Until We Meet Again

On May 4, 2009, the union of Quantis and Andrea Wiggins was blessed with the birth of their beautiful son, Kyle Quantis Wiggins.

Kyle was given many nicknames throughout his life – many of which seemed to reflect his weight at the time (he went from being a String Bean to a Chubby Chaser). Kyle was affectionately known by his Mom and many others as just “Buddy”. Kyle spent his entire life in the hospital, but he picked up many friends along the way. He always seemed to have a way with the ladies and spent majority of his time with a few of his favorite nurses: Karen, Sung, Lori, Susan, Angela, Cheryl and Nicole.

Kyle’s short life was always filled with excitement. He managed to do things that many of us have never done, including taking a helicopter ride over the city of Chicago on his way from Hinsdale Hospital to Comer Children’s Hospital. Kyle enjoyed spending the day with his Mom and the late nights with his Dad. He never complained when his Dad started snoring during their nap time or when Nikki sang to him when she visited. He just enjoyed every day of his life and brought joy to so many around him.

From birth, Kyle was known as a fighter. He beat many odds and overcame many obstacles. After 8 months of fighting, God decided that it was time for the champ to retire. On the morning of January 13, 2010, the angels came to get Kyle and take him to heaven, where he joined his brother Lucas. Although Kyle celebrated meeting his big brother and Grandmother Geneva who preceded him in death, he left many behind to cherish his memory.

The Wiggins family would like to gratefully acknowledge all of the prayers, acts of kindness and support shown throughout Kyle’s life and during the difficult time of his passing.

The last two weeks have been pretty interesting and I have finally made some progress. My parents had another one of those dreaded meetings, but this time, it was a little better than the last two. As things had seemed so bleak before, we now have some indication that my heart may actually be able repair itself some. The last test showed some changes that had my doctors say that they were encouraged by what they saw. I know by now, you all know how cute I am (who could resist these big cheeks), so it's no wonder that I have picked up yet another girlfriend. There is this really awesome pediatric doctor who has taken an interest in me and has been doing everything that she can to try to help me. She's used to dealing with us older babies and I think she has a thing for me.....lol. Many of her suggestions have actually helped with my progress. She challenged me to wean my oxygen down under 60% and I was able to do just that. One of her suggestions was to try putting me on my belly more and for reasons way too complicated for me to explain on here, it has helped tremendously. Yesterday was supposed to be the end of my 2 week paralysis, but everyone decided that it would be beneficial to go for another week or 2 to see if we can maximize the progress that I've made. We realize that it is going to take a while before I am fully recovered, so we continue to be patient and pray for healing.

The progress that I have made is the best Christmas present that we could have ever asked for. I have my tree up and my Christmas music playing and am looking forward to a great celebration on Friday. Happy holidays to you all and PLEASE be sure to keep me in your prayers. Thanks so much.

After what seemed to be forever, we finally got the results back from my ECG test. The cardiologist says that my heart thickening has not gotten worse over the last two weeks. We were praying for improved but will definitely take no change over worse. They are going to go up on one of my heart meds to see if that helps and repeat the test in a week. My new pediatric doctor also suggested keeping me in a paralyzed - sedated state for 2 weeks to give my heart a rest and allow my oxygen settings to be weaned on the ventilator. She suggests that if we can get the oxygen level down, it will give the lungs a better chance to grow new healthy lung tissue, which in turn will alleviate the stress on my heart. It sounds like a plan, so we are going for it. Our motto these days is "if it doesn't hurt him, let's try it." This paralysis thing only hurts Mommy because she can't see my big, beautiful eyes, but she'll be ok.

On a side note - I know, I'm a little chunky. It's the steroids, I'll grow into it...lol.

Things have been coming along pretty well since the dreaded meeting. As my parents refuse to give up on me, I have been seeing a lot of different doctors to make sure everything is being done to help me. Today, I am supposed to be having my heart looked at again to see if there has been any changes since my last ECG test. My mom sought out the GI docs to see if they can make sure this colic thing is indeed colic, so they are also going to be doing some more tests on my digestive system. I had a pretty scary day yesterday when a pretty thick mucus plug got stuck in my trach. Luckily, my nurse was quick on her feet and got the right people to help right away. Needless to say, this all happened right as Mom was walking in. Poor Mommy. So I am not sure that I will have the tests done today, but I am sure it will be this week. As soon as we know more, we will be sure to let you all know.

I am sharing a picture from September at the request of my Auntie Erica. She fell in love with it and thought you all should see it. It is a priceless display of how much I love my Mommy and she loves me (love you too Dad).

It's been a long 2 weeks and so many things have happened during this time. I am over the respiratory infection, which is a good thing. After being in the hospital for 200 days, my parents had a family meeting with the medical staff to discuss my progress and long term treatment plan. Unfortunately, over my little lifetime of struggling with my breathing problems, my little heart has been working so hard to keep me oxygenated. As the doctors put it, "it's a race between my heart and lungs. Either my lungs have to get better before my heart gives out." I have developed what is called right ventricular hypertrophy (a thickening of the heart muscle). This was pretty devastating to hear, but we have not given up praying. The doctors say that my condition is moderately severe and their prognosis is not very promising. They are doing everything that they know about to help give my heart a break, but they cannot promise anything. The nurse told my Mom to cross her fingers, but my Mom told her to uncross her fingers and put her hands together and PRAY! So that's what we are doing and that's what we are asking all of you to do for us.

At Least It's Not Swine Flu

Well, the one thing my parents have been worried about happened, I'm sick. I caught a respiratory virus called Para Influenza. It's an upper respiratory infection and has caused me to have a lot of secretions and of course, a hard time breathing. The good thing is that I am now in an isolation room, so hopefully it will help me stay away from other outside germs. Bad news is that I had to be paralyzed again so that I can let the ventilator breathe for me without me trying to do it on my own. I was working so hard and I wasn't getting enough carbon dioxide out, so I need to take a rest. They should have me off of the paralysis meds by Monday or so and hopefully I can get back on track. Overall, I am still doing pretty good and continuing to pray for better health.

So, it's been a busy couple of weeks for me but things are going pretty well. My incision is pretty much healed and I have had the trach tube changed a few times with no problems. I am adjusting well and was even able to take a few bottles. I've continued to ride the roller coaster as it seems that my gassy fussiness is continuing to prevent too much weaning on the ventilator, so we are just trying to ride this colic thing out. We've read and heard a lot that colic usually gets much better by 3 months, so we are praying that it will be better for me soon. I am breathing pretty good, but my CO2 levels continue to skyrocket and then magically go back down on their own schedule. Because my little heart has to work really hard to oxygenate my lungs, it is causes a little thickening on the right side. We are not going to worry about it too much right now, but definitely have one eye on it. I am getting some medicine to help relax the heart muscle, so it doesn't work so hard.

It's really hard to say right now but the doctor told my Mom to hope for Christmas, not Thanksgiving.

Today was day 5 after my trach surgery, so the ENT came today to do my first trach tube change. The incision is healing well and everything is going according to plan. The tube generally gets changed once a week. The trach hole is kinda like an earring hole, so it takes a few days for it to heal. While the hole is fresh, it is important that the tube not be taken out so they have had me back in that "coma like" state that my Mom hates. Tomorrow morning, they will discontinue the paralysis medicine and begin weaning the sedation medicine, so I can wake up and check out my new self. After about 2 weeks, it should be almost completely healed. No matter what, I heard my Mom tell the nurse that I am wearing my Halloween costume Saturday no matter what. Bet you guys can't wait to see what I am going to be...lol. I will be sure to post pictures.

Right now, we are kind of in a holding pattern until I am fully awake and then we will start to evaluate things. Next steps will be to try to wean my ventilator settings down to either get me off altogether or to move me onto the ventilator that can be used at home. We also will start to work on my bottle feedings again and figure out if I still need this g-tube. However long that takes will determine how long I have to be here. Everyone keeps saying I am the boss of my destiny but that seems like a lot of pressure on a little guy like me. I'll be sure to do my best. I know my Mom was hoping by Thanksgiving, but who knows. You'll know as soon as I know.

The New Me

Today I had the surgery to place my trach and my Mom got to see me for the first time with no tape on my face. She says I am even cuter than she thought. I'm a little out of it on this picture and will be for the next few days as the incision heals. Things went well during surgery and I am resting comfortably. I did not get the g-tube because the general surgeon wanted my vent settings to be lower. If I am able to bottle feed well, we will most likely not get the g-tube. We really wanted to only have one surgery, but I am sure you all know by now that things don't always go as planned in the NICU. The surgical team came and got me at 3:15 and Mom and Dad were able to see me by 5:30, so things went fast. I know there are probably a lot of questions that we don't have the answers to yet, but we promise to keep everyone updated on how things are progressing. Thanks for all of the prayers that helped get me through surgery today!

Get It or Forget It Day

Today was a big day for me. My Mom was calling it sink or swim day, but I thought that was a little harsh way to put it, so we changed it to get it or forget it. Either I was going to get a trach or forget about the ventilator and breathe on my own. After being on the ventilator for a month, my lungs were just not ready to forget the comfort of mechanical ventilation. My doctors and nurses tried to give every chance to breathe on my own, but it was very hard for me. We are basically faced with 2 options, either continue to sit in the hospital until I can successfully wean off the ventilator or have a trach placed so that I can go home and wean off the ventilator at my own pace. Since waiting could possibly take months, we chose the trach.

So what does this mean? The ENT doctor is going to put a small hole in my throat and insert a tube into the hole (kinda like an earring, but bigger). The trach tube can be hooked up to a ventilator or an oxygen tank. This set up is more conducive to a home setting, as opposed to having the ventilator tube in my mouth. Being at home will allow me to thrive and start to enjoying being a baby without the constant interuptions in the hospital. The vented trach allows more mobility and I will be able to do most things that babies do. The trach is not permanent, but will be kept until my lungs can grow enough healthy tissue to allow me to breathe on my own. It's really hard to say how long this will be at this point. It could be a few months or a few years. Good news is that I won't have any more of tape on my face, so you can start to see how cute I really am. I am also going to get a G-tube, which is a tube placed in my belly to allow for an alternate way to eat in case I am not able to bottle feed. Some chronically vented or trached babies have trouble eating, so this will ensure that I am always able to get the nutrition I need to grow my lungs.

It's been a long road for me, but this will be what I need to finally get home with Mom, Dad and Zoie. My surgery will be scheduled for Thursday or Friday or very early next week. If everything goes well, I could be home in a couple of weeks - just in time to celebrate Thanksgiving. I will be sure to let you all know how things go and ask for your continued prayers as we prepare for surgery.

I am going to give a quick update and then follow up this afternoon. I am all set for extubation today. We are waiting for the ENT doc to get out of surgery. The plan is to put me on high flow and see what I can do. If I can't handle it, then I will most likely get the trach. Praying for successful extubation. 

Still Going...........

The last week has been pretty good for me as I continue to move in the right direction. I have been able to slowly wean on the ventilator and made a big move today to what they call the "weaning mode" on the ventilator. I won't go into the boring details of what that means because my Mom says people don't like when you act like a know it all. So far, so good with the change today. I took a few more tests last week to help confirm this colic thing and passed with flying colors. The EEG shows no signs of seizure activity and the GI contrast study shows no blockages or abnormalities in my intestine, excessive acid reflux or hernia by my diaphragm. So it's looking more and more like colic, but let me tell you, it's kicking my little butt. I started my physical therapy again and have been getting out of my bed to hang out in my new bouncy seat. I saw a new pulmonologist and she says that she thinks that I would not need to get a trach to deal with my lungs problems, only if they there is some type of airway problem. She believes that we should be able to get back to where I was before with my breathing, but that I just need time to recover. She recommended some changes to some of my medicines and treatments and my doctors have been following her plan. I'm still eating well and now weigh 10lbs 8oz. So that's about it for now. More updates to come as they happen.

Steady As We Go

Over the last week, I have continued to get better. Although not as fast as everyone hoped, I have continued to make small weaning adjustments on the ventilator. I am still experiencing the episodes of pain that lead to difficulty breathing. I have about 2 or 3 of them a day and they last about 15-30 minutes. They always seem to happen when I am passing gas and/or having a bowel movement. Because my doctors have not been able to find anything from the tests that I have taken over the last week, they are thinking that it may be be colic. The symptoms of colic are normally harder for the parents to deal with than the child, but it is a very difficult for a kid with breathing problems. The good news is that colic goes away. Colic is a sort of mysterious condition that doesn't have a test. It is diagnosed by eliminating all other possible conditions. I am going to have an EEG (electroencephalogram) test to rule out the possibility of seizures. My doctors don't think that I am having seizures, but they just want to be sure and be able to cross it off the list of things that I don't have. The episodes are most concerning to my Mom because she thinks they are really what led to me being back on the ventilator. Before the surgery, I was able to recover from the fits, but after the surgery I didn't have enough strength to recover. She's worried that if I come off of the ventilator that I might have a hard time recovering if the episodes continue, but is prayerful that I now have my strength back to withstand them. My doctors are going to get together to try to figure out how and when they will be able to get me off the ventilator. I'll be sure to let you all know as soon as we figure anything out. As always, thanks again for all of your kind words and actions, thoughts and prayers. They really have helped get us through these difficult times.

My doctors decided today that I was not quite ready yet to attempt taking me off of the ventilator. They want to give me another day or so to get my strength up and let my steroids and other medicines heal my airway and lungs. One thing that we have learned through all of this is patience, so we can definitely wait for things that are in my best interest. Overall, I had a pretty good day and have continued taking my feedings and weaning down on the ventilator settings. Interestingly enough, I had one of my fits (as my Mom calls them) today. Over the last month, we have been trying to figure out what has been causing me what appears to be severe discomfort. We thought at one point that it may have been the hernia, colic, bronchial spasms, irritability and even the airway obstruction. It seems that it is not any of these because my hernia is fixed and I am on the vent, so it leaves the question still unanswered. My new doctor saw me in action today and is trying very hard to figure out what is going on. A quick dose of pain medicine instantly relieved me, so we are thinking that it is definitely some sort of discomfort. We are really looking forward to hopefully finding an answer because these "fits" have definitely led to some of my breathing difficulties. Praying for answers and a simple fix

Well, I am really starting to get used to my new place and have been resting comfortably. After being totally sedated and medically paralyzed for a couple of days, I am now off of those medicines and am able to wake up and move around. I've been very stable and definitely showing improvement. Thank you Jesus. Tomorrow is going to be a big day for me. The doctors are going to take me off the ventilator in hopes of being able to evaluate my throat to see what was causing my airway problems. We are praying that I am able to stay off the ventilator and go back to my regular oxygen cannula that I had before all of this happened.

On The Road Again

It's the Great Space Coaster, just kidding, it's my transport module or whatever you want to call it. Yesterday, I got airlifted to the University of Chicago Colmer Children's Hospital. Sunday night, things kinda got a little crazy and I wasn't sure what I wanted to do, but I decided not to waste all strength and decided to take some lessons from Pretty Boy Floyd. After some very scary moments, I finally nailed the knockout. On Tuesday, my doctors thought I was ready to come off the ventilator and tried to take me off. My lungs were ready, but it appeared that my esophagus was not. It seems that I now have some swelling and it made it hard for me to get enough air into my lungs to stay off the vent. Needless to say, I had to go back on the ventilator. This was a concern, because it is possible that some of my problems may not have been totally due to my lung disease, but possibly due to some airway obstruction. I've know for a ccouple of weeks that I had a small weakness in my throat, but it wasn't thought to pose any eminent danger. This weakness may have grown and caused the swelling or the ventilator tube may be the culprit. One way to overcome airway obstruction is to place a tracheostomy, which is a small hole inserted into the neck that would allow breathing through my the hole, thus bypassing the airway obstruction. It was decided that I needed to be evaluated by some specialists at U of C to determine if this was the case, so up, up and away I went on the helicopter. My Mom is certainly glad that she chose the HMO this year or I might have to come home and sleep in the bed with Zoie. I have now spent my first night at the new hospital and I am stable and doing tolerably well. They have had to use some paralysis medicine on me because I am just not really wanting to have this tube down my throat. So basically, I'm chillin' and stay sleep most of the time. The doctors are waiting for me to improve enough to try to take me off the ventilator, so that the ENT (ear, nose, throat) docs can try to evaluate what is going on in my airway. It may happen as soon as tomorrow or early next week. We are excited, but nervous to find out what they see, but it may help answer some questions. I miss all of my Hinsdale family but they have over 190 nurses at U of C and my Mom says I am too young to settle down so I am looking forward to meeting some new ladies (wink, wink).

I Don't Like Rollercoasters!!!

When I first got to the NICU, they told us that it was going to be a roller coaster ride, and there is nothing untrue about that. Last Wednesday, I finally had my hernia surgery. It was a complete success. The surgeon said it was one of the most severe cases he had seen, but was able to complete the operation in a little over an hour and without having to put me to sleep. I began recovering well and was back to my regular oxygen level by the end of the day. Things were going extremely well until Friday afternoon. Over the last 2 weeks or so, I had been having what appeared to be some discomfort and would have episodes where I would cry and get so worked up that I wasn't breathing properly. Everyone had a theory about what it was but most people thought it was Colic or more discomfort due to the hernia. Well, these episodes began to intensify on Friday and everything went downhill from there. After trying multiple treatments to help me calm down, oxygenate better and rid my body of carbon dioxide, the doctors had to put me back on the ventilator. This is probably the worst thing that has happened to me so far. When I was tiny, it was a lot easier to take the ventilator. The last time I was weighed, I was 9lbs 14oz and this big boy does not like tubes down my throat. They have to keep me restrained and sedated so I don't pull it out so I am not really having much fun right now. I think that they are going to have to restrain and sedate my Mom soon. The doctor seems to think I am having some sort of post operative stress which is leading to bronchial spasms. They have increased my steroid dosage in hopes of relieving this and hoping to get me off the ventilator in the next few days. Needless to say, this has once again prolonged my homecoming. I'll make sure that I keep you updated on things but as always, please keep us in your prayers and we try to make it through what I am sure is going to be a very interesting week.

Things are looking pretty good these days. I had my television debut this week and I am feeling a lot better. I am 9lbs 3oz now and I am down to 2 liters of oxygen. My doctor says he will schedule my hernia surgery when I am under 1 liter to help minimize any breathing complications during surgery. So, we are thinking some time next week or very early the following week. After the surgery, I should be all set to go home in a few days if I am stable. My grandfather told my Mom that she has been saying 2 more weeks for 2 months, so I am not going to say that this time. We'll just say......soon. I also want to say "welcome home" to two of my friends - Sir Ronin and Princess Camryn. I'll see you guys soon.

Kyle's Commercial

Well, I am sure most of you know that I am not home yet, but just wanted to update everyone on how things have been going. Unfortunately, I had a set back the weekend before my hernia surgery, so it has been postponed. My oxygen requirements increased and I went from .3 liters to 4 liters overnight. When all was said and done, I was up to 8 liters. My doctors quickly began testing and treating me for everything under the sun. I quickly began to recover. They are not positive about what caused this but are proposing that it came from either an infection, an aspiration (basically, milk somehow got into my lungs) or inflammation. They treated me for all of them and this past Friday, I had a procedure called bronchoscopy. They scoped my lungs to collect cells to test to see if they could find the cause of my problems. The procedure had a risk of me having to be ventilated if my lungs were not strong enough to tolerate the sedation, but I was a big boy and made it breathing on my own. We should get the results some time this week.

While I was sick, I developed pulmonary hypertension which was a little scary, but a little nitric oxide and Viagara helped alleviate that problem. Yep, Viagara (these nurses are HOT...just kidding). The Viagara helps to relax and widen the blood vessels so that blood can flow more easily to my lungs. The increased my steroid dose and stopped my bottle feedings, but I think they are going to restart my bottle feedings today. Not to worry, I am eating really well and tipped the scales at a whopping 8lbs 6oz last night! I am 17 weeks old today.

I had another eye exam, and my eyes have continued to improve. I am now back to Stage 1, which is great! I will have what should be my last follow up in two weeks, but things are looking good. My Mom and doctor think we jinxed things, so we are not going to speculate about my homecoming anymore. I just want you all to know that I am doing much better and am well on my way to recovery. Please keep me in your prayers and I will be home before you know it.

Hollywood, Here I Come

Well, I guess when everyone tells me how cute I am, they really mean it. The Adventist Hospital group was filming some commercials and they asked my Mom if I could be in them. The camera crew came out and taped me for like 3 hours and I had a great time. The local commercials will be shown on channel 9 (WGN) starting next month but I will be sure to let you all know when I get more details. Things have been coming along well and my Mom told my doctor that she was taking me home next week, so we'll see. I am having my hernia surgery this coming Monday, so please keep me in your prayers. Hopefully we will be good to go a few days after that. I am up to 7lbs 5oz. I'll have my last eye test this week. I've been back and forth with my bottles, but I am close to taking 8. My doctor said that it is a little harder for me because my lungs are working so hard. He likened it to trying to drink a bottle while running a marathon.

Shouldn't Be Too Much Longer

A couple of my doctors think they're funny guys and call me Sammy Sosa, but I have to admit these steroids aren't too bad. After having to go up on my oxygen some more, my pulmonologist decided that we needed to increase my steroid dosage a little to help accommodate my bigger size. Well, it did the trick because I am now all the way down to .3 liters of oxygen (yes, there is a decimal in front of that 3). I have continued to gain weight and as of today, I am 6lbs 5oz. My speech therapist gave me the green light to attempt bottle feedings at each feeding. I have been taking 6 or 7 a day, so I hope to be to 8 by the end of this week. The eye doctor came Friday and my eyes improved a little more. The blood vessels have usually done what they are going to do by this gestational age, so I should be good to go without laser surgery. I am going to see him again in two weeks for good measure, but the prognosis looks good. Dr. P told my Mom he is just about ready to give us an eviction notice and we promised him that we wouldn't be mad if he did. I'll be sure to keep everyone updated as we find out more, but God willing, I should definitely be home in the next 2 or 3 weeks.

Holy Weight Gain Batman

Another pretty good week for me (thank you Lord). As of today, I am 5lbs 12oz - I know, wow, right? I have to be honest, a couple of these ounces may be buildup because I haven't had a bowel movement in 5 days, but glycerin suppository to the rescue today. I feel sorry for whoever my nurse is this evening. My doctors are not worried about it, they say it happens sometimes. Mommy is a little anxious because she thinks it may be stuck in my little hernia. Although she thinks she is a doctor now, she's not really, so we'll take their word for it. The eye doctor came back last Friday and my eye test results improved, so he won't check again for 2 weeks and hopefully we can dodge having to get the laser surgery. I've been taking my bottle feeds pretty well and I am taking a bottle at every other feeding. My breathing is steady, but we did have a minor set back after I received my immunizations. I had a fever and wasn't feeling well, so they had to bump me up to 5 liters for a few days. I am back on 4 liters now, but they are going to extend my steroid doses a few days just to see if we can get some more improvement. I'm thinking it won't be too much longer now, but we're just taking it one day at a time.

Well, things seem to be coming along pretty well right now. I've continued taking bottles and working on my nursing skills. I'm up to 4lbs 15oz today and am now 17.5 inches long. I did a tad bit worse on my eye test this week, but we are praying that it will not change any more. It is still up in the air as to whether I will have to have the laser surgery. I passed all of my other tests, and have started getting my immunizations. My oxygen flow has been decreasing and I am now down from 10 liters to 4 liters per minute. I have been tolerating the decreased steroid dosage so far and have about another week before I will be totally weaned. Again, this is where my biggest test will come. We are very hopeful that my great weight gain will be beneficial to helping me pass this test. My Mom got to help give me a bath and I met my maternal Grandfather for the first time. He's pretty cool. I heard that the shower was a hit and I want to thank everyone for the cool stuff I got. Can't wait to get home to check it out.

Got Milk?

Great news! I was given my first bottle yesterday and I did pretty good. I was able to take 2/3 of an ounce before getting tired. I know it doesn't seem like a lot, but it is for me. They are now going to start trying one bottle a day. My Mom also started trying to breastfeed and I latched on pretty good for my first try. Things have been going pretty good. For the 3rd week in a row, there was no change in my eye test, so that means that it is not getting progressively worse. I also passed some liver screening test that I had to take. I am continuing with all of my therapy and have been gaining weight pretty good. I am up to 4lbs 4oz today. I'm really starting to fill out my clothes.

Speaking of clothes, the funniest thing happened on Sunday. I know most of you probably know how much my Mom despises the color yellow - long story short (childhood trauma, yellow coat, big kid = Big Bird, 'nuf said). Anyway, I had a nurse that was not so familiar with me and she didn't know I had my own clothes, so she put this yellow onesie on me - ha, ha, ha. I thought my Mom was having a flashback of being called Big Bird by those mean kids, because she looked shocked. Needless to say, the nurses now know Mommy doesn't like yellow. Well, that's about it for now. I have about another week before the steroids are scheduled to be done, so we'll see then.

Today makes 7 days off the ventilator and things are going well. I weighed in at 3lbs 14.5oz. I started seeing a speech therapist to help me get ready to start taking a bottle. This will be one of my next big tests. Although I love my pacifier, drinking from a bottle is a little more complex. It requires me to coordinate swallowing and breathing at the same time, so I have to get some practice with this. The therapist will help me strengthen the muscles I need. I'm also seeing a physical therapist now to make sure I am developing all of that hand/eye coordination and body movement stuff. My respiratory therapist told my Mom he saw me doing push ups, but I was just lifting my head up to see what was going on. Yeah, I know, I have a lot of therapists now. Everybody wants in on this, but they're cool, so it's cool. I know everyone keeps asking when I am coming home, but we're not really sure yet. There are so many moving pieces that right now, we can only estimate 4-8 more weeks. Things will largely depend on how well I am able to drink from the bottle and how well I am able to breath on my own once I am off the steroids this time. I will be sure to keep you all updated as things progress.

What a Difference a Day (or Two) Makes

I hope you all had a wonderful holiday weekend - I sure did. Once all of my new medicines kicked in, my little lungs did the happy dance. I managed to wean off the ventilator by Friday afternoon and I am back on the high flow oxygen. Things have been going really well with that. I think that I am officially a big boy now because I moved out of the incubator into an open crib and I got my first real bath yesterday. I also welcomed my Mom into real motherhood when she changed my diaper yesterday. I accidentally got her with #1 and #2, but she loves me so much, she wasn't even angry. I am doing so well, that I finally let my Aunt Jetaun come see me again (she cries too much, so Mommy banned her for a little while - lol). She and my Grandma Paula got to hold me too. God is sooooo good. I added some pictures so you can see some of my excitement from this weekend.

Bronchopulmonary who?!?!

Bad news is that I had to get back on the ventilator yesterday. My doctors did everything they could to try to keep me off, but I just got tired. I am now taking my third round of steroids and I saw a pulmonologist who changed some things around that will hopefully help me get over this. Good news is that I finally got a diagnosis for the problems that I have been having with my breathing - bronchopulmonary dysplasia. BPD is a chronic lung disorder that occurs most often in infants who were born very premature, particularly infants who needed the support of a ventilator for more than a few weeks after birth. The tissues of the lungs get damaged when they are over stretched by the pressure of the ventilator. The great news is that most all infants with this disorder survive. We just need a little more support until our lungs grow enough good air sacs to manage breathing on our own. Seeing as that I am now 3lbs 11oz, I am well on my way to getting bigger. I may have to come home on oxygen therapy or take breathing treatments for a little while, but the parents are prepared to do whatever they need to for me. This will definitely be motivation to keep my Mom from going back to her old ugly smoking habit. That's all for now, but please keep me in your prayers. I hope you all have a wonderful and SAFE holiday weekend!

Over the last week, I have been really riding the NICU roller coaster. I was able to wean off the CPAP and went to the high flow oxygen last Thursday. My Mom said this was the best day ever because she could see how happy I was. I was so alert and finally stable enough that my Dad was comfortable holding me for the first time. I stayed on that for 2 days but my rebound put me back on the CPAP on Saturday. I did pretty good with that until today. Instead of giving up on me, my doctor decided to try the high flow oxygen but with a stronger flow. So far this is working and we are praying that it is good enough to keep me off the ventilator. For some reason, my little lungs are just not ready to work full time (kinda like my Mom). We are going to try to hold out as long as possible, but I may have to get some more steroids. We are hesitant to do the steroids because long term use of them can sometimes have some not so great side effects. I am 8 weeks old today and just over 32 week gestational age. I have continued to grow and am now 3lbs 7oz. I am up to drinking 1 ounce of milk every 3 hours. I took an eye test last Friday and overall had good results. I scored a level 1 on a scale from 0 to 4, with 4 being the worst. The opthamologist will continue to monitor me to make sure my eyesight is ok. Prolonged use of oxygen can sometime lead to abnormal growth of blood vessels in the eyes of preemies. This was pretty good news. They are watching me now to make sure I don't have an infection because my white blood cell count was a little high. Overall, not too bad - definitely could be worse. Please continue to keep me in your prayers and hopefully I will be breathing room air soon.

Well, it's been 6 days and I am still off the ventilator. Things have been going well with the CPAP so far and my settings are a lot lower. I will be done with my steroid dosage on Thursday and then we will start the big test. After the steroid treatment is over, there is usually a "rebound" period where progress takes a few steps back. Last time, the rebound bounced all the way to the other end of the court and landed me back on the ventilator. This time, we are hoping for an offensive rebound quick tip right back into the basket. My weight gain is stagnant as expected during the steroid period, but I will be focused on getting bigger as soon as I am done with my medicine. I had a wonderful Father's Day with my Dad. I can't wait to wear the Florida State onesie that Mom got me and to watch the FSU vs Miami game with Dad. He got a really cool FSU diaper bag too. We are going to look really cool on the couch.

Trying to Kick the Habit

I guess they underestimated me by thinking it would take until the weekend for me to wean off my ventilator, because I was able to do on Wednesday. Yay! Needless to say, everyone is happy. I am using the CPAP machine now and am looking forward to my next challenge. I am doing well with the CPAP and have been able to reduce the settings over the last 2 days. With my continued lung development, weight gain and prayers, I am really hoping that I will be able to leave my bad vent habit in the past. After almost 3 weeks, my Mom was able to hold me again today and we loved every minute of it. So long for now.

Round 2

I know it's been over a week since my last update and my Mommy says to apologize (she forgot to bring me the laptop..lol). As of Monday, I weighed 2lbs 15oz, so it seems that I am gaining weight pretty good now with the help of these protein shake like fortifiers that they are adding to my milk. I had a couple of incidents over the last week where my vent tube had to be removed and replaced (long story) and not to mention a trachea infection scare, but God carried me through everything. I had my PIC line removed because I am eating well. This is good because it lowers my risk for getting an infection. I also had my 1 month brain scan and everything is still good. I started another round of steroids on Monday and we are praying really hard that this time will lead to the permanent removal of the ventilator. We are hoping that my added weight will help sustain my ability to breath on my own. This weight gain thing has been pretty cool, because I actually moved up diaper sizes and was able to finally put on clothes....yay! It was just a preemie onesie for now, but but I know I am in for some great things because I heard my Mom yelling at my Dad because he was looking on the Burberry website for an outfit for me....LMLTO (little tush, in case you didn't get it). That's about it for now. We will hopefully be weaning off of the ventilator by the weekend, so that is what I am looking forward to. As always, thanks for the thoughts and prayers and my apologies again for those of you who have been waiting on this update.

Smooth Sailing

It's been a week since my roller coaster excitement, but now I am cruising on the yacht. Earlier in the week, I had an episode where my breathing passage got clogged with a mucus plug and I kinda froze up. The nurses had to use that breathing bag while they suctioned me. Talk about a scary sight - it was so Grey's Anatomyish. Other than that, I have had a pretty good week and have not had any other episodes. I celebrated my first month of life on Thursday and am 29 weeks 2 days gestational equivalent age today. I worked my way back up on my feedings and am actually getting 2cc's more than last Sunday, so I am up to 22. I weighed in at 2lbs 6oz today. I am still on the ventilator, but my doctor has been letting me get my rest and grow a little more before we try breathing on my own again. Tomorrow is test day, so we will see how things go.

I want to send a Happy Birthday shout out to my God brother Li'l Nic, my Uncle Nick and my friend Nicole. It's like Tony, Toni, Tone, but instead Nic, Nick, Nicole...lol. Sorry I missed your party Li'l Nic, but thanks for the goody bag - I can't wait to play with my miniature Hummer truck.

The Roller Coaster

Well, I finally got to ride the roller coaster everyone was telling me about. There's a reason why they have those height requirements at the amusement parks, because the roller coasters are not fun for little guys. After taking my ventilator out on Thursday, I did really good breathing on my own Friday and Saturday. By Sunday morning, I was back on the CPAP machine and by Sunday evening, back on the ventilator....ugh. My doctor's think that I am catching an infection because my white blood cell count is high and my heart rate was hovering around 215bpm. So now, I had to pull back on my feedings, get a blood transfusion and start taking antibiotics. Worst of all, I had to get an IV in my forehead, because they couldn't get any good veins in my little legs or arms. Ok, not cute at all. Don't worry, Mommy is ok with it....well, now she is but it took a day to get used to it.

Today, things were back on the upswing and everyone is feeling a lot better. The doctor said that this type of episode is normal in preemies and that I am blessed that it took this long before I ever had one. Once my weight increases and I get to be around 34 weeks (gestational age), things should really start to stabilize. I am 28 weeks and 3 days as of today. They started my feedings again today and my weight was 2lbs 1oz. We are going to work on slowly decreasing my ventilator settings until it looks like I might be ready to try breathing on my own again. Thanks again to all of you for continuing to check on me and for your continued prayers. Me and the family really appreciate it.

I Love a Challenge

Well, I didn't want to wait until Saturday to meet the challenge that the doctor gave me, so I decided I would work on my breathing really hard this week and it paid off. Today, they took me off the ventilator! I am now breathing entirely on my own but I am getting oxygen through a high flow cannula. So far, my oxygen saturation tests are good, so we are praying for that to continue. Mommy is really happy because she got to see me for the first time with no tape on my face. I won't show you that picture because it was a face that only a mother could love. The tape made my face a little wrinkled and funny looking from being on so long (but still cute).

My weight has gone down a little (1lb 14oz) due to the diuretics given to ward off the fluid retention brought on by the steroids, but I am still eating well and will regain the weight in no time. My nurse told us that I also have a hernia that will have to be repaired before I go home. It is something that happens occasionally in babies, and especially preemies because the muscles are not as strong as they need to be. It doesn't seem to be any big deal, so no worries.

Today, I weighed in at 2lbs 2oz, but some of this weight gain may be due to fluid retention from the steroids. Whatever, it still looks good on paper...lol. I have been doing pretty good this week, so my nurse decided that it was time for Mommy to hold me again. We had to be really careful because of the ventilator, but we made it. Gotta love my little hat. Needless to say, it was a good day for us.

Happy Monday!

Monday is usually test day around here, but thanks to all of our veterans - testing is postponed until tomorrow. Happy Memorial Day! I am still holding around 2lbs and eating well. Two exciting things happened on Saturday. I started getting some Human Milk Fortifier added to my meals to give me some extra nutrients and calories. I also started getting my steroid series to help my lungs develop. In the first 48 hours since I started, I have slowly started to wean off the vent. I am doing more of the work, instead of the machine. One of my doctors challenged me to totally wean by Saturday, so that is what I am working toward. My Grandma took some pictures of me today, so I should have some new ones uploaded some time this week.

Eatin' Good in the Neighborhood

We are celebrating my first weight gain milestone today - 2lbs!!! We are thanking the Lord that I am able to tolerate Mommy's milk because it really helps me grow. One of my buddy's here is not having so much luck in this area, so we are really blessed because digestion problems are common at this age. My respiration is another story. Seems that my lungs are not developing as fast as my doctor's would like, so they are going to help me by giving me a series of steroids starting tomorrow. These steroids have been shown to have a few undesirable side effects , but that was studied in longer term use and with much higher doses than what I am going to get. We do believe that the benefits definitely outweigh the risk and I am sure you know that my Mom has done her research and she is cool with it. I am not a fan of the ventilator and long term use can lead to lung damage and dependence. We are prayerful that everything will be fine and I should be breathing on my own within the next 7-10 days. Other than that, everything else is going well.

I have heard from so many of my blog followers and I just want to thank all of you for continuing to keep us in your thoughts and prayers. We are true believers in the power of prayer, so please continue to keep us in mind. Thanks again and have a wonderful and safe Memorial Day weekend.

Peace and Quiet

Yay!!! My noisy neighbor is gone, so now I can get some rest. Today, I am 1lb 14oz and taking 7cc of milk every 3 hours. I go up 1cc every 24 hours, so now I am getting almost 2 ounces of milk a day. My doctor is very pleased with my eating and digestion, but she is becoming a little wary of my dependence and hesitance to wean off the ventilator. They are playing with the settings to encourage me to work on my own again and hopefully I will be able to get rid of the vent by early next week (please pray for me). This will make Mommy happy, because she can't hold me when I am on the ventilator. Other than that, things are well.

Getting Bigger

Things are pretty quiet on our end, except for my new neighbor. I really feel sorry for his parents if he cries like this when he gets home. Today, I am up to 1lb 13oz and am feeding 4cc every 3 hours. To put this into perspective, I am basically getting 1 ounce of milk a day. There are 30cc's in an ounce. As long as my digestive system keeps tolerating the milk, I will continue to get more.

Just Chillin'

Today was a pretty restful day. Well, I tried to rest as much as I could with this new hollering baby that came today. "You're in good hands dude, relax." I lost an ounce, but not to worry. I am getting twice the amount of milk now - a whopping 2cc every 3 hours. It won't be long before I am at the big boy table. The weight loss is probably attributable to the diuretic that they gave me after the blood transfusion. I did get another blood transfusion today because some of it leaked out last time.

Take a Break

Today, I gained 2 ounces, so now I am 1lb 11oz! My Mommy's milk is really helping me to grow. After being off my ventilator for 8 days, I need a break. Breathing on my own takes a lot of energy, so my doctor put my back on my ventilator. Don't worry, this is a normal occurrence for little guys like me. In fact, they said they were surprised that I lasted that long. After a couple of days, my lungs will have developed some more and hopefully enough to keep me off the ventilator for good. My nurse wanted to give Mommy some practice, so she let her change my diaper for the first time. I asked her not to take any pictures of this momentous event because I might want to be Mr. Illinois one day and wouldn't want those pictures to hurt my chances...lol.

What is Going On?

Today, I gained 2oz so now I am almost back to my birth weight, 1lb 9oz. My morning didn't start off too well. My lung xray showed that I was not using the full capacity of my lungs and this worries my doctor a little. My hemoglobin was a little low, so I got another blood transfusion. I also am showing signs of slow digestion, so they stopped my milk feedings. Good grief. Nothing major, but I just don't like having days like this. I vowed to fight back and was at least able to get my feeding privileges back by the evening. Now that's more like it.

Testing, Testing 1, 2, 3

I've gained about an ounce over the last 2 days, so now I am 1lb 7oz. I am 1 week old today and that means that I am taking all of my tests again. I also had to take an stomach xray to make sure I am not having any problems digesting the milk. And again, I passed with flying colors. This makes my parents really happy.

Happy Mother's Day!

Well, today I helped my Mommy celebrate her first Mother's Day. I made her a card and put my feet print on it. I know she loved it. I was also able to give her one of the best gifts in the world today. Because of my good behavior, my nurse let Mommy hold me for the first time. We did the Kangaroo Care hold - this is where the baby is placed on Mom or Dad's bare chest. The skin to skin contact has been shown to help infants gain weight faster, have more restful sleep and fewer episodes of apnea. Research has also shown that it also provides the baby with a feeling of protection and comfort and will help increase milk supply in breastfeeding mothers. I also had my PIC line placed today. This is a is a form of IV access that can be used for a prolonged period of time. Regular IV's have to be replaced often and have a higher risk for infection than PIC lines.

Yummy, Yummy for my Tummy

Mommy checked my weight today because people kept asking about my weight gain and she was surprised to find out that I only weighed 1lb 6oz. The doctor explained that this is normal and that all babies lose weight in the first few days. In fact, losing weight is a good indicator that my kidneys are working good to help get rid of some of the extra fluid that babies have at birth. As promised, Doc let me get a taste of Mommy's milk today. I started getting 1cc every 6 hours but progressed to 1cc every 3 hours by the end of the day. My digestive system seems to be tolerating the food, so everyone is happy.

Miss You Mommy

My Mom is going home today - I am going to miss her, but I know she will come see me everyday, so it's ok. Because I did so well on my testing, I am getting ready to move onto bigger and better things. My doctor removed one of my two umbilical catheters today and said if I was good overnight, he would let me have my first meal. Good, because I am starting to get sick of this Gatorade looking IV fluid that I've been getting. You know, it's kinda like hospital food. It's ok at first, but after a few days, you need something different.

School Already?!?!?!?

Boy, oh boy. I thought I didn't have to start school until I was 5, but you wouldn't know that considering all of the tests that I had to take today. I had an ultrasound to check for cerebral bleeding, an EKG to make sure the ticker is working properly, an xray to make sure my lungs are ok and a host of other blood tests. The wonderful thing is that I think I am going to be a rocket scientist like my Mom, because I passed everything with flying colors!!! Go Kyle, it's your birthday.

Like a Vampire

Not too much excitement today, which is a good thing. I got a blood transfusion today because my hemoglobin was low - another "preemie thing".

Easy Does It

Well, I made it through my first 24 hours and things are looking pretty good so far. The steroid injections that my Mom got to help develop my lungs last week are definitely helping. My doctor is taking me off the ventilator and I will be using a CPAP machine and getting oxygen. This is awesome, because I am not really a fan of that ventilator. The first 48-72 hours in a preemie's life are considered the "honeymoon" phase because it is usually the calm before any storms. Kinda like getting married, but what do I know....

Hello World

After 3 weeks of bed rest and a weekend of contractions, I decided that my Mommy had enough. I was ready to make my entrance. At 11:26am, I greeted my Mom and Dad. Because I was only 24 weeks and 3 days old, I only weighed 1lb and 10oz and was 12.5 inches long. Although the parents were happy to finally meet me, they were a little worried about my early arrival. Luckily, I have a wonderful team of doctors and nurses that are doing everything to help me make it through difficult time. I am stable, but I do need a little help with my breathing, so they have me on a ventilator. My small size awards me the right to be called a Micro-Preemie, a baby that is under 1 3/4 pounds and is generally born before 26 weeks gestation. The next couple of months will require a lot of medical intervention, but I am ready for the fight. Some of the many difficulties that a micropreemie experiences are immature lungs, an underdeveloped digestive system, cerebral hemorrhaging, high risk of infection, incomplete feeding reflexes, severe anemia, neurological delays, physical handicaps, and long term health issues. Because of so many problems associated with being a micropreemie, medical intervention to keep micropreemies alive include biliblankets, blood pressure monitors, cardiac monitors, endotracheal tubes, isolettes, intravenous pumps & tubes, nasal CPAPs, nasal gastric tubes, nasal prongs, oxyhoods, oxygen saturation monitors, phototherapy lights, pulse oximeters, respiratory monitors, synthetic surfactant, temperature probes, UACs, ultrasounds, UVCs, and ventilators. Whew, say that 10 times real fast.