Today, Mark & I had an appointment with the genetic counselor at the Munroe-Meyer Clinic in Omaha, NE.
The appointment went the way we were hoping it would go. The genetic counselor told us that we have a 1.8% chance of having another child with a chromosome disorder. Everyone has a 1% chance of having a child with a chromosome disorder & the .8% comes from my age. The percentage increases with age and at age 36 it increases quite a bit.
We asked her if she has had any patients that have had multiple births with any Trisomy disorder. She said that in the five years she has been with the Munroe-Meyer clinic she has seen one case where the family had a couple with Trisomy 18 & then the second pregnancy was a child with Trisomy 16. That is the only case she has seen & she told us she sees multiple cases similar to ours per year.
We feel relieved that the chance of us having another child with Trisomy 18 is small, but we also were part of that small percentage with Kysa. We are hopeful that the Lord will bless us with another child(ren) sometime, when the time is right.
They also discussed with us the possible testing that could be done in future pregnancy(s). There is the Quad test which is available now & has been around for quite sometime, (it was offered to me with both Owen & Kysa, however, I didn't do the testing). There is some new testing that just came available & would be available to us since we had a child with a Trisomy disorder. It is about 98-99% accurate & would test for Trisomy 18 (Edwards Syndrome), Trisomy 21 (Down Syndrome) & Spina Bifida. The only place the test can be performed in our area at the present time is at Methodist Hospital & UNMC in Omaha. They told us that if we want a 100% test, we would need to do the Amnio, but of course there is risks with Amnio, not going to get into details about that now. When the time comes, it is good to know that there are options to ease the mind a little, because I know that if that time ever does come, the thought of Trisomy is always going to be on our mind.
We are very glad that we made the decision to go. It was good to visit with the professionals who are very well versed in genetics. There isn't any testing available out there that could test Mark & I to see who passed the extra gene to Kysa, and I'm pretty sure we wouldn't have done the testing unless they felt it was absolutely necessary.
Wednesday, November 21, 2012
Friday, November 9, 2012
Our Journey with Trisomy 18
All of you followed us on facebook & on this blog, but I just wanted to write "Kysa's" story & share it with all of you before I forget any of the details.
In January 2012 we found out that we were expecting baby #2, and we couldn't have been any more excited. The Lord had blessed us with two children about two years apart, how perfect!
On February 15, 2012 I went to see my OB for the first time. They did the early ultrasound & it showed a difference of about 6 days from what she had calculated, but she decided to keep my due date at Sept. 18. From what they could see, there weren't any problems. She told me that she would see me in a month for the routine visit.
The next appointments came & went without any problems/complications. On May 7, 2012, we had our 24 week ultrasound & found out that we were having a girl. We were estatic to say the least....a GIRL!!! During that ultrasound, the ultrasound tech found two coreplexis cysts on her brain. Our Dr. assured us that it could be an early ultrasound, thus the reason for the brain not quite as developed as it should be, but said that she would be keeping a close eye on them to make sure they disappeared. She also told us not to worry about them, but also pointed out to us that it is possible that I could be carrying a baby with a chromosone disorder (if they didn't disappear or if there got to be more). She told us that her son had the same thing & that he turned out to be just fine. At that ultrasound I was measuring behind by about 10 days, but they decided to keep my due date in line so they could gauge Kysa's growth.
In June, I had another ultrasound, which reassured us that Kysa was going to be just fine. The two coreplexis cysts they found last month, one had disappeared completly & the other one was much smaller in size. Mark & I were relieved to say the least, they cysts disappeared just like they were suppose to, and we felt like we had nothing to worry about. During that ultrasound the tech couldn't get a good picture of the heart because Kysa was facing my back & wouldn't cooperate at all. So instead of waiting for another month to see if she would cooperate, Dr. Hunt referred us to a perinatologist, just so he could look at Kysa's heart & make sure everything was as it was suppose to be. At the June ultrasound I was measuring about two weeks behind my due date...Kysa was in the 10th percentile for growth on the growth chart.
On June 13, we saw the perinatologist for the first time. The appointment lasted about 2 hours & was the most throughal ultrasound I have ever had. The ultrasound tech did the ultrasound first taking lots of photos & measurements. She then reported her findings to the perinatologist, he then came in & did his own ultrasound, checking the brain, heart etc. He found that the coreplexis cysts had left completely & also found the four chambers in her heart & said that the blood flow was working as it was suppose to work. He REASSURED us that there was nothing wrong with Kysa....he said she was just going to be a small baby at birth, but PERFECTLY HEALTHY!! At that appointment she was in the 15th percentile on the growth chart & he was going to suggest to my OB of moving my due date for growth purposes. He wanted to see me again in a month just to chart the growth, but again assured us that nothing was wrong with her.
In June I saw my OB two times, one was to have a consult about the perinatologist findings & the other was my routine appointment. At the last appointment in June I had to have the glucola testing. I failed the test! ;( I was devestated! She told me that sometimes girls are harder for women to carry & sometimes it just happens, not to get worked up over it. The next week I had to have the four hour testing at the hospital...again, it showed I had gestational diabetes. My numbers weren't that elevated but elevated or not, I had it. On July 2, I attended a gestational diabetes class at the hospital. They gave me all the testing supplies, etc., & a nutrition course on how to manage my sugars. I had to check my sugar four times a day....I can count on one hand how many times they were elevated.
In July I again saw the perinatologist & he again assured us that Kysa's heart was fine, all four chambers were doing what they were suppose to do & again the brain showed no coreplexis cysts. Picture perfect right?!?! I also saw my OB in July, blood sugars were good, she said that she would see me in August.
August 9th is when everything changed. We went to our OB for our 33 week checkup. She decided that she wanted to do a growth ultrasound just to see where Kysa's growth was. During the ultrasound they found a buldge in her umbilical cord & above that buldge there was a "pocket". There was immediate concern that there wasn't enough or possibly no blood flow at all getting through the cord. After they did some testing they couldn't for sure determine how the good/bad the blood flow was. Our OB consulted with a the perinatologist that I was seeing & they both decided that it was in my best interest to be admitted to St. Lukes & monitored for a couple of days with a c-section to take the baby immediately after. I was also given two steroid shots to strengthen Kysa's lungs, one on Friday and one on Saturday, with the hope of performing a c-section on Sunday, August 12.
Kysa weighed 3 lbs. 5 oz. at the 33 week ultrasound, which is about 3 weeks behind where she should be on the growth chart. Both Drs. felt that Kysa would do much better on the outside world than on the inside world. At the present time they feel that she will be in the NICU @ St. Lukes for approx. 7 weeks, it could be less than that.
Friday, Saturday came & went without any major hiccups. I had our photographer come up & take some maternity photos of Mark & I. What a blessing that was. We were also blessed with lots of visitors, so that made the time go by quickly. On Saturday, Mark toured the NICU & one of the NICU Nurse Prac. came down to our room for a visit. Saturday evening, my family Dr. & priest came to visit me, what a pleasant surprise!!
August 12, 2012....the day our lives changed forever. About 6 that morning, the nurse came in & told me that I could shower for the day if I wished to do so. I got up & took a quick shower, they then came in & prepped me for surgery & the anesthesiologist came in for a visit as well. At about 7:30 they took me down to the operating room to insert the epidural into my back. I was absolutely amazed at how many people were in the operating room....there had to be at least 15 Drs. & Nurses awaiting Kysa's arrival. At 8:05 Dr. Hunt began the c-section to deliver Kysa into this world, at 8:07 she was born & she came out CRYING, which we were told was a good sign. The NICU team got her stabilized & took her upstairs. Mark followed them up & I was placed in recovery for about an hour, then wheeled down to my regular room. Mark came down about a half hour after I was in recovery & said that everything looked good & that she weighed 2 lb. 11.7 oz & was 14.5 inches long. He also said that they had used the sirfactin to strengthen her lungs, but again that was normal procedure for a 33 week old baby. After I was out of recovery the nurse wheeled me up in my bed to see our daughter. She was amazing & I was able to hold her finger from my bed.
The day continued on, we had lots of visitors & Kysa got to meet lots of family & friends. About 3 that afternoon, Mark went upstairs with some friends for them to meet Kysa & they were doing an ultrasound of her heart. Mark stayed up there while they were there (over an hour or so) & the nurses told Mark that the Dr. would be down to talk with us about something they found on the ultrasound. About 5 that afternoon, we were in our room visitng with some friends & Dr. Wilson & 6 nurses came into our room. His exact words & I will never forget them "I'm sorry, but I have some bad news about your daughter, she has a two major heart defects & a disorder I believe to be Trisomy 18". The only other thing I remember from that conversation was him saying a lot "I'm sorry" & that we needed to meet with a heart Dr. about her heart condition. I also remember the nurses with tears streaming down their faces. I was in udder shock, all I could do was look out my hospital window & ask WHY? Mark & I got it together & our friend came back into the room & comforted us for the next half hour to hour. We called our parents & priest & asked him to come baptize her because we didn't at that point know how long she would be with us. Owen went & stayed with Jamie so our parents could come up & be with us. The Neonatologist also talked to them about what was going on.
Fr. Hemann baptized Kysa that evening around 8, surrounded by her loving family. Kysa's god parents are her grandma's, how perfect!
Mark stayed with me that night at the hospital. The next morning, both of our parents came & as soon as I was able to escape my hospital bed I went upstairs to see her.
Tuesday, August, 14 we met with the heart Dr. He explained to us the problems with Kysa's heart. She had what they called VSD (ventricular septal defect), where the bottom chamber of the heart didn't have a wall separating the heart into two chambers, she also was missing some valves in the lower chambers as well. She also had a what they called a PDA, this is where the valve that leaves the heart & goes to the lungs didn't close at birth, like it's suppose to do, so what was happening was blood was immediately being pumped from her heart to her lungs. He told us that IF she doesn't have Trisomy 18, then they would immediately begin medication (ibprofen) to try to close the PDA, & if that didn't work then they would do surgery to close that. After she had healed from that surgery & her lungs had strengthened, they would then about 6 months down the road do open heart surgery to repair the VSD. HOWEVER, if the chromosone testing came back positive, there would't be any surgery because of her life expectancy, and there wouldn't be a surgeon out there that would perform the surgery that was necessary for her.
Immediately after our consultation with him, the University of Nebraska Medical Center called & had Kysa's chromnsone testing back, the nurse practitioner gave us the very heart wrenching news that the test was 100% positive that she did in fact have Trisomy 18. At that point we knew that there was nothing we could do to help save our daughter. All we could do was ask the Lord why?
On Wednesday, I had our photographer come to the hospital & take photos of Kysa. Not knowing how long she would be with us, I wanted to capture every moment that I could. We also had some pictures taken as a family of "four", & we had some taken with her grandparents. She did an AMAZING job capturing "our story" behind the hospital walls. The NICU staff got a flower headband ready for us and a sleeper. I was able to change Kysa's diaper for the first time & dress my baby girl for the first time as well. It warmed my heart so so much!
In the next few coming days Mark & I spent as much time with her as we could. We also met with the NICU staff daily & they were there to answer any questions we had. They told us that we would have to decide when the time was right to remove the ventilator. We were encouraged to take our time & that they would be there for support & help us with anything that we needed help with.
I was released from the hospital on Thursday, August 16. That night Mark & I came home to greet Owen before he went to bed. We then took him to daycare the next morning & then we had a meeting with the Neonatologist, the NICU staff, our parents & our priest.
During the care meeting, on Friday, August 17, the Neonatologist confirmed with us what we already knew...Kysa had Trisomy 18. Also at that meeting it was discussed what the "care plan" was for Kysa. He said that at some point Mark & I would have to decide when to remove the ventilator. Mark & I were having the most difficult decision on "when" that time would be that we would remove the ventilator. It felt as if we were choosing the day that she was going to pass. Our priest assured us that if the Lord wanted her to live, he would let her live & to not look at it like that. He said that the Lord would work through us to help us make that decision. He said that we would know when the time was right. He also told us that he felt that "today" wasn't the day. We also discussed with Father what means as far as the Catholic church goes that we needed to maintain. The ventilator was extroidnary means, but we needed to maintain food & water.
After the care meeting Mark & I told the Drs. & Nurses that "today" wasn't the day & that we would let them know when we felt the time was right. Again, they assusred us that there is no right or wrong & encouraged us to take our time to get the proper closure. It was amazing to have all of our family there that day to support us & our priest. It helped Mark & I alot.
The next couple of days we had a lot of visitors stop & see us. We went to church as a family on Saturday night & Owen came up to see his sister again that evening. Mark & I stayed in the family room that is connected to the NICU, it was comforting to be that close to our daughter.
On Sunday evening, Mark & I went home to spend sometime with Owen before he went to bed that evening. We planned on heading out right away the next morning after we dropped Owen off at daycare. There was a change of command at the NICU on Monday so we needed to be there to meet the new Dr. coming on & to thank our current Neonatologist for all his time that he gave us.
On Monday morning on our way to Sioux City, Mark & I discussed that we needed to proceed with removing the ventilator. We decided that we would proceed with that on Tuesday sometime, August 21. We spent the entire day with Kysa & that evening we stayed in the family room. We held her, gave her a bath and told her how much we loved her & that she would never be forgotten. The hardest part was telling her that if she wanted to go home & be with Jesus that it was OK to go. Both priests came that day & visited with us, reassuring us that we were making the correct decision. They told us that if God wants her to live, she will live, if he wants her in heaven he will take her. We questioned why he was making us make that decision & that if he wanted her why couldn't he take her at his command. Fr. Rich put it so clear....God is working through you two to get her. It made sense, but still was sooo hard! Mark & I went to bed that night knowing what tomorrow was going to bring....we did sleep, but not sure how sound of sleep it was.
Tuesday, August 21, 2012....our parents came up & said their good-byes to Kysa alone, held her, etc. After they were done, it was time for Mark & I to have our time with her before we removed the ventilator. We drug our feet like you couldn't imagine....we called our priest, he came to the hospital around 12:15 and told us that he had a meeting to attend, but he would be back & then he said that he would help us with our decision. When Father came back we removed the ventilator at 2:20. Father, Veronica, Amber, Alexi, Mark & I were in Kysa's room when the ventilator was removed. She cried, although no sound came out, she was clearly crying after the tube was removed. All of us huddled around her, prayed over her & Father continually talked to the Lord telling him that it was ok for his will to be done. After about 2 hours had passed she was like a normal baby without the ventilator. We then fed her & added the nasal oxygen to her. Our priest from our parish arrived around 4 that afternoon & visited with Mark & I for a while & then went back to our parent room & visited with our parents. They then came into Kysa's room and were just amazed, as were we, that she will still with us. We were told that she would last 2 hours, and at the most they thought 2 days. The Drs. & Nurses were blown out of the water that she lasted past the two hour mark & she had really good vitals. Mark & I went back to our room to rest, our adrenaline was gone...we were totally drained. We rested for a bit & then went back into the room to see Kysa. We stayed that night with her in the hospital, because we didn't know if "tonight" was going to be the night for her to go home & be with Jesus.
Tuesday evening, the nurses molded Kysa's hands & feet and my finger holding onto her finger & made us a shadow box out of the molds. A keepsake that we will cherish forever!!
Wednesday was really laid back, we met with the Dr. & nursing staff that morning & they were simply amazed that she was doing so well. Mark & I were elated that she beat the odds they gave us & we felt sooo much better that she didn't pass on the day that we chose to remove the ventilator. We felt as if it was all in God's hands at that point.
Thursday, August 23, 2012, Kysa started to develop Apnea Spells. The first one was that morning while Mark & I went down to the cafetoria for some breakfast. We came back up from breakfast with nurses lunging at us to get into Kysa's room immediately. Mark held her in the chair & talked to her...she came out of that one pretty fast, but her color was ashen grey/blue. She didn't have that perfect pink baby skin that we are used to seeing. That day the spells continued to happen between 1 and 4 hours apart, and they lasted approx. 10 to 14 minutes. Her heart rate would stay at about 35 to 50 beats per minute, but she wouldn't breathe hardly at all during the spell.
The spells continued through the night on Thursday, all day Friday & Friday evening. Magically at about 10:30 on Friday evening they stopped. That was her last one...praise the Lord. Mark & I were able to get some good sleep that night & Kysa rested comfortably too.
That weekend we had lots of visitors, it warmed out hearts so much to have all the company we had.
On Sunday, the Neonatologist met with us & discussed with us the two medications that Kysa was on, caffiiene & lasix. The caffiene was a stimulant that was stimulating her breathing, & the lasix was being used to help keep her lungs free from fluid that is caused by her congestive heart failure. He told us that there wasn't a right or wrong answer, but that we needed to decide if she should stay on that medication. After that meeting with him, I decided that I needed to get out of the hospital, so I went home & did a couple of things at work to clear my mind & then I went & spent some time with Owen. About 7 that evening I headed back up the hospital & spent the night with Kysa & Mark. I remember saying to Mark that night when we went to bed, I thought our hard decisions were over, & yet it seemed that they just kept coming.
On Monday morning, since Kysa's color was so good, I had the nurses call Charley's Angels & have them come up & take pictures of Kysa. She was having such a good day & she looked so good. I was so glad I decided to do that.
Over the next several days Kysa's vitals remained strong, heart rate at 150 plus & respirations at 80 per minute. When she was on the ventilator her respirations were at about 60-65 with her only doing 5 or so of them.
On Tuesday, August 28, Mark & I decided to remove the lasix & caffiene from Kysa. After a consultation with our priest, he said that it could be looked at as extroidnary means. Mark & I decided that we would remove the medication. We also got input from our parents, cousins who are Drs. and our hometown family Dr. We felt with all the given information we were given, that it was the next step.
On Tuesday & Wednesday evening Mark & I went home to spend time with Owen & try to have some sort of normal routine for him, because Kysa was doing great, her vitals & respirations were amazing the Drs. In fact, they checked her O2 level and it was at 88%, which totally amazed them. Her color was that perfect pink baby color that all babies have. They were also amazed that her lungs sounded clear.
On Thursday morning when Mark & I arrived back at the hospital, Kysa's color was more grey/ashen than it was the day before. I knew the moment that I walked into the room that I wasn't leaving her bedside until her color returned. Thursday morning & afternoon went really well until about 4:15, then her heart started going into bradycardia spells, this is where the heart rate dips, but her respirations remained there, not strong, but she still was breathing. Mark headed out just before the spell to go get Owen from daycare, he got to the outskirts of Sioux City & she had already had 2 spells within 15 minutes. The nurses thought that maybe Mark should come back. He came back & the spells remained for the rest of the night. Her heart rate would drop to around 30 beats per minute, but it would come back, the spells lasted about 4-8 minutes each & were about every 2-4 hours. We got some rest that night.
Friday Kysa continued to have spells all day long. Again, they were about every 2 or so hours and her heart rate fell a little lower each time. Friday night, Mark & I were up every hour on the hour with her. Her spells gradually continued to get worse, and much longer. They were lasting about 12-18 minutes. They were like clock work, her heart rate would drop to 15 beats per minute & stay there for around 2-5 minutes & just like that it would rebound back up to 60, then 90. When her heart rate reached 90, she would start to breath much faster & more deeper breathing, when her heart rate was so low, most of the time she wasn't breathing at all, but occasionally she would take shallow breaths. After the spell was over her heart rate was back up into the 150's, just where a normal babies heart rate should be.
Saturday, September 1, 2012, Kysa's spells continued just like they had the day before. Mark & I were whipped from zero sleep the night before. We pushed through though knowing that we wanted to be by our daughters side no matter what. On Saturday, her heart rate started to go into Astylie, which means ZERO pulse, the first time her heart dropped that low, I can remember feeling, is this it, is it her time? Then just like that her heart would start back up & before we knew it her pulse was back up to 90 & she was breathing strong again. The spells lasted around 16-18 minutes. It seemed like time stood still during those spells, but I also remember thinking, wow that was fast, because you are so caught up in it, that you really do loose track of time. Again during that night we were up every hour on the hour. Saturday Kysa got some very special visitors that had been wanting to meet her since the day that she was born. Her cousins, Greg, Jill & Andrew came & got to meet her for the first time. What a blessing it was.
Sunday, September 2, 2012, Kysa's spells still remained. The Astylie part of the spell seemed to get much longer. I can remember us asking the Neonatologist how a small persons heart like Kysas could keep doing what it was doing, especially with the such severe heart defect that she had. He was amazed and couldn't really answer our question. It was all up to the man upstairs & he just wasn't quite ready for her, but he was trying to prepare us for what was to come. At 2:29 that afternoon, Tim & Lucinda were visiting us & Kysa started to go into one of her spells. Mark held her, she went into Astylie, and we waited & watched the monitor for about 20 minutes waiting for her to come back & rally like she had done all of those other times. Nurse Tracy listened to see if she could hear a faint heart beat, but she heard nothing. She said that she was going to go call the Neonatologist & have him come in to see if he could hear anything. He came & it was the same result, our little girl had gone before us. She was surrounded by her loving mom & dad & cousins Tim & Lucinda. She went very very peaceful without any struggle or pain. She looked to be glowing after she passed, & looked the best she had looked in days.
Mark & I held her for quite a while after she passed. We called our parents & told them that Kysa went home & they both came up to say their good-byes. When it was time, Mark & I placed her in a white basket & the funeral home took her. We went back to our room that we were staying in & packed our things up from the two and a half weeks we spent there. We then went back into NICU Room 4 and got Kysa things & said our good-byes to all the staff that was there. The NICU staff gave us so much support. I'll never forget coming back into that room & the feeling of emptiness that surrounded me. It had been our home for the past 3 weeks & just at the snap of a finger it was gone.
Nurse Tracy was standing by the window sobbing, I remember going over there & telling her that if tears & love would have saved her she would have lived forever. It is totally the truth, I can't tell you how many people loved her & how many tears were shed for her. She was so loved & left so many footprints in so many peoples hearts.
That weekend marked 3 weeks of Kysa's life here on earth. She was with the same team of nurses that day that brought her into the world & she left her earthly dwelling with those same nurses seeing her into the heavens with all the angels & saints.
In January 2012 we found out that we were expecting baby #2, and we couldn't have been any more excited. The Lord had blessed us with two children about two years apart, how perfect!
On February 15, 2012 I went to see my OB for the first time. They did the early ultrasound & it showed a difference of about 6 days from what she had calculated, but she decided to keep my due date at Sept. 18. From what they could see, there weren't any problems. She told me that she would see me in a month for the routine visit.
The next appointments came & went without any problems/complications. On May 7, 2012, we had our 24 week ultrasound & found out that we were having a girl. We were estatic to say the least....a GIRL!!! During that ultrasound, the ultrasound tech found two coreplexis cysts on her brain. Our Dr. assured us that it could be an early ultrasound, thus the reason for the brain not quite as developed as it should be, but said that she would be keeping a close eye on them to make sure they disappeared. She also told us not to worry about them, but also pointed out to us that it is possible that I could be carrying a baby with a chromosone disorder (if they didn't disappear or if there got to be more). She told us that her son had the same thing & that he turned out to be just fine. At that ultrasound I was measuring behind by about 10 days, but they decided to keep my due date in line so they could gauge Kysa's growth.
In June, I had another ultrasound, which reassured us that Kysa was going to be just fine. The two coreplexis cysts they found last month, one had disappeared completly & the other one was much smaller in size. Mark & I were relieved to say the least, they cysts disappeared just like they were suppose to, and we felt like we had nothing to worry about. During that ultrasound the tech couldn't get a good picture of the heart because Kysa was facing my back & wouldn't cooperate at all. So instead of waiting for another month to see if she would cooperate, Dr. Hunt referred us to a perinatologist, just so he could look at Kysa's heart & make sure everything was as it was suppose to be. At the June ultrasound I was measuring about two weeks behind my due date...Kysa was in the 10th percentile for growth on the growth chart.
On June 13, we saw the perinatologist for the first time. The appointment lasted about 2 hours & was the most throughal ultrasound I have ever had. The ultrasound tech did the ultrasound first taking lots of photos & measurements. She then reported her findings to the perinatologist, he then came in & did his own ultrasound, checking the brain, heart etc. He found that the coreplexis cysts had left completely & also found the four chambers in her heart & said that the blood flow was working as it was suppose to work. He REASSURED us that there was nothing wrong with Kysa....he said she was just going to be a small baby at birth, but PERFECTLY HEALTHY!! At that appointment she was in the 15th percentile on the growth chart & he was going to suggest to my OB of moving my due date for growth purposes. He wanted to see me again in a month just to chart the growth, but again assured us that nothing was wrong with her.
In June I saw my OB two times, one was to have a consult about the perinatologist findings & the other was my routine appointment. At the last appointment in June I had to have the glucola testing. I failed the test! ;( I was devestated! She told me that sometimes girls are harder for women to carry & sometimes it just happens, not to get worked up over it. The next week I had to have the four hour testing at the hospital...again, it showed I had gestational diabetes. My numbers weren't that elevated but elevated or not, I had it. On July 2, I attended a gestational diabetes class at the hospital. They gave me all the testing supplies, etc., & a nutrition course on how to manage my sugars. I had to check my sugar four times a day....I can count on one hand how many times they were elevated.
In July I again saw the perinatologist & he again assured us that Kysa's heart was fine, all four chambers were doing what they were suppose to do & again the brain showed no coreplexis cysts. Picture perfect right?!?! I also saw my OB in July, blood sugars were good, she said that she would see me in August.
August 9th is when everything changed. We went to our OB for our 33 week checkup. She decided that she wanted to do a growth ultrasound just to see where Kysa's growth was. During the ultrasound they found a buldge in her umbilical cord & above that buldge there was a "pocket". There was immediate concern that there wasn't enough or possibly no blood flow at all getting through the cord. After they did some testing they couldn't for sure determine how the good/bad the blood flow was. Our OB consulted with a the perinatologist that I was seeing & they both decided that it was in my best interest to be admitted to St. Lukes & monitored for a couple of days with a c-section to take the baby immediately after. I was also given two steroid shots to strengthen Kysa's lungs, one on Friday and one on Saturday, with the hope of performing a c-section on Sunday, August 12.
Kysa weighed 3 lbs. 5 oz. at the 33 week ultrasound, which is about 3 weeks behind where she should be on the growth chart. Both Drs. felt that Kysa would do much better on the outside world than on the inside world. At the present time they feel that she will be in the NICU @ St. Lukes for approx. 7 weeks, it could be less than that.
Friday, Saturday came & went without any major hiccups. I had our photographer come up & take some maternity photos of Mark & I. What a blessing that was. We were also blessed with lots of visitors, so that made the time go by quickly. On Saturday, Mark toured the NICU & one of the NICU Nurse Prac. came down to our room for a visit. Saturday evening, my family Dr. & priest came to visit me, what a pleasant surprise!!
August 12, 2012....the day our lives changed forever. About 6 that morning, the nurse came in & told me that I could shower for the day if I wished to do so. I got up & took a quick shower, they then came in & prepped me for surgery & the anesthesiologist came in for a visit as well. At about 7:30 they took me down to the operating room to insert the epidural into my back. I was absolutely amazed at how many people were in the operating room....there had to be at least 15 Drs. & Nurses awaiting Kysa's arrival. At 8:05 Dr. Hunt began the c-section to deliver Kysa into this world, at 8:07 she was born & she came out CRYING, which we were told was a good sign. The NICU team got her stabilized & took her upstairs. Mark followed them up & I was placed in recovery for about an hour, then wheeled down to my regular room. Mark came down about a half hour after I was in recovery & said that everything looked good & that she weighed 2 lb. 11.7 oz & was 14.5 inches long. He also said that they had used the sirfactin to strengthen her lungs, but again that was normal procedure for a 33 week old baby. After I was out of recovery the nurse wheeled me up in my bed to see our daughter. She was amazing & I was able to hold her finger from my bed.
The day continued on, we had lots of visitors & Kysa got to meet lots of family & friends. About 3 that afternoon, Mark went upstairs with some friends for them to meet Kysa & they were doing an ultrasound of her heart. Mark stayed up there while they were there (over an hour or so) & the nurses told Mark that the Dr. would be down to talk with us about something they found on the ultrasound. About 5 that afternoon, we were in our room visitng with some friends & Dr. Wilson & 6 nurses came into our room. His exact words & I will never forget them "I'm sorry, but I have some bad news about your daughter, she has a two major heart defects & a disorder I believe to be Trisomy 18". The only other thing I remember from that conversation was him saying a lot "I'm sorry" & that we needed to meet with a heart Dr. about her heart condition. I also remember the nurses with tears streaming down their faces. I was in udder shock, all I could do was look out my hospital window & ask WHY? Mark & I got it together & our friend came back into the room & comforted us for the next half hour to hour. We called our parents & priest & asked him to come baptize her because we didn't at that point know how long she would be with us. Owen went & stayed with Jamie so our parents could come up & be with us. The Neonatologist also talked to them about what was going on.
Fr. Hemann baptized Kysa that evening around 8, surrounded by her loving family. Kysa's god parents are her grandma's, how perfect!
Mark stayed with me that night at the hospital. The next morning, both of our parents came & as soon as I was able to escape my hospital bed I went upstairs to see her.
Tuesday, August, 14 we met with the heart Dr. He explained to us the problems with Kysa's heart. She had what they called VSD (ventricular septal defect), where the bottom chamber of the heart didn't have a wall separating the heart into two chambers, she also was missing some valves in the lower chambers as well. She also had a what they called a PDA, this is where the valve that leaves the heart & goes to the lungs didn't close at birth, like it's suppose to do, so what was happening was blood was immediately being pumped from her heart to her lungs. He told us that IF she doesn't have Trisomy 18, then they would immediately begin medication (ibprofen) to try to close the PDA, & if that didn't work then they would do surgery to close that. After she had healed from that surgery & her lungs had strengthened, they would then about 6 months down the road do open heart surgery to repair the VSD. HOWEVER, if the chromosone testing came back positive, there would't be any surgery because of her life expectancy, and there wouldn't be a surgeon out there that would perform the surgery that was necessary for her.
Immediately after our consultation with him, the University of Nebraska Medical Center called & had Kysa's chromnsone testing back, the nurse practitioner gave us the very heart wrenching news that the test was 100% positive that she did in fact have Trisomy 18. At that point we knew that there was nothing we could do to help save our daughter. All we could do was ask the Lord why?
On Wednesday, I had our photographer come to the hospital & take photos of Kysa. Not knowing how long she would be with us, I wanted to capture every moment that I could. We also had some pictures taken as a family of "four", & we had some taken with her grandparents. She did an AMAZING job capturing "our story" behind the hospital walls. The NICU staff got a flower headband ready for us and a sleeper. I was able to change Kysa's diaper for the first time & dress my baby girl for the first time as well. It warmed my heart so so much!
In the next few coming days Mark & I spent as much time with her as we could. We also met with the NICU staff daily & they were there to answer any questions we had. They told us that we would have to decide when the time was right to remove the ventilator. We were encouraged to take our time & that they would be there for support & help us with anything that we needed help with.
I was released from the hospital on Thursday, August 16. That night Mark & I came home to greet Owen before he went to bed. We then took him to daycare the next morning & then we had a meeting with the Neonatologist, the NICU staff, our parents & our priest.
During the care meeting, on Friday, August 17, the Neonatologist confirmed with us what we already knew...Kysa had Trisomy 18. Also at that meeting it was discussed what the "care plan" was for Kysa. He said that at some point Mark & I would have to decide when to remove the ventilator. Mark & I were having the most difficult decision on "when" that time would be that we would remove the ventilator. It felt as if we were choosing the day that she was going to pass. Our priest assured us that if the Lord wanted her to live, he would let her live & to not look at it like that. He said that the Lord would work through us to help us make that decision. He said that we would know when the time was right. He also told us that he felt that "today" wasn't the day. We also discussed with Father what means as far as the Catholic church goes that we needed to maintain. The ventilator was extroidnary means, but we needed to maintain food & water.
After the care meeting Mark & I told the Drs. & Nurses that "today" wasn't the day & that we would let them know when we felt the time was right. Again, they assusred us that there is no right or wrong & encouraged us to take our time to get the proper closure. It was amazing to have all of our family there that day to support us & our priest. It helped Mark & I alot.
The next couple of days we had a lot of visitors stop & see us. We went to church as a family on Saturday night & Owen came up to see his sister again that evening. Mark & I stayed in the family room that is connected to the NICU, it was comforting to be that close to our daughter.
On Sunday evening, Mark & I went home to spend sometime with Owen before he went to bed that evening. We planned on heading out right away the next morning after we dropped Owen off at daycare. There was a change of command at the NICU on Monday so we needed to be there to meet the new Dr. coming on & to thank our current Neonatologist for all his time that he gave us.
On Monday morning on our way to Sioux City, Mark & I discussed that we needed to proceed with removing the ventilator. We decided that we would proceed with that on Tuesday sometime, August 21. We spent the entire day with Kysa & that evening we stayed in the family room. We held her, gave her a bath and told her how much we loved her & that she would never be forgotten. The hardest part was telling her that if she wanted to go home & be with Jesus that it was OK to go. Both priests came that day & visited with us, reassuring us that we were making the correct decision. They told us that if God wants her to live, she will live, if he wants her in heaven he will take her. We questioned why he was making us make that decision & that if he wanted her why couldn't he take her at his command. Fr. Rich put it so clear....God is working through you two to get her. It made sense, but still was sooo hard! Mark & I went to bed that night knowing what tomorrow was going to bring....we did sleep, but not sure how sound of sleep it was.
Tuesday, August 21, 2012....our parents came up & said their good-byes to Kysa alone, held her, etc. After they were done, it was time for Mark & I to have our time with her before we removed the ventilator. We drug our feet like you couldn't imagine....we called our priest, he came to the hospital around 12:15 and told us that he had a meeting to attend, but he would be back & then he said that he would help us with our decision. When Father came back we removed the ventilator at 2:20. Father, Veronica, Amber, Alexi, Mark & I were in Kysa's room when the ventilator was removed. She cried, although no sound came out, she was clearly crying after the tube was removed. All of us huddled around her, prayed over her & Father continually talked to the Lord telling him that it was ok for his will to be done. After about 2 hours had passed she was like a normal baby without the ventilator. We then fed her & added the nasal oxygen to her. Our priest from our parish arrived around 4 that afternoon & visited with Mark & I for a while & then went back to our parent room & visited with our parents. They then came into Kysa's room and were just amazed, as were we, that she will still with us. We were told that she would last 2 hours, and at the most they thought 2 days. The Drs. & Nurses were blown out of the water that she lasted past the two hour mark & she had really good vitals. Mark & I went back to our room to rest, our adrenaline was gone...we were totally drained. We rested for a bit & then went back into the room to see Kysa. We stayed that night with her in the hospital, because we didn't know if "tonight" was going to be the night for her to go home & be with Jesus.
Tuesday evening, the nurses molded Kysa's hands & feet and my finger holding onto her finger & made us a shadow box out of the molds. A keepsake that we will cherish forever!!
Wednesday was really laid back, we met with the Dr. & nursing staff that morning & they were simply amazed that she was doing so well. Mark & I were elated that she beat the odds they gave us & we felt sooo much better that she didn't pass on the day that we chose to remove the ventilator. We felt as if it was all in God's hands at that point.
Thursday, August 23, 2012, Kysa started to develop Apnea Spells. The first one was that morning while Mark & I went down to the cafetoria for some breakfast. We came back up from breakfast with nurses lunging at us to get into Kysa's room immediately. Mark held her in the chair & talked to her...she came out of that one pretty fast, but her color was ashen grey/blue. She didn't have that perfect pink baby skin that we are used to seeing. That day the spells continued to happen between 1 and 4 hours apart, and they lasted approx. 10 to 14 minutes. Her heart rate would stay at about 35 to 50 beats per minute, but she wouldn't breathe hardly at all during the spell.
The spells continued through the night on Thursday, all day Friday & Friday evening. Magically at about 10:30 on Friday evening they stopped. That was her last one...praise the Lord. Mark & I were able to get some good sleep that night & Kysa rested comfortably too.
That weekend we had lots of visitors, it warmed out hearts so much to have all the company we had.
On Sunday, the Neonatologist met with us & discussed with us the two medications that Kysa was on, caffiiene & lasix. The caffiene was a stimulant that was stimulating her breathing, & the lasix was being used to help keep her lungs free from fluid that is caused by her congestive heart failure. He told us that there wasn't a right or wrong answer, but that we needed to decide if she should stay on that medication. After that meeting with him, I decided that I needed to get out of the hospital, so I went home & did a couple of things at work to clear my mind & then I went & spent some time with Owen. About 7 that evening I headed back up the hospital & spent the night with Kysa & Mark. I remember saying to Mark that night when we went to bed, I thought our hard decisions were over, & yet it seemed that they just kept coming.
On Monday morning, since Kysa's color was so good, I had the nurses call Charley's Angels & have them come up & take pictures of Kysa. She was having such a good day & she looked so good. I was so glad I decided to do that.
Over the next several days Kysa's vitals remained strong, heart rate at 150 plus & respirations at 80 per minute. When she was on the ventilator her respirations were at about 60-65 with her only doing 5 or so of them.
On Tuesday, August 28, Mark & I decided to remove the lasix & caffiene from Kysa. After a consultation with our priest, he said that it could be looked at as extroidnary means. Mark & I decided that we would remove the medication. We also got input from our parents, cousins who are Drs. and our hometown family Dr. We felt with all the given information we were given, that it was the next step.
On Tuesday & Wednesday evening Mark & I went home to spend time with Owen & try to have some sort of normal routine for him, because Kysa was doing great, her vitals & respirations were amazing the Drs. In fact, they checked her O2 level and it was at 88%, which totally amazed them. Her color was that perfect pink baby color that all babies have. They were also amazed that her lungs sounded clear.
On Thursday morning when Mark & I arrived back at the hospital, Kysa's color was more grey/ashen than it was the day before. I knew the moment that I walked into the room that I wasn't leaving her bedside until her color returned. Thursday morning & afternoon went really well until about 4:15, then her heart started going into bradycardia spells, this is where the heart rate dips, but her respirations remained there, not strong, but she still was breathing. Mark headed out just before the spell to go get Owen from daycare, he got to the outskirts of Sioux City & she had already had 2 spells within 15 minutes. The nurses thought that maybe Mark should come back. He came back & the spells remained for the rest of the night. Her heart rate would drop to around 30 beats per minute, but it would come back, the spells lasted about 4-8 minutes each & were about every 2-4 hours. We got some rest that night.
Friday Kysa continued to have spells all day long. Again, they were about every 2 or so hours and her heart rate fell a little lower each time. Friday night, Mark & I were up every hour on the hour with her. Her spells gradually continued to get worse, and much longer. They were lasting about 12-18 minutes. They were like clock work, her heart rate would drop to 15 beats per minute & stay there for around 2-5 minutes & just like that it would rebound back up to 60, then 90. When her heart rate reached 90, she would start to breath much faster & more deeper breathing, when her heart rate was so low, most of the time she wasn't breathing at all, but occasionally she would take shallow breaths. After the spell was over her heart rate was back up into the 150's, just where a normal babies heart rate should be.
Saturday, September 1, 2012, Kysa's spells continued just like they had the day before. Mark & I were whipped from zero sleep the night before. We pushed through though knowing that we wanted to be by our daughters side no matter what. On Saturday, her heart rate started to go into Astylie, which means ZERO pulse, the first time her heart dropped that low, I can remember feeling, is this it, is it her time? Then just like that her heart would start back up & before we knew it her pulse was back up to 90 & she was breathing strong again. The spells lasted around 16-18 minutes. It seemed like time stood still during those spells, but I also remember thinking, wow that was fast, because you are so caught up in it, that you really do loose track of time. Again during that night we were up every hour on the hour. Saturday Kysa got some very special visitors that had been wanting to meet her since the day that she was born. Her cousins, Greg, Jill & Andrew came & got to meet her for the first time. What a blessing it was.
Sunday, September 2, 2012, Kysa's spells still remained. The Astylie part of the spell seemed to get much longer. I can remember us asking the Neonatologist how a small persons heart like Kysas could keep doing what it was doing, especially with the such severe heart defect that she had. He was amazed and couldn't really answer our question. It was all up to the man upstairs & he just wasn't quite ready for her, but he was trying to prepare us for what was to come. At 2:29 that afternoon, Tim & Lucinda were visiting us & Kysa started to go into one of her spells. Mark held her, she went into Astylie, and we waited & watched the monitor for about 20 minutes waiting for her to come back & rally like she had done all of those other times. Nurse Tracy listened to see if she could hear a faint heart beat, but she heard nothing. She said that she was going to go call the Neonatologist & have him come in to see if he could hear anything. He came & it was the same result, our little girl had gone before us. She was surrounded by her loving mom & dad & cousins Tim & Lucinda. She went very very peaceful without any struggle or pain. She looked to be glowing after she passed, & looked the best she had looked in days.
Mark & I held her for quite a while after she passed. We called our parents & told them that Kysa went home & they both came up to say their good-byes. When it was time, Mark & I placed her in a white basket & the funeral home took her. We went back to our room that we were staying in & packed our things up from the two and a half weeks we spent there. We then went back into NICU Room 4 and got Kysa things & said our good-byes to all the staff that was there. The NICU staff gave us so much support. I'll never forget coming back into that room & the feeling of emptiness that surrounded me. It had been our home for the past 3 weeks & just at the snap of a finger it was gone.
Nurse Tracy was standing by the window sobbing, I remember going over there & telling her that if tears & love would have saved her she would have lived forever. It is totally the truth, I can't tell you how many people loved her & how many tears were shed for her. She was so loved & left so many footprints in so many peoples hearts.
That weekend marked 3 weeks of Kysa's life here on earth. She was with the same team of nurses that day that brought her into the world & she left her earthly dwelling with those same nurses seeing her into the heavens with all the angels & saints.
Wednesday, November 7, 2012
Keepsake Chest
This past week a GREAT friend was able to help me "refurbish" a keepsake chest to put Kysa's things in. It was a lot of fun & am so thankful that she agreed to help me. I feel so blessed. Also, I finally was able to get Kysa's photo hung on the wall & the Willow Tree Figurines put beside them. A good feeling to have the little things finished.
The Before pic!
The After pic!
Halloween 2012
This year for Halloween Owen was a MONKEY! How fitting....he is our lil monkey! He had a blast, here are a couple of photos from our night of Trick or Treating & some photos of carving pumpkins.
Sunday, October 21, 2012
Uncle Leroys Pumpkin Patch
Today we went & visited Uncle Leroy's Pumpkin Patch in Denison. The weather was BEAUTIFUL!! What a perfect day. Here are some pics to share.
Friday, October 19, 2012
Thursday, October 11, 2012
Farming with Papa!
Owen loves to play with his tractors. My mom & dad came out tonight
for supper & Owen & his PAPA got to play tractors. He was in
heaven!! Thanks papa for making Owen's night!
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