier than Charlotte, so I think they're doing pretty well too.

Everyone's home and life really begins

Hi all. I have a feeling this post will be much more brief than most of the others, as I have to grab a couple minutes here and there to create this entry. After 19 days in the NICU, on Monday night the boys joined Jeff, Charlotte and I at home. Our family is now complete! Jeff returned to work Monday as well, so we didn't go pick them up until the evening, and after all the discharge paperwork and the drive back from the hospital, we didn't get home until after 10:00pm, and entered a VERY long night of learning how to take care of three babies at once. Jeff took the midnight feeding, and I took the 3am and 6am. Even just in the last couple of days we've refined our "systems" to be more efficient and organized. I'm sure we'll get better and better as time goes on. For me, life almost entirely revolves around bottle preparing and washing, changing diapers and hugging and kissing these beautiful little people as often and possible. Jeff is learning how to balance the work that is now our entire livelihood while enjoying the kids as much as possible in the off hours. We are blessed with help, too, as we have childcare assistance 4 days a week. We also started with our night nurse last night for 2 nights a week. Not sure how long we're going to want to make the investment for this much help, but for now it's the best way to maintain our sanity. Before the kids were born, I had decided to try to breastfeed. In the early days in the NICU the kids took all their feedings via tube, so I had to pump to provide the milk. Then Charlotte came home and the logistical nightmare started where we were caring for her at home and making one or two trips a day to the hospital, and I continued to pump so that I could deliver milk for the boys each day. Although I eventually had the option to breastfeed Charlotte at home and Sean at the hospital, I still had to pump for Luke because he requires a fortified milk as a reflux precaution. It was also a control thing - by pumping and then feeding by bottle, I could be assured of how much they were eating. Needless to say, after about 2 weeks of this I was starting to lose my mind a bit. In order to keep the supply up, I need to pump 6-8 times each day for 15 minutes...nearly 2 additional hours in my day that I wasn't resting or sleeping. My fatigue and mood were seriously affected. So just in the last few days I've accepted that I need to switch to formula. The pediatrician has assured me I'm NOT a bad mom for doing this, and that most of our generation was raised on formula and we're just fine. My goal is to finish out the month, and be done with the pumping. I have moments of guilt, but am trying to feel good about giving them the benefit of breast milk for the first month of their life. Most importantly, all the little storms seem to have passed regarding everyone's health. Luke has definitely turned a corner and is even challenging his brother in the growth department! Each baby has visited the pediatrician for a weight check following discharge from the hospital. Charlotte is nearly 5 lbs now, Luke is 5 lbs 11 oz and Sean is 5 lbs 14 oz. They're all eating well, although we're trying to get Sean to eat his entire meal at one sitting. He still takes part of his bottle, poops out, and then seems to want to have a snack an hour later. Obviously we can't indulge that behavior very often because we would never sleep! Otherwise they're doing great and we are having great fun learning each one's personality. Finally got the picture upload to work again, so I've attached a few pics. Enjoy! We thank everyone for their continued thoughts and prayers as we find our way through these challenging first few months.

The latest...highs and lows

Hi all...sorry we've gone pretty much underground the last several days. It's been a series of very high highs and some difficult lows since our last update. On Friday we got the unexpected word that Charlotte was doing SO well she would be ready to come home on Saturday. All she had to do was pass the "car seat challenge." We had to bring her car seat in to the NICU, demonstrate we knew how to appropriately put her in, and then they monitored her vitals for one hour in the seat to ensure she could tolerate that position. So, Friday was a day of nervous anticipation, last minute errands for supplies, fine tuning the nursery, etc. We're bringing our baby girl home!!! We arrived at the hospital on a high Saturday afternoon. When we arrived, though, the nurse informed us that Luke had had a couple of pretty serious episodes of "desaturation" on Saturday morning, which means his blood oxygen level fell significantly, struggled to breathe, and turned a dark ashen color called "going dusky". Apparently he stopped breathing for 1 minute. Whoa. All along he has struggled with respiratory issues, and had previously had some minor episodes, but nothing like this. We had long conversations with the nurse and doctor about what might be causing the issue on both Saturday and Sunday. The doctor pretty much ruled out anything neurological, as he demonstrates strong alertness, focuses and respond well to stimuli, etc. We had also run a chest x-ray which ruled out anything infectious or viral like pneumonia. So, the doctor requested a consult from a pediatric ear, nose and throat specialist to see if there could be a structural blockage, etc. There was also discussion of whether reflux could be contributing to the problem, a very common issue with preemies. They started him on Zantac on Sunday evening for the possible reflux. After just a few doses it seems to be making a difference. His color is better, and no episodes. Reflux can be very distressing to little babies, causing them to clamp down their airway and possibly cause those desaturation episodes. The specialist also examined him this afternoon, and actually did a scope of his upper respiratory system. It appears that he may have a narrowing of the right sinus airway, and she also saw the signs of the likely reflux. On Tuesday, Luke will have a CT scan of his sinus area to determine if the narrowing is structural (bone), swelling from the suction they're doing because of his cold, or both. They're giving him steroid drop to reduce the swelling also. The long and the short of all this is, nothing we're facing indicates a long-term health issue. It could be as simple as treating the reflux, which babies generally grow out of in the first several months to a year. Even the structural narrowing would be "outgrown," as he grows and the overall airway expands. If the narrowing is severe, there are procedures that could be done to expand/hold open the airway for him until he outgrows it. So, we're cautiously optimistic that the coming days will be more answers, improvement in his immediate condition, and a long-term plan. In the meantime, little Charlotte passed her car seat challenge with flying colors on Saturday, and we officially arrived home with our sweet baby on Saturday night. We were so exhausted from the events of the day and our concern about Luke that we ate dinner and all went to bed early! Being nervous first-time parents, we put a pack-n-play in our room and had Charlotte "sleep in" with us. We wanted to hear every coo and squeek! The little angel was so good for mommy and daddy that she went nearly 4 hours between feedings and barely fussed at all. God is watching over us, as we now go back and forth to the hospital, bringing Charlotte each time. We call her our little church mouse as she patiently sits in the corner in her car seat while we visit the boys, and talk with the doctors and nurses and we rarely here a little peep or coo. We just feed and change her as necessary and she never makes a peep! And lest we forget Sean! Big brother continues to grow and thrive, but is still working to learn to eat. His suck/swallow coordination is a bit disorganized, and he is only able to take a fraction of his feeding by mouth. The remainder is given by NG tube each time. An occupational therapist visited today to evaluate him, and didn't see anything serious requiring specific treatment or therapy. She did provide some strategies for assisting him as he eats, and everyone seems to agree that one day the light-bulb will suddenly switch on, he will get it, and be home with us a matter of days after that. They're also treating him with Zantac, as he is regurgitating pretty regularly as well. So, our days our VERY full and unpredictable right now. We're treasuring our hours at home with Charlotte, learning from her and getting to know her - and then heading to the hospital to see our boys for a few hours each day. We're all a bit tired but hanging in there! A friend from church coordinated meals to be delivered each day through the end of the month, so we are blessed with good meals instead of fast food or PB&J sandwiches. We also enjoy tiny bits of "normal" time, as I type this in front of the TV while Daddy and Charlotte watch the Vikings game with baby asleep on his belly. Thanks to everyone for your continued thoughts and prayers, and we hope to slowly come out of our cocoon enough in the coming weeks to respond to calls and emails ocassionally.

A one-week update

Well it's been one amazing, beautiful and exhausting week since the babies entered our lives. We also decided we'd better capture a summary of this first week's events, as they seem so vivid now, but the details will fade quickly once they all come home and life really begins! So, here is a brief overview of what has happened with each baby. In general, at their gestational age (just a little over a month premature), they initially assess them for respiratory issues, how well they regulate their own body temperature, and then work on graduating them to "feeder/growers" that can take all feedings by mouth and consistently gain weight. Sean Daniel Burke Born 8/31/06 at 10:26 a.m. 5 lbs 8 ounces, 18 3/4 inches From the beginning, Sean was the leader of sorts (although someone is catching up quickly, as you'll read below!) Because of his size, temperature regulation was never really a problem. He also required very little respiratory assitance and only for a short time. By Day 3 he was off all oxygen and other breathing assitance and in a crib. He is still monitored for respiration, heart rate, etc. but doing well. We're now working on feeding by mouth. He seemed to take to it okay, but is turning out to be a lazy eater! Some of his feedings are still delivered via NG tube. We have also attempted breastfeeding a couple of times, and he does latch on, but doesn't really take any volume that way. Sean is our only "blondie" and seems to be our sort of laid-back, relaxed one. Luke Victor Burke Born 8/31/06 at 10:27 a.m. 4 lbs 15 ounces, 18 inches Luke is our little fighter. He has had the most respiratory issues to battle, and unfortunately now has a little cold to complicate things. Both he and Charlotte required a dose of surfactant at birth, something that is normally present in a term baby to kick start their lungs. His progress is the slowest, but as I said he is a little fighter. He did graduate off his IV and is taking his feedings by tube. He is still on oxygen, but they're trying to slowly wean him down on the amount. As you'll see in the pictures he spends most of his time on his belly, which at this stage actually helps him breath and is safe while in the NICU where he is constantly monitored. Before he is released they transition him to back sleeping which is the safe way for them to sleep when they come home. Today when we were in for a visit the doctor said she also heard a slight heart murmur, but it was slight and irregular and while they'll monitor it, she expects it will probably resolve on its own. Charlotte Isabelle Burke Born 8/31/06 at 10:28 a.m. 4 lbs 12 ounces, 18 1/2 inches Charlotte is coming on strong. For several days she and Luke were sort following the same pattern of progress, and all of the sudden she's challenging Sean for the lead and has pretty much surpassed him! She came off oxygen to room air a few days after Sean. She then quickly graduated to her crib, starting taking most feedings by bottle, and then made quite a statement by pulling out her feeding tube! So, she is taking all feedings by bottle now, and they'll only put the tube back in if she doesn't get enough by bottle to gain weight and continue her forward progression. When this girl is awake, she is amazing and so alert! The nurses call her "blueberry eyes" because she has these wide, dark blue eyes that dart all over the room. They have all lost weight since birth, which is normal. Sean is now right at 5 pounds, Luke has lost the most and is at 4 lbs, 3 ounces, and Charlotte is 4 lbs, 6 ounces. As they improve with their eating, they'll progress their way back to their birth weight and beyond. It's a ton of work for them to learn to eat, and to coordinate sucking, swallowing and breathing. We've been told to expect that the weight gain will begin about 10 days after birth, so we should start seeing it soon. These days our schedule is generally that Jeff and I make one visit to the hospital together, and then Jeff makes a separate trip on his own while I rest and try to recover. My recovery has been slower than I'd like, but I know that I have to be patient. There's a very good chance that the babies will come home one or two at a time, which will be a bit more challenging logistically, but we'll deal with that as it comes. Jeff has another week off work and will go back on the 18th. We've got all our help lined up and ready to go, and our church is delivering meals every night through the end of the month! There is also a woman from our church that has been a huge support to me - I was introduced to her through the Elizabeth Ministry for new moms. She coordinated all the meals, calls regularly to check on us, and is a former NICU nurse herself so she provides lots of good insight and information. I've probably said this in every single blog entry, but we are SO blessed! Each one of our children is wonderous and beautiful in their own way. I know it will be exhausting, but I can't wait until they're all home and we can begin our life together on a daily basis. While we ask for prayers for all of them to continue their progress, we'd especially like to request prayers for Luke to get stronger and overcome his respiratory issues so he can get into the "feeder/grower" stage like his brother and sister.

We've Got Pictures!