Home at last!!!

We have been in a state of shock since our discharge from the NICU last Friday. Just trying to convince one another that we have everything under control without worry at all. I know we are doing great though. We are so happy to have him home we don’t know how to express it. This must be what it is suppose to feel like when two happily married people bring a baby into the world.

We had a rather large hiccup our first day of trying to be normal parents but luckily I am married to superman and all is well. If any of you reading this have ever been in or around hospitals much you know how “things” can and often do go wrong. Upon our discharge we were handed information on Kynian’s aftercare including all of his therapies he will need, his medical summaries (which are endless by the way), and other information we might need. We were then asked if we had any questions. The only question I had was about his feeding. You see many of you may not completely understand this feeding situation that Kynian has, let me explain. Kynian does not have a problem with apnea, many preemies do. He does not have a problem maintaining his temperature as long as he is clothed and wrapped up well, many preemies have that problem. Kynian has a very severe problem with aspiration while eating. This is very serious because aspiration can cause death, and we have used the oxygen mask and watched Kynian turn blue more than once over it. So in taking him home this is our biggest fear. He is on breast milk, a fortifier for more calories to help him gain weight faster, and simply thick. He is on the thickest form of simply thick there is. You may have heard of this, it is used in nursing homes quite a bit. It makes the breast milk like a really thick milk shake. I still don’t know how he sucks it out but we have a special nipple on the bottle that helps him. Kynian has a problem with falling asleep about half way through drinking his bottle and when this happens if there is milk in his mouth he forgets to swallow it and he chokes. So feeding him is a very serious process. We have to concentrate on reading Kynian very well. We learned a lot in the hospital but we always had a monitor to make sure everything was ok. Now we just have to read Kynian’s face and his coloring. Ok now that I have explained all of that the hiccup came when we left the NICU and I asked my question about his feedings. I asked where could we get the simply thick. They sent us home with enough to last us through the night but told us we could get it at any drug store in the morning. Ok no problem right? Well morning came and guess what we called every pharmacy in Dallas no one carried it, not in the gel form, which is what we needed. Well since this is the only way Kynian can eat without choking to death it is pretty important to have. When we realized this was not going to be easy to find I started to have a mini panic attack. Preemies have to eat very often or they can become lethargic and have to be taken to the emergency room. So after searching for the simply thick for four hours and Kynian not eating for almost 5 hours when he normally eats every 3 I was starting to really panic. The last thing in the world I wanted to do was take Kynian to an emergency room. Travis finally found a medical supply company in Frisco (which was 30 miles away) that carries the simply thick, he rushed there and back in less than 45 minutes and got our baby his food. Kynian took a while to eat it because he had become lethargic but we got it down him and now we have enough to last us at least a month. We take a lot of precaution in feeding Kynian. Sometimes we have to get up two and three times during a feeding to change his diaper or at least pretend to change it to help him wake up so he can finish.

We have our first pediatric appointment this Wednesday to make sure his progress is going well. I am not exactly sure of his weight but I think he about 6 pounds. Travis and I have equipped Kynian’s room with as much as we possibly can to help him in his development. In the last several days we have learned that Kynian does not like the dark, he has to have a night light on. He poops while eating, and as I said before falls asleep often while trying to eat. He gets cold easy so we have purchased even more blankets to wrap him with. He really likes to listen to classical music and be held. He is not that interested in our dog Winston, but Winston is fascinated by him, and jealous. He loves rocking in his baby swing, and watching his mobile above his crib. We have also learned that he is the sweetest baby on earth. He only cries when we change his diaper, and that’s about it. He loves to just look around or sleep. We have felt like real parents. Apart from the obvious precautions we have to take because Kynian is so fragile we are settling in just perfectly and are so happy we smile at each other a lot. I forget where we are a lot when I wake up in the middle of the night for feedings but when I realize we are home I am continuously overwhelmed by happiness.

Day 103

I am a person who does not easily need or share myself. Many times in life that has not served me well, and there have been other times in my life that these traits have sailed me ashore. Those of you reading this that know me know something else about me. You know that behind my collected demeanor lies a very breakable sadness for the cruelties of life and my own weakness in denying them. I admit my inabilities when in trouble to seek help, and I fear many events may have gone quite differently had I done so. People say having children changes everything, I suppose if nothing else, I know for certain that to be true now. Having Kynian in the way that we did, going through all that we have with him, and the rode that is still ahead of us has shown me what it is to truly need. It has shown me what God intended when he gave us the church, our extended families. Kynian is the best part of myself, the good and none of the bad. He is the combination of what is Christ in Travis and I. In having him I have learned so much. Our gratitude to all of you, all of those who have cried with us, prayed for us, and been so diligent in your encouragement and love we cannot be more grateful. There are not words and there are not emotions that grasp our knowledge of what it has meant for so many to have held us up while we could not do so ourselves. For some reason “thank you” sounds so small, but it is all that we have. Thank you all from the bottom of our hearts for your love. We, I have needed it so very much.

Today we are being discharged at 2pm. Today Travis and I will take our bags, our endless packets of information, and our baby Kynian straight out that door labeled exit. We will then ride the elevator to the first floor where we will get out and walk to the parking garage. At that point we will walk to our car and put Kynian into his car seat. We will all three get into the car and we will all three drive away from this place together, a real family at last.

Day 102

Kynian had a great day. We are talking about when we are going to be discharged I know it is going to be very soon. Kynian passed his car seat test last night with flying colors. Travis and I went through our CPR training today and have met with the entire specialist team for his aftercare. Kynian also had his eye exam and everything still looks great. He did not pass his hearing screen but they said at this stage those screens are more often than not inaccurate, and trust me I talk to Kynian all the time he can hear. He is going to have a lot of people looking in on him when we leave and our lives will be filled with many doctors appointments for a long time but that all sounds just fine with me. Travis took care of having a cleaning service come out to our house today to clean the carpets and vents. They even put in an air vent system special to people with breathing problems. The nursery is ready so we are just waiting for the green light.

Day 101

I woke up this morning with one arm completely asleep somewhere behind my head, my legs in very unnatural positions tucked behind me, and my face planted in the crack of the most uncomfortable recliner you have ever sat in. At least they say it is a recliner, but it does not recline. I found this out abruptly when I decided to lean back with my feet up and crazy me but I was not expecting the sudden jolt of the chair springing forward just as I relaxed myself back in it. Apparently it wants its occupant to put their legs up but not lean back at all. So while sleeping in it one has to get in a very crouched angle and try to maneuver all body parts into separate puzzle pieces in order to maintain in the chair and not end up on the floor. Although if not for some very strange looks the nurses would have given me when they came in last night I might have opted for a spot on the tiled floor. After turning off my alarm that had been set only 2 ½ hours earlier I rubbed my sleepy eyes and found Kynian wide awake in his crib just looking around, observing his surroundings. I smiled at him and he just looked at me with those big deep brown eyes. He is such a sweet baby. The nurse brought his bottle about 5 minutes later and I fed my son. It was his 9^th bottle in a row.

I was then relieved of duty for 2 hours by my mom. I went home took a very needed shower, gave our dog Winston a bit of attention, and headed back to the hospital. I was almost out the door when my mom called and said the doctor had told her that I needed to bring the car seat back with me. I couldn’t believe it. I know this doesn’t mean a lot to those of you who haven’t spent a lot of time in a NICU but these are words Travis and I have heard spoken to other parents and longed to hear spoken to us. Today was that day, the bring the car seat day! A day I thought perhaps was only something that happened to everyone else that came through here, not today though. Today it was our day. Tonight we will do the car seat test. This is where they examine the car seat and then put Kynian in it for 2 hours. He has to maintain his saturation levels and heart rate the whole time so they know he can sit in that position without having bradys or apnea. Tomorrow they will test his hearing and do his last eye exam. After this we are going to talk about exactly when we will be discharged. That is still something that I can’t imagine doing. What will that be like?

I once thought Kynian would never be in the real world or at least some part of me feared he wouldn’t. Today I am so close to actually seeing such an event but still I cannot picture it. I suppose the vast amount of uncertainties that surprise us in life are the ones that we can so often not visualize. Soon I won’t have to wonder I will know what Kynian looks like in the light of the outside, not in hospital lighting. He will look beautiful and I can’t wait to see it. I will not spend too many more nights in this “recliner” and I will not spend too many more days eating this “food”, and I will finally know what my son looks like in natural sunlight.  

Video

I love seeing Kynian's entire face with nothing on it. I find myself the past two days having a minnie heart attack each time I look at him in his crib, I think oh no he doesn't have anything to help him breathe or he's pulled out his NG tube again. Then I remember he doesn't need those things anymore.

Pictures

Day 100

It is hard to believe we have been in the hospital for 100 days today. Hard to think of doing any one thing for 100 days, but we have. I look back on that first day having thought this was a never ending ride, and I think huh we’ve just about done it. Kynian has been moved to try all 8 bottles today, he has already eaten 4 and if we can do that for the rest of the week and he can get 2 negatives on his swab test for influenza, we can go home. It is strange to think less than two weeks ago I was thinking the same thing and then he got H1N1, but not this time. This time we are really going to walk out of here, I just know it. Its either going to have to be that or some very pricey equipment is going to be missing and potentially some nurses that end up stashed in Kynian’s closet. I just don’t think we could bare staying in a hospital any longer. Oh I know we could if we had to, but I do believe we are being blessed enough to not have to.

Because of Kynian’s immature swallow he has to have something in his milk called simply thick, he is on the most concentrated formula of this. It makes the milk like a milkshake, this way he doesn’t aspirate when he swallows. This will mature over time but not for a while. It has to be mixed in a certain way but because each nurse is a different person each nurse mixes it differently. This has caused Kynian some problems the past couple days. This morning I talked with them about it and got permission to mix them myself each time and give him all the bottles myself so it can be done the same each time. They agreed this would be fine. Well that doesn’t exactly mean much sleep for me so Travis and my mom are trying to help work out a schedule so perhaps they can help too. This way it will be at least given in the most similar way possible. I believe this is the best thing for Kynian and the quickest route home. Please pray we have strength to get this done, with Travis working it is quite the challenge. When we get home it will still be challenging as any newborn is but being in one place will make things so much smoother.