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.