How it all started:
I was only 20 with two other children a 3 year old and a 1 year old. I was doing what any typical young mother would do, working two jobs going to school and trying to save up my money to eventually be able to move out of my moms house. July 2010 changed a lot of things for me, for one my mom received an eviction notice and we were informed we would have to move out by July 18th and for another reason, I found out I was pregnant... again.. With my 3rd child....at only 20... WHILE ON BIRTH CONTROL!!! I knew I had a very hard decision to make, should I keep this baby or should I do something I could never bring myself to do. Needless to say I decided that my baby had a purpose and somehow someway everything would work out for me. I started my pregnancy out right, I actually did everything right. Until one day at work I started bleeding, it was only light bleeding but I immediately called my obgyn and they asked for me to come in. when I got there my due date of 3/30/11 was changed to 4/7/11 (my birthday) and everything was great with my baby not one issue!! As time went on I actually became homeless and had to live from house to house but I made it and got by. I had to drop out of school and quit one of my jobs due to the fact I had no baby sitter for my kids much less a home to live in L. It was a very hard time in my life but I found a wonderful friend who took me and my kids in! On November 9th 2010 I moved in with them friends and actually that marks the day I started having major complications in my pregnancy. A few weeks before I was experiencing a ton of pain but now bleeding? So I went into the hospital all for them to tell me the baby is fine and to just take it easy bleeding can be normal while you're pregnant. So that's what I did but the bleeding continued and progressively got worse. i went for my ultrasound at 20 weeks and found out my baby was a boy and also that my placenta looked fine and they had no idea why I was bleeding. Over the next few days I was in and out of the ER many times and ended up back at my Drs Office for my weekly appt. the dr at that apt, checked me and I was 2cm dilated and he immediately sent me to the hospital and took me out of work. There AT THE HOSPITAL THEY DID NOTHING!! Sent me home and said I was fine. I remember one day I went downstairs to use the bathroom and my room mate was in there so I knocked on the door then she said omg. I had a puddle of blood on the floor at my feet. She cleaned me up and called an ambulance all for them to send me home and put me on complete bed rest,,, I couldn't get out of bed unless I had to use the bathroom. I couldn't even sit up to eat LI then made it to my 22 weeks and had another ultrasound which showed my baby had very little fluid, that's when I found out no matter what I was going to have a preemie. The dr that day told me that chances are the baby wont survive the pregnancy and their main concern was me but if I did make it to 24 weeks they'd send me to a high risk dr and I would receive steroid shots to help mature his lungs. I made it to 23 weeks exactly and ended up being admitted to strong memorial children's hospital for passing 8 blood clots all of them bigger then a golf ball!! I got my steroid shots and actually made it in the hospital 10 days.
A miracle was born:
On December 18th 2010 the ob Drs Came into my room to give me my nightly stress test but that day was very different. My baby boy wasn't moving, the Drs Left the room without saying anything at all. I actually remember laying there and thinking to myself wouldn't it be crazy if my son was born tomorrow on his sister's birthday. I told myself no way I can make it a few more weeks. Part of me was ready to get this done and over with, face my biggest fears giving birth to a micro preemie. My body was physically exhausted and as much as I told everyone I can make it on bed rest until 28 weeks I new I couldn't. I was in so much pain and my blood wasn't circulating anymore. I even had to wear these things on my legs that help circulate your blood so I wouldn't get a blood clot. The next thing I knew a nurse was in my room telling me that I was delivering my baby tonight and if I needed to call someone I should call them now. I called my mom and told her to get here NOW they were delivering the baby tonight, she was crying but got there just in time to scrub and go to the or. I was so scared knowing that I could die on the table giving birth to my son who was just on the cusp of viability. They moved forward with my emergency c section. After a few minutes my baby was out. He never made a sound. I didn't realize he was even out until my mom went over to the window to take a peak. That whole night was a blur. When they went in my placenta was almost fully abrupted, the baby had no fluid and I had an infection in my uterus. The nicu dr came in and told me, your baby isn't doing well; it took over 15 minutes to resesutaite him, were bringing him to the nicu and all we can do is wait and see.\
Kaedin Isaiah Gabriel Meyer was born on December 19th 2010 at 24 weeks and 3 days at 12:57 am weighing 550 grams (1lb 3oz) 11 inches long.
The decision no parent should have to make:
That night was the longest night of my life. I was hoping and praying everything would turn out okay for my baby Kaedin. My mom stayed with me until 4am put then had to go home to be with my other two children. At the time I was receiving blood transfusions and antibiotics because of the fact Kaedin and I were both septic. I tried to get some sleep that night but couldn't, all I could think about was my little Kaedin. I finally started to doze off at about 530 that morning but ended up getting a knock at my door from a fellow that needed my signature so they could give Kaedin a blood transfusion. He told me the baby wasn't doing well, he couldn't keep his sats up and continuously was coding, his blood pressure was very low and his meds were all maxed out. They were hoping the blood would help him perk up. He told me unfortunately things aren't looking good right now but I should really try to rest.
I went to see Kaedin for the first time 11am that morning. When I got to the nicu his nurse Meagan tried to explain everything to me. She told me he was very sick, they thought almost every bone in his body were broken (they weren't), he had a very large brain bleed (grade 4). Ill never forget looking at him for the first time. He was the smallest human being I had ever seen in my life; his skin was red and very thin, you could count each and every rib, his legs were like pencils, his hands were smaller then my finger tip, his ears weren't even fully developed but yet had a full head of hair. This tiny little baby was the scariest but yet most beautiful thing ive ever seen. She told me how his blood pressure meds were all maxed out and he still couldn't keep his bp high enough. to go back to my room and rest, they'd come get me if they needed me. I went back to my room and called my mom and told her to come up to see us. I finally started to doze off and about 3pm I got a knock at my door and I was told I needed to come hold my baby and say my goodbyes. I cried and tried calling my mom but she wouldn't answer, I asked them how long they thought he had and they said maybe 3 hours. I somehow got out of the bed and into the wheelchair and I grabbed my two rosaries. As they pushed me down the hall I was screaming, crying and literally hitting myself. It was the worst thing a mother could possibly hear, your child who isn't suppose to be here yet isn't going to make it. As I reached the end of the hall my mom was there and asked me what happened. I somehow formed the words "they said he isn't going to make it". We got to the nicu and I remember looking at his blood pressure and it read 12/8.. He was literally almost gone. The Drs and nurses asked me to shut the oscillator off and hold him and let him go, I told them no im not holding him and letting him go I needed to think things through. I stood up and peeked into the isolate and seen Kaedin lift his little arm and wiggle his fragile legs at that time I looked at my mom and asked what do you think I should do? I said what you feel in your heart, not what you want to feel but what you really deeply feel because I feel he's going to make it. She said to me I do too. I told my nurse you leave my baby in that bed, I want everything done for him and there is no way im going to give up on him. She said ok would you like to baptize him? We had him baptized and switched him to the conventional ventilator. They but him on my chest, I held him with only one hand on my chest my finger tips on his head and my palm on his butt/legs. The dr came around and told us miracles do happen but he didn't think one was gunna happen in our case, he told us to pray for a miracle. I swear it was like something out of a movie I told him "Kaedin im your mommy and I love you, I will fight with you as long as you're here fighting too, I will be here everyday with you until your home where you belong", Kaedin opened his eyes and looked at me and I instantly cried. We got him back into his bed after about an hour of holding him. They got another blood gas and the Drs Came back and said the blood gas looks a lot better; I think you may have your miracle. I didn't realize I was in for the ride of my life, on this rollercoaster called the nicu.
the beginning nicu days:
our rollercoaster has started, the ups and downs that no one understands unless they've been through it. Kaedin made it past those 3hr they gave him to live but could he keep defying odds? Kaedin was able to stay on the conventional ventilator for 6 days the 1st week he was born. That week he was able to come off his blood pressure meds completely and continued to keep his bp stable his self. I helped them change out his bed the day after Xmas and held him only in the air on a blanket for about 5 mins until he needed to be bagged. That night Kaedin was put back on the oscillator... The oscillator is a vent that gives you over 600 breaths a min and always keeps your lungs open. But before he was put on the oscillator they noticed something funny on the chest x-ray. His right lung always appeared collapsed. More research and a few days later we found out his diaphragm is paralyzed along with his left arm/hand. He had pherenic nerve damage from the way they delivered him which left him with brachial plexus palsy. They thought your nerve damage was spinal but thank god it wasn't. Kaedin had many blood transfusions and platelet transfusions the 1st few weeks alone he had at least one a day. Everyday was a bad day for Kaedin and it was the hardest thing watching him struggle hoping and praying we made the right decision. Kaedin had his second septic infection at 10 days old and was put back on antibiotics. It was the same thing everyday with him bad gases and multiple chest x-rays. He had a pulmonary hemorrhage at 12 days old, it was very scary seeing your child bleeding from his lungs and them saying there's not much they can do but wait and see what he, does. His o2 was at 100% and his vent was maxed out but he pulled through. He had his 1st case of pneumonia at 2 weeks old :( by this point he had already had 3 infections, had been reintubated 4 times, bagged a few times a day, couldn't eat anything, and also were on pain/sedation meds since the day you were born. On day 18 they thought he had a kidney infection but all test came back normal. The next day they took him off the oscillator but it didn't last long the next day he was put right back on it because of another pulmonary hemorrhage :( from then until one month old he had another septic infection.. They did follow up to, his head ultrasound and found out there were no cysts and the bleed stopped! That was the best news we received in the longest but good news didn't last long.. Kaedin coded taking 10 mins to get his heart started :( it was so hard not being able to be with him that night. The following weeks stayed the same Kaedin always had bad days.. They did his 6 week ultrasound and had more bad news pvl developed from his brain bleed (pvl are cysts that form in the brain aka (brain damage). He also has a rare neurological disorder called porencephaly.Then the Drs asked me the question I heard all too often when can we stop treating him?
My talk with god:
Sometimes that was a question I had to sit down and truly think about, giving up care. There's only so much suffering you can watch your child go through before you feel as enough is enough. The doctors, nurse, my mom, palliative care and I all sat down for 1 of many meetings. The doctors need to know that I was okay with having a child that may never come off a ventilator, may never do anything but look at us and smile, a child that might have to live in nursing homes for the rest of his life, a child that they just didn't think was going to make it. I told the doctors and everyone there that I didn't care and he was my son and I will fight with him until he can't fight no more. I didn't care if he would only be able to smile, I didn't care if he would be wheel chair bound, I didn't care about a ventilator or any of it as long as my son wasn't brain dead I wanted all care possible. That night I prayed, I prayed for Kaedin and I asked god to just give me a break and give Kaedin a break and give me a sign that he will be okay and I made the right decision.
My sign:
After my talk with god Kaedin next few day were great. No bagging needed, his oxygen requirement was coming down and you were switched to the conventional vent things seemed great. I knew that it was my sign from god. He even started getting some breast milk through an ng tube. Unfortunately the feeding ended up stopping because of too much bile coming up which basically meant his tummy wasn't ready for food yet. And on Feb. 1st I held Kaedin. It didn't last long but it was the best few minutes of my life. Life was wonderful, he was so tiny still and he laid on my chest looking at me J the following few days sucked, he had an increase in the size of his girth which needed a tummy ultrasound, his vent settings were increasing again and we were headed down the bad road all over again. That night I received a phone call that Kaedin had yet another pulmonary hemorrhage and were put back on the oscillator. My heart was crushed but I just new it was too good to be true. That called for another doctor talk and I was asking all sorts of questions the doctor told me that you were the first preemie they ever had at that hospital with a paralyzed diaphragm and that's why they couldn't answer my questions. They had nothing to compare him too and no information on his specific case. She also told me that your bones are showing signs of malnutrition from being on iv fluids and being unable to tolerate food for so long. We were finally able to wean some of the oscillator settings. It was a great feeling. We were all praying he'd be able to come off of that dreaded thing soon.
One day:
One day my sister came up there to see Kaedin with me. We had a great visit and before I left I went to the pumping room to pump so more milk for him. I was there for maybe 15 minutes and went back to his bedside to say good bye. I turned that corner and found my baby blue in his bed with no tube in. I was like what happened he was just fine. The nurse said it only takes a few seconds for that to come out. They were getting ready to reintubate him, his heart rate was at 30 and his sat was at 50. I was scared out my mind, I thought that was it. They got his tube back in and continued to bag him but his sats weren't coming up. His heart rate was 20 and his sats were at 14. Then he perked up, and everything went back to normal. That was the first time I watched my baby begin to code.
The staff:
During my time in the nicu I had some wonderful caring nurses that were always there to talk when I needed them. There were also a few I could live without. One in particular ill never forgets. I'm not going to name names, but this one nurse was always downing me and Kaedin. She had no hope for him at all. One day I came into the nicu and asked her how Kaedin was and she told me he was his usual self, still doing badly. She sat there and told me she sees babies like this all the time and they don't survive. Continuing care is pointless and she doesn't want to see me hurt in the end and if he does survive hell be a vegetable his whole life. She told me that I really need to ask the doctors were there going with this and ask if they think hell survives and what his outcome may be. So I told her to go get the dr. the dr came over and talked to me and I told her everything the nurse said and how she made it seem like he wasn't going to make it through the night. The doctor told me that she doesn't know why she acted like that but that isn't the case. She told me that Kaedin will have to have surgery to fix his diaphragm and that was their goal to get him healthy enough for surgery. The surgery was very complicated and wasn't performed in that hospital on a baby as small as him so they didn't know if he'd survive. We discussed some more things and at the end of are conversation she told me this "I don't know when hell come off the vent and I don't know when hell go home but I can tell you this he will." From that day on that nurse never took care of Kaedin again.
Planning for surgery:
Over the next few days we started talking about surgery more. Kaedin was able to come off the oscillator yet again and this time was doing great better then ever!! He was taking breast milk via ng tube again and we were actually even able to increase continuously. He still had his bad days, days that he was up in his oxygen and needed to be bagged, still needed chest x-rays multiple times a day, still needed a blood transfusion at least once a week and his blood gases were still the same.. Not so great but overall he was doing better. Towards the end of February Kaedin had a streak of great days so we planned to take him off the oscillator yet again. To my surprise he did great, the Drs were all shocked by how well he was doing so we decided it was time to set a date for surgery. The date was March 6th! I couldn't believe it was less then 2 weeks away. The only thing was could Kaedin stay healthy long enough? Kaedin did great off the oscillator for 3 days! I was able to hold him and love him (except for the day he extubated on my chest and they had to rush him away and reintubatedL) I talked to the surgeon and was asking all types of questions and he was answering them with his best of knowledge. I asked how effective the surgery was, what kinds of complications can I expect, and yet the one I feared most; what were his chances of surviving surgery? He told me that he had a 40% chance of making it through surgery. I was so scared but I told him I was ready and that I knew Kaedin was a fighter. A few days later Kaedin wasn't acting his self and my nurse told me the dr wanted to talk to me about surgery. I already knew this couldn't be good.
We all love Kaedin:
The dr and I discussed a lot of things. She was scared to send Kaedin into surgery she was worried that he wouldn't make it out alive! My heart was crushed. My sons doctor just came to me and told me were putting off surgery. Me and the dr sat there and cried together. She told me that we all love Kaedin and we all want what's best for him and I just have this awful feeling Ashley. So we canceled surgery (which was the next day) and good thing we did the next day (the day of surgery) I got a phone call saying Kaedin was going back on the oscillator. When I arrived to the hospital Kaedin oscillator was maxed out and his oxygen was on 100% and he was sating 65-80. He wasn't doing well and to be honest with you I thought that was it. I though this was Kaedin sign to me that enough was enough. The Drs and nurses told me all we could do was wait and see if he can come up. It was the scariest hour of my life watching my baby sats at 70 for an hour. He finally did come up and the same dr came around and told me that he had aspiration pneumonia. They had to stop all of his feedings, so were basically back at square one. She reassured me that Kaedin would get better quick and we would set another date for surgery in the future. Needless to say the following few days were tough but Kaedin recovered. he was able to come back of the oscillator for the last time on march 18th 2010.he was doing wonderful looked great and was able to eat again but now he was being fed through a nd tube. The nd tube went straight to his intestines instead of his stomach. The drs told me that it was time to talk about surgery again. A few days before Kaedin was diagnosed with having mrsa. He was put into isolation because of it.
The big day:
On March 22 the surgeon came to talk to me again about doing kaedins diaphragm placation surgery. I again asked the same questions as before and received the same answers. Kaedin still only had a 40% chance of surviving the surgery. It was hard but at that point we couldn't get him off the vent or even stable enough or low enough settings to get better. So I asked him when we could set a date and I sarcastically said "it's not like it'll be tomorrow" and he told me well actually tomorrow would be a good day. so it was set Kaedin was suppose to go down for surgery in the morning. He went npo at midnight and actually had a good night and a good gas to follow in the morning. It was actually the best gas he ever had. I new right then and there he was telling me he was ready for surgery. The surgeon ended up not taking him down until almost 3pm that day. When they came up to get him I was filled with so many emotions. I just hoped and prayed he would come back. The drs and nurses all came in to his room to hug him and hug me, they all said there good byes just in case he didn't come back. I walked Kaedin down to the or and he just gave me that look like what are they up to mom? The surgeon went over everything with me and then looked at me and said "this is a complicated surgery and I have to tell you if I hit his heart he will die." I couldn't handle it I kissed my baby and told him I loved him I said my "good-byes". His nurse that told me he wouldn't make it the day he was born went down with him and asked if she could go into surgery too and they let her. I felt way more comfortable knowing she was there. I went back up to the nicu waiting room and I waited. Every second felt like a minute, every minute felt like an hour and every hour felt like a day. I was starting to panic and I prayed to god to keep my son safe. After a little over 3 hours they walked through the door, the surgeon looked at me and gave me thumbs up! I was so relieved that it all turned out ok.
The recovery;
Kaedins surgery went great. He had very minimal blood loss no transfusion needed; he needed a ton of anesthesia to knock him out. They told me now all we could do was wait and see what happens. They told me he very well could end up on the oscillator until he recovers but guess what? He didn't. Actually when he came up from surgery his vent was the lowest it ever has been. They got a blood gas and the gas showed he was over ventilated. They got a chest x-ray and it was the best one they had ever seen. But the true question was... was the surgery enough for him to come off the vent for good? Unfortunately only time could tell us that. I stayed the night with him that night because I was so scared something would go wrong. The next day was even better then the first, his vent was on the lowest settings he was ever on. I couldn't wait to cuddle my baby and tell him everything would be okay. If only that chest tube would come out. After 3 days his chest tube was removed and I was able to cuddle my baby. The drs started talking about extubating him, yes extubating him. I couldn't believe it, they thought he may actually be home by June! Our next question was when should we schedule for his g-tube surgery and does he need a fundoplication. We decided g-tube first and then we'd try to extubated him.
My due date:
So as the weeks went on I started to think we were out of the woods and it was smooth sailing from here. It was very hard watching the other families who's babies were born right around the same time as Kaedin and just as small go home, but I new that days was going to come. My due date was April 7th 2011 and for those who don't know that was also my birthday. That day was very hard for me I was suppose to be bringing home my newborn baby but I knew that wasn't going to happen anytime soon, I mean he's still on a ventilator. Kaedins vent weaning had slowed down and we were at a point that we were unable to wean anymore. It unfortunately wasn't enough to extubated him. So we set a plan, g-tube first, then steroids to help get that tube out. Kaedin was intubated so long one of his nurses actually taught me how to suction his ET tube myself. All the other moms looked at me like I was crazy, but they didn't understand that it felt great being able to take care of my son myself. I was the only mom that was able to get there intubated babies out of bed by there selves.
The rest is in replys :)
One of the scariest moments:
On April 13th 2011 I spent my normal day at the hospital cuddling my boy. That day I remember telling the nurses they had to retape his ET tube before it fell out. It's bad enough Kaedin was known for pulling his ET tube out actually in one day alone he pulled it out 5 times lol. She said they would make sure they did it before the evening nurse was on. I went home that evening spent time with my other two babies got them in bed and I was trying to relax before bed that night when I received a phone call. It was a 9:51 pm and a respiratory therapist was on the other line. She said this "hi Ashley were calling to tell you Kaedin pulled out his tube and we cant get it back in, 6 drs have tried and its not going in, were strongly advising you to get here immediately. They've been doing chest compressions for 10 minutes and are about to give the 2nd round of epi." I called a cab, kissed my kids and told the cab driver get there as quick as you can. During that cab ride I begged god to watch over my baby. I arrived at the hospital at 10:20pm, when i arrived at the nicu and they didn't even make me scrub. I went back to see my son with a smaller cuffed tube in, looking at me and I said you scared me baby and he smiled. Yes he smiled. The dr came over a talked to me and they told me they had to do chest compressions for over 15 minutes, he had 3 rounds of epi and another med to jump start his heart, anesthesia came and got his ET tube back in, but we have to tell you we don't know what's going to happen from here. She told me that they may have broken his bones and his organs could just shut down because of not having oxygen to them for that long. She also told me I need to think about signing a DNR because if that ever happened again they didn't think they be able to resuscitate him because his body couldn't handle it. They also told me they didn't think hed ever breath on his own if he couldn't do it then. They said chances are he will be trached. Kaedins vent settings ended up going back up and we basically took 20 steps back. They told me they had to make sure that ET tube never came out because if it did they didn't think they would be able to put it back in. I was crushed he was finally doing so well now this?
Yet another discussion:
That night I went home and I gave everything a lot of thought and I decided that I just wanted them to trach Kaedin because I felt in my heart he was going to be trached anyways. The next day I talked to the dr and told her what I thought and how I wanted to push forward with a trach. She told me that she wanted to extubated him. She told me that she felt hed be able to do it. She said trust me Ashley I have a feeling he's going to shock us all. So the plan was set. we were weaning his vent back down, going for reflux, gerd, and aspiration testing, then set a date for surgery and then after surgery start steroids to get him off the vent. We began the testing and it showed us what we already new, he still had severe reflux, gerd, and was still aspirating. So g-tube and fundoplication it was. We set the date for mid may. During the waiting period we had trouble keeping him healthy as usual. Not only did he still have MRSA/ORSA he was diagnosed as having his 3rd UTI. Poor kid never caught a break.
I hated pulmonary: one day pulmonary came around to have a talk with me about Kaedin. This dr was very rude. She told me that if Kaedin was unable to breath on his own hed never come home. She was telling me how there were no ventilators in the community and hed have to spend the rest of his life in nursing homes. She told me to really think about just letting him go because quality of life is better then him just being here for my selfish reasons. She said that the closets hospital excepting trach and vent patients was in Albany. I new right then in there Kaedin had to do it. He had to breathe on his own. I couldn't live without my son.
G-tube time:
Kaedin was finally getting healthy again. The drs put him on methadone to try and wean him off all his pain meds, which I couldn't understand why when he was just going to have another surgery and would need more meds. Mid May he went down to the or for his g-tube and fundoplication surgery. Surgery took a few hours but I new he'd be okay; I was more worried about his recovery. I new he turned into a bear when he was in pain. He came back from the OR and was doing okay he did need a blood transfusion and his vent settings were a little higher then before. They also were having a hard time keeping him sedated. He was on 3 different meds to keep him sedated and he still was uncomfortable. Plus he was on twice the dose a different baby his size would be on. Once he was sedated well he did fine. The following day I went to the nicu to see him and something wasn't right. I told the nurse that the incision site didn't look right to me. So she called the surgeon over to take a look at it. The surgeon said something wasn't right he didn't know what it was but he was very concerned with it. He rushed Kaedin down to the OR to open him up and see what was going on inside. I was so scared I didn't know what to think. Kaedin came back and they told me that he ripped his inside incision from being a crazy man and they wanted him sedated more then he already was. They told me that basically his drainage on the inside was pooling out his outside incision. So they put this tube thing in to help it drain. They also started antibiotics and did a septic work up. It took about a week but he healed well after that.
The aftermath:
After Kaedin recovered from his g-tube surgery, his et tube had fallen out one day when I was holding him. I panicked; I told the nurse his ET tube is out do something. I was crying, she told me to calm down he was fine. They hit the emergency button on the wall to get the team over immediately. By the time the team came over his tube was out for 5 minutes and he was doing awesome. They had an oxygen mask over him and I finally got to see my baby breathing on his own. The nurse wanted to just put him on c-pap to see what would happen but we all new hed just get reintubated that night. So I got my first picture of my baby with no tube. It went right back in and he did just fine with it out. I was such a proud mama and during that time I said you know what maybe he will be able to breath on his own. Let's give it a shot. J
Extubation:
That week we started steroids to give his lungs a jump start on extubation. And we set a date of May 27th. That day the plan was me get up there by 8am and they were going to pull it that morning. So my mom and I woke up that morning got ready called a cab and got up there around 830. When we got there the secretary asked us to wait in the scrubbing room because they were reintubating him. I was so mad that they didn't wait for me. They extubated him with out me, I wanted to be ready with my camera just in case I never seen his bare face again. The nurse came out and got us I went into the room and there was Kaedin sitting on his bed in his boppy with a nasal canula. It was amazing seeing my baby breath on his own. The drs got a gas an hour later and to there surprise it was one of the best they ever seen. That day my mom and I sat up there all day holding and cuddling our little peanut. We could get him out of his bed without permission and hold him on our chest. That was a way we could never hold him our hearts were together at last. After 8 hours of him breathing on his own and an awesome gas one of the nicu fellows came by and told me mom you were right and I am so glad you stuck your ground. Kaedin wouldn't be here today if it wasn't for you. He's a miracle and you are such an amazing mom.
Family day:
A few days later I decided that it was time to have my youngest son Jaeden finally meet his brother now that he was finally stable enough. Jaeden was too young to go into the nicu to see Kaedin being that the age limit was 3. So on June 3rd I took Kailanie and Jaeden up to the nicu to spend a few hours with there brother. I finally got the day I was dreaming of my whole family together. I took some awesome pictures of all my kids together. They loved being up there with there brother, holding him and giving him hugs and kisses. That is one day I will never forget.
My miracle:
The following day the nurse practitioner asked me if id like to go on TV and talk about Kaedin for the miracle network. It was an awesome feeling to know I was one of two moms to get asked to do this. So the day came and I and one of his many doctors went on the miracle network to talk about Kaedin. She told everyone how basically being as premature as he was on top of the many issues he has and having a rare issue (his paralyzed diaphragm) there was no hope for Kaedin. No one thought Kaedin would go that far and on top of it all be breathing on his own now. She told everyone that if it wasn't for me being there by his side everyday and throwing my little fits with the Drs When they didn't do what I wanted he wouldn't be here today. That night when I left Kaedin something wasn't right. He was breathing harder then normal and I had a horrible feeling that I new what was next.
The worst day of my life:
That night I called to check on Kaedin as usual and his nurse told me she had a bad feeling hed be reintubated by the morning. She told me she new Kaedin very well and he doesn't look good. That night Kaedin had a horrible gas his co2 was about 150. They decided to try and put him on c-pap to help keep him extubated but that didn't work his co2 was even higher on c-pap. 530 that morning Kaedin was reintubated. The drs called me early that morning and told me the news I was dreading. All I could do was cry. I cried from the time if found out all the way to the hospital. Once I got to the hospital one of the Drs met me at the door and gave me a huge hug and told me how sorry she was and how she truly thought hed be able to breathe on his own. She told me it was time to schedule tracheostomy surgery. I cried and told her it wasn't fair. I told her how pulmonary told me that if he was trached hed never come and I couldn't have that. I couldn't be here with a child I would never get to see. She promised me shed do everything in her power to make sure Kaedin went home. She promised shed personally find me a home vent even if we had to get it from another state. I went in that room and I held my baby and I cried until I was all cried out. I felt horrible because I promised I would never cry around him after all Kaedin needed my strength. I promised him that I would bring him home and that nothing would ever happen to him. Seeing him happy and breathing on his vent comfortably was enough for me to know he needed a trach.
Trach surgery:
We decided to seta date of June 13th, just a week after he was reintubated. That week went by very quickly and before I knew it, it was that time again. The ENT doctor was there that afternoon to take Kaedin down for surgery. I was expecting a long procedure but it wasn't surgery only lasted an hour or so. When Kaedin came back up the doctor made it well known that he had to be left alone. Therefore I couldn't touch him for at least a week, so his stoma site could heal. They had him on very high dosage of paralytics and very high dosage of pain medications. ENT told me that his vocal cords weren't paralyzed and he thought he would eventually be able to talk. He told me surgery went great and we had to wait a week for his first trach change. All the doctors had the plan all set in case of the trach coming out. If a new trach falls out it can cause a lot of problems because there will be no airway for the patient. It was nice finally seeing my baby free of tubes and everything else on his face. He was so handsome. I went home that night and called to check on him at 10pm to find out they were getting ready to call me. Kaedin had an episode and his trach fell out. They had to intubate him through his mouth until ENT could get there to put his trach back in. they had to start chest compressions and give EPI. They were thankfully able to get the trach back in with no issues.
Time to learn care.
That week was so hard only able to stare at my son but I was still there everyday faithfully. I couldn't wait to hold him and to my surprise one day while being up there he woke up. I was talking to him and he gave me his very first real smile. A big huge one and I finally got to see his dimples. Dimples I never new he even had. It was amazing I new I made the right decision for Kaedin. My long week ended and I was finally able to hold my baby again and let me tell u it was the greatest feeling ever. ENT did his first trach change which went great. The following week they taught me how to change his trach and I was told next trach change it was my turn. I was very shaky and nervous but I did it. I changed my first trach like a pro, like I was meant to be a trach mama. The nicu staff started going over all the things I needed to know about trachs, CPR, ventilators, feeding tubes and anything else you can think of. Mi had to go over packets and packets of trach information which I new would take months but I new that's what I was meant to do.
Another set back:
Mid July Kaedin got sick again. This time he was really sick. His ventilator was increasing and he needed a lot of pain medication. They did a septic work up and found out he had a staph infection in his blood and E-coli in his urine on top of still being MRSA/ORSA. Everyday I wondered when we'd be able to come home. It always felt like we would be there for ever. If it wasn't one thing it was something else and I was getting fed up. Then one day a dr came to me and said they found Kaedin a home ventilator. They told me I needed to find a place to live so I could bring my son home. At the time I was still living with my mom working on getting my own house. I had been homeless for a year and really needed a place. Guess what I found one and moved in on July 13th. It was all set Kaedin was coming home all that was left was finishing learning care and setting up home nursing.
Our big move to the picu;
One day I arrived to the nicu and was told I could finally take my son for a walk. A walk in the stroller out of the nicu, this would be the very first time he left the nicu. During our walk my nurse told me how the doctors were talking about sending us up to the picu because Kaedin was getting too big to be in the nicu. She told me that the picu is more experienced with children like him. I cried and I tried throwing my fit but this time it wasn't working. A few days later we had to say good bye to our nicu staff and hello to our picu staff. The picu transition wasn't too bad considering we had our first home meeting and actually set a discharge date. The date was set for September 16th! Finally the day I had been waiting for since Kaedin was born.
Were out of here:
The time went by so slowly. Everyday was something else I had to learn about Kaedin. I was a pro with his care by now and all I had to do was a 24 hr stay and a home visit. I used to think how cruel is that I seriously have to take my baby home and then have to bring him back? That's so not fair. My mom and I finally got cleared of his care and were able to take him anywhere in the hospital by our self's. September 16th hit and we weren't able to go home. Things weren't all set in place yet. We set another date of September 26th I told the staff if he didn't come home on the 26th I was throwing a fit and stealing him. Needless to say we did. I was filled with so many emotions leaving the hospital that day. I was excited, scared, happy and sad all in one. The staff in the hospital were there for me everyday. They were like my family and I couldn't imagine going a day without them. I packed Kaedin up said my good byes, cried and came home. Finally at last my son was home. The little boy they gave 3 hours to live and said there was no hope for was home with his family where he belonged. After all Kaedin does mean little fighter and that was definitely what he was a very little fighter.
I did my best to try and remember the majority of the hospital stay. I did leave out a lot of information. The following bellow is every condition he had.
Paralyzed diaphragm
Pherenic nerve damage
Brachial plexus palsy (left arm is paralyzed and hell never use it)
Grade 4 IVH (brain bleed)
PVL
Porencephaly
Macrocephaly
Gerd
Aspiration
Reflux
BPD
CLD
RDS
ROP stage 2
Pain killer addiction
25-30 blood transfusions
5-15 platelet transfusions
3 utis
1 aspiration pneumonia
Pneumonia
E-coli
Staph
Mrsa/orsa
Oral aversions
He was septic many times
Severe developmental delays
Failed hearing test in the right ear
Jaundice
I think that's all but im sure I forgot something
What an amazing journey. He sure is handsome. Thanks for sharing!!
Thank You for sharing (as I type though tears)....truly a miracle!!
what a amazing mother you are you definatly fought for your child and he is a amazing boy.
2: update 5-13-12: How do I increase breast milk supply?
- mamaofamiracle1
on Jan. 16, 2012 at 10:18 AM