The Swaim Family

Minot, ND
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Name
Alaea Swaim
Injury/Illness
Cerebral Palsy

Alaea Love Swaim was born at 23 weeks and 6 days premature. Alaea came out breach with the umbilical cord wrapped around her neck 3 times, and a heartrate of 37 at 12:01 pm on December 26th after trying for her for 3 years!! The Dr's told us she had a 0% viability and we were told that the entire 6 days I was in labor. With how bad we struggled to finally get pregnant with Alaea, it did not matter what anyone had to say, we knew Alaea could do it! I went in the ER on December 20th at 7:38 at night after passing a 4 inch blood clot. We were told I was completely dialated, completely effaced and Alaea was sitting in my birth canal and we were going to have a baby that night! Even though her heart has never been a problem, thank the lord! The Dr's  informed us they would not be trying to save her because their cut off date is 23 weeks and I was 22 weeks and 6 days at 7:38 at night. Just 3 hours and 20 mins away from their cut off date and after trying for her for 3 years to hear that they wouldn't even try to save her was the most devastating news till this day that I have been told. During the 6 day process of being in labor the way Alaea was laying and how tiny she was the Dr's thought it would best to do C-section, well with that option, our only option we thought, I had a 90% chance of bleeding out giving birth and we could loose Alaea! Well, our Alaea woud not need saving just yet as she somehow stayed inside, slowing moving down everyday, breach, by the 6th day Alaea was basically suffocating inside my birth canal and she had to come. This was at 7:30 in the morning and she was here on this earth at 12:01 with NO C-section!! Alaea weighed 1 pound 6 ounces and she was 12 inches long, she fit right in our palms. Her eyes were still fused shut, and her skin was so incredibly thin we could see her ribcage. After 11 minutes of trying to get her to breathe, she was finally stable! Alaea was born without a thyroid, and not to many people know but we are unable to live without a thyroid. Since birth it has been very difficult trying to keep her thyroid on a good level, as weight gain or loss will change it. Running a bunch of tests which consisted of using literally all of her blood, we needed to do a blood transfusion, her very first one at just 1 day old. At 4:30 in the morning the Dr's run into the room to tell us the heart catheter moved from her heart to her liver in a 4 hour and all of the blood that was supposed to go to her heart, instead went to her liver. Somehow. Alaea had black and blue legs for atleast a month due to her being breach in my birth canal her legs did not recieve oxygen and she was 1 pound 6 ounces unable to move around due to being born at 23 weeks and having a traumatic birth as well so we have never understood how 4 cups of blood was able to get to her liver when there was a 24 hour bedside nurse beside her making sure things of this sort would not happen. So over the course of the next 24 hours we were basically told "Sorry" and we waited by her incubator and waited to see if she would pull through or not. WIth Alaea's determination she pulled through having 4 cups of blood pumped into her liver at 1 pound 6 ounces, this was just the start of her determination. During that period of having 4 cups of blood pumped into her liver Alaea suffered from a major stroke and a 3rd degree brain hemmorrhage and she also was the 1 in every 250 thousand people to get a 3rd degree chemical burn from Iodine. We were transferred to another hospital 1 hour away to place a shunt. We were told with Alaea's conditions it was a very low chance she was survive the ambulance ride. By determination she continued to prove everyone wrong! Alaea made it to Fargo and not only did she make it there but she THRIVED in Fargo at their NICU. We were told by Dr's unless Alaea was doing exceptional she would not be transferred back to ALTRU because it is ALOT on her little body. Well while we were in Fargo for only a short month, gratefully, Alaea was able to pass the blood and fluid in her brain and did NOT need the shunt for her brain!!!! Such an incredible miracle!! While we were told it was very very unlikely Alaea would be transferred back to ALTRU in Grand Forks, Alaea was transferred! The trip set her back more then what we would of liked, we were working on getting her on the C-Pap machine so she could get the tube out of her throat and that took us about a month of constantly trying to take the tube out, she would have it out for a few days, do great, and a blood gas would come back and we had to put the tube back in Well miss Alaea was getting mighty sick of that after about a month and one night somehow someway Alaea gummed down on the breathing tube in her throat and her stats decreased to 55 for oxygen and 47 for heartrate and she was biting down on the breathing cord making it unable to work!!! The Dr on call that night thought the best choice would be to just go ahead with the C-Pap machine and the very second he put that C-Pap around her face Alaea's stats came right back up to normal pretty much immediately. Alaea has always known what she has wanted, and she will get it. We spent about 6 months in the NICU just to come home for 9 days to have the scare of our lives. Alaea was on phenobarbital [seizure medication] now she never had a seizure, gratefully. But they put her on this medication to PREVENT seizures. Well when Alaea got discharged from ALTRU the nurses and Dr's  unfortunately did not take Alaea off this medication she did not need in the first place, with her being in a car bed and not being able to be covered like a regular car seat and the elements of North Dakota in May she ended up getting sick and catching the Rhino Virus, with the virus and taking a medication that says in bright yellow lettering 'DO NOT TAKE MEDICATION UNLESS NEEDED. WILL CAUSE SERIOUS BREATHING ISSUES IF DONE SO'. Trusting the Dr's  knew what they were doing we believed them and gave this medication to Alaea as directed. Every day at 5 pm that I had to give her this medication her breathing would be slower, this night was different. When I gave her the Phenobarbital she basically quit breathing, she would breathe but it was very low and not normal, dad was at work, luckily only 5 minutes away and the first thing I did was try to get her to breathe by stimulating her like I was taught, after that was not working after a minute or 2, panic began to set in and I called dad to hurry and get home, we did not have time to call an ambulance and wait over 8 minutes for them to get there and get up our stairs and then loaded up and back to the hospital, Alaea would not have made it. After everything we have all been through so far we as parents had to make a choice and make it fast. When we got to the ER I had Alaea in my arms as I was stimulating her and trying to keep her alive, I ran into the ER screaming Someone help me, my baby isn't breathing and i need help immediately!!! It was a time I will never forget. ER opened their doors to the back, I was basically running, life or death here. I got her set down on the chair we sit in as adults and they got a breathing tube inside of her immediately, from that moment on we were trying to make sure Alaea was alive and we had to tell them everything that led up to this and why this basically was happening. Well in Grand Forks after you leave the NICU you are unable to go back, so we had to be transferred to Fargo's Children's Hospital after spending almost a week there we were finally able to come home off all medications she did not need to be on anymore!!!! This is when the real journey  would start. With her being born 4 months early, the brain bleed and major stroke we expected delay, but when Alaea was not sitting up, eating normal foods at all, babbling crawling, really nothing to be honest at 1 and half years old corrected we were very concerned, so we went to our first Neurology appointment to find out the severe brain hemorrahage did damage to 3 out of 4 ventricles and it completely destroyed her cerebellum so she does not have one. We were devastated. In the 5 years that Alaea has been on this earth with us we have been able to learn that she has low functioning-level 3 Autism, she is non-verbal, she has cerebral palsy, no thyroid, Lupus, no cerebellum, she has a 3rd degree chemical burn across her entire stomach, suffered from a 3rd degree brain hemorrhage and a major stroke, she has cataracts, Alaea has to get hearing aides in both ears due to significant earing loss from the brain bleed. Alaea is still in Overnights and she has also had severe texture issues over the years and she has been on Pediasure Mealshakes since she was a year and a half old and that is basically her diet, we continuously try to get her to eat other foods everyday but she will only eat very certain things and although with all her disablities Alaea will not budge if it is not in the right container and it isn't that specific food she wont eat it, unfortunately even if she does like the food she may not want anything to do with it that day and want something else, unfortunately with her being non verbal we literally just have to guess our way through everyday, so it can get to be very very difficult. But nonetheless we will never quit trying! Alaea was put on this earth to do many wonderous things and she will do them with all the determination this wonderful little girl has! 

 

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