A Long Overdue Update - 4.27.09

Good Evening Everyone... My sincerest apologies for not posting in over a week. My energy to post daily hit a wall a little while back and I'm newly committed to getting back on the horse again. It's just been extremely taxing emotionally and physicallyon Michelle and I and sometimes we just collapse into a heap when we get home and blogging is the furthest thing from our minds.

Where do I begin?

Earlier last week on April 22 Christian had what Michelle and I feel was probably his worst day thus far. His stats had dropped significantly on this day to the point where he was saturated at 100% oxygen and could not go any higher. He normally sits in a range between 40-60%. After his PDA ligation he had been doing so well- the ventilator settings were coming down steadily, his gases were good, his feedings were back up, and then..... he took a very sharp downturn. You have to understand that Christian has an extremely bad case of pulmonary interstitial emphysema in his lungs, which is basically a fancy way of saying that he has a bunch of cysts all over his lungs that are stopping him from being able to compress and decompress his lungs fully like a healthy human being. Michelle and I stayed at the hospital for over 7 hours and would have stayed longer had we not been kicked out nor had we been drooling all over ourselves from exhaustion. I've never seen Christian so lethargic and lacking movement. He usually is wiggling all over the place. He had lost weight, his stats were bad, he wasn't moving, his oxygen levels were alarmingly high and the ventilator settings had to be bumped all the way up, eliminating all of the progress he had made following his surgery. Michelle and I were a wreck.

Fast forward to today, and Christian looks much, much different. It's amazing what 5 days can do. Chrsitian is back down to about 60% oxygen saturation at my last call to the NICU about 30 minutes ago. His night-time primary nurse, Rainna, is watching after him tonight. I always feel really comfortable when Christian is in her hands. His primary nurse for the daytime, Auntie Erika was watching him today. She is the sweetest nurse EVER! We love her. I think it is important to have a primary nurse that you can relate to and grow to love as much as we'vegrown to love her. Christian loves her too, and it makes you feel that extra little peace ofmind when you know she is taking care of him. She even went so far as to buy us this adorable littlemonkey frame when she wasout and about on her day off thinking about him. Too cute. We definitely hope to have Auntie Erika in our lives for many years to come.

We spoke with Dr. Ginsberg today and he informed us that the pulmonary emphysema is starting to improve from his latest chest x-ray. Christian gets an x-ray every morning to see what's going on in his little lungs. It seems the right side of his lungs have shown significant improvement, though the left side of his lungs are stillvery much suffering from the disease. Chrsitian is also suffering from a loss of blood platelets and adepletion of white blood cells,so the doctor has put him on three courses of antibiotics to hopefully correct that. Christian also had a blood transfusion yesterday and today to compensate for the lack of platelets.

His feeding are going great! He continues to be on full feedings without any supplemental fluids, which is outstanding. He is receiving 5.2 mL per hour of milk, which equated to about4.5 ounces daily. He is receiving a calorie fortifier which should help him to grow more quickly. He is up to a whopping 1 pound 14 ounces now, and Michelle and I are crossing our fingers for 2 pounds this week! He is starting to really fill out his little body and to get bigger. The doctor says his ability to tolerate feedings is going to be his saving grace.

I don't think I've left anything out. We'll be back tomorrow with some hopefully good news to share with you all. Until then, thank you for your prayers, thoughts and warm wishes, and God bless you all.

With Love,

Jason & Michelle

4-19-09 Visit

Christian is back on his feedings and ALL his bloodwork is beautiful:D His blood sugar is 117 and his gasses were great. I finally worked up the courage to stay by his incubator today as they pricked his little foot for a blood gas. I thought he would make a face and grimace, but it was like he didn't even mind and he just yawned as Adam was taking the blood. I guess thats a good thing, I hate to see him in pain and umcomfortable. I sat there and let his fingers wrap around my finger. He has got an iron grip on him! He was very alert today and definately recognizes our voices. When Jason talks to him, his stats go up very quickly and he seems engaged, as to when I speak to him, he seems to open his eyes right away, then go back to sleep. Haha. Hopefully soon, the nurse said, we can start kangaroo kare. Im super excited and plan on spending as long as I can holding him.

Finally an Update!

Hi All, We apologize for not updating sooner. We know many of you have been checking on him. Christian had his PDA surgery done on Friday afternoon, April 17th. They first discovered his murmur when he was 13 days old, but it went away. It came back this past Thursday and they went ahead and decided surgery was the best option for him. You guys do not understand how nervous I was. I was unable to eat and concentrate on anything the moment we found out this had to be done. He pulled through great!!! There were no complications and he was resting peacefully when we saw him an hour afterwards. He is off his feedings as for now, but should be back on them come sometime early this week. Hopefully tomorrow or Tuesday. When I went to visit him yesterday, his eyes were wide open and he was very responsive. Jason went later on yesterday evening and said he was full of life and kicking alot! His blood sugar levels are improving, they were in the 200's but now down to 170. Hopefully, this surgery will clear him of most of his problems and help out with his lungs. He is still on the High Frequency Jet Ventilator, but his oxygen is down significantly from before his surgery.
I'm still pretty tired from my c-section, but everyday, I try to do a little more to build up my strength again. It's hard and challenging, especially since I was on bedrest too. I feel like I owe Jason the world for taking such good care of me, I can't wait to heal completely so I can finally go to the grocery store and buy the ingredients to make him his favorite, Lemon Marinque pie:D
Thank You all for all the continious prayers and positive thoughts. Christian is living proof that God listens and hears all of our prayers. So Thank You.
God Bless,
Jason and Michelle Buktenica

Little Pookie is up to 4.5 ml of breast milk an hour now:) He is doing very well and his arm IV is finally off so now he can move freely. We only had a short visit with him today due to the NICU closing because of a new admit. But right as we were saying goodbye he opened his eyes and looked right at us. It was like he was saying please don't go. It broke my heart. But his stats were looking good and he was just resting as usual. I am bringing him his Easter Basket tomorrow along with a Bear that I found at Wal-Mart that imitates the womb. He will enjoy that. We wish everyone a very Happy Easter and don't eat too much chocolate!!!

4-9-09 Visit

Today was so much fun visiting baby. He is doing so well:D His stats were good and he was just laying on his side sound asleep. He is up to 4 ml an hour now and they are fortifying the breastmilk for more caloric intake. We got a chance to change his diaper and right as I took the diaper off he tinkled all over, followed by a poopy! It was so cute! He wiggles constantly and likes to push his stuffed animals all over with his feet. After his diaper change we placed him on his back, and he stared at Jason and I for a good 30 minutes until he fell back alseep. It was the most blissful moment today. Something so minor that most people who have term babies take for granted meant SO much to Jason and I. It felt like a little peice of heaven when he looked into your eyes. Breathtaking. I, Michelle, was having some aching pains on my incision last night, so I wanted to refrain from walking a lot today. I'm still aching a little, but I think I am just working myself up by reading c-section healing stories. I made Christian an Easter basket and will bring that in Sunday. I am trying, key word, "trying" to upload a video from yesterday. Bare with me! Lots of Love, The Buktenica's

4.7.09 & 4.8.09 Visit

We went to visit Christian with Michelle's mom today. I went down to speak with one of the doctors for a sleep study consultation while Michelle and her mom went upstairs to see Christian. Once my consult was over, I went up to see our beautiful little boy and he looks happy as ever! He always looks super cute when he is on his tummy, like a little tree frog! Yesterday we had a very exciting thing happen- he opened both of his eyes wide open to look at us!! That's the first time we have seen both of his beautiful little eyes! It was incredible to feel the emotion surrounding that event and very special.

Christian is feeding completely off michelle's milk supply, and the doctors boosted him up to 4.0 mL per hour today, which at his weight is the most they will feed him right now. If he tolerates this amount, they will begin fortifying the milk with extra protein and enzymes to boost the amount of calories he is consuming, ultimately increasing his weight.

Chrsitian began steroid treatments this morning. He is going to be receiving 40 days of injections to increase his lung functioning. The x-rays that came back showed lungs that were not functioning well and the doctors decided during rounds to begin steroid treatment earlier than expected as a result. Part of the problem is the fact that he is on a ventilator and that he is so young... his body and his lungs aren't supposed to be functioing right now, as they are supposed to be still developing in the womb. The nurse told me that these steroid treatments are very common in babies his age and that they should start to improve his gases soon. He has a high amount of carbon dioxide in his blood gases right now, which means his arteries aren't pumping enough of the gas out of his lung and heart. They have certain ratios of oxygen to carbon dioxide that need to be maintained and he is hooked up to an oxygen stream which can be inversely correlated to the amount of carbon dioxide leaving his blood. This is a scary time for us right now, as the longer he is on the ventilator the more potential scarring his lungs will endure.

In other areas, he is doing very well. His ventomiacin is no longer being given to treat his infection and it seems that it has been all cleared up.

Michelle is making Christian an Easter basket right now with massive amounts of ribbons on it. I'll have to take a picture and post it. She's extremely crafty, as is Corinne.

4.5.09 & 4.6.09 Visit

Our apologies for not writing sooner, but the past few days have been quite hectic with consults for my sleep study, putting together Easter baskets, taking Michelle to the doctor, and various other things. On to Christian!

Christian looks to be getting bigger and bigger! The nurse told us today that he weighs 1 pound 9 ounces, which means he has gained about 6 ounces since he was born. He looks healthy and happy in his little incubator. We spoke to the doctor for a while today about potential steroid treatments that Christian is going to need in relation to his lung development. Apparently, the steroids tend to make some babies lose weight if they are given too early, so the doctor wants to wait until Christian is taking more milk and consistently increasing in weight.

Speaking of which, Christian was up to 3.0 mL yesterday and 3.3 mL today in regards to his feedings. He is taking Michelle's milk extremely well.