The Roller Coaster

Our time in the Nicu by far was the hardest time of my life. Everyday there seemed to be something new, something that could change the entire scene. Just when the babies seemed to be doing better, along would come something else that seemed to smack us in the face. I would sit by there Isolettes everyday watching other babies come and go, and wish it was our turn. All the nurses there would you a quote that I truly hated, "The Nicu is a roller coaster, there are always ups and downs and you never know whats around the corner." I hated that expression, I really did, but there is no better way to describe your time there.
There were things that happened there that I don't think I could ever forget, the things we saw, the feeling we had and the friends we've made. I really believe that everything happens for a reason, I'm not too sure what the reason for us being there is. I really can't wit to find out the answer. Sometimes I think that it was to build our faith, or to help others, or to volunteer it could be anything. I just know I will never look at a sick baby the same, or hear of a premature birth that won't make me think of us, or when you hear of someone losing a baby I saw it happen. I will never take my life or my children's lives for granted. One second the babies there were fine and next thing you know there would be a team around the bedside, and you just new it wasn't good. I have a lot of guilt for leaving the Nicu with all of our babies. There was a woman who was pregnant with quads and she left with one, there was a girl I went to school with who had a full term beautiful baby who passed after two months of being in the Nicu. Here I am with 3 babies that were born 16 weeks too early who weighed less than 20 oz, who had every odd against them, they weren't even predicted to live through the 1st night, Here I was with all of this and our babies made it...why? Not that I'm not happy that their here. I just feel so guilty. When we took Ryan home (he was the last to come home) I walked right out of that Nicu, I never looked up or around I just cried as we left. I know how it felt to be in the other rooms watching other parents leave with their babies, just wishing that it was us. All I felt was guilt, how could I feel guilty when for 4 1/2 months all I wanted was to take my babies home. I still cry every couple of days, like why did our babies make it when others don't. I don't wish they didn't but how do you make this guilt go away?
Some of you have asked what exactly did the babies have when they were there. A few really thought the only reasons they were there was because they were too small to come home. I figured this id the perfect opportunity to give you some of the details....

Dylan Gregory

Born at 24 wks, 1 lb 3 oz, 12"

Prematurity

Extremely Low Birth Weight

Multiple Gestation

Respiratory Distress/Failure-now resolved

Patent Ductus Aeteriousus (PDA)-indocin x2 courses

Patent foramen ovale (PFO)

Apnea of Prematurity

Hyponatremia-now resolved

Anemia-PRBC/multiple blood transfusions given

Necrotizing Enterocolitis (NEC)-had appendix, 5% of colon and 5cm of bowel removed. Stoma given 2/22. 4/11 reanastomosis

Retinopathy of Prematurity (ROP, eyes)

Hypoglycemia-now resolved

Immature Feeding Pattern-now resolved

Ryan Andrew

Born at 24 wks, 1 lb 3 oz, 11 3/4"

Prematurity

Extremely Low Birth Weight

Multiple Gestation

Respiratory Distress/Failure-now resolved

Patent Ductus Aeteriosus (PDA)-indocin given-now resolved

PFO

Apnea of Prematurity

Anemia-multiple blood transfusions given

Retinopathy of Prematurity (ROP, eyes)

Hyperkalemia-now resolved

Immature feeding pattern

Hypertension

Marginal Hearing loss

Ava Jane

Born at 24 wks, 1 lb 2 oz, 11 3/4"

Prematurity

Extremely Low Birth Weight

Multiple Gestation

Respiratory Distress/Failure-now resolved

Staph Epi Sepsis-now resolved

Patent Ductus Arteriousus (PDA)-Ligated 1/8/08

PFO

Immature Feeding Pattern

Apnea of prematurity

Hyponatremia-now resolved

Anemia-multiple transfusions given

Necrotizing Enterocolitis (NEC)-medically treated

Bilateral Intra-Ventricular Hemorrhage grade 2. (brain bleed)

Microcephalic

Inspiratory Stridor-bronch on 4/18

Hemangiomas

Bilateral Ovarian Cysts

Right Subependymal cyst (cyst on brain)

Mild Subglottic Stenosis


So this is the small generic list, there is so much more. Now with the babies having all of these things can you even imagine the things we seen happen? I've seen it all. I was there through all of it. I watched them put in and take out breathing tubes, blood transfusions, I saw them unblock Dylan's stoma with a long pipe cleaner, we have seen all of the babies turn completely blue, with no heart rate, we watched as the nurses would bag them and bring them back to life. I really don't know how I watched all of this, but we did. The one time that sticks out the most is when Ryan decided he didn't want to breathe anymore. He stopped breathing, his heart rate went from 246 down to 17 then to 2 then nothing, the nurses were frantic. All of a sudden there was at least 20 people in the room working on him. I just stood back and watched, praying that he would just breathe. It took 6 different people and an hour and a half to get his breathing tubes back in. He was blue not just blue but the purple-blue you see in the movies. They picked him up to turn him, and he just flopped, his little arms fell down there was nothing to him. I really believed he wasn't going to make it though this one. The Nurses kept trying to get me to leave the room, there was no way I was leaving. After the episode the NNP came up to me to let me know he only went completely without any oxygen for about 2 1/2 mins, your brain doesn't start to loose anything until about 4 mins. I just cried.
When Dylan became sick with the NEC, they let us know ahead of time that alot of babies that get this don't make it. His bowels actually perforated and was spreading ecoli through his body. Before he went to surgery they told us that they had a room empty so we could say our goodbyes there, that way we could take all the time we needed. That was the longest 3 hours in the surgery waiting room.
There were many times in the Nicu that we almost lost our babies. Greg and I started to make arrangements for burials a few times. We were even told that it was cheaper to have them cremated, but for some reason they are still here, and I thank God everyday. It really could have been so much worse. Like I said before, it is truly amazing that they are alive. Even the Doctors have said these babies are miracles. They never thought they would have made it out of the nicu and even if they did they would be extremely sick. Guess these babies showed them. Our little fighters! I think that is why I feel so guilty, babies that should make it sometimes don't, and ours did. Life isn't always fair, there is a reason for these babies to be here.
I am now a firm believer in the old saying "What doesn't kill us, will only make us stronger."