Monday, April 27, 2009

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

Sunday, April 19, 2009

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

Saturday, April 11, 2009

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!!!

Thursday, April 9, 2009

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

Wednesday, April 8, 2009

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.

Saturday, April 4, 2009

4.4.09 Visit

We just got back from visiting our little man a little while ago... I need to stop eating late at night so that I can work off this pregnancy weight. This is Jason-not Michelle- by the way. She seems to be doing just fine with that =)

Christian looks very healthy right now, which is all we can ask for. They increased his feedings from 2.0 mL to 2.5 mL per hour, which means he is receiving about 60% of his food by breast milk and 40% by IV fluids. Once he is able to take 100% of his feedings by breast milk the doctors will be able to remove the feeding tube from what we understand.

Christian's vitals are more stable tonight than they were last night. His oxygen levels and his heart rate have both been remaining relatively level and the same. He is on about a 65% oxygen saturation level right now.

He just looks really healthy. He opened up his eyes for Michelle and I again tonight... I can't tell you how special it feels to witness that and feel that... it carries so much more emotion for us. these simple little milestones and events mean so much right now- it really helps us to feel more connected to him when we cannot hold him or comfort him right now while he's in the incubator. He totally has my legs and my calves and my feet... He's going to look just like his daddy when he grows up! Hopefully he gets Michelle's nose though =) We will see.

We'll stop in tomorrow again to see our little monkey after church with his big sister. She's having a special date with mommy and daddy to go see an IMAX 3-D movie. On a side note, Christian still loves his Peter Cetera songs. I'm beginning to write the structure for my book about our experiences, which I plan to title, "Peter Cetera Saved My Baby." It will no doubt become an instant bestseller... we just need to get it to Oprah somehow.

Friday, April 3, 2009

Christian Opened An Eye!! 4-3-09

Today was absolutely amazing, it was one of the days I was waiting for, the day he would finally open his eyes!!! Jason was standing against his little house and he just opened his eye! His left one.
We were so ecstatic, we started taking pictures, but he slowly started closing it by the time we snapped so I only caught him with it half open. I'll post it anyway. His feedings are back up to 2ml. He looked quite comfy all snuggled up on his stomach and was drooling away. There was one time his heart rate dropped to 82 but he quickly came back to 160ish. Jason was having anxiety attacks today, probably because he was looking at the moniter too much. I learned to just look at Christian instead of the moniter b/c I used to freak myself out too.
I will post Christian's photo now for all to enjoy! Thank You for all the prayers! They are working:D

Thursday, April 2, 2009

4-2-09 Visit

Today was a much better day for Christian. When we got there, he was laying on his back and just kicking away!! They told us they gave him some blood this morning, so his color was looking really good. He's back on his feedings as well.
I wasn't half as tired as I have been, but when I got home this afternoon, I conked out. I haven't really been able to eat much. I think my body is dealing with alot of stress and my stomach has been acting up. Its not aching persay, but it's definately uneasy and a bit queezy. I'm scared my milk supply will start running low if I don't eat enough, so I try to force myself.
Jason seems to be doing better too. Of course, he always has an appetite!!!
He took Corinne to get ice cream thus afternoon and to buy some things at wal-mart. We don't want her to feel left out since we go see Christian in the afternoon's, so she was happy to hang out with him.
I try to arrange to pump at 7am so I can get Corinne ready for school. I know every minute she hangs out with us, she enjoys!
Hopefully tomorrow will be another uneventful day for Christian. Thank you for all the prayers:D

Wednesday, April 1, 2009

4.1.09 Visit

We went to go see Christian in the morning about 9:30 am, when the doctor typically does his rounds. We found out more information about his condition today, and Doctor H said that christian has something called PIE (Pulmonary Interstitial Emphysema). Basically, the condition can result from prolonged ventilator assistance and an overpumping of the fragile lung sacks, which is why they chose to put him on a separate ventilator. Though we still don't completely understand what is happening and what this means, I remember the doctor saying that they had to get him off of the ventilator soon to minimize any serious lung scarring. When we saw Christian, he looked well. His color was back and he looked better than he had the prior evening. The doctors had taken away him feedings as a precaution but they are back on at 1.0 mL per hour right now.

We went back to see Christian this evening after shift change at 8:00pm. He still looks to be doing well, and his vitals seem strong. He reacts very well when Michelle and I talk to him, and the nurses suggested recording our voices while reading a story so that they can play it back to him if his vitals drop. His heart rate dropped once tonight while we were there but he pulled himself back up on his own very quickly, within 10 seconds. We don't know what is going to happen at this point and it's really scary... We aren't totally clear about what the PIE condition means, nor how badly he has it. From our research online, it seems preemies are supposed to have this condition at 72 hours or less after birth, not this far along. It also stated that this condition is only present in about 1-2% of preemie babies. I stopped reading because I didn't want to scare myself or Michelle... sometimes too much information is a bad thing. There is mortality associated with this kind of condition. Hopefully we will get more information tomorrow when we see the doctor during rounds.

On a positive note, the doctors could not hear any signs of his heart murmur today, and they think it may have gone away. Also, Christian looks very close to opening his eyes! they are becoming more and more unfused each day. We love him so much, it is so difficult to leave him.......

3.31.09 Visit

I left for San Francisco for a quick day trip to pick up all of our mail that has been sitting for about 6 weeks, to pick up our tax documents and to make sure the apartment hadn't burned down. Of course, on the one day that I wasn't with Michelle, something turns for the worst.

The day began much like every other day we have had with Christian thus far. Michelle went to visit in the morning with her mom and everything was fine. christian's vitals were good, he looked to be in good health and there was no cause for concern. It was a relief for me to hear, as I was having anxiety just being away from my family even for a day. It was the first day that I wouldn't be able to see Chrsitian in the hospital because I was traveling.

Fast-forward to later in the evening, and I call Michelle from my plane during my connecting flight from Las Vegas. She tells me that the hospital called to let her know that something had happened- when I called her, she was already at the hospital with her dad. Apparently Christian had to be changed to another ventilator because he had a condition called PIE. They changed him to a jet ventilator which pumps 420 bursts a minute rather than the normal respiration he had been receiving over the past 2 weeks. When Michelle went to see him, she said christian was pale and not moving hardly at all. He looked lifeless and frail. However, as soon as michelle began talking to him, she said his vitals picked up quickly and that he responded to her voice. Throughout the evening, he continued to get better. We called the hospital later, around 2:00 am, to ensure that he was still doing well. The nurse assurred us that he was doing well and that his vitals were still strong. We planned to see him first thing in the morning during his rounds so that we could have an opportunity to speak with Doctor Harley.