Well, as 2009 and the first decade of the 21st century come to a close, we've definitely ended it with style. We'll be celebrating the countdown tonight with Luke in the hospital and probably a lot of other NICU parents as well and we couldn't imagine being anywhere else.
He's had another good week of steady growth and is finally over the 1 kilogram mark at a "hefty" 2 lbs 5oz. His feedings are now up to 12ML's and counting.
Yesterday during our visit he was more wide awake then we've ever seen him. Very wide eyed and looking all around. It was kind of an odd experience for me because for as much as I obviously want him to continue growing and getting bigger, I had my first parenthood moment where I realize how quickly he's growing and how much different he looks just 1 pound later. I'm staring to realize how parents always say how shockingly quick their children seem to grow and how they "get so big, so fast".
We also had our 2nd family meeting with his attending doctor, his main nurse and the social worker. There wasn't too much we didn't already know other than a few things that they'll start to look at closer now that he's getting bigger. Today is the 5 week mark and next Thursday will be the milestone 6-week mark. He'll get another brain ultrasound to check the growth of the brain and his first eye exam to see how his "peepers" are progressing as well.
Once again thanks to all of you for the love and prayers. On behalf of Stacy, Luke and myself, we wish you all the best and happiness in 2010.
Luke's post-holiday weekend went pretty well. While his mom and dad were visiting with family and friends for Christmas (in-between visits to Luke, of course), he was busy growing. He cracked the 2 pound mark and is now 2lbs 1.4oz!
We spoke to the doctor on Saturday and he said he's pretty much on pace with where they were thinking he would be in terms of vent settings. He still has awhile to go, but we're ok with that. The doctor also told us he is off of the "sick kids" list, which was interesting because we didn't even know that list existed or that he was on it. Needless to say, we're glad he's not on it anymore.
He's up to 9 ml's of milk per feeding now and the doctors say that when he reaches the 20 ml mark, which could happen as soon as 7-10 days from now, they would take him off of his I.V. nutrients, which means 1 less "tube".
Now that he's past the one month mark, we're hoping all of the "ups and downs" will settle down at least a little, but we know there is still a lot to get through. Each day he gets a little bigger and stronger which is all we can ask for now.
Thanks again to everyone out there who is following Luke's progress and praying for him. We know there are a lot of you...some who we've never even met! We appreciate it as always and we thank all of you very much.
John and I were excited to go and visit with Luke on Christmas Day. We had some gifts, a very special story, a "super" blanket, and even a Santa suit for him to wear. When we arrived he was fast asleep on his belly and his nurse Suzanne was on duty. Little did we know that she was about to give us the best Christmas present ever. She told me I could hold Luke for the very first time. Since the moment he was born all I have wanted to do was hold him, but I didn't expect that it would happen this soon. I had mixed emotions. Was he ready? Was I ready? So I had her explain how it would work and then we started getting myself and him ready for what they call Kangaroo Care.
I sat in a chair right next to his isolette, they unhooked him from everything, and at the last minute unhooked his oxygen tube, which I reconnected after she brought him over to me. Then his nurse tucked him inside my tank top and then reconnected some of his monitor wires. Once he was settled in I was able to focus on the fact that I was holding my son for the very fist time. My first reaction was an emotional one. He was up against my chest and I could feel his warmth and him breathing.
What a moment! I was not able to see his face, but John could. This was a special moment for him too because normally we don't get to be so close to Luke. For the most part Luke slept on me, but John said he also opened his eyes several times and looked up at me.
He did really well outside the isolette and we think he enjoyed the bonding time with us. We took tons of pictures and a few videos to capture this special moment, but most of all I just sat there focusing my sense of touch on how amazing it was to have my little boy in my arms. I kept rubbing my chin against his soft head. At one point he was holding onto my finger and even squeezing it a few times. Each one of these moments will forever be in my heart. John too was able to feel Luke's head against his cheek. To end our Christmas moment John read his beautiful story to Luke as we all huddled together for the first time as a family.
Now of course I am going to want to hold him all the time, and John too. We look forward to the next time we can feel this closeness again.
There is a magical place far, far away in a special part of the North Pole that not many people know about. It is a place filled with strange gizmos and gadgets with bright lights and funny noises that go “beep beep”, “ding ding” and “bing bong”. But those are not what make this place so full of wonder. It’s the very tiny people that live there – the baby elves.
These are not ordinary baby elves either; they are very special baby elves. You see, sometimes baby elves get so excited about Christmas coming that they just can’t wait any longer and are born extra early so they don’t have to wait until the next year! However, because they come so early, they are teeny-tiny little baby elves and aren’t finished growing yet and need special care from the very smart and caring doctor elves and nurse elves. They make sure the tiny baby elves don’t get sick and help to make them grow big and strong so they can go home with the mama and papa elves and go on to become healthy, slightly bigger elves and make toys for Santa!
Here, these tiny, baby elves are born every day and each is special in his or her own way. But, one day the most special tiny baby elf of all was born. His name was Luke. Luke, you see, was born extra early and not only because Christmas was coming.
One day, while Luke was still in his mama elf’s tummy, he was dreaming of snowflakes and candy canes and most importantly toys! All of the sudden his little baby elf body knew that something wasn’t right. His mama elf was getting sick. When he listened carefully, he could hear her crying. “Uh oh” he thought, “my mommy doesn’t feel well. I better get ready to go!” Sure enough a few days later, with the help of the super smart doctor elves, Luke was born and soon after his mama elf was much better. Luke was happy because he knew that he had helped make his mommy better, but he also knew there was a long time before Christmas and he had a lot of growing to do before then.
Growing up was going to be a lot tougher than Luke thought. He couldn’t help but get excited at the thought of Christmas and Santa and all of the fun he was going to have. Because he was so little, all this excitement would wear him out and the doctor and nurse elves would have to help him when he got tired. As the days and weeks went by, Luke did his best to lie in his bed and let his little body grow. Sometimes he would get sad because he knew Christmas was coming and he wanted to help make toys…and play with them too!
One day, when Luke was feeling extra sad, he suddenly heard a voice…then a laugh. “HO HO HOOOO!” he heard the voice say. “Could it be?” thought Luke. He heard the footsteps come closer, peeked out through his little baby elf eyes and there he was. Santa Claus himself, with his bright red hat and suit and fluffy white beard peered down at Luke. “What have we here?” said Santa. “Now this is a special little elf!” Santa had heard the story about Luke helping his mommy get better and wanted to come see him before he set off in his sleigh to deliver toys on Christmas Eve. As Santa looked down on Luke, he could tell Luke was a little sad that he wasn’t quite ready to help with Christmas. “Don’t you worry little Luke”, he said with a smile. “I’ve got something for you.” He reached into his big red bag and pulled something out. He opened his hand and inside was a little green elf hat he had Mrs. Claus make especially for him. “This is for you”, Santa said as he gently put the hat on Luke’s little head. “You just rest and get big and strong so you can help your mama and papa elf next Christmas.” With that, he gave Luke a soft pat on the head and a little wink. Luke smiled back and knew he had made Santa proud.
From that day on, Luke was happy and continued to grow bigger and stronger each day. He knew that just one short year later, he’d be a healthy and strong baby elf and would get to celebrate Christmas with his mama and papa who eagerly awaited the time when they could bring their littlest elf home.
We can't believe it, but Thursday is already Luke's 1 month birthday! A whole month full of days that sometimes felt like years themselves and gave us quite a few gray hairs, but here we are. We couldn't have done it without all of you and of course the amazing doctors and nurses in the NICU at the hospital.
Luke's week so far has been pretty typical for him, lots of ups and downs on the ventilator settings and we learned a valuable lesson about not focusing so much on the individual numbers, because it will and has been driving us crazy. Instead we're focusing on the little victories, for example, he's up to 5ML's of milk now and increasing each day. We found out today that when they eventually get him up to 20ML's, they can start to wean him off of his I.V. nutrients. He did get a visit from Santa on Tuesday, but it was a quick one as Luke was having a bad morning when he came by. We got to see a lot of the other parents bring their babies out to pose for pictures with Santa, which was sort of hard to watch, but we were happy for the parents, many of whom have already been there for a LOT longer than we have been and need those happy days just as much as we do.
He's about 1 lb, 14 oz now and looking more "mature" each day. We'll make sure to let everyone know when he cracks the 2-pound mark.
Luke has been steadily getting a little better each day. He's in a different type of isolette bed now, but that's only because the overhead cover on his old one got stuck. We actually like the new one better though because it's clearer and we can see him better now. He's up to 1 lb and 14 oz and today they increased his MEF feedings that they re-started on Sunday up to 3 ML each. We hope he continues to handle those well because they will help him grow. They've lowered the rate on his ventilator from 44 to 40, which is still on the high side, but a step in the right direction. On Sunday we also talked to the lung specialist who explained that he'll continue to watch Luke closely and hopes to be able to gradually reduce the rate and pressures on Luke's ventialor in the next week or so down to more mid-range levels and then leave him at those levels for around a month or so (depending on how he does) while his continue to heal and grow.
On Tuesday Luke is getting a visit from Santa Claus as well as a full round of tests so he has a busy day. We'll let you know how it all goes.
Those are the new words we're hearing and they are much easier to hear. Luke is much more stable now and is showing very slow and steady improvements and that is going to be the story for a long time. The doctors have taken a look at everything and since he's been doing fairly well on the settings he is currently at, even though they are on the high side, they're going to pretty much leave him alone for awhile and just watch his progress.
It's basically going to come down to time, which seems to be what he needs. His lungs still have a lot of developing to do and so while the doctors like to try and ween him off the machines a little quicker, sometimes with premies like Luke, they just need more time. And we're fine with that. If time is all he needs, that is a nearly limitless medicine. There are still concerns with long time side effects of prolonged exposure, but if he continues to show this slow and steady improvement and growth, he should be ok.
They've taken him off of the antibiotics that they were giving just in case of the pnemonia, which has been ruled out for now, so he's only on basic nutrients and one medicine twice a day that helps him continue to urinate well, which helps eliminate any build up of fluid in the lungs.
So just as the famous tortoise in his race with the hare, slow and steady will be Luke's approach to the finish line. Please continue to pray as we will and we'll do our best to keep everyone updated. Thanks again to everyone.
Unfortunately, it's a phrase we've heard way too much these last 48 hours. It's been a really rough period for Luke. The doctors have been trying to explain to us that the problem that he's been having this week that is not getting any better is simply that his lungs are very premature and underdeveloped. Therefore he is not oxygenating or ventilating well.
On Thursday they gave him a larger breathing tube which seemed to help temporarily, but hours later he was having troubles again. At around 1AM this morning (Friday), we received a call from his doctor with an update and things did not sound good...at all. His voice lacked optimism and he wasn't giving straight answers to the really hard questions. Needless to say we headed to the hospital immediately and got there around 2am. What we were told is that he was "fighting" the ventilator, meaning by him trying to breath over it, he was in a way overexerting himself and defeating any benefit from the machine. The x-ray that they took late last night looked very bad and showed that the air sacs in both lungs were under-inflated. What they've done since is to mildly sedate him so that he is relaxed and they have full control over his breathing. He's currently on the maximum pressure setting on the ventilator, but as of this morning, he has been fairly stable at a 51% oxygen percentage, which is borderline, but acceptable. This morning's x-ray looked slightly better and they hope that by continuing the mild sedation and breathing control, the situation will continue to improve and they can drop the pressure levels. He is also being seen by a pediatric lung specialist who is supposed to do a full evaluation and get back to us later today or tomorrow.
Obviously this is a very difficult time for us. We know everyone is praying for Luke and all we ask is you continue to do so. We'll try to keep everyone posted as much as possible, in between trying to find time to sleep an hour here or there and eat, which is proving difficult.
We're staying positive and hopeful and we ask you all to do the same. Thank you.
The past two days have been pretty good for Luke. The doctors are still trying to solve the lung inflation issues, which they were thinking earlier today could be pnemonia, but aren't so sure now, but other than that he's been very cooperative with his nurses and is making improvements. His blood gas levels continue to look good and they've been able to slowly reduce the levels on his oscillator, which is what we want to see. He also managed to gain another ounce despite not receiving any milk since last Thursday.
On Wednesday, we got to interact with him a little more than usual. I took his temperature and Stacy even got to give him a little soap-free sponge bath. Here's a little video of it (sorry no sound, I'm still getting used to the video editing software!).
Today his nurse Rhoda was telling us how Luke has made it very clear that being on his belly is his favorite. They have to move him from time to time, but when they move him off of his tummy position, he gets a little grumpy and lets the nurses know it. Since he was on his belly while we were there today, we got to see his little baby butt for the first time when the nurse changed his diaper in a "reverse" fashion. Since he's still very tiny, so was his little behind which looked more like just a little crack in his lower back. The nurse said premature babies' butts are the last thing to grow. He was also being a bit of a trouble maker. They had to give him an I.V. in one of his head veins which the nurses had already told us weeks ago they may have to do from time to time and it's really no big deal at all and looks much worse than it is. Luke, being the already curious little monkey that he is discovered the new tube and immediately started grabbing and pulling at it and we had to scold him while his nurse put a little pillow over it so he couldn't grab it anymore. We can already tell we're in for a lot when he gets older.
Upon arrival to our visit with Luke on Monday, he was G R U M P Y. "Auntie Rhoda" (his main nurse) had him on his stomach, which he usually likes, but we're guessing since he couldn't wave his hands around like he normally does because of the I.V. holders on his arms, he wasn't having it today. You could definitely tell he was crying by his little scrunched up red face, but it's still one you can't hear. It was hard to watch, but since his heart rate and "sat" levels were good we know he wasn't in pain, just cranky. He was also back on the oscillator, which to correct an earlier blog post is actually the vent he was originally on a few weeks ago that does the vibration and 600 little quick breaths per minute. They explained that what they found is that they believe there is/was a small blockage in the lower part of the main bronchial tube in his right lung that was not allowing air to fully inflate that lung and hurting the left lung as well because it was causing it to get hyper-inflated. By putting him back on the oscillator they hoped to alleviate the blockage and allow both lungs to inflate normally. Once this works, the left lung can begin to heal, which will take a few weeks or so.
The good news was that by putting him back on the oscillator, it greatly improved his blood gases (the CO2 level in his blood mostly) which were very high. As of around 11pm Monday night, his last 3 blood gas tests looked really good. They also said that they can keep him on the oscillator as they try to work him off of the machines and not necessarily have to put him back on the other vent first.
Our daily visit ended much better than it started. Rhoda put him back on his right side and he seemed to be much more comfortable and was immediately waving his hands around again. Shortly before we left, Stacy reached in to give him a little touch goodbye and she had a very heart warming moment as he grabbed a hold of her pinky finger and held on tightly. One of the little moments that help get us through the tough days.
As of Sunday night, Luke is continuing to get over many of his post-operation difficulties. He's urinating regularly now and his heart rate and blood pressure are looking good. He's been taken off of most of the medications he was on and should be off one more tomorrow.
While that is all good news, he's still having a few issues. The CO2 level in his blood is still high which they'll work to correct and his right lung is currently slightly collapsed due to the fluid he had been getting in his lungs before his PDA valve was corrected in the surgery. They have him on his left side and are giving him a slightly higher pressure on his ventilator to try and get this fixed.
Monday morning will bring a more complete evaluation and they might be able to begin giving him small feedings again. We're also curious if he might be able to get transferred into an open bed rather than the closed incuabtor.
Lastly, it definitely seems that Luke somehow knows it is winter outside as he seems to be growing his own winter coat. The beautiful blonde hair that has covered his head seems to be sprouting on his arms, legs and shoulders! We know that it's just little baby fuzz that will go away as he grows, but it's kind of funny.
It's Saturday morning, about 24 hours after Luke's surgery and he's doing ok. As we said, there were no major complications with the surgery itself, but he's been experiencing some of the common post-op problems - mainly a lack of urination and high blood glucose. They have the glucose issue under control after giving him some insulin, but the urination problem is still ongoing. We talked to the doctor this morning and they're going to give him one more dose of the medicine they have been giving him before trying some other things. They've continually re-assured us that these problems are very common after the type of surgery that he had and they normally can get them corrected within 48 hours or so.
He was sedated all day and night yesterday but we're told he's pretty awake this morning. They haven't had to give him any pain medicine yet, which is good, but they're keeping an eye on him. His heart rate is still a bit on the high side, but seems to be getting better slowly as well as his blood pressure which was a little low as well.
After the surgery yesterday we had a "family meeting" with his attending physician and the social worker there that we had scheduled earlier in the week. It was very informative and both reassuring and a bit scary. His doctor explained that a lot of the really hard stuff is behind him. Having the PDA surgery was a major step and once he's healed from it they look for him to make some major progress. The next big challenge, in addition to continuing to avoid infections, is to being weening him off of the ventilator/oscillator and get him to breathe on his own, so as to avoid certain issues and complications that can arise from being on those machines for too long of a period. While much of what the doctor said was good to hear, it was a big reminder that we have a LOT still ahead of us. The next month is another crucial period in which they'll try to gradually increase the amount of breast milk he'll receive in balance with all of the fluids and nutrition he's receiving via I.V. currently. They explained that they have to do this very slowly as to not cause an issue with intestinal inflammation, which can be serious.
One of the questions we get asked a lot and know people are curious about is about his weight gain and if he's "getting any bigger". He has gained a little weight - he's up to 1 lb and just over 10 ounces, but that could come back down a bit now that he's not getting any milk because of the surgery. It will be a long time before he starts to see any real weight gain, but we're not in any hurry. His overall health is our (and the doctors) main concern.
We'll continue to stay positive and we can't say enough about the amazing support, thoughts, prayers that you have all given to us and Luke. Each and every one one of you is helping (even if you may not feel like it) and supporting us a great deal through these tough times. Luke also asked us to thank his mommy's friends from college for the unbelievable gift basket they gave us. You guys are wonderful and we're very grateful.
Thanks everyone...we'll keep you posted on Luke's recovery.
We just wanted to quickly let everyone know that the surgery went well this morning - no major complications. Luke is back in his normal spot in the NICU recovering and still very groggy from the anesthesia. We will try and post more information and details later on today or tomorrow morning. Thanks again for all the thoughts, prayers and support.
Today we got a call from one of the doctors notifying us that Luke's PDA valve had gotten larger. Obviously something we really did not want to hear. We actually got the call while we were in the doctor's office for Stacy's two week post-op check (which went well) and once we were finished there, we hurried over to the NICU to get the full story.
His nurse Rhoda who handles him most of the time reported that he was having worse than usual spells the night before and that the murmur she was hearing was getting worse. They explained to us that while the medicine did seem to get it nearly closed previously, it did not work completely. We asked if another dose of the medicine would be worth trying, but they were fairly adamant that the procedure (surgery) is the best course of action and would be a permanent fix.
While this was very unsettling to hear, they reassured us that this is a very common procedure that they conduct very often in these types of situations. We're nervous and concerned for Luke, but at the same time, we remain faithful that he'll continue to be strong and conquer this latest challenge he is faced with. Another hopeful thing we heard from a woman with a daughter who has been in the NICU for several months, was that most of the parents who had infants that had the PDA valve surgery have already gotten to take their babies home. The doctors said that once he gets past this, it should solve most of his oxygen "spells" and will be a good step towards getting him to be able to breathe on his own and increase the amount of his feedings.
The surgery is happening Friday morning at 7:30 AM. We'll try and post some updates as soon as we can. In the meantime, please keep praying for Luke like we know you all have been and we look forward to sharing good news with you all soon.
Yesterday, even before our visit, we got an update from Luke's nurse. She informed us that Luke had gained weight. He went from 1 lb 5.9 oz to 1 lb 9.4 oz. He is just shy of 2 lbs. This is wonderful news because often times premies lose weight in the beginning. When we arrived for our visit we found out that Luke also had another poop which was a "big one" as his nurse put it. He continues to amaze us. She also told us that Luke spent some time on his tummy, which we didn't think was possible because he is so small. She told us because he has the monitors tummy time is safe and that he really enjoyed himself. Hopefully we will be there to witness this sometime.
Tufts of blonde hair continue to grow on Luke's little head and were very visible, especially on the back, which we were able to see very well because they had him propped up on his left side. The nurse today commented on how (at least for now), he looks like he'll have very light blonde hair because even his eyebrows are very light. I said that it seems that Stacy's Swedish genes are coming through and he might end up being a tiny version of her dad, whom most know as "(Big) Swede".
The extra 1ML of milk he's been getting seems to be paying off as he is starting to put on weight, although it's only mere grams at this point, but still a good sign. There is still no sign of the infection they were worried about over the weekend, but he still has one or two more days of antibiotics, just in case.
A few things that we weren't excited to hear is that he has started "spells" of his Oxygen "sat" levels bouncing up and down, which while it is semi-normal for babies in his situation, it keeps the nurses quite busy adjusting his oxygen level and oscillator accordingly. They also mentioned that they've noticed the heart murmur a few more times, so today he recieved another echo scan to check out the PDA valve. It did reveal that it has re-opened, but only slightly and will only require close monitoring for now and hopefully it will re-close on its own. We'll pray that this resolves itself on its own and doesn't require any medicine or surgery.
We ended our visit today by reading his first book "On the Night You Were Born", that was given to him by his honorary "aunties". He seemed to like it very much and fell fast asleep by the end of the story.
Saturday:
Saturday was a lazy day for Luke. His nurses had actually propped him up on his right side a little bit and he seemed more than comfortable despite repeatedly laying on his left arm. When we arrived he was napping pretty soundly and we almost felt bad disturbing him. He did wake up for a little while, but seemed pretty sleepy the whole time. We did get to see one great thing though - what appeared to be his first little baby smiles! It was a little hard to tell and probably pretty hard for him to do with both a breathing tube and feeding tube in his mouth, but it sure looked like it to us. We managed to catch a little one on tape...you be the judge:
Sunday:
Even before our visit with Luke on Sunday, we received some good news. The early results of Friday's tests came back and his white blood cell count had stablized and there was no sign of infection in the first 24 hours of the tests. They will check again at 48 hours, but the early indication looks great. When we did arrive, we were surprised to see that Luke appeared to sprout a large amount of blonde baby hair, seemingly overnight, on his head and "sideburn" area. We couldn't help but laugh and called him the "little wolfman".
Luke also got to see his Auntie Amber and Grandma "Swannie" one last time before they headed back to Arizona and gave one of his signature "thumbs up" to tell them thanks for taking such great care of his mom and dad while they were here. Stacy also was asked by one of the nurses if she wanted to change his diaper but chickened out and left it to the professionals (for now).
The other good news of the day was they have increased his milk intake by 1ML and lowered the setting on his oscillator as well, so he can try to do more of his own breathing. The "so-so" news of the day was they may have detected a small heart murmur which could indicate the PDA valve re-opened, but we're hopeful that is not the case and the doctors will continue to monitor it.
Yesterday was a bit of a mixed bag of good news and so-so news for Luke. He had a LOT of tests done, but handled them all in stride like he has been.
The good news of the day was that the second round of medicine for his PDA valve worked and the echo scan showed that it is now closed. (Huge cheer here). While we're very excited to hear this, we know there is a chance it can re-open and need another dose of medicine, but we're going to remain hopeful that this will not be the case.
The so-so news was that his white blood cell count has been rising and according to the doctors could mean one of two things. 1) He was just born with a low count and now it is rebounding to normal or 2) it could be signs of a growing infection of some sort. This second possibility was also somewhat supported by the discovery of a small amount of secretions in his mouth which they took a sample of and will be analyzing over the weekend. Because of this worry about the possible infections, he had to get a whole slew of tests done and samples drawn including a form of spinal tap, which the doctors say he handled well and shouldn't have been too painful for him.
Saturday should be a less eventful day for him in terms of tests as they analyze everything done on Friday so he should be able to rest. We will know more about the possible infection in the next day or two, but we're hopeful that it won't be anything serious or even better, nothing at all.
Well, it's kind of hard to believe, but today was already Luke's 1 week birthday and he continues to do well. He celebrated his special day by making his first real poop...and his second! He finished his second round of medicine to try and close his PDA valve and will get another echo scan tomorrow to see if there is any progress. He also gets to be without one less tube as the doctors will be removing his "UB line" which was attached to his belly button (umbilical cord).
As of yesterday, he also has a new perspective on life as they shifted his position in the incubator so his head is on the left side instead of the right. Since he likes to look to his right, it makes it easier for him to see us when we come to visit.
He likes to wear himself out by waving his arms and kicking his legs all around, so our little trouble maker also earned himself a little "seat belt" to keep him from burning up all his calories, which are very valuable to him as he tries to get bigger. It does not appear to work completely though as he was pretty worn out today and was full of big baby yawns while we visited.
We are finally home. For the most part it is good to be out of the hospital, but it is definitely hard to be this far away from Luke and it takes a lot more energy to go see him. Yesterday we ended up going for a late visit. We arrived around 8:00 which ended up being one of the times when the care takers are doing his everyday check up. The exciting thing is he was off the light so we could see his gorgeous eyes. He had them opened the whole time we were visiting with him. His care taker explained everything to us that she was doing duirng his check up. The exciting part is they try to get the parents involved as much as they can. So John and I got to swab his cheeks with some milk. It was amazing to watch him react to this. She also let me rub him down with some Aquaphora, so his skin doesn't dry out. This part was a litttle nerve wrecking because I didn't want to press too hard and hurt him. Another cool discovery is that Luke is working on his very first poop, which is a very good sign that his digestive system is beginning to work. He was a trooper through all of his tests and it seems like everytime we go we learn something new.
Today we had another good visit. When we arrived Luke was wide awake and looking around. We purposely went around 4:00 because it is another one of the times the care takers give him a check up. They told us he is off his ventilator and is now on an oscillator which gives him slower deeper breaths. The part we liked was the tube was off to the side more so we could see more of his mouth and lips. Today we got to swab him again with milk. He was so adorable because he would open and close his mouth. We felt like we were really feeding him. Again we got to rub him down with Aquaphora, but this time John got the honors of doing it. We sat and talked with him for awhile and watched as he moved around so much. He loves to kick his feet out and he was moving his arms all around too. The nurses there tell us we have a very active boy. We nicknamed him "the feisty footlong".
As far as Luke's health, in general, he is doing well. He is on a ventilator that gives him 600 little breaths per second, but is on a low oxygen amount, which is good because it means he is more or less breathing room air. He has been on and off the BR lights for his jaundice, but is currently off of them. (He looks really tan unlike his mom and dad). His biggest challenge right now is his PDA heart valve which is still open (a common issue with babies born this early). They've given him a few doses of medicine for it and the last echo scan showed that it is starting to shrink and hopefully with a few more doses of the medicine, it will continue to do so and eventually close. The doctors have already told us this could take awhile so we must be patient. As of a few days ago, they've begun giving him cheek swabs and small increments of breast milk to get his gut stimulated and start up his digestive system. So far he's responded well although he's not completely digesting it yet, which is fairly normal at this point. His hemoglobin, heart rate and blood pressure have remained good and stable so far and best of all his first two cranial scans of his brain have not shown any indication of any bleeding which is the best news of all.
While so far it's gone really well, we both know that this is still what they call the "honeymoon period" and there are still many challenges in the long road ahead. We'll continue to pray and hope for the best while we take it one day at a time.
The first few days of Luke's life were interesting because we were still in the hospital making sure that Stacy was recovering well from the surgery. Luckily I was able to go down and see him as often as I could and wanted to and he was only a short elevator ride away, down on the 2nd floor. Since Stacy's first few days were rough She wasn't able to go down and see him yet.
The first time that I, Stacy, went down to see him didn't go so well. I was very anxious to meet my little boy, but because I was still on so much medicine it didn't not work out the way I wanted. I couldn't focus on him, I was over heated and felt like I was going to be sick. Needless to say we left and I would try again tomorrow.
The next day I was finally taken off the medicine that was making me feel out of it. I started to feel like myself again. We decided it was time for another trip down to see Luke. This time he was having some tests done so again I really didn't get to see him. It was upsetting, but I knew John had been down to see him numerous times and he did such a good job relaying all the news of what was going on with our son.
Later that day we tried again and this time the visit went well. He looked a lot smaller than I expected, but he was so active kicking his legs around and moving his hands. At this time he was under the light for jaundice so they had his eyes covered. During this visit I talked to him and it was amazing how he reacts to our voices. The neat thing was the nurse said that I could touch him. So I opened up one of the doors and reached in to touch the bottom of his foot. It was amazing to feel him and have him push against my hand. John got to feel him for the first time also and even got his first "high five". Luke, being as active as he is, waving his arms and legs reached his arm up and opened up his hand and John gave him a little tap with his finger. We both left there smiling because we were able to see our boy and to see how strong he is.
We had been bouncing back and forth between a few names and thought we would have awhile to decide. That changed pretty quickly, but we have a great story now.
The doctors had just whisked him away down to the NICU after letting me see him for a quick few seconds. Stacy was still undergoing surgery. Pacing nervously, I walked over to one of the windows and just started staring out at the sky. If anyone remembers, it was very cloudy on Thanksgiving. But in that moment as I looked out, just minutes after he was born, the clouds broke open and the sun started to shine through. It was a very powerful moment, one where you can almost feel God, and immediately I knew that his name would have to be Luke which means "bringer of light". We had talked about this name early on and said we would name him Lucas and call him "Luke". "Alexander", for his middle name, was just a name that we liked and means "great leader".
The funny part was, when I finally got to see Stacy after the surgery and started to tell her the story of what took place by the window, she told me that she had been telling the people in the operating room before she went under that his name was Owen (the other name we had been thinking of giving him), because she didn't want him to be without a name in case something happened. So the debate continued, but not for too much longer. Stacy wanted to be able to see him in person before deciding officially on a name and once we saw him together, we agreed that Luke was a strong boy and needed a strong name to match.
On Thanksgiving Day, Thursday November 26th, 2009, something happened that Stacy and I could never had anticipated. It was around 4AM and Stacy, who had been having pains in her back and chest for several days that we just attributed to normal pregnancy discomfort, was having another bad night. Unable to sleep and tossing and turning in worsening pain we finally decided to take a trip to hospital to get her checked out. Upon arrival at the E.R. they began the normal battery of tests and the Tylenol that she had taken on the way had kicked in and the pain was subsiding. After talking to a few doctors and nurses, the initial diagnosis was a common issue with her gall bladder. The next step - an ultrasound of the gall bladder to take a look at it. Much to the confusion of the E.R doctors, the ultra-sound came back normal and her gall bladder looked perfect. After sending us up to the Labor and Delivery ward where they specialize in pregnant women, the tests continued, as did the confusion. Then the scary part began.
The doctors we spoke to there were becoming increasingly alarmed at how rapidly Stacy's blood platelet count was dropping and liver enzyme count was rising - both signs of a rare condition called preeclampsia. The odd part was that she did not have any of the typical symptoms other than the random chest & back pains. No headache, dizziness, or anything else most women encounter. A few tests later and it was confirmed - HELLP Syndrome - which is an extremely rare and severe version of preeclampsia. Then came the really scary news. There is no treatment and the only thing to do is to deliver our son early - at only 25 weeks of gestation. It's hard to describe what we felt. Shock, fear, confusion, disbelief, denial and more fear. As one of the specialists informed us, the problem was that, while our baby was doing just fine inside, the rare condition she was stricken with basically causes the body to start to attack itself and the liver, kidneys and other organs start to shut down and if Stacy's blood platelet count, which was at 100 when we came into the ER and had already dropped to 70 by 1pm, got down to 50, it posed a severe threat to both Stacy and our son's life. There was no longer a choice and they had to act as soon as possible. The next hour or two were almost unbearable. The mere thought of any risk of losing both my wife and unborn son was more than I ever thought I could handle and I wouldn't wish those moments on anyone.
Luckily, with the help of God and my incredible family who was there to support us we got through the operation. The emergency C-section went as well as they could have hoped and my son was born at 2:35 pm - at a very tiny 12.2 inches long and only 1lb 5.9 ounces. I was able to see him for a very brief minute or so before they rushed him down to the NICU (Neo-natal Intensive Care Unit) and the moment was very surreal. I had just become a father which is usually the single most exciting day of a man's life, but for me, my wife was only a few rooms away was still undergoing a major surgery.
Around 10 or 15 excruciatingly long minutes later, the surgeon came out and gave me the good news that the operation went even better than expected. Stacy had minimal blood loss despite the condition and our son, even at his tiny size, even let out a cry (I like to think of it as a tiny warrior cry). Just minutes after Stacy was brought into the post-op room, she was in good spirits, and even joked around in her anesthesia-induced haze.
A little over an hour later, still in what felt like some messed up dream/nightmare, and completely exhausted both physically and emotionally I was able to go down to the NICU and see my son. Even though it was through a plastic, protective case and unable to touch him I could see how strong he was despite his tiny body and felt reassured. 10 little fingers, 10 little toes, little ears and his mommy's nose. God certainly had given us something to be thankful for.
