One Of This Month's Featured Families!
June 2003
The Raines Family
Stephen, Marshall Syndrome
Ashlyn, Marshall Syndrome, BCP
Aaron, BCP
Texas
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Once upon a time there was beautiful princess in a far away kingdom.oh wait wrong story, this is our story. However in many ways it has felt like a fairy tale. However we have not fought dragons and wizards, but our own life challenges and have grown up, grown closer to Heavenly Father and grown much closer to each other.
Stephen and I met while working at Kmart of all places. He was my boss. I asked him out for our first date. I knew from the start that he was the man I would marry. He says it was later that evening at dinner that he knew I was the one. He just did not know when he would ask. As we spent all night talking getting to know each other, he told me about being born with a sub-mucus cleft palate. He told me about surgeries and the things he had been teased and made fun of about. Much of this was all very new to me, I really did not know what to think of it all. He seemed pretty well adjusted and he was very good looking, so I really did not understand. I was hearing what he was saying but did not truly understand the way it had all impacted his life. I did know that it all sounded like an awful lot for one person to go through and his faith in God and the a surety that he had, that it was all for a reason, really was remarkable.
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Late in the night as we were talking out of the blue he asked me to marry him. Even more out of the blue I said yes.
It was a week later as we were shopping for the engagement ring that I really and truly believed that he really meant it. 2 months, 2 days from our first date we were married. So much for a long engagement.
In 1994 Stephen started having problems with his eyes. We saw several eye doctors and went through several different lens prescriptions, nothing seemed to help. Finally one doctor figured out that it was cataracts. However in a person his age they were usually caused by eye trauma. There had not been any trauma so where did it come from? We had the first lens replaced and 2 years later the other.
About 6 months after we were married we started to try to have a baby. We both wanted a child very badly. After about 6 months of trying we went to the doctor and found out that I did not ovulate and the use of fertility drugs were needed if I was to get pregnant. I spent the better part of the next 3 years
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trying Clomid. We did not have insurance for infertility so going any further was not an option. During a break from the drugs, I had hernia surgery, 2 weeks later a car wreck and found out that day I was pregnant. What a shock, no drugs, not even trying.
While I was pregnant I was sent for a level 2 sonogram, because Stephen had the submucus cleft. I was told that they did not see a cleft lip so they did not think that there would be a cleft palate. I thought at that point "well he did not have the lip so why should we think the baby should." I did not say anything at the time. We were told not to expect anything but they could not give us a guarantee.
I was due Nov. 25,1997. I went to the doctor on the 24th and he said if I had not had the baby by Dec. 2nd he would induce that morning. Well, the end of Nov. came and went, so we headed to the hospital early in the morning on Dec. 2nd. When we got there, I was dilated to a 3. They started inducing at 8:30, by 10:00 the doctor felt I was far enough along to break the water. When they did they found the baby's first bowel movement. It was my first time, but I did know that that was not a good sign.
As they had me change positions we watched the baby's heart drop. The only way I could lay, that her heart rate would not drop, was on my left side. She was sitting on the nerve in that hip, laying on that side was starting to really hurt. With her heart rate dropping we knew that something was very wrong. I did not want an epidural at all, but if I had to have a C-section that was the only way I would get to be awake.
About 1:00 the nurse asked if I wanted the epidural. I asked what the chances were of me getting to push out the baby myself. She said 70/30 against. I wanted to be awake so I could see her immediately and so Stephen could be in the operating room with me. So I took the epidural. It didn't work. I still had all feeling in my left side and most in my right. I was becoming very frantic by now things were not looking good, the baby's heart beat was still dropping and so many people were in and out of the room checking things.
They then said, that the epidural did not work and it would have to be done again. We asked for a few minutes to pray about it. (I had not handled the first one well and the prospect of having to do it again was not sitting well)
Stephen went out to see the doctor, to see if anything could be done so they did not have to redo it. He was watching the monitors and on the phone with the office. He told the office to cancel his next appointments and told Stephen that the epidural did not matter there was no more time.
The doctor came back in the room followed by Stephen and said "We're going now". Wire and monitors came flying off of me as they got me ready to go. As I left, I heard them tell Stephen to change his clothes and they would show him where to go so he could watch through the door.
As they were taking me down to the operating room I was crying. The nurses were apologizing about it not going the way I had planned. That did not matter to me I had no idea what was wrong with my baby, whatever was best for her.
I prayed that I had come this far I could not stand to lose her now, but that GOD's will was to be done, but if all was okay GOD give me peace. I got it that instant. I was scared but I knew that it would be okay.
3:01pm was the last time I saw as they pulled the sheet up over me and I heard my doctor say "we're going in." I thought "now!?!? I'm not asleep yet" that was all I remember until the nurses wake me up in recovery.
Stephen came in and told me we had a beautiful baby girl and she was very healthy. She had a total cleft palate but she was okay.
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The doctor decided to go on in because they had totally lost her heart beat for a few seconds and he could no longer watch the heart rate go up and down like that. When they got in, they found out why. Her cord was wrapped around her neck 3 times. Before they broke the water she was fine, the water kept it from tightening up.
I had been around babies since a very young age. But this was our first and I was unsure of how to feed her with the cleft, but I really wanted to breastfeed. We tried for the first day and it was just not working. I did give up on it, and went to the cleft bottles they had in the nursery. I stayed the full 4 days that I could for the section to make sure I was able to feed her. As we were working on that we made the phone call to Dr. Salyer's office for our first appointment."
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About 2 days after we came home from the hospital I found out that you could keep up your milk production with a pump. I knew about pumping to supplement but I did not know you could do it exclusively. I pumped every hour for 24 hours trying to get my milk back. It did not work. Of all the things that we have gone through I regret not getting to give her breast milk the most. I felt so cheated, at the time, like I was not really a mom. I promised myself (and my next baby) that I would pump if that baby had a cleft too.
Ashlyn was just like any other little baby with the exception of needing to be feed upright. And of course if she spit up it came out her nose too. I got very used to that, so much so that I would forget to tell nursery workers at church or MDO about it. Despite her little temper she did every thing on time rolling over, sitting, pulling up, and walking. Her speech was about 9 months behind but that was normal.
It was during this time we heard the words Marshall Syndrome for the first time. When Ashlyn was born, they said she had Pierre Robin. But when we met with the geneticist and discussed our family history, he came to the conclusion that we were dealing with Marshall
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Syndrome, which is an off-shoot of Sticklers. This helped explain a lot for Stephen and his parents. The nose, face, sub-mucous cleft and cataracts are all things that he had dealt with. There was finally a name to go with the problems he faced.
Well, with Stephen's history we knew that surgeries were in the future. But this was our first swim through the parenting pool and we had our share of surprises. One of them was Ashlyn's cleft repair surgery. We were all set to have the surgery on Sept. 25th, 1998. On Aug 20th, a Thursday, we got the call that we could go on the following Tuesday or we would have to wait until the end of October. What a SHOCK!!!!!!! Well, we chose Tuesday. We hurried around to get things set up. Stephen was starting a new job on Sept 3rd and was training the new person for his old job. He could only take off the day of the surgery. This was going to be hard.
We called all of the Grandparents, Great grandparents, aunts, uncles, and the church. Everyone was surprised but ready to go.
Monday night, the anesthesiologist called and told us the best news we could have hoped for. Since Ashlyn's surgery was late, she could have bottles until 6 am, and clear liquids until 8am. What a relief! The next morning we got her up at 5:30 for the last milk bottle and gave her juice at 7:30. At least she did not have to suffer without food from midnight on.
We got to the hospital at 9:30 with my mother right behind us. We went up to the pediatric floor to check in. We knew we were looking at a long wait. The surgery was supposed to be at 11am, but it was almost 11:40 before they called and said they were ready. We let Ashlyn play in the playroom. Stephen's parents had came up along with his aunts and some friends of his parents. We had quite a waiting room full. But the love and support we felt was enormous. As everyone came in, we sent them to the family waiting room. We were being a little selfish in that we wanted to have just our time with her. I could feel the stress mounting and I felt that we needed to be a family for her, just the three of us. I thought that with all that was going on, she needed to be with us. I knew that after the surgery, everyone, family, doctors and nurses would be coming in and out of the room.
They gave Ashlyn what they called "silly juice" before they took her downstairs. We got to carry her downstairs and go back to the pre-op room with her. By the time we got there, she was very, very out of it. The medicine did make her a little silly. You could tell that she was very sleepy. And she was seeing more than one of things. She kept reaching for her Daddy, but then would look at her hand like "I thought for sure that was him." We stayed until they took her back for surgery. Our pastor and associate pastor, Brother Keith Brister and Rupert Robins, along with Tom, (a CLOSE family friend), met us as we were leaving the pre-op area. They were coming back to see Ashlyn, but just missed her. We stood outside for a while, not wanting to leave our daughter quite yet. They walked down with us to the waiting room where the rest of the family was. We prayed for Ashlyn, along with the doctors and nurses.
As the waiting started we realized that we needed to get something to eat because it was going to be a long day. We did not want to eat in front of Ashlyn, so we had not had a thing to eat. So our parents talked us in to going to get lunch. My mom and Stephen's Aunt Pat said they would wait there so if anything happened they could page us. Stephen's parents, Aunt Betty, and Tom went with us. It was nice to be able to relax a little and take our minds of the whole thing for a few minutes.
When we got back, it was only a few minutes until Dr. Salyer came out to say it was over. Everything went wonderful. Now came the hard part. She was in the Pedi- ICU. Since she has the very small nose and the recessed chin they wanted to make sure that she was learning to breathe without the cleft. It would be a little while before they had her ready for us to see.
When we went back it was almost more than both of us could handle. Ashlyn has always had a temper and when she does not feel good, then it's even worse. She was giving the nurses a real temper tantrum when we got back there. Stephen and I went straight to her side. She turned around to face us and there was blood coming out of her nose and mouth. We were told about this in advance, but it did not really prepare me for what it really was. I backed into the wall and started to cry uncontrollably. I almost ran out right then and there. Stephen then reminded me that this normal. All I could say was "Not for my baby." After a few seconds I finally pulled myself together. I knew that I had to for her sake; she needed us to be strong for her.
Stephen has gone through seven major surgeries to repair his nose and face. Afterwards he said that it was 10 times easier to be a patient than to be the parent of a patient. I knew that if he said it was OK, it would be. After I got myself calmed down, Stephen lost it. He said it was the smell of the blood and mucus on Ashlyn that brought back all the memories for him. He became physically ill, and left the room at that point. I knew that this would be hardest on him having to remember all that he went through, but this was even worse than I had imagined.
We took turns letting the Grandparents go back to see her.
Everyone was discussing where we were staying, since she was in PICU. Stephen had planned on staying with his mother at his aunt's house. He would be close if something happened and we needed him, but he could get some sleep so he could work the next day. My mom and I were going to stay at the hospital with Ashlyn. People kept telling me to go home and get some rest and let the staff take care of her that night. I was in major "MAMA BEAR mode" so that idea was not sounding very good to me at that point. Then they gave her some medicine for pain and her oxygen level dropped like a rock. They put the oxygen mask back on her and boy did she fight that. Stephen and I stood back to let them work. Both of us were crying, Stephen kept saying it was okay, that they knew what they were doing. I, on the other hand, was not so sure. Finally the level started to go back up. That was all it took for me, I was NOT LEAVING until I took my baby home with me.
Since the epidural did not work with Ashlyn I told the doctor to go ahead and "knock me out." I woke up later in a recovery room. Once again Stephen told me our baby has a cleft. But this time he was in NICU. He was in need of oxygen. This took me by surprise. I would not be able to see him until I was wake enough to get up and walk. I remember after Ashlyn's birth that it took a long time for me to feel like I could move again. This time I was saying "get me out of this bed now I want my baby." I got to see him late that evening. We saw the pediatrician during the day. I knew almost right away that I did not like him. I thought he was very arrogant and talked down to us from the very first words out of his mouth. He told us several times how excited he was to be able to treat a baby with Marshall Syndrome and that the staff would follow our lead with Aaron because we already experience with Ashlyn. That never happened. It took us 2 ½ days to get him out of NICU. And that only happened after I had it out with the doctor.
They wanted him to increase what he was eating by 10cc every feeding until he was eating 2oz. My plan was to pump, which I started doing religiously. I asked the doctor if every baby that was breastfed was going to starve because the mother's milk did not increase by 10cc every feeding. He just looked dumb-founded, and said that was what he had ordered. Thursday night they told us they had a feeding tube because he was not increasing by 10cc. We told them that that was not what we were going to agree too. They agreed to let us try our feeding method as every time the Haberman bottle was tried by anyone it was a dismal failure.
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Aaron was not comfortable with the Haberman at all. We took the preemie-nipples and made large holes in them as we did with Ashlyn and we worked with him for about 30 minutes. They grabbed him up and said if he did not do it in 30 minutes he has to have the tube feeding. We went nuts. We told them it takes time to find the right hole size and let him get used to it. I was in tears by the end of the night. And ready to sign him out of the hospital against medical advice. The only thing that stopped either one of us was that Jessie was not legally ours yet (the adoption would not be final until January). We did not want anyone saying we were not taking care or our children.
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We spoke with the hospital social worker and explained we had been in touch with our pediatrician and Dr. Salyer's office. Both had said that all we needed to do was call and they would have an appointment for us as soon as we left the hospital. We were told all we could really do was get discharged to a pedi-room. At least there it was us who would be his caregivers, not the nurses. We also did not want the NICU doctor to be in charge of his care anymore. In fact I was very militant about that fact, he was not to see Aaron for any reason unless Stephen or I was in the NICU at the time, and even then he had to have a nurse with him. They agreed to our terms but told us it was very late and they would not be able to find someone to take the case that night. We had to wait until morning.
The next morning Stephen went down to see him while I got in the shower and got freshened up. They had put the feeding tube down his throat again, without telling us after we left the NICU, and knowing what
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Mom and I took turns that night sitting with Ashlyn every 2 hours. She had one more scary time with the medicine. But other than that, the night was very quiet.
The next morning Stephen and his mom came back. Ashlyn tore her IV out, so we really started to push the fluids by mouth so we did not have to put it back in. She was not drinking great, but it was a start they said. Stephen stayed for a while and went in to work.
Later that morning, they released us to a room. We were so glad to be there. Ashlyn was starting to feel better and wanted to get down on the floor and explore a little. We could not let her in PICU. You could tell how happy she was in the playroom. She did tire quickly, but she did enjoy it.
My mom came back that night and stayed in an empty room that was the last one that they used. I stayed on the cot in Ashlyn's room. The nurses changed her and fed her in the middle of the night so I could get some sleep.
The next day she was eating better. On the pediatric floor they had three red wagons for kid towing purposes. We did a lot of towing. She even took a few naps in them. She really seemed to enjoy them. Stephen got off early to take us home. They finally let us go home about 3:00.
In 2000 we seriously started talking about what we would do if we could not have another child. We wanted to adopt but the cost of domestic and foreign was WAY out of our price range. We started to look in to foster care through the state. We could adopt for only a fraction of the finical cost but the emotional cost could be very high. After much prayer and conversation, we decided to go this route. In April 2001, we got our license to be a foster/adopt family.
We had five little ones in our home over the next year and a half. Three baby boys and 2 baby girls. Our first placement, a 5 month old, little boy, was with us for 10 months and was heartbreaking to loose. Our 3rd placement was a newborn girl, straight form the hospital. She was our best bet we thought, only to loose her 8 weeks later. Our hearts were really starting to hurt.
It was during this time that I decided to get a hysterectomy. I had been going through so much pain and anguish due to my PCOS that we decided that we would complete our family through adoption. On the weekend, before the Mon. surgery I was told I was pregnant! WHAT?!? At the same time, we are unsure of whether or not we would get to keep the newborn, I found out it was a tubal pregnancy. I had surgery for that just about 2 weeks before she left. My heart and emotions were way too raw. I was feeling as if my dreams of being mom to more than one baby were being ripped away.
We got a call, a few weeks after loosing our third placement, from our family's worker. She knew we were taking a break but she had looked everywhere to find a home for a 2 month old, little girl. The system was so overloaded at that particular time, she was placing kids with private agencies and even putting them in counties several hundred miles away. She really needed us to take this little girl for at least the initial 2- week investigation period. We agreed. So we were back to 3 kids, including Ashlyn. I was not home that night when worker dropped her off. But when I came in, I heard Stephen sitting in the living room recliner saying "look at the sweet baby girl. She is a pretty baby girl". I knew at that point that she was here to stay as long as she needed too.
That was October 2, 2001. In December we lost our little man. He went to an aunt and uncle. We once again were going to try to take a very long break and just deal with the 2 girls that we had.
In February, I found out that I was once again pregnant! We received the wonderful news while we were at Medical City Dallas doing Ashlyn's yearly team visit. What a Valentines gift. Not only that, but the courts were moving to terminate the rights of our little girl's bio mom. Wow, we could get her too. What a ride. With the news of our up coming birth Dr. Salyer decided to wait on any surgery for Ashlyn. "I will most likely see you in 9 months. So if there is a problem let me know."
The next few months were pretty quiet after a short bout of getting my blood pressure under control. After the 3rd month we got one last emergency placement, a little boy 8 months old just a few weeks older than our baby girl, and weighed twice as much. He left after a few days when a permanent foster home was found. I knew then that either way it went with our last little one we were done.
During the pregnancy, I had approximately 9 level 2 sonograms. During which time the Doctor told me that he was unsure if our new little man would have Marshall Syndrome as well. Later on towards the end he told me since there was no place to look up and see a picture of what it would look like on a sono he was not for sure, but if he was a betting man he would bet this is what it would look like. The next day or so I was going through Ashlyn's baby book and talking with her about what would be happening when I had our new baby, I came across one of her sonogram pictures. I got out the most recent one of little man. They looked like the same baby. I knew at that point, without a doubt, that he would have it too.
While all this was going on, we were meeting with our foster baby's attorney, workers, even bio-mom. We were really getting close and wanting her very much to be a permanent part of our family. Her bio-mom wanted her to go to her new boyfriend's uncle and aunt. So she would have more access to her. CPS and the DA did not want this. We ended up in court letting the judge decide. I felt a lot like the 2 mothers that went before Solomon fighting over the baby. All we could do was pray the judge had the wisdom to know that she was much better off in our family. In any other case, we would have felt for the other family, they too had infertility issues and wanted a baby badly. But the mom had a very unstable history, and if things went south with the guy where would it leave this poor baby. Besides that she was truly part of our family now.
So there I was 8 months pregnant and supposed to be on bed rest with pre-term labor and hypertension with my 3rd baby, testifying for my 2nd baby. I was there that morning, with Stephen and my mom, to hear the judge say "It is in the best interests of the child to stay with and be adopted by the current foster placement." Neither of them believed what they heard. Both asked me what she had said. I cried as I told them "she said that she is ours. She is really our baby." That day she became Jesalyn Lee Raines.
This was truly a roller coaster time for us, because during this time we found out that Stephen was being laid off. They were offering him a guaranteed contract and he was able to work it out with his moonlighting job to cover our income, but we were loosing our benefits. COBRA here we come! We had initially planned for Ashlyn's next surgery to be in February. With this news and not really knowing how messed up the personal insurance industry is in regards to Marshall syndrome (and clefts in general), things got moved up. 3 weeks after Aaron was to be born we were scheduled for surgery.
About 3 ½ weeks later I was back in the hospital with my blood pressure out of control again. It was about 10:30 on Tuesday night when we called mom to come and stay with the girls. We went in to triage and got checked out. Of course, with my blood pressure problems, we had been there many times. So we went with the idea, they will check me out and then send us home. I was to be there the next Monday for a scheduled c-section anyway. Wrong..I was going to miss that by a few days. My blood pressure was about 150/120 when I got there. They were really worried I had the headache and nausea, the whole nine yards. They finally got my blood pressure down but I was still feeling way too cruddy. The doctor on call told us he was too uncomfortable with me waiting any longer. So it was time to go. By now it was about 2:00 in the morning. We called every one and told them we were on our way. We would call when the baby was here and I was awake.
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we had discussed. That was it, I called that quack they called doctor (by the way he was the head of NICU!) and demanded that he discharge Aaron, he then told us he was not going to be goaded into doing something he knew was wrong. We countered that neither would we. I knew if given the opportunity and the time to work with him, I could get him to eat. He finally agreed to release us to a pedi room.
I had stayed at the hospital in maternity because I was not leaving with out my baby. So we arranged to get released. We went home and repacked a bag for us. I got to see the girls for the first time in almost 3 days. They were thrilled and so was I. Ashlyn asked several times where brother was. We explained that he was still at the hospital and that we were going back there to be with him. I was going to arrange for them to stay the weekend with Stephen's cousin and her husband. Ashlyn was very worried about brother. I think she thought we had been lying to her about the baby in mommy's tummy. She talked about him coming out and needing to come home. Then she cried about us going back to be with him she wanted me to stay home. Jessie was very clingy as well. She just sat on my lap for about 20 minutes, then cried every time I tried to get up. This just made me more furious with the doctor that he would not listen to us. Good grief, we had an almost 5 year old with Marshall Syndrome! She would not be almost 5, if we did not know what we were doing. He knew the doctors would get us in as soon as we were released. We even went to church with one of the pediatricians in our practice. He would have come in later in the evening to see us if we needed. This doctor had never treated or even seen Marshall Syndrome baby before. It appeared as though he was using our son for his own research.
When we got back to the hospital they had Aaron ready to go, which surprised us a great deal. The NICU was due to be closed shortly for 2 hours for shift change. We were expecting to just be able to go in look at him and be told to wait until the unit opened back up. We had made plans with family friends to go to dinner after we got there. So we had to change things up a bit. We went over to the pedi room and got settled in. The nurse told us it was about time for him to eat again. I stayed with Aaron and sent Stephen and our friends, along with my order, off to eat. I started working with him and the preemie nipples again. It took about an hour to get him settled on a hole size he liked. He took just over an ounce. The sink got the rest. When the nurse came in and asked how he did I said "GREAT, took the whole thing." Yes, I lied through my teeth.
I was pumping on a regular 3 hour schedule. I was starting to get a nice supply going. I would pump and give him what I pumped at the next feeding.
Part of them letting us go into a room was that he was put on an apnea monitor. That in and of itself was an adventure that took us 3 months to get off of. Saturday night we had a home health agency come in and show us how to use the monitor at home. We were told that it would take anywhere from 2-3 hours to learn how to operate it. We had it in less than an hour, Stephen DOES keep us computer literate!
Also that night the girls got to come up and see Aaron for the first time. Ashlyn came in and was totally taken with her brother. She did not see him at first she was so happy to see Stephen and I. But the second we pointed him out she did not take her eyes off him. She asked right away to hold him. Jessie on the other hand, was really missing mommy. All she cared about was seeing me. Once again she did not move from my lap, and she cried if anyone else touched her.
Our misadventures were not QUITE over yet. His billirubin numbers started to go up on Saturday. He was turning very, very yellow. He was "eating better" but they could not let us go home because of this now. We were all getting a little frustrated by now and just wanted to be home. After everyone left and we were able to get into bed. The apnea monitor started to go off. I had learned how to reset it and did so. For 3 solid hours. I would mute it then reset it and it came right back on after the three minutes it was muted. I called the nurses station and asked for our nurse, they told me that she would be in a few minutes. They had Aaron in an incubator with the billi lights on him. The first couple of times the monitor went off I was, of course, very concerned. I got up to check on him right away. About the 3rd time it went off I rolled over and had a perfect view from the bed of the little "full moon rising and falling" as he was indeed breathing. About 3am the nurse came in and finally got things reset so the monitor would, hopefully, stop going off. Needless to say I got very little sleep that night. But at least it was me that was taking care of him, for that I was very grateful.
Sunday morning we met the doctor that was going to do Aaron's circumcision. His name was Dr. Raine, we laughed about it being a sign. All he needed was the "s" and he would be family. They took Aaron up to do the procedure and Stephen and I decided to get out of the room for a few minutes and get breakfast. As we were coming back down the hall we heard a baby crying. It could not be our baby it has not been long enough. It was him, waiting for us at the nurses' station.
The nurses spoke with Dr. Raine about our situation and that no one they had contacted would go against the NICU doctor. We were getting desperate he would be back on Monday. He agreed to take over our case. When he came back that afternoon to check on Aaron he explained to us that his numbers were still high but going down. In talking with him we found out that he knew our pediatrician. He told us his goal was to get the numbers down and get Aaron out of the hospital to see him with out screwing anything else up. Aaron was "eating better" and all we needed was those numbers to come down.
Monday we did the next blood test early in the morning and the numbers were way, way down. He was going to do another one at noon and then a follow up one at 4 then if all went well we could go home after that. We were ecstatic! Noon came and we did the next test. He came back in and told us that they were so good that we did not have to do the 4pm test we could just go. I called Stephen who had gone to work for a while, since we were not going until later that day. He got off and came to pick us up. That night as we sat down to dinner with our two girls and our new baby boy, I felt so complete. Our family after almost 7 years of trying was finally finished.
Of both pregnancies I think this one was the hardest recovery emotionally because of the extended stay and problems cause by the NICU doctor. I have had to work very hard to forgive him for taking away my birth experience.
Yet also I felt this time I was helping Aaron more than I did Ashlyn because I pumped for him. I got the experience of being what I felt was a real mom. I was his sole source of nutrition for 4 months.
As we celebrated our little one's arrival home, we started to think of Ashlyn's upcoming surgery. But first we had a wedding to go to. Stephen's little brother was getting married in Kansas City. We came home on Monday and Ashlyn left with her grandparents on Wednesday. Stephen was to fly out on Friday morning. My mom was here most of the week to help out and let me get some rest. I had a young lady from church come spend Friday night with us, so mom could get some rest. Over the course of the time I was on bed rest and recouping from birth we had so many people help out and offer assistance. It was so wonderful to know that we were so loved.
After bringing Aaron home and talking with Dr. Salyer's office we decided to have both his initial visit and Ashlyn's pre-ops on the same day. We had every thing worked out. Aaron was looking great and Ashlyn was ticked off with us for letting them draw blood. We talked a lot about what it all was and why she had to do it. But she still did not really get it.
One thing we talked a whole lot about was the fact that when she had her surgery she would have band-aids on her eyes. This was because he was taking care of some skin folds at the corners of her eyes. We explained that it was very important that she not take off the band-aids. We told her that it would be a little scary because she could not see, but not to worry because we would all be there.
We arrived for surgery very early in the morning. Much to our surprise the nurse who greeted us was the same nurse who had done our pre-ops at her first surgery. Of course that did not make Ashlyn feel any better but it sure made me feel better. Daddy was very nervous for Ashlyn. He was already having the memories come back of his surgeries. Ashlyn is a lot like her mommy she does not like to be woken up in the mornings. She was in no mood to deal with the surgery. As we waited in the pre-op area we had Aaron with us. Jessie stayed with my best friend (Ashlyn's god-mother.) My mother came in shortly after we got there and took Aaron down the hall to the waiting area. She kissed Ashlyn before she left and told her she loved her. Then it was our time with her. They gave her she "goofy juice." Once again it worked its magic.
She was getting very spacey when they came to get her for the surgery. They told us she could ride on the bed or we could carry her. She had already trying to get down and walk. Stephen was carrying her down as she was said "I want to walk." We kept telling her that is not a choice. "You can ride the bed or daddy will carry you." "No I want to walk," this comes as she is putting her head on his shoulder. We passed Grandma and brother on the way to the elevator, and they joined us in our walk. Ashlyn talked with Grandma about who knows what really, no one understood her, but Grandma is good at making it sound like she understands.
We got down to the holding area and were able to send Grandma and Aaron next door to the waiting area and we went back to say goodbye. Then I went out and stayed with Aaron to let Nana and Pawpa take turns as they had just arrived and needed the opportunity to see her as well.
The plan was to build out her nose and cheeks under her eyes and the then get rid of the extra folds in the corners of her eyes. All of it sounded good until we had found our that she would have patches over her eyes for 3 weeks if he indeed needed to do the folds after building everything else out. We had been prepping her, but this was the moment of truth. Taking sight away from an almost 5 year old was not going to be fun. Stephen was very upset about this part, he said several times that he remembered having his eyes bandaged. He felt that the nothing was more scary or frustrating than waking up every morning and still not being able to see.
Stephen's parents (Nana and Pawpa) took us to breakfast and my mother (Grandma) waited in the waiting room in case there was any thing we needed to know about. We were back in about 30 minutes. I was still pumping for Aaron and needed to take a few minute to do so in the rest room. That was when I realized that I had left my valves at home. I spent the next 40 minutes running from PICU to the maternity floor to find the lactation nurse to get another set. Thank goodness they could charge it to Ashlyn's account. I wonder what the insurance company thought of that one.
Before we knew it, Dr. Salyer was out to tell us it was all over. Things had gone very well. In fact he told us that her eyes were not going to be covered. When he brought out the nose and cheeks it seemed to do the trick on the eyes. What an answer to prayer. And best of all, my fear that she would be in PICU again was not true, she would be sent to a room on the pediatric floor. We would be able to see her shortly. Just minutes later our pastor and one of our church members came in. We were able to pass on the wonderful news to them. We were able to have a prayer of thanks before we went to go and see her.
When we got to go back and see her, she was just really starting to come out of it. She had a little blood under her nose but very little swelling. I so shocked that there was as little as there was. Stephen did have a hard time once again with his own feelings. I was very proud of him, he held things together very well. Ashlyn soon started whimpering and thrashing about some. Stephen left to let the grandparents come back. When Nana got there, I left to left Pawpa come back. They too were impressed with how good she looked and at the minimal swelling. After Grandma and the pastor went to see her I went back in.
Nana told me that they had to giver her some morphine. She was starting to rub at her face because it hurt. She was dozing back out again. About 15 minutes later she started to whine again. This time she was getting a little stronger about it. That was when I really started to feel the pangs at my heart. I started to tear up, and just tried to tell her that I was there and she was okay. Stephen came back in and tried to help me calm her down. The nurse gave her another dose of the morphine and told us that we would have a room in just a few minutes. Stephen went out to tell everyone to start packing things up. As I was talking with the nurse I ask the room number we would be going to. When she told me it sounded very familiar. "Is that on the far side near the nurses' station" I ask. "I think so." Come to find out it was. It was the very room we were in for her first surgery. We all got a good chuckle out of it, first the nurse in pre-op and now this.
We got up to the room and settled in. No kid could ask for a more comfortable situation, 2 parents, 3 grandparents, and one nurse to wait on your every whim. If she did not feel so cruddy she would have been quite pleased with her situation. She, of course, did not get the need for the IV and wanted it gone. And then there was the matter of the monitors. She wanted Nana, then Daddy, then she wanted to be left alone. Finally I was able to lay beside her in the bed and settle her down for a nap.
We let Nana go eat dinner that evening. She had graciously agreed to stay with Ashlyn at the hospital, so I could go home and be with the babies. I was grateful for her offer and was glad to have it but at the same time it was very hard to say yes to. Stephen told me I had no choice, he had made the decision. But she is my baby and I needed to care for her. I was in MAJOR momma bear mode. I had to protect my young. He was very calm to explain had I had 2 more cubs that needed me too. His mom had "been there, done that" and knew what to do. I was reluctant but agreed it was okay. Of anyone to leave her with, besides us, no one would love her more or dote on her more than Nana.
Stephen went to work the next day and I went with mom back to the hospital. Jessie had spent another night with my best friend. Nana warned us that she was quite a bit more swollen. I found that very hard to believe, I thought when we left that she was as swollen as she could ever be. I was sure she had no more skin to stretch. Boy was I wrong. She looked like a little chipmunk. She no longer had a nose, cheeks, mouth, or chin. I had to stop at the door and take a breath. She was in a little better mood and was very glad the monitors and IV were gone.
Nana said, during the night she would roll over and point to the CD player that Nana had brought and say "music Nana. I want sunshine," her favorite song that Nana sang to her since she was born was "You are my sunshine." So when the soundtrack for "O brother where art thou" came out that is what she wants to hear. She had started to drink juice during the night and was taking popsicles.
We asked her if she wanted to go to the play room and see if she could find something to color or maybe find a toy to play with. She was very ready to get out of the room. She went down and started to play. I went back to the room with Aaron to feed him and to pump. Nana and Grandma stayed with her. She colored for awhile and then went to find a toy. The baby area had a mirror in it. She saw herself for the first time. She stopped and looked at herself. She touched the mirror and said "Oh?!" Grandma got her attention and she forgot about it for a few minutes. But, of course, that did not last long she went back again. Took another good look and started to cry. Grandma had a very hard time with this. Her heart broke for Ashlyn. Nana handled it like an old pro. She explained why she looked that way to Ashlyn and that it was not going to be this way forever. They brought her back to the room where Ashlyn asked me about it. I almost broke down too. She was so worried. I tried to help her understand. And then all of a sudden it was not a big deal any more. Lunch had arrived, she got French fries and ketchup. She had not eaten well on her liquid diet, because that is just not her kind of meal, so they let her move on to a regular diet trying just about anything to get her to eat. The fries did the trick.
We spent the rest of the day waiting for the doctor. She wanted to play a lot in the playroom. Her favorite thing was to color. She drew lots of pictures. We put them up on the wall in her room. She is such an artist. We were hoping to get to go home, but were unsure of what Dr. Salyer was going to do. Stephen was coming up to spend some time with her and then he was going to take me home and we would get Jessie from my mom around 9:00, if she was not going home. He finally came in around 5:30pm. He said we could go home. YEAH!!! I called Stephen who was on his way and his dad who was coming up too. We told Pawpa to go on home and Daddy to come and get us. We started packing up and getting things put together. Daddy was not but a few minutes away by then, so I took the first load down stairs and waited for him. I am always amazed at how one 24 hour stay at the hospital can require so much stuff.
I told him on the way back to the once again how swollen she was. He looked at me and told me he knew exactly how swollen she was he had been that swollen. He knew exactly how she felt.
I am still amazed at this little girl. Once she came off the IV she never took anything more than Tylenol. We gave her some right after we found out we were leaving so she would be more comfortable when we got home. But even when we were home she never even touched the script for pain meds. I do not even remember her ever saying she hurt. We gave the Tylenol at night anyway because we knew she had had long days, but nothing during the day.
The plan was to take her to Nana and Pawpa's house. They would keep her for a few days and then bring her home.
Once again so I could be with the babies and she could have undivided attention. We told her on the way home that that was what we were doing. But she wanted to come home with us, she wanted Mommy. We told her that was fine. Whatever she wanted to do we wanted her to be comfortable. That was really GREAT with me I was feeling quite bad that I had let someone else stay with her this far. My momma bear mode was really kicking in high gear. We told her we would stop at Nana's and eat dinner and then we would go home. Of course by the time it was time to go she wanted to stay. She really loves her Nana and Pawpa, and no one could be more attentive to her needs than they are.
The next morning Nana brought her home. They got here around 11am. Nana stopped on the way and got her something to eat. She sat at the table and seemed very glad to be home. She would take a few bites and come over and give me a hug. Then kiss her brother, and hug her sister. Jessie was a little taken back by her looks at first. She did not recognize her with such a swollen face, by the way it was more swollen that it had been the day before. Once Ashlyn spoke to her, Jessie knew exactly who she was.
My sister, a couple of her children and my Mom came over a few minutes after Ashlyn got home. Ashlyn was glad to see her cousins. She ran off to her room with them to play. Everyone thought that her nose was going to look really good when the swelling went down. About 20 minutes later everyone left. I could see she was getting tired. Nana was getting ready to leave too. She asked Ashlyn if she as going to come too. Ashlyn said no was staying with her sister. We told her that was fine if she wanted to go to Nana's later.
By the weekend she was feeling GREAT. She even took the tape off her nose Saturday night. I tried to call the Dr.'s and find out if it needed to be put back on. I had a horrible time getting anyone. Monday I let her go to school for about 20 minutes to see her friends. I spoke with the doctor's office about the tape and was told not to worry about it until we saw him again in a few days. I went to get Ashlyn from her classroom. Boy, did I have to fight her to get her to go. She wanted to be with her friends. She felt fine.
We saw Dr. Salyer a couple of days later and he said she needed to wear the tape for 3 months and no glasses either. That was not a popular choice at our house. One night I told her she had to put on the tape. She did not want it put on, she wanted to wear her glasses. I told her again what Dr. Salyer had said. She looked at me with a very determined look in her eyes and said "Well I just want to talk to Dr. Salyer!" I just about busted trying not to laugh. I told her "good luck he is about as bull headed as you are" (I told him later about this and he thought it was hilarious.)
Fortunately the 3 months passed with any major incidents. She went back to school after 2 weeks and was so excited, for about 2 days! After that, it was the "Do I have toooo?" whine of a tired little girl in the mornings.
Once she was able to wear her glasses again, she got to get a new pair. She had said for 3 months she wanted red glasses. The day we went looking, she would not look at anything but red glasses. She is my little Sally Jesse now. She loves her red glasses and I think they are really cute too. They bring out her personality.
About 7 months later it was Aaron's turn to have his surgery. We had everything set up to go May 9th . This time the call comes from Stephen. The company was changing their insurance as of May 1st . The new insurance does not have Dr. Salyer on it. Fortunately, Dr. Genecove is on it . I get on the phone trying to figure out how to make this work. We decide to do it on April 24th so we get in under current old insurance. We move all pre-ops and get everything set. We go to pre-ops on Monday for the surgery on Thursday. Every thing looks great. Wednesday afternoon I get home from picking up Ashlyn and there is a message to call the doctor's office. Dr. Salyer has to be in Austin at 9am to testify before the state senate. But Dr. Genecove has agreed to take our case and do the surgery. Well okay what do we do? We have met him and he is really nice. But Dr. Salyer has done Stephen and Ashlyn both. We were comfortable with him. However he did not have another surgery time before the first of the month. Either way we did it Dr. Genecove was doing the surgery. Stephen and I both prayed about it and felt that this was the way it was supposed to be. Dr. G needed to do it.
Oh the other thing that changed was the time of the surgery. I had everything all set up for the first surgery but now things had changed and we moved everything around. Then the time changed from noon to 7am. So I once again called everyone and changed it up.
My mom stayed at the house with Jessie until she woke up and got dressed. Then she took her to our neighbor's house, where Jessie was going to stay that day. Ashlyn went to my sister's house the night before to spend the night and go to school with them. We got to the hospital Thursday morning very early. We even go there a few minutes before the pre-op area was open.
As we sat there and waited, I noticed that Aaron's ears were draining. When I told Stephen we got a little nervous about it, things might not be able to be done yet. To our surprise the nurse that opened up was the very nurse Ashlyn had for her two surgeries so far. Aaron of course could not eat after midnight, and was getting kind of cranky. We were getting pretty nervous by then. With all the changing around we had had a shock when it was still about 2 and a half weeks away to being less than a week away. So that actual surgery day was here, was sort of a shock.
When the anesthesiologist called the night before, he said that our named sounded familiar, had he been with Aaron before. I thought for a second and realized he had done Ashlyn in October. He said "Oh yes". The ones with the little-bitty baby in the pre-op area. Yes, that was us, this is that little baby. Aaron got his goofy juice and off to the holding area we went. Stephen was getting visibly nervous now. He hardly ever gets nervous about anything that happens to any of the kids. Having them go through the surgeries though the toughest on him. As I carried him down, Stephen put his hand on his head and just looked at him. We got over there and he was starting to see more than one of us. He, like Ashlyn did, would reach out but be too far over to touch you. Every once in a while he would just grin at us. We took a couple of minutes to pray and ask for guidance for the doctors and peace for us. We talked with the doctors again and then said goodbye.
Stephen's parents got there shortly after Aaron went back. We had not eaten, so they stayed in the waiting area and we ran down to the cafeteria to grab a bite and head back up stairs. We ate up there as we waited. My mother came in right before Dr. G came out and told us it was over. He had done great. He did tell us thought that he was still very small and there was not a lot of muscle and tissue to pull over the palate. This might cause problem, since holes could form.
We still had a little time left to wait. The audiologist was doing the ABR test and would be out in a few minutes to talk to us, then he would go to PICU. The nurse came out and told us that they were getting him ready to send to PICU in about 40 minutes. We had told them about the ears draining before the surgery, but all everyone said that was fine. When the audiologist came out she said they had to try to clean out his ears to do the test. They did the best they could. It could be the fluid, but he was registering with sever hearing loss. Did we notice that he might have hearing loss? I explained that from time to time yes but other times not at all. She would write out her report and send it on to Dr. Peters, our ENT for the kids. But the test would need to be redone when his ears were clear.
Mom asked me after we passed on the news if I was ok. I said yes. Right now I was just glad it was over and wanted to see my baby. A few minutes later we were able to go back and see him. Compared to what we had seen after Ashlyn's first surgery, he was doing great. Just like after his tubes his was laying in the bed so still and quite. He turned his head when we walked in and just gave us a little grin. He had his string through his tongue and taped to his chin. He was actually very cute lying there so still.
Stephen stayed long enough to make sure he was okay. Once again the smells and sounds of after surgery got to him. I know that his feelings about having surgeries so often are very deep. The thought of his children having to deal with the same things makes him feel very guilty. He feels extremely responsible. He left to let one of the grandparents come back. My mom was next to come back. As we were standing there, he started to cry and kick his legs. In fact he was getting down right hysterical. His nurse gave him some morphine. He calmed down and dozed off. Once I knew he was okay, I went out to let someone else come in. Pawpa went back followed by Nana. About 20 minutes later I was back again at his bedside, this time to stay. He had one more little fit just before I went back to see him, he got an other round of meds and was sleeping again. I sat back in the rocking chair to read until he needed me again.
One at a time the grand parents came in again as they were getting ready to leave. My mother needed to get back to stay with my older sister's children, since she was going to her college classes that night. With the 6 she had to watch for her, we felt adding more on to it was to much for mom. Nana and Pawpa were going to go get lunch and met my sister at her house to get Ashlyn from school and Jessie from our neighbor. Stephen was staying with Aaron and I for a while then he would head home to be with the girls for the evening.
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Ashlyn knew what was going on. We explained to her what was going to happen and why. When we did, I realized that we had not ever really explained to her about her cleft and Daddy's as well. The day I told her and asked her to feel the top of her mouth and showed her brother's then I think she understood more. That night she told her daddy all about it and told him he had it too. She told him about the surgery and how she would not be able see brother until the day after, and that he would wear no-nos like her pictures and they had to be left on. We were both impressed at how much she got.
On the way home from school one of my sister's kids asked why Ashlyn was coming home with them and if she was spending the night again. Ashlyn answered the question first. No, her Nana and Pawpa were coming, because mommy and daddy were at the hospital with brother, and she was going home with her grandparents. They got there right as Nana and Pawpa did.
By this time Aaron was taking fluids orally and doing quite well. Us silly adults didn't realize his earlier fussing was probably due to him being hungry. Once he started getting apple juice he was a much happier baby. Stephen stayed with us until about 3:30 so that he would get home before traffic got too bad. His parents stayed to help him get the girls bathed and ready for bed. The next morning he would take Ashlyn to school and Jessie to some friends to spend the day, so he could come back to the hospital.
Aaron and I had a quiet evening. When they shut down PICU for shift change, I went to eat dinner. I came back and just sat at his bed and read. Finally about 7:30 he was getting rather fussy again. I asked the nurse if I could hold him. We had not held him yet. She was shocked that no one had said we could pick him up. I sat in the rocker for the next 3 hours just holding him and singing or reading. I felt so calm now with the weight of the procedure being lifted now that it was over.
About 10:30 I went to the sleep room to lay down for a while since I was falling asleep holding him. I told myself that I would only be able to sleep a few hours, and then I would get up and go back in to see him. I woke up at about 11:30 and thought I would lay there and wake up some and go back in. They next time I looked at the clock it was 5am. I was amazed at the time, but still did not get up the next thing I new it was 6:30. I jumped up, I could
not believe I slept all night. I went in to the waiting room and called home. Stephen was in the bathtub getting ready to get the girls up. They had had a great night sleeping with daddy. They thought they had had quite a treat. He said he would be there in a couple of hours.
I went back to see Aaron. The nurse said he had had a good night and gotten a bath around 5am. I asked about giving him formula and they looked into getting it. I had some in our suitcase but Stephen took it home so we would see who got there first with it food services or Stephen. He was really wanting more than the apple juice. I went to breakfast during shift change and came back up to the waiting room to wait for the PICU to open back up. I heard several stories of the other little ones in PICU from their families. I was feeling very blessed that things were going so well for us. There were some very sick little and big ones in there.
We were told that morning by the PA that they were ready to move us upstairs as soon as a room opened up.. The chances of that happening we later found out were very slim. There were 3 ahead of us in PICU and 2 in the ER. The hospital had been diverting to Louisiana and Oklahoma. We were going to have to stay in the PICU again that night. I was crushed. He was feeling better and wanted to get down and roll around. We asked if they thought we could ask Dr. G to go home instead of waiting. They said it was worth asking. We had been through it before and knew what to look for.
We waited most of the day to see Dr. G. We went to lunch just before shift change at 3pm so we would get back, hopefully before he was out of surgery. As we waited in the waiting room for the change to be done the nurse came to find us to tell us Dr. G was there. He was standing by Aaron's bed taking the string out of this tongue. He said we were ready to go to a room. I just looked at him and said " there is no room at the inn Dr. G they have already told us." I then asked him if we could just go home. He asked if I was comfortable with it and I said "If you are." He looked at Aaron grinning at him and said he is too happy to stay in the hospital. He wrote out the orders and discharge instructions and we called everyone to tell them we were coming home. We left the hospital about 4pm and were home by 5. The girls were thrilled to see brother, but most of all mommy. Jessie would not let me put her down at all. We had an easy dinner and were all in bed early.
Over the next few days we had a hard time eating and got a little concerned. But after we talked with Dr. G and got our pain meds working right, he did great. By the time the no-nos came off though I was carrying him everywhere. He figured out in less than 12 hours how to take the cloth no-nos off so we had to use the plastic ones from the hospital. His arms were getting heat rash so bad, even with us putting powder on them at every diaper change. I just carried him so that I could leave them off of him.
At post op we found that there was a hole in the palate. It was from his runny nose. We are waiting 3 months to see if it closes on its own. Aaron is going to stick with Dr. G and Ashlyn will stay with Dr. Salyer until he retires. We are so blessed to have these 2 wonderful doctors caring for our babies.
Aaron is still fighting ear infections. We are seeing the ENT 2 times a week. Ashlyn cleared up about 8 or 9 month old so we are hoping Aaron is almost done.
As I look back on the things we have been through, I understand that Stephen went through all he did with his bone grafts and multiple surgeries, so our children would not have too. So much of what they learned on him is helping them do more at one time for the kids. We needed the time before we had kids to cement our marriage. We needed to learn to love each other as husband and wife before we were mom and dad. Jessie needed us as much as we needed her. She is as much our daughter as the Ashlyn is or Aaron is our son. We needed to fight for her so we knew without a shadow of a doubt that God knew what he was doing. We have been through some trying times, but we know in the end "God will not give us anything we can't handle with him.
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Stories of Craniofacial Care and Inspiration
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This cleftAdvocate page was last updated March 25, 2014
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