July 1st, 2012

RYAN IS HOME!!! He only took 138 days to graduate! When he had his surgery done on Tuesday the 19th, they told us recovery could take anywhere from a week to two weeks, but our little champion amazes us again. Recovery went great, and once they got him on a feeding schedule that Ryan and I could work with, he was sent home! The feeding tube monitor they sent home with us took a little while to get used to and even today we’re still working out the kinks in it. For the first couple days he was home he was not taking the bottle AT ALL. He was taking 10ml here and there, but it was looking like the shock of the new environment got to him. It's now a week that he has been home, and although he is not consistently taking full bottles, he is taking the majority of it as long as he is awake and ready. The only issue we have had in this first week is constipation. He hadn't pooped Sunday or Monday, and when Tuesday came around, you could tell it was really bothering him. It's hard to see him in so much pain and not be able to just tell the nurses to give him some meds to poop. After consulting with friends, family, the pediatrician, and the Walgreens pharmacist, we were finally able to have him poop using a suppository. He is still very inconsistent though so it’s something we are working on with him besides his feedings. Other than that, we are just enjoying finally being able to take care of him at home and not sleeping very much haha. Thank you so much to everyone who has supported us in these past 5 months. It really has meant a lot to me and Ryan and we look forward to being able to relax and enjoy life now.

Ryan is now 9 pounds 13 ounces!

June 19th, 2012

This may possibly be my last post before Ryan comes home!! Ryan has had a busy month so I am excited to be able to update all of you! Although I have something fun to talk about on a daily basis, I don't want to update you all on me just rambling nonsense things. So that being say, he is officially breathing all on his own! He has been off the oxygen now for a few weeks and doing great! His feedings with the bottle have gotten better, but after a few weeks, everything has plateaued. He is taking an average of about 40ml every 3 hours with an occasional 80-90ml.  Taking in this much is not going to help him grow and eventually he would start to lose weight. His NG tube remained in his nose because it helped make up for the lack of milk he was eating by mouth. About 2 weeks ago, I was made aware that possibly a G-tube was going to be put in place. I of course had the option to say no to this procedure, but when I was told it could get him home sooner, I looked more into it. Coming from a medical background per say, I understood what most of the medical lingo involved with it would entail. My main concerns were how infection played a role in this, as well as how easy would it be for it to become dislodged and fall out. All of possible questions you could imagine I had for the surgeon he answered very well and very confidently. After talking it over with family and friends, we decided to go through with the procedure; he needs to be at home where he is loved and we can work on his feedings with him. It's not that we don't love our nurses, but Ryan doesn't have a personal nurse to wait on him hand and foot like we will. So today, Tuesday the 19th, he had his surgery. Everything went very well. Along with inserting the G-tube, they were able to circumcise him. He was in a lot of pain when he got back to his room, but after some strong pain medication, he was knocked out. About 3 hours after he got out, he was wide awake for Ryan and I, and we even got him to smile a couple times. Although still in some pain, he’s staying very strong and it just trying to get through the day. We are so proud of him and everyone had nothing but great things to say! He will be able to start eating again tomorrow morning and tomorrow night we are able to start feeding him through the G-tube. Recovery can take anywhere from a few days to about two weeks. We are in no rush to bring him home being that we want to be confident we know how to use the G-tube, but we will be rooting for him and hoping for a fast recovery!

9 pounds 6 ounces

May 14th, 2012

Hi everyone! Where to begin!? Of course our miracle is doing great! He is in the last and final room that any baby can go to. This room he will defiantly be discharged from. He's been on the nasal cannula now for the past month; no more dealing with the cpap or vent. They have been weaning down his flow rate gradually being that this is the last step before he's working all on his own to breathe. I was also able to breastfeed! His natural instinct to suck is there, but he doesn't have the strength yet to take the milk. They have been bottle-feeding him every day for about the past 2 weeks or so (it’s easier to bottle feed then breastfeed for him). His goal is to get a full bottle (approximately 60ml), but he is only able to suck out 15ml to 30 ml before he gets too tired and poops out. His breathing isn't 100% yet, so with him bottle-feeding, we have to take it very slow because a baby’s natural instinct is to eat before breathing. Other than that, he is doing great. He is having more awake moments then sleeping so we are starting to see a little bit of his personality. Doctors haven't given us a day for when he will be able to come home, so as of right now we’re just waiting on little Ryan to show us that he is ready.

He is now 7 pounds 4 ounces!!

April 4th, 2012

Sleepy boy with is new CPAP

Sorry it has been so long since the last post! Ryan has been doing great! He has graduated twice now to two different rooms -- not due to a leaky ceiling. The room he is in now is generally the room babies are discharged from. He is also not considered to be in the Intensive Care Unit anymore, it is now called Intermediate Care.  He is still on the CPAP and is doing great! He was tried on the nasal cannula which is the next step up, but was unable to handle it. He was on it for almost a full day which gives us hope, but at this point, we are not trying to rush anything. He is now 4 pounds 1 ounce! Being so big, he was moved out of the isolate and into an open crib. It is sooo much better now with him out in the open because for one, he isn't so hot anymore, and two, it is a lot easier for us to take care of him. Ryan and I have become so much more comfortable changing his diaper and handling him which has been making us feel more independent in the NICU. We are so proud of our little guy and have nothing but high hopes for him! The nurse told me once he gets his respiratory down and is breathing all on his own, they will then focus on breast/bottle feeding -- something that I have been waiting to do since he was born!

March 18th, 2012

Well it has been a very exciting day today! Ryan is still on the CPAP and is actually doing a great job! They have been lowering the pressure rates every day and he seems to managing it just fine. He and his "pod mates" have been moved to another room due to a leak from the ceiling. Generally, when you move to the next room, it is because you "graduated" to a lower intensive unit within the NICU. Due to Ryan doing such a great job lately, the nurses tell us they don't think Ryan will be moved back to the high risk room; we just have to keep our fingers crossed that his lungs are developed and strong enough for him to keep progressing forward. He has been going down and up on his weight, but remaining near 3 pounds, and is now starting to progress and is almost 3 pounds 1 ounce. He also received his first non-bed bath from Ryan and I today! Although it was very scary with all of the monitors off, it was the best experience I feel so far we have had with him. He seemed very curious as to what exactly was going on with the water and rag, but he didn't get fussy or cry! I can only hope we will soon have the chances to experience all of these things in the comfort of our own home!

March 13th, 2012

Hello All!

Ryan is again doing a great job! Last post I had talked about the jet vent and why he was put on it. Since Thursday, he has switched to the regular conventional vent. His lung is doing good, but from here on out, they will be keeping a close eye on it. He has been doing great for the past few days on the vent, so they are trying him again on the CPAP today. I had called around 11:00am, and the nurse said they had just put the CPAP in at 10:00am and that she didn't think he looked comfortable. Most likely when I call again in a few, the vent will be put back in; I am hoping Ryan comes around though and that doesn't happen. He also has switched into a new incubator. The one he has been in is more for temperature control, but since he is now 3 POUNDS, he can maintain his own temperature and is usually hot - - just like his dad. Soon the nurse said he will be able to switch to an open crib! For now, we are just hoping his breathing gets better so he can get all the tubes out of his mouth/nose. When he is awake, you can tell they really bother him :(

March 6th, 2012

We snuck in a picture of his face

while they were changing his tubes

Happy 4 weeks Ryan!!

Well it always seems like when I have too much good news, I hear bad news. Although the ventilator is helping Ryan to breathe better, it does come with its risks--one of which being Chronic Lung Disease. This is not a disease and is characterized by general lung damage. Having the tube constantly down his throat has affected his right lung. A few days ago, his lung was showing signs of collapsing and he had to be switched to a jet ventilator. This jet ventilator supplies constant air pressure to his lungs so they don't have a chance to fully expire. This also in turn helps with the damage the tubes are causing because the tubes are not rubbing on the walls of his lungs. They have him lying on his left side for now to let his right lung expand back up. After a couple of X-rays, his lung is back to normal and he is doing great. Although there is still some damage, his lungs are still very immature and overtime as his lungs continue to grow, the new lung tissue will have more power to make up for the damage. He is getting little doses of morphine to help with the pain from the damage. Although you obviously do not know he is in pain, their sure the damage and stress from the lung isn't comfortable so the morphine will help put him at ease. He seems to be back to his normal self being very active and there is already talk of getting him off the jet ventilator.

On a brighter note, Ryan is now 2 pounds 14 ounces! This means he is only 4 ounces away from 3 pounds! We also weighed him before he was able to poop, so it may have contributed to extra weight. Haha. Either way, Ryan and I are very excited our little buddy is doing so well in that area.