I have started this post so many times and the words just don’t seem to come, or I can’t put my feelings in a way that would even begin to express what I have felt though this whole experience. It also could be that it just seems so personal to me and kind of hard to share, especially when I can’t express what I want to say in an eloquent way. Maybe it is just so personal it’s hard to share. One thing I do know is that whether I bury this in a mass of blog posts or post it to share this is something that needs to be shared with my little family… this baby and my two other girls and those that will follow. Partly because this has been so much of the last year and partly because this whole experience has truly strengthened my testimony of this gospel, and of a loving Father in heaven that hears and answers prayers. That our Savior and Father in Heaven are so aware of us and that the Holy Ghost truly has a comforting power that can’t be found anywhere else or though anything else.
I will worn you if you are pregnant than this is not a post you want to read right now.
This pregnancy has been a rough ride. I knew the minute I was pregnant. I was sick and felt that “pregnancy feeling” I don’t know really how to describe it. You feel like you are going to throw up and that it will happen at anytime anywhere and there is nothing that you can do to stop it. You’re afraid that if you move you will barf all over the floor. You plant yourself strategically closest to the restroom anywhere you go, just in case. If you don’t eat anything it makes it worse, but you don’t feel like eating anything… you get the point. Honestly I don’t know that I was really feeling ready to do this again and was fine with the way things were. I was feeling like my parents were so far away and though I’m a VERY independent person it was hard to think of my parents not being around and not seeing this baby until it was 2. I don’t know just so many feelings that I was feeling and not elated. Maybe it’s because I knew what the next few months would bring… or so I thought! Brooke and Margaret were so amazing! They would bring dinner, honestly to many times to count. They would offer to take my kids and Brooke almost showed up to help me put up my Christmas Tree… Finally it got up a week or 2 before Christmas! Really I didn’t do much. I would get my kids up and would sleep on the couch all day! That was kind of what I was expecting, in fact it hasn’t been as bad as my last pregnancy so I was just grateful.
I had gone in for a routine test that I have done with my other two girls that consist of a sonogram and blood draw. They just check the baby for any abnormalities. I have always told Kris that the out come of these test would never change what I would do with the pregnancy, I just would like to be prepared when my babies come. Here I was going in for a routine test and taking my 2 kids with me like I always do! They started the sonogram and everything was going great… Then the tech said that she saw some extra fluid on the back of the baby’s neck. By the time she had finished telling me that there was another girl in the room. She introduced herself to me her name was Kati Dunn. Honestly the tech never left the room and she never called anyone so either they were watching the sonogram in the other room or they have the rooms miked up. She told me that she was a genetic counselor. She said that because of the abnormalities in the sonogram they would not be drawing blood that day, because they already knew that something was wrong.
Mind you at this point Molly is now telling me over and over that she needs to go potty and Stella is climbing out of her stroller (5 point harness my foot!) I’m trying to focus only on what Katie is telling me. So I heard lots of works like Cystic Hygroma, 50% chance that something is wrong, amniocenteses, CVS, genetic disorder, heart defect. I’m hearing all of these words in between my kids yelling and climbing all over the place. Katie couldn’t have been nicer. She kept asking me if I had any questions. What was I supposed to have questions about? I didn’t know what the heck she was saying. Honestly I left that day knowing a few things…
* That there was a 50% chance that something was wrong with my baby
* I had 2 options to find out what was wrong CVS or Amniocenteses (I was given literature on both so that Kris and I could sit down and talk about it)
* My kids could have been better that day and have been! What the heck!
* That my chance for miscarriage or still birth was really high!
Katie was so cute and answered what questions I did have and gave me her number and told her I could call anytime. I was 13 weeks and if I wanted to do the CVS I had to act fast. It had to be done by the end of the week. It’s very much like an amnio, but it is more invasive and can only be done in the earlier stages of pregnancy… that’s the perk, you will know sooner. They put the needle though your belly just like the amnio, but they actually go into your placenta and take a “biopsy” if you will from your placenta as opposed to the amnio that just takes some of the amniotic fluid. But again it had to be done by the end of the week or we would have to wait till I was 20 weeks to do the amnio.
As I gathered up my things and my children to leave the room I wish I could explain the feeling I had. I was pregnancy sick, my kids were out of control and I was just trying to keep it together till I got into the car… then yes I cried all the way home… well that is where we were headed, but not feeling like I could go home and just sit there with my kids running wild and not really knowing how I felt about what I had just heard, we drove around and knowing that Kris would be done with work soon I went to his office and we sat in the parking lot till he was done. I had tried to call my mom several times, but with her traveling the mission doing interviews which I had no clue at the time.
We didn’t wait at Kris’s office long before they were all done. It was a Wed. and Kris’s sisters were working and both stopped over to say hi. His youngest sister asked if everything was ok. She said “I saw your car pull in and thought, Oh I hope everything is ok.” I told her it was fine and they were on their way. Kris came out and came over and started to talk. I just looked at him and said “Something might be wrong with the baby!” I asked if he wanted to go get dinner and go for a drive, still not wanting to go home and face making dinner, cleaning up and the fight of bed time that I new the night would bring all too soon. So he climb in and we were off on our drive when I recounted everything that had gone on at the Dr appointment. Really I can barely remember the Dr coming in and talking to me as well. She was awesome and was so nice to answer any other questions that I had and she and Katie talked with me for a while. I read aloud the pamphlets on both of our options of the CVS and the amnio. I cried, Kris cried and I’m sure the girls did their fair share of crying on the drive as well I just don’t remember that part.
The next morning early I got a call from another genetic counselor that worked with Katie and said he was calling for her that she was sick and had no voice but wanted to know if we had made a decision on the testing because we needed to get it scheduled. One of the first things he said to me was “I’m so sorry to hear about your test results. Are you doing ok? Are there any questions I can answer for you?” honestly I kept thinking this guy is offering his condolences already. Is there something more to this 50% thing than I realize? So I started to ask more questions. How common this was … the answer, not very common at all. Then as we kept talking it started to hit me… No! There IS something wrong with the baby, now it’s just a matter of how serious it is. I had started to remember more of my conversation with the Dr and Katie and talking with this guy I started to ask more questions. He must have though I had not listened at all the day before, but I can’t really explain what happened. I was trying to grasp everything so hard I just kept missing the whole thing. It was like when you focus so hard on one thing you don’t get really anything. I don’t know. But I realized that the word I kept hearing the Dr and Katie and this guy using “Cystic Hygroma” was what our baby had. Most of the time this Cystic Hygroma was an indication that there were other problems… 50% of the time it’s a genetic problem. Other times it a heart defect, and in rare cases it’s just a mass of tissue and fluid that hopefully can be surgically removed when the baby is born. Some are huge and some are small so they would be keeping tabs on this baby to check. But for now we needed to start to rule out things one by one and the genetics was the first one. I felt like I had more information when I got of the phone with him than I had earlier…more overwhelmed and scared than before, but more in the loop.
Kris only had to work part day and was home early. We sat on the couch and talked again about my phone call and our options. Again I cried and he cried and I started to go to panic mode. I had tried and tried to no avail to get a hold of my mom, but again traveling the mission in Japan she was unavailable. I wasn’t sure what to do or if I even needed to do anything. I didn’t want to bother my OB so even though the thought had crossed my mind I never made the call. After our talk Kris was watching a little tv and I had fallen asleep on the couch when my phone rang. I answered and got “Lindsay, It’s Lisa Gravelle” My OB. She went on to tell me she had seem my test results and told me she was so sorry, that she had been thinking about me all day long. She also said that she was happy to answer any questions I had. We talked and I asked her all kind of questions. How common was this? She told me that she got maybe 1 a year… this form the lady that has 20+ deliveries a month. One of the other questions I had asked her was if this was her what would she do. She told me she would go with the CVS. She told me that the risk of miscarrying was not as high as people really thought it was, but that with this kind of thing (being the cystic hygroma) most of the time the miscarriage is because of the CH as opposed to the actual CVS. She also told me that I should take it easy if I did do the CVS for the next day. She was amazing but after all of these phone calls I think I started to realize how serious this was getting. Again more panic and Kris told me he thought I should call my siblings. Not wanting to talk to anyone about it, not able to talk to anyone about it, I opted for a mass text! I know how lame is that, but for someone who couldn’t talk and didn’t want to but needed all the prayers I could get at the time texting was manna from heaven! The mass text said something like…
“We just found out that the baby has what is called a Cystic Hygroma and that there is a 50% chance that there is a genetic defect such as trisomy 18, turners , downs, spineobifita, other genetic disorders or a heart defect. We really could use your prayers.”
With in 5 min of sending the mass text I had almost everyone ether call or text back. I couldn’t talk to anyone, but was so thankful for their well wishes and saying that they would keep us in their prayers. Still not able to get a hold of my parents I finally just emailed and called the mission office and asked them to pass on a message to check their email. Kris had called his parents and I know that was a hard and emotional call for him to have to make.
We decided to do the CVS that Friday. I had to go in alone because Kris had to work. One of my dear friends kept saying that she would get a sitter for her kids and come with me (how cute is she) and Kris’s mom offered to come or send Kris’s sister, but when it came down to it… I was scared to death! This was so traumatic, Again I wish I could express what I was feeling and thinking and I was just trying to hold it together. If I would have taken anyone but Kris I was afraid that it would be even more traumatic doing this all alone. So I just told myself I was going to treat it like a regular Dr. appointment and go in and it would be fine. It was fine. I was a little nervous about the needle and the Dr. kept saying when I stick this in you have to hold perfectly still, then I’m going to keep moving it up and down and around to get a good sample so we don’t have to stick you again. Then I’ll take it out into the lab and see if we have enough, if not we will try again. Katie (the genetic counselor) was there as well as a darling sonogram tech (who I have become well accounted with and has keep my kids occupied at many sonograms since) and a resident that was there that day. The CVS went smooth. They got what they needed the first time and we didn’t have to go in for a second time. Now was the waiting game! Again my friend brought dinner for us that night, a gift sent form heaven. It would be a few days before they had the test results for the genetics. This all started on wed the 5th of Jan and we wouldn’t see the results until my birthday Jan 18th. That would be a long wait.
Kris’s family decided to have a family fast that Sunday after we found out. I being so sick couldn’t fast of course, but I so badly wanted to participate so I decided I would offer my fast by forgoing all kinds of sweets and treats. I remember when I knelt down to start my fast that sat night I poured out my heart to my Father in Heaven. I told him that I knew he knew be better than anyone and he knew what I could handle and to just help me to align my will with his. That if this baby was going to have special needs I knew that it would make us stronger and that nothing would make my children more compassionate and kind and loving than having a sibling with special needs. I recalled all of my friends that had siblings with special needs or families that had children with special needs, they were amazing families I was just worried I wouldn’t measure up. I prayed that I would feel comfort and peace that I would know that I would be able to handle whatever he had in store for this little baby and for us as a family. There was a lot more than that but that was a big part of it. I prayed for each of our girls and for Kris and myself and I sobbed the whole time.
That Sunday was a good Sunday. I remember that the closing song was I know that My Redeemer Lives. I cried thought the whole song I couldn’t even sing. We ended our fast that night at the Rosander family dinner and the prayer was touching. I was touched that this room full of people would fast on our behalf so lovingly and unselfishly.
I have never had a fast like that before. I know It wasn’t really a fast for me, I was still eating, but I have never felt such instant peace. I felt calm and at ease. I felt that everything was going to be fine… not that the tests would come back perfect, but that it was all going to be ok no matter what! I have continually felt that! My biggest fear was honestly Trisomy 18 I kept thinking of this story. I was so scared I wouldn’t have a baby at the end of all of this the feeling like crap my poor kids getting the shaft. Kris having to do his job all day and my job all night. I got lots of great pone calls from cute friends text messages saying they were thinking of us. One of my cute friends brought one of our favorite desserts of my moms with a cute note saying that she new that my mom was wishing she could be here with us for all of this and that she was making the desert on her behalf…my mom cried when she heard that. My amazing aunt called to check up on us and see how we were doing. Offering anything that they could also on behalf of my mother. I remember talking to my aunt just after the CVS and telling her what scared me most about having a special needs child is that you just want to protect your children and shelter them form the world and people and kids can be so mean. In fact this was another thing I had prayed about my fears of not being able to protect my child from those that would belittle them or make them feel like less of a person, those that would mock or make fun of them or make my child the center of their jokes. My aunt said you know there will always be humanity in the world. As I thought back to high school I thought of my love of the kids that I worked with in per tutoring and the love that everyone had for them. That was the answer to my unsettled question of how to protect my child. My aunt had given me the answer I had needed. We felt of everyone’s love though this whole thing and truly felt others prayers for us.
My mom had called and we had talked several times after not being able to get a hold of her and asked if she could call on our family to do a fast as well. Thinking that she was just going to call or email siblings I told her that was fine and that only if they wanted to, I didn’t want anyone to feel obligated. But told her we would take any help we could get. So the date for the Baird fast was set. My mom sent me emails from friends of the family saying they had just finished their fast for us and cousins and aunts and uncles… I was totally mortified! Really this was not something that I wanted to share with everyone and certainly not want anyone to feel like they had to fast for us. As I thought about it, I was humbled that these amazing family members and friends would involve themselves in a fast on our behalf. We have truly been blessed for it! Thank you to all for your prayers and fasting and your love that you have shown to us!
We got the genetic tests back on my birthday like I said, Jan 18th. Katie had called and told me everything looked good. No genetic issues and that we would be having a girl! I was thrilled for another girl. I was feeling like I was ready to have something to look forward to. My chances remained really high for miscarriage and still birth and that was not going to change with this news, and we still had to rule out any of the heart issues that could be a problem, and if we made it passed that then we still had the Cystic Hygroma to worry about. How big was it? Would it be hard to remove? And on and on. Being as I was in need of something to look forward to and help motivate me to get moving and keep my spirits high being as I was still on 2 drugs for nausea and trying to make it day by day I was ready for a party! That’s right I was ready for a party! So I decided to have a gender revealing party! I have always thought this sounded like a fun idea and was all ready for it! It was a blast and I love that almost everyone thought we were having a boy! It made the surprise of it all more fun!
So being as I was a high risk pregnancy they have done sonograms every 4 weeks and that has kind of been fun to see this baby so many times. With my other girls I think we did a total of 3 sonograms per pregnancy. There have been a lot with this baby. They have been watching the Cystic Hygroma and also the growth of the baby. With every week we make it, our chances get better and better of making it the whole pregnancy with her. It’s nice to know they have been keeping such close tabs on this little girl.
Time came when they sent me up to Primary children’s hospital to have a fetal eco and check the heart. The girls LOVE the hospital! Holy cow can you say kid friendly? I was shocked at how thorough they were. They only were looking at her heart and we were with the tech about an hour. Then she had a Cardiologist come in and take a look and talk with me and then she went and got one of her colleagues to come in and also look and he also talked to me. Between 1 tech and 2 cardiologist I felt confident that they were taking a good look. Things looked good and they said that she looked great as far as her heart development should look at this point. We felt that that was also a good. One less thing to worry about. Now this silly Cystic Hygroma. I went in for my routine 4 week sonogram appointment and when I asked the tech (the cute one, they are all cute and we love them all, but Susie was the one that was in my CVS with me.) if she could see how big the CH was. She told me she couldn’t even see it. She said “Gosh all that worry for nothing!” Then she said, but wait and see what the Dr says. When the Dr came in he took a long look and was so much longer than normal. Then he said “This is a miracle!” he went on to tell me that it was totally gone or so small that he couldn’t see it. He just kept saying “This is a miracle!” When I got out of the appointment I called Kris right away and told him that the Dr said “this is a miracle!” Kris asked if he used those exact words. I told him “yes those exact words, several times” When I called my mom she cried, I cried and when I told Kris that he cried. I am still a little gun shy. I don’t discount that this has all been a miracle and when I got a letter from my sister serving her mission in Japan This was the letter I sent back expressing how I felt about this whole thing.
"Well sounds like mom passed on the news about the baby. I’m so grateful for that tremendous blessing, but I am still kind of playing it cautious. They will still be monitoring her and checking her progress though sonograms. The Dr was pleased enough with the last sonogram and felt that it was fine to go ahead and wait 8 weeks until the next sonogram instead of the 4 weeks we have been doing. We also did the fetal echo (a sonogram of her heart) and things looked really good. You know I think I’m still kind of hesitant to come to the conclusion that the cystic hygroma is no longer an issue because I don’t think that I have ever felt though this whole experience that everything will turn out perfect. After the first fast the Rosander family did I felt nothing but peace and comfort. I knew that everything would be fine, not saying or feeling that that would mean the baby would we perfect, but that our Father in Heaven and Savior had a plan for us and for this baby and that no matter what happened or what tests showed that this baby would be perfect and has a special spot in this family. I have felt that she would teach us more about love and acceptance and kindness. (See I cry even just writing this) She has already taught this little family of mine so much. She has taught me so much. We have learned more about prayer, asking and seeking, aligning our wills with our Father in Heaven sometimes this is much harder, but I truly feel that that has come easy with this particular situation. I think that has come form the power of the fast another way in which I have learned and grown from this baby. To me it’s not the miracle of our baby being perfect or that the cystic hygroma being gone or incredibly small, it’s the way in which our Father in Heaven has sent us his comforter to wrap us in his love and comfort, to feel of his peace, to know of his great power and love for each of us and his knowledge and awareness of us here on this massive earth with billions and billions of people. That to me is the miracle that I have felt and seen though this whole experience. I think that so much has come from prayer and fasting and also the service that mom and dad are performing in Japan. I know that the promises that were given them in their setting apart that we (their children) would be watched over and given blessings because of their service. See crying again."
I still don’t know how this will all turn out… things are looking really good. The sonograms are looking awesome and we are now doing weekly non stress test and we start weekly visits with my OBGYN next week all of which are looking positive. I recognize this amazing blessing we have been given each day. Really I know others with the cystic hygroma thing that have not been as fortunate to have a baby to hold at night. I told Kris I feel horrible because I complain everyday about being pregnant, and yet we pray every day that we keep this baby and make it to the end with her. I still hold my breath getting closer to the end that we make it! If we do we are the 20% that is not high at all. No matter how this turns out we have learned a lot, all of us. Molly was asking about the Holy Ghost and we talked about how when mommy learned that something was wrong with the baby it was the Holy Ghost that helped mommy feel that it was all going to be ok. We continue to learn Kris and I have spent nights in bed and sobbed and prayed together. We have grown as a couple. I have grown as a person and I hope my kids will also look back at this story and find strength and power though prayer, fasting, the Holy Ghost and just the gospel in general. I feel blessed to know that as much as my arms ache for this little girl right now we will have her forever. How amazing is this gospel. I have truly felt of the love our God and Savior have for me and my little family! I really have felt this whole experience has been a miracle. I don't know why it has turned out this way (I guess we are still not done) but that is not what I consider the biggest miracle of all it was the feeling of peace and comfort and on those sleepless nights the knowledge that someone was aware of us and our situation.
I think that Alma 26 describes it best when Ammon has been called out by his brothers for bragging and Ammon responds...
26:16 Therefore, let us glory yea, we will rejoice, for our joy is full; yea, we will praise our God forever. Behold, who can glory too much in the Lord? Yea, who can say too much of his great power, and of his mercy, and of his long-suffering towards the children of men? Behold, I say unto you, I cannot say the smallest part which I feel.
26:37 Now my brethren, we see that God is mindful of every people, whatsoever land they may be in; yea, he numbereth his people, and his bowels of mercy are over all the earth. Now this is my joy, and my great thanksgiving; yea, and I will give thanks unto my God forever. Amen.
May 31st 2011, 34.5 weeks along
*There were still a lot of tears while writing this. There are just so many emotions that come with this whole thing. I know that one day I will be able to do talk about it with out crying... maybe, Maybe not.*
This information is provided by Emory University (medical school)
Department of Human Genetics Division of Medical Genetics www.genetics.emory.edu
Cystic hygromas are fluid-filled sacs that result from a blockage in the lymphatic system. The lymphatic system is a network of vessels that maintains fluids in the blood, as well as transports fats and immune system cells. Cystic hygromas are single or multiple cysts found mostly in the neck region. A cystic hygroma can be present as a birth defect (congenital) or develop at any time during a person’s life. A cystic hygroma in a developing baby can progress to hydrops (an excess amount of fluid in the body) and eventually fetal death. Some cases of congenital cystic hygromas resolve leading to webbed neck, edema (swelling), and a lymphangioma (a benign yellowish-tan tumor on the skin composed of swollen lymph vessels). In other instances the hygroma can progress in size to become larger than the fetus.
Cystic hygromas occur in approximately 1% of fetuses between weeks 9 and 16 of pregnancy.
Cystic hygromas can occur as an isolated finding or in association with other birth defect as part of a syndrome. They result from environmental factors, genetic factors, or unknown factors. Environmental causes for cystic hygroma include:
• Maternal viral infections, such as Parvovirus of Fifth’s disease
• Maternal substance abuse, such as abuse of alcohol Genetic syndromes with cystic hygroma as a clinical feature:
• The majority of prenatally diagnosed cystic hygromas are associated with Turner syndrome a chromosome abnormality in which a female has only one X chromosome instead of two.
• Chromosome abnormalities such as trisomies 13, 18, and 21
• Noonan syndrome
The pattern of inheritance for these syndromes varies depending upon the specific syndrome. Isolated cystic hygroma can be inherited as an autosomal recessive disorder for which parents are “silent” carriers. Finally, a cystic hygroma can occur from an unknown cause.
Because the risk for a chromosome abnormality approaches 50% when a cystic hygroma is found prenatally, amniocentesis or CVS (chorionic villus sampling) can be performed to diagnose these conditions. If a genetic syndrome is suspected, test availability depends on the specific disorder. Maternal viral studies may also be considered if hydrops is present or maternal exposure can be documented.
Work up for a prenatally diagnosed cystic hygroma includes:
• A detailed ultrasound, including fetal echocardiogram, to look for other anomalies that may indicate the cause for the hygroma
•A complete family history to determine if testing is indicated for hereditary syndromes.
•Amniocentesis or CVS to look for chromosome abnormalities or a specific genetic syndrome. Viral studies on amniotic fluid can be performed if indicated by the presence of hydrops. (Maternal serum screening does not help in determining the prognosis for fetus with a cystic hygroma.)
•Periodic ultrasound evaluations are necessary to look for development of other anomalies or fetal hydrops.
Cystic Hygroma ©2008 All rights reserved.In the event of a fetal demise, a complete post-mortem exam (autopsy) is helpful to determine risks to future pregnancies.
In some situations, a cystic hygroma can be present in a healthy baby. If a chromosome abnormality is not found in the fetus, the outcome is generally better than for those who do have a chromosome abnormality. In cases in which an isolated cystic hygroma does not resolve by 20 weeks gestation, 2-9% have a good outcome. Overall, there is generally a poor prognosis associated with the prenatal finding of cystic hygroma. Oligohydramnios (not enough amniotic fluid) or polyhydramnios (too much amniotic fluid) predicts a poor outcome. Hydrops occurs 22-76% of the time with a cystic hygroma and is almost always associated with miscarriage or fetal death.
A baby with a prenatally diagnosed cystic hygroma should be delivered in a major medical center equipped to deal with neonatal complications. An obstetrician usually decides the method of delivery. If the cystic hygroma is large, a cesarean section may be performed. After birth, infants with persistent cystic hygroma must be monitored for airway obstruction. A thin needle may be used to reduce the volume of the cystic hygroma to prevent facial deformities and airway obstruction. Close observation of the baby by a neonatalogist after birth is recommended. If resolution of the cystic hygroma does not occur before birth, a pediatric surgeon should be consulted.
Cystic hygromas that develop in the third trimester (after thirty weeks gestation) or in the postnatal period are usually not associated with chromosome abnormalities. There is a chance of recurrence after surgical removal of the cystic hygroma. The chance of recurrence depends on the extent of the cystic hygroma and whether the wall of the cyst was able to be completely removed.