Journey of our Preemie

Hello my name is Ashley Moore I am the mother of two beautiful girls my oldest SKyler just turned 6 years old and our newest blessing is Keira Beth who is now 7 months old. I am here to share our story of our journey over the last several months. It all started back in July 2013. I went in for my 3d ultrasound and they told me they couldnt do it because there wasnt enough fluid around the baby, immedietly my heart dropped i didnt even know what that meant but it was not a comforting thing to hear. The doctor sent me over to labor and delivery to get the steroid shot for Keiras lungs. And i had to stay for 24 hour monitoring. This was July 3rd. They did and ultrasound of my umbilical cord and saw that it was in the beginning stages of having a reverse flow. So basically Keira wasnt getting food. I was 27 weeks along that day and she was the size of a 22 week old. But as developed as a 27 weeker. Well early the next morning at 2:36 am on July 4th, Keira had a decel in her heartrate and was not coming back up from it. So they took me back for a emergency c section. I was so scared because i was completely alone, my finace was 2 hours away at the helibase where he works as a US forest service fire fighter. I was able to call him 5 minutes before they took me back to tell him to get in the car and start driving because our daughter was about to be here. Thankfully by the time i woke up i had family there to be by my side. Once i was able to comprehend the situation, the doctors told me that my baby was alive and fighting for her life. She was born with a birth weight of 450 grams (1 LBS). 11 1/4 inches long.


I couldnt even fathom this...I just couldnt imagine how a baby could survive being that small. She was immediatley put on an oscillator which is a high frequency breathing machine. They said she almost didnt make it when she first came out but my baby is a fighter and has made her presence known from the second she came into this earth. She has made it clear that she is here to stay and she will fight no matter what.


She was born at Mercy Redding and 2 days later on July 6th she was flown to UC Davis Medical center because she needed a PIC line put in, which they werent able to do at Mercy Redding. They flew Keira down to sac while her dad and I followed in our car. Once we got to UC Davis we were happy to know she was in one of the best hopsitals in Ca. We were scared though because we didnt know what was going to happen. In those first few weeks she had several blood transfusions and went back and forth from the oscillator to the regular breathing machine. I wast even able to hold her until she was around six weeks old. She was intubated for the first 4 1/2 months of her life. They tried once to extubate and put her on C Pap. But she only lasted 8 hours and they had to reintubate her. In those first 4 1/2 months she had several staff emergencies called. Her heartrate dropped and her oxygen saturations went way down and she needed to be bagged for air and have chest compressions done. I witnessed all of these and it was the scariest thing ive ever had to experience. They did a catscan of her chest to see how her lungs were developing and we saw her shocking reality. Her right lung was half the size of her left lung.



And the left lung was over compensating for the right. I was a mess and very scary to see. But we now knew why she was having so much trouble breathing on her own. But she was still very small so surgery wasnt an option at the moment. The doctors told us that the only thing we could do was sit, watch and wait for her to grow.


So we did...and while i sat by her side day in and day out just watching my little baby grow, watching my miracle make it through another day. I rarely left the hospital only to sleep and eat. I sit 12 hours plus everyday. To make the time go by a little easier I crochet, which has been a hobby of mine for a few years. I actually taught a crochet class in the NICU there for 3 months to other mothers and staff. Basically whoever wanted to come. It was good for all of us to be able to connect and share our stories with eachother. And i was happy to be able to share with them one of my passions that could possibly help them through their journey.


One of the hardest things about all of this is having my other daughter back at home 2 hours away from where we are at the moment.


All of a sudden her world was turned upside down too. She had no idea what was going on and why her sister was born but not home with her family. Shes come to visit several times over these past 7 months. And everytime shes like, "Why cant she come home yet?" or "When are the doctors going to give you a day off?" The guilty of feeling torn is the worst! I know both need me, I just wish there was 2 of me. So in this time of waiting for Keira to grow the doctors were also worried about her heart. Babies with chronic lung disease as severe as hers tend to start having issues with the heart. So they put her on a medication to help protect her heart. From the dau she was born to the end of October i was at the hospital mostly by myself. Keiras father is a wildland fire fighter and had to work through the fire season, to be able to support out family. I saw him a few times a month. He would come down to sac if he was able to have any days off. So that make it a lot harder for me not having the support i needed. He was there in spirit with us but we missed him very much. On August 23rd her dad proposed to me next to her bedside...Keira was holding the ring :) of course i said yes! The nurses and doctors said it was the first proposal they have even seen or heard of in the NICU. Then on November 13 they attempted to extubate her again. This time it went much better. C pap can be very annoying at times but it is much better than being intubated. 2 days after Christmas the doctors told us they did an echocardiogram and they feel Keira needs a cardiac cath done. They need more info to better help her. They told us if they find what they think they are going to find that she will need open heart surgery. She had her first cardiac cath done on December 30. It was a 3 hour procedure. And they found what they thought they would find. Basically her pulmonary veins are draining in the wrong spot. And they need to be rerouted so she can get oxygenated blood. So they will be making a plan to do open heart surgery. Oh and they had to reintubate her for this but luckily were able to extubate her a few hours after the procedure. A week after that cath procedure the doctors said they still wanted more information. Some of the cardiologists werent convinced that she needed surgery. So she got another cat scan with contrast done. And with that test they decided they want her to get another cardiac cath done. But this time they wanted to see where exactly that pulmonary vein was draining. So they were going to follow a saline bubble through the vein to see where it drained.So on Jan 17th she was in the cath lab this time for 6 hours! And they stopped because she started to desat and they didnt want anything bad to happen. But they had a diagnosis for us. They told us she had "Scimitar Syndrome" its a rare congenital heart defect characterized by anomalous venous return from the right lung (to the systemic venous drainage, rather than directly to the left atrium). And that she would need open heart surgery asap. Later that night she gave everyone a pretty big scare. She starting desating and her heart rate dropped to 0 which is basically flat lining. This was the scariest code yet...Only dad was at the hospital too i had just left to take my other daughter to her grandmas house. I think God was giving me enough time to get my daughter out of there so she didnt have to witness that scary incident. And of course my fiance was freaking out. which i totally understand i would too. He was calling me telling me we were losing her and i was racing back to the hospital hoping and praying she would be ok. I got back and they had stabalized her. The et tube was either too deep or it had a mucus plug in it so she want getting the air she needed. And the fact that she had an invasive procedure done earlier that day made it that much more scary. But with all this new info the doctors had, they knew exactly what they wanted to do. So that following wednesday they sat down with us and told us that they were going to do open heart surgery the following week. For me personally it felt like a double ended sword because I knew she needed to have this surgery becasue if nothing was done she would eventualy go into conjested heart failure. I have had 2 open heart surgeries myself, in the last 5 years, so i knew exactly what she was in for. She went in for surgery on Jan 31 to try and reroute her pulmonary veins. The first update we had was them telling us that they were not able to reroute the pulmonary veins, that they would have to go right through her diapragm and that was not safe to do what so ever. So they were going to remove the lower lobe of her right lung. But once they were able to see that right lung better and disect it more, they found that it was completely abnormal. So they removed the entire right lung. Which was definatley not the plan of action at all. But the surgeon seemed to be happy with the outcome and they removed the entire pulmonary vein as well. Hoping her pulmonary hypertension would go away with time. She spent the next week in the PICU.



She was completely out of it for about 3 days. She was so drugged up she couldnt even wake up. It was so hard having to sit there again and just watch her and not able to hold her or anything. It was like she was 13 weeks early all over again. Back to the beginning. But everyone kept telling us in a week or so she would be awake and happy again. After 6 days they let her go back to the NICU, which was good because that has been our home for the last 7 months. We basically feel like part of the family down there. We have made lasting friendships here and are so blessed to have such wonderful caring people taking care of Keira Beth. So this brings us to the present, we are 15 days post op and it has been up and down still. Its the never ending roller coaster ride. And not the fun kind! She is still intubated, which really sucks becasue its so hard for her, shes so miserable.


We cant hold her because she is already so uncomfortable. We have tried to wean her from the pain medications shes on, but she has abd reactions with that. Her oxygen requirement has gone up significantly. Her body is trying to get used to only having one lung and we are not quite sure how everything will turn out. All we know is she needs to be able to be a regular healthy baby and be able to smile and progress like a healthy baby. She is 7 1/2 months already and she cant sit up on her own she cant roll over she can barley smile becuase she has a uncomrtable tube down her throat all the time. So our next plan of action is her getting a Trach and a G tube. So she can at least start developing normally. So now we just need to get her stabalized so she is strong enough for those procedures. So this is Keira Beths story so far...we still have a ways to go here in the hospital. No light at the end of the tunnel yet. Ive seen so many babies come and go. Ive become close friends with several of the mothers that have been here. We have leaned on eachother for support suring these rough times. Keira has had 4 of her roomates pass away in the 7 months we have been here. I am close friends with one of the moms who had a baby pass away after 3 months of being in the same room. I went to her daughters funeral, it was one of the hardest things having to sit there knowing my baby was still fighting for her life everyday. I couldnt even imagine how they were feeling, obviously it had to be much more painful for them. But i knew they needed my support and I wouldve done anything for them. I just hope and pray everyday that we make it out of here together as a family. I have faith that God will take care of her and eventually everything will be fine. But until that tiem of discarge ill just sit patiently nest to my babies bedside, crocheting as I always do. Here are some of her happiest moments :)







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Organizer

Ashley Moore 
Organizer
Redding, CA
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