The days that follow the surgery for the colostomy and g-tube we just start learning as much about how to care for the new "accessories" as we can. I know they will not let you take him home unless they feel I know how to care for him, so I pretty much don't let the nurses do any of the diaper changes and have them monitor me and show me how to do the whole colostomy "thing". Terms like "burp his bag" are now part of my daily dialogue.....who am I??? I was the girl who was scared to death of needles and blood, now I am caring for a protruding bowel out of my month old baby! Kind of impressed at how far I have come :)
Eric and I have to take a little class on caring for the G-Tube and colostomy from the Physician Assistant in the Surgery Department so we set up a time to meet with her. Our friend Barb agrees to watch Kierstin so we are able to go together. Trying to get all of this out of the way so once he is healed up we can go home!
We head in together to go to the class and Preston was running a fever. Oh great I think to myself. We meet the PA and proceed with the class learning about caring for the G-Tube. A few minutes after we start the Doctor comes in to check on Preston and then a bunch of doctors surround him. They take some blood samples to see if he has an infection. Of course at this point we are so distracted and worried that we can't continue the class and have to reschedule.
Later that night we learn he has an infection and they have him on a few antibiotics to get rid of it. Infection probably a result of the surgery, but they don't know for sure. So of course we worry and his fever is pretty consistent the next couple of days. It goes down with tylenol than goes back up.
I come in one morning and one of the doctors comes up to me and says they were trying to call me (my phone never rang since they were calling my home phone 2 hours away....communication at this hospital is awful!) Preston spiked a 102 degree fever so they put him on 2 other antibiotics and were able to get the fever down. He was fine by the time I got to his bedside but I was so mad. I had given them my cell number countless times! I had them double check they had it in the computers, they did. It just seemed like every time we would see a light a the end of the tunnel we would turn away from it and lose hope that we would ever take him home. So I pretty much held him and worried the rest of the day.
The next day they wanted my permission to do a spinal tab to test for meningitis. Since he had a fever so high they recommend this for all babies, because they don't often get a high fever like that. I told them I had to think about it so I talked to Eric who was back at work in PA. We agreed that if he had that going on too, we would want to know about it. So I agreed, but was absolutely freaked out about it! They do this right at his bed, but did now want me to be there (I think because I would freak out the doctor out). So many risks in a spinal tab in a baby, but I guess they do it all the time. I hate al these tests, I hate all the blood work all the IV's, everything. Preston does not like any of it and his little cry breaks my heart! I don't care that they do it all the time, this is my precious baby and I think he has been through enough. I pretty much start fighting with them on every think I think is unnecessary from this point on.
Anyhow, I guess he did great for his spinal tab and cried more about them making him stay still than anything. He does hate to be still! So I smooch him the rest of the day and find out the next day he was negative for meningitis! yay! He still has the infection thought and the one antibiotic he needs to be on for 10 days. So I guess we are there for at least 10 more days. Nobody seems to have any sort of an exit plan for us and I am getting upset. Preston starts doing and feeling better over the next few days. Eating is going better, not great but better. I am loving the G-tube because he still gets all he needs, even if he does not want to get it orally. I am ready to go home though.....Preston is ready, but still they just tell me we have to wait.....you would think I would be good at this by now!
Tuesday, October 30, 2012
Tuesday, October 23, 2012
Surgery Day....Again!
Surgery Day! Excited to do something to speed up the process, but hate sending a tiny baby into surgery again. We were told it could take up to 6 hours because they need to determine where the ganglion cells started in the bowl and to do that they would need to biopsy different sections and each time wait to see if pathology would find the cells and if not biopsy another section. We also elected to insert a feeding tube, after consulting with all the doctors, due to his sluggish eating. This also will help to get him home sooner.
So we prepared for a long day. Also Eric and I talked and since there did not seem to be a RSV restriction in the OR waiting area and in the hallways where they would wheel him through to get to the OR that we found a loop hole in the "no children" rule and we were going to get our kids in the same room and let them see each other again. So excited about that!
We woke up bright and early and headed into the hospital and made sure to pack up snacks and entertainment for Kierstin. Eric and Kierstin waited in the hall and I went in to the NICU with him. The nurses got him ready and when we received word from the Surgeon that she was ready we headed down (much later than the 8am time they scheduled him at). Kierstin, Eric and I all rode down the elevator with him. I think he perked up a little hearing Sissy's voice :). We talked to the Anesthesiologist and OR nurses as well as the surgeon and were saying our good byes and prayers with our boy when a phone call came from the ER. Due to a testicular torsion we were being bumped from the OR....look that up and you will see why! So we headed back up with him until around 12:00 where we would give it a second try.
Ok, so same thing....we head down there with him and pray over him and in he goes and we head to the waiting room. We wait about 45 minutes and the OR nurse comes out to tell us that the first biopsy results showed cells! yay! This means they don't have to do any more biopsies and they can proceed with the surgery. Eric's parents come and wait with us. Let me tell you after preparing to be there for 6 hours, I was so glad when the Surgeon came out after only 3 hours and said she was all done! It was successful and she was very pleased with how the surgery went. All great news and just what we needed! The Anesthesiologist came out and said something (which we could not understand since English clearly was not his first language) he was smiling and looked happy about it so we just said "Great!"
We head up and Eric and I take turns seeing our boy who is still out cold. All good! So he is kind of out of it for the rest of the day and we leave him to heal and don't pick him up :(.
The next day, I go in and start learning about Colostomy and G-Tube care, never thought I would be doing that, but I am surprising myself these days! I am doing so much that I never thought I would ever do. My world has changed so much from a year ago. I have changed. I am somehow a different person. Still the same values, but I am so much stronger. Preston has changed our whole family in the best ways. He continues to change us. My family is all becoming better versions of ourselves. That is just one of the gifts Preston has given us.
So we prepared for a long day. Also Eric and I talked and since there did not seem to be a RSV restriction in the OR waiting area and in the hallways where they would wheel him through to get to the OR that we found a loop hole in the "no children" rule and we were going to get our kids in the same room and let them see each other again. So excited about that!
Ok, so same thing....we head down there with him and pray over him and in he goes and we head to the waiting room. We wait about 45 minutes and the OR nurse comes out to tell us that the first biopsy results showed cells! yay! This means they don't have to do any more biopsies and they can proceed with the surgery. Eric's parents come and wait with us. Let me tell you after preparing to be there for 6 hours, I was so glad when the Surgeon came out after only 3 hours and said she was all done! It was successful and she was very pleased with how the surgery went. All great news and just what we needed! The Anesthesiologist came out and said something (which we could not understand since English clearly was not his first language) he was smiling and looked happy about it so we just said "Great!"
We head up and Eric and I take turns seeing our boy who is still out cold. All good! So he is kind of out of it for the rest of the day and we leave him to heal and don't pick him up :(.
The next day, I go in and start learning about Colostomy and G-Tube care, never thought I would be doing that, but I am surprising myself these days! I am doing so much that I never thought I would ever do. My world has changed so much from a year ago. I have changed. I am somehow a different person. Still the same values, but I am so much stronger. Preston has changed our whole family in the best ways. He continues to change us. My family is all becoming better versions of ourselves. That is just one of the gifts Preston has given us.
Wednesday, October 17, 2012
Our New Normal
Our lives were pretty much flipped around. I use to always thank God for how good we had it. Eric and I both have good jobs, our cars were paid for, we lived in a nice neighborhood, our precious Kierstin was smart, healthy and happy. We had it so good. Really, I don't think people appreciate things like this and take it for granted. I didn't, I thanked God every chance I had for how much he blessed our family and knew it could always change in a heartbeat. To tell you the truth, I was a bit mad at God during this time. I thought maybe I was being punished our he hated me. I know, I know....what a drama queen! God was still with me, my baby was alive, he was beautiful, he was so sweet and loved. God likes to challenge us and he knew Eric, Kierstin and I were strong enough to take on a challenge. Preston is in no way a punishment he is just the opposite and I feel awful for ever thinking that. Don't worry I got over that feeling, but to be honest, it took me a few weeks.
There were people in the NICU who would never take home their babies, mothers who could not hold their babies, not even kiss them. Now that is sad. I knew I needed to get over my little pitty party. I met a lot of super nice people while I was in Buffalo. Some of the staff are outstanding, and other mothers and I bonded. Preston even has a couple of friends as a result like Hunter and Corwin who were both premies. Preston was the big one because he was over 6 lbs! Hunter's mother Emily, who was also staying at the Ronald McDonald House, had been there since February, laying flat in bed for about 3 weeks trying to keep Hunter from coming out and then by his bed every day after his birth on February 16th. He was about 5 weeks older than Preston. At birth Hunter just weighed 1 lb 7oz, her husband's wedding ring fit right around his tiny leg. When Emily and I first met she was not even able to hold him, yet for hours she would sit by his bedside talking to him and monitoring his progress. She was his own personal nurse. Her husband, Chris would come on weekends to be with his family. Many stories like this one, every one of us dreaming of the day we can take our babies home.
We were in a routine every morning I would get up pump milk, get ready, go to the hospital, drop off the milk (I felt like I was working for a dairy), then go hold my sweet boy before it was time to pump yet again. Different groups of Doctors would come through and tell you any progress throughout the day. Nothing seemed to be going smoothly though finally after weeks and weeks and about 12 IV's in his poor little body they decided that he may have something called Hirschsprung's Disease. Of course then they decide to give me no information about this and tell me we just have to wait and see if that is the case and performa a biopsy on his colon to see. Information at this particular hospital was horrid! Such a disconnect between different departments and groups of doctors! Anyhow, so I googled it and learned that basically part of his colon was lacking cells that cause it to relax so he can pass gas and have a bowl movement. Causing severe discomfort and constipation. So after a few days they decide that they want to biopsy him because they think he has this and then a few days after that they actually do the biopsy which he had to go into the OR for. That was a Saturday and we did not get the results back until Wednesday.
You would think we were due to catch a break, right? Well you would be wrong! He had it! Common with Downs Syndrome but having both that and the Duodenal Atresia is not common. Yay us! Of course that was not good on my tiltering faith. At that time, the Surgeron who was seeing him who had an ego on him the size of Texas was off and a female Surgeon who we were not familiar with came to deliver this news. She seemed to have a more proactive approach and recommended that since he was still too small to do the surgery to correct this which is on average 6 hours long, that we consider getting a colostomy bag so we can get him home faster. I think all I heard was HOME! She said she could do it on Saturday and it was a 3 hour surgery. Not a fan of going to the OR for a 3rd time, but a big fan of doing something to get him home! The last surgeon just kept wanting us to wait wait wait. He even said if this test came back positive we would wait a while and then decide what to do. I don't like waiting. Eric, the Neonentologist team we were working with, the Surgeon and I all discussed and decided this was best and probably going to end up happening anyway.
So we waited until Saturday....getting good at this waiting thing...and prepared to send him off into Surgery yet again.
Monday, October 15, 2012
Waiting...
Ok, so we know he has Downs Syndrome now, his surgery was successful, and now we begin the recovery. I am told it might be up to a week before they even feed him and that healing is going to be a process. We have a beautiful boy to love. He is healing, he is sweet, he is adorable and he has the best hair! He mostly sleeps and Eric and I take turns holding him and rocking him. I am still in the hospital and I talk my Doctor into letting me stay until Friday because I am still so swollen. I am on the 6th floor and he is on the 3rd. I take the elevator down in my lovely hospital gown and just go stare at him. He is not the baby I pictured having, but he is perfect and a miracle and mine!
We had also learned that he has a VSD (hole in the heart). They are not viewing this as a major concern and were ok with him going under anesthesia for his surgery and say that they are going to continue to monitor it and will wait until he is 5 or 6 months to do anything about it. So we just add that to our list.
So emotional the next few days as we just bond with our baby. I watch every little expression that he makes and fall a little more in love with him. It is so sad to see your baby in that environment. You feel helpless and just wish that they are not suffering. He slept so much the first few days, I sometimes just watch him lay there and picture what his life is going to be like.
The worst was on Friday, March 30th. I had to be discharged from the hospital. It was so depressing to have to leave the hospital with no baby in my arms. I was just going down the road to the Ronald McDonald House, but it felt like I was going across the world. I carried this boy for 9 months and I just leave the hospital with nothing but a post pregnancy body. All the events that had transpired along with the hormones made me a mess. I cried at everything. My world was no longer how I pictured it to be, I was trying to be positive the best I could, but I just wanted to curl up in bed and sleep for a long time. I was so depressed. However; my boy needed me so I checked in at RMH and was greeted by some of the nicest people. Different groups came in every night and made dinner for the guests. That night someone had made a wonderful casserole. Eric and Kierstin ate with me and I remember feeling so hungry, I had two helpings and then I realized, I had not ate in a few days. Probably not good for someone trying to produce milk for a baby. I did not even notice, I was in such a fog.
It was snowing, a lot....this only added to my depression because anyone who knows me well knows I hate snow! My feet were still swollen and all I could fit into was flip flops, so my feet were freezing to boot. We ran to a store and picked up some items I needed and then Eric had to go with Kierstin back home so he could work in the morning. So they dropped me back off at the RMH and I cried myself to sleep. Woke up early the next morning and went to see my precious boy till 10 pm....this is pretty much how the next 6 weeks went. Eric and Kierstin came back and forth and then Eric and I would switch off seeing Preston. A few times we had our friend Barb watch Kierstin and we got to go see him together and my mom came back for a week and a half and that was nice because we could be together with him.
As far as progress goes....that was slow and emotional and a roller coaster! Good day, then a set back, then more good, then two bad days. He was not showing progress like they had hoped and could not figure out what was wrong. I was beside myself....what could it possibly be now? So we just continued waiting, going through tests that took forever, trying to get them to figure it out. During that time, the premie baby next to Preston passed away. Eric was in the room when it happened. That was the first of 5 babies that I would hear of passing during our stay.
We had also learned that he has a VSD (hole in the heart). They are not viewing this as a major concern and were ok with him going under anesthesia for his surgery and say that they are going to continue to monitor it and will wait until he is 5 or 6 months to do anything about it. So we just add that to our list.
So emotional the next few days as we just bond with our baby. I watch every little expression that he makes and fall a little more in love with him. It is so sad to see your baby in that environment. You feel helpless and just wish that they are not suffering. He slept so much the first few days, I sometimes just watch him lay there and picture what his life is going to be like.
The worst was on Friday, March 30th. I had to be discharged from the hospital. It was so depressing to have to leave the hospital with no baby in my arms. I was just going down the road to the Ronald McDonald House, but it felt like I was going across the world. I carried this boy for 9 months and I just leave the hospital with nothing but a post pregnancy body. All the events that had transpired along with the hormones made me a mess. I cried at everything. My world was no longer how I pictured it to be, I was trying to be positive the best I could, but I just wanted to curl up in bed and sleep for a long time. I was so depressed. However; my boy needed me so I checked in at RMH and was greeted by some of the nicest people. Different groups came in every night and made dinner for the guests. That night someone had made a wonderful casserole. Eric and Kierstin ate with me and I remember feeling so hungry, I had two helpings and then I realized, I had not ate in a few days. Probably not good for someone trying to produce milk for a baby. I did not even notice, I was in such a fog.
It was snowing, a lot....this only added to my depression because anyone who knows me well knows I hate snow! My feet were still swollen and all I could fit into was flip flops, so my feet were freezing to boot. We ran to a store and picked up some items I needed and then Eric had to go with Kierstin back home so he could work in the morning. So they dropped me back off at the RMH and I cried myself to sleep. Woke up early the next morning and went to see my precious boy till 10 pm....this is pretty much how the next 6 weeks went. Eric and Kierstin came back and forth and then Eric and I would switch off seeing Preston. A few times we had our friend Barb watch Kierstin and we got to go see him together and my mom came back for a week and a half and that was nice because we could be together with him.
As far as progress goes....that was slow and emotional and a roller coaster! Good day, then a set back, then more good, then two bad days. He was not showing progress like they had hoped and could not figure out what was wrong. I was beside myself....what could it possibly be now? So we just continued waiting, going through tests that took forever, trying to get them to figure it out. During that time, the premie baby next to Preston passed away. Eric was in the room when it happened. That was the first of 5 babies that I would hear of passing during our stay.
Thursday, October 11, 2012
We're in Holland???
The first day of a babies life is so exciting. Meeting siblings, family, mom and dad gushing with joy! We had all that but also so many tears, fighting, and worrying! The bright spot of my day was that Kierstin was coming to meet her brother! I dreamed of this moment....my two babies meeting for the first time. I had imagined her coming in my room with a big smile, I would gush with joy as she climbed onto my bed and reached to hold her little brother.
She was on her way to Buffalo and the hospital NICU was on restriction due to RSV. They had a rule that no visitors under 16 could go in. I had no idea of this rule until that day. I had this Dr, who decided she needed to follow me around pretty much all day. She was a Resident with absolutely no bedside manner. She told me of this rule. I said "My daughter will meet her brother before he goes into major surgery, and that is not up for debate" So the hospital social worker came to see me (I love how the social workers feel they need to talk down to you, at least this one) and told me again of this policy, I stood my ground and said you can test my daughter if you wish, you may take the baby into another room, but they will meet and I am not allowing you to take him into surgery until this happens. Finally they agreed that if she wore a mask and a gown she could enter the NICU to meet him. Ok, now I am not sure why they felt the need to stress me over this while I was already under tremendous stress when later I find out they make exceptions like this from time to time. Yeah that is just cruel!
I cried when they first met, not at all like I pictured it or how it should have been, but Kierstin masked up and got to see him! She sweetly touched his leg and talked to him, I think Preston was comforted by that voice that he had been hearing oh so much while he was in my belly. It was only for 5 minutes since that is all they would allow, but my children met that day and I will remember it always.
The next part of the day is a blur....I remember parts of it. Saying good bye and praying over our boy outside the OR. I was crying and I remember him whacking me in the eye with his IV....like he was saying, "knock it out mom, I am going to be fine!" I prayed that God would send angels around him to watch over him in that room and I think that he did. I remember Eric and I going back up to my hospital room to wait for him. Kierstin was there. At one point that annoying resident came in and I asked if they had done the blood test to determine if he did in fact had downs syndrome. She decided to tell me then oh yeah the results came in from the amnio and he does. That was an hour and a half into his 3 hour surgery....I know, nice that she could not wait to share that information. I remember her then attempting for me not to have the blood test done having the geneticists come into talk to me (while he was still in surgery) to talk about Downs Syndrome. 5 people apparently are needed for this...I still demanded the blood test and then kicked out 3 of them.
Finally word came that surgery went well and we could go see him. He was sedated but looked comfortable, I could not hold him the rest of the day or the next, but I sat by his bed crying, praying, thinking. That was the worst thinking....thinking about the life I had dreamed of for him and how I would need to give up that dream. I did not study Downs Syndrome, I was convinced my baby would be fine. I did not know what all that meant. I knew a few people with DS. They were sweet and so happy, but this was my baby. How would I protect him from this cruel world? How would I explain this to Kierstin? How do I explain it to him?
I think this poem explains it all...
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
She was on her way to Buffalo and the hospital NICU was on restriction due to RSV. They had a rule that no visitors under 16 could go in. I had no idea of this rule until that day. I had this Dr, who decided she needed to follow me around pretty much all day. She was a Resident with absolutely no bedside manner. She told me of this rule. I said "My daughter will meet her brother before he goes into major surgery, and that is not up for debate" So the hospital social worker came to see me (I love how the social workers feel they need to talk down to you, at least this one) and told me again of this policy, I stood my ground and said you can test my daughter if you wish, you may take the baby into another room, but they will meet and I am not allowing you to take him into surgery until this happens. Finally they agreed that if she wore a mask and a gown she could enter the NICU to meet him. Ok, now I am not sure why they felt the need to stress me over this while I was already under tremendous stress when later I find out they make exceptions like this from time to time. Yeah that is just cruel!
I cried when they first met, not at all like I pictured it or how it should have been, but Kierstin masked up and got to see him! She sweetly touched his leg and talked to him, I think Preston was comforted by that voice that he had been hearing oh so much while he was in my belly. It was only for 5 minutes since that is all they would allow, but my children met that day and I will remember it always.The next part of the day is a blur....I remember parts of it. Saying good bye and praying over our boy outside the OR. I was crying and I remember him whacking me in the eye with his IV....like he was saying, "knock it out mom, I am going to be fine!" I prayed that God would send angels around him to watch over him in that room and I think that he did. I remember Eric and I going back up to my hospital room to wait for him. Kierstin was there. At one point that annoying resident came in and I asked if they had done the blood test to determine if he did in fact had downs syndrome. She decided to tell me then oh yeah the results came in from the amnio and he does. That was an hour and a half into his 3 hour surgery....I know, nice that she could not wait to share that information. I remember her then attempting for me not to have the blood test done having the geneticists come into talk to me (while he was still in surgery) to talk about Downs Syndrome. 5 people apparently are needed for this...I still demanded the blood test and then kicked out 3 of them.
I think this poem explains it all...
WELCOME TO HOLLAND
by
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reservedEmily Perl Kingsley.
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Monday, October 8, 2012
Preston's Birth Day
So truth is I was excited and yet dreading this day....does that make sense? So excited to meet our little boy, kiss him, hold him, smell him, see what he looks like and just bask in all his wonderfulness! On the other hand I knew that once he was out there was a lot of uncertainty and scariness. He was in his nice little cocoon...me, and was all safe there. In the outside world he could not survive without a surgery and I knew they would whisk him away from me.
So the 11:00 am scheduled induction did not happen, I loved where I delivered Kierstin, it was small and nice. Buffalo is big and busy! Due to a lack of rooms I did not get in until about 1:30! We just sat in the waiting room...waiting! Uncomfortable, anxious, and just ready to see him. We finally got the room and I had tested positive for Group B Strep (not an STD....I know it sounds like one, but really common). So I had to have an antibiotic and then wait 4 hours before the next dose and then they would be able to break my water. So by the time they gave me the first dose it was like 3 pm. I got some potosin to start things up, but not any real pain just some mild cramping.
So we just hung out in the room, my mom had flown in from Florida to be there so she made it in time to wait with us. We texted updates, made some calls, talked, and that was about it. Then I got my next dose at about 7 and they were able to break my water finally. Let me tell you when they said I had a lot of fluid they were right! Eric would not even stand next to me he was so grossed out! He stood on the other side of the curtain and said it sounded like he was standing by a stream. It was quite gross!
Things started to get more intense, not too bad just I could feel it more. They all advised that if I wanted an epidural now was the time, because after the water breaks things really speed up, I took their advice and good thing. Dr. E checked me and I was at 7 cm I think she talked to me a bit and then was going to go get a bite to eat. I told her I felt a lot of pressure and she checked again and boom...10 cm and head was in launch mode!
I was whisked off to the OR for a natural birth. I will spare all the details, but we will just say embarrassing! 2 doctors and one nurse for me. Then about 20 people walk in for Preston. Just sitting there waiting around talking waiting for me to push him out. It was very uncomfortable to say the least!
He came out so easy, no pain at all. Dr. E even said ok just give me a small push or he is going to fly across the room. I remember that final push at 8:56 pm and then a small cry and he was out and he was beautiful! Lots of dark hair, his little eyes struggling to open in the bright OR lights. A little 6 lb 6oz peanut. I got to hold him right away while Eric cut the cord. They suctioned him and I remember him sounding like there was a lot of fluid in his lungs. He was perfect! So tiny and sweet. I fell even more in love with him.....all this waiting and worrying and here he was my baby, my little angel!
They quickly took him over to the 20 waiting people and gave him a quick examination. In what felt like forever they brought him over and Eric got to hold him for about a minute then I got to hold him again and kiss him and just marvel at how perfect he looked. I did not see a baby with downs syndrome. I just saw a perfect little boy, my little boy! He was so tiny, but so perfectly formed. He was our miracle! The nurse kept trying to take him back, but I was not ready to let go so I held on tight. Finally she pried him out of my arms and they whisked him off to the NICU. I would not see him again for 3 emotional agonizing hours!
So I went to the recovery area, Eric and my mom got to go visit him and would bring me pictures or send me some (Thankful for modern technology). I had to wait for the epidural to wear off before I could go anywhere. I found out he weighted 6 lbs 6 oz and was 19 inches long. 2 oz of fluid was suctioned out of him. Dr's would come in and out, surgeons telling me all kinds of things I don't even remember. All I thought about was how perfect he was and I did not care what label they put on him....he was my precious baby boy and nothing would ever change that! I was in love!
I finally did get to see him 3 hours later. In a wheel chair. I got to see that precious boy with a big tube down his throat, 2 iv's in his hands, and numerous monitors hooked to him. It broke my heart! What did they do to my little angel. It just looked so sad. This was not how it was suppose to go. We should be in a nice quiet room cuddling together, no wires or tubes. We should be nursing and bonding. Not like this!
I did get to hold him, but started to feel like I was going to faint so I had to give him up.....I was so mad at myself, but when I almost fell out of the wheelchair on the way back I guess I made the right decision. I would not see him until the next morning and then he would go into surgery.
So the 11:00 am scheduled induction did not happen, I loved where I delivered Kierstin, it was small and nice. Buffalo is big and busy! Due to a lack of rooms I did not get in until about 1:30! We just sat in the waiting room...waiting! Uncomfortable, anxious, and just ready to see him. We finally got the room and I had tested positive for Group B Strep (not an STD....I know it sounds like one, but really common). So I had to have an antibiotic and then wait 4 hours before the next dose and then they would be able to break my water. So by the time they gave me the first dose it was like 3 pm. I got some potosin to start things up, but not any real pain just some mild cramping.
So we just hung out in the room, my mom had flown in from Florida to be there so she made it in time to wait with us. We texted updates, made some calls, talked, and that was about it. Then I got my next dose at about 7 and they were able to break my water finally. Let me tell you when they said I had a lot of fluid they were right! Eric would not even stand next to me he was so grossed out! He stood on the other side of the curtain and said it sounded like he was standing by a stream. It was quite gross!
Things started to get more intense, not too bad just I could feel it more. They all advised that if I wanted an epidural now was the time, because after the water breaks things really speed up, I took their advice and good thing. Dr. E checked me and I was at 7 cm I think she talked to me a bit and then was going to go get a bite to eat. I told her I felt a lot of pressure and she checked again and boom...10 cm and head was in launch mode!
I was whisked off to the OR for a natural birth. I will spare all the details, but we will just say embarrassing! 2 doctors and one nurse for me. Then about 20 people walk in for Preston. Just sitting there waiting around talking waiting for me to push him out. It was very uncomfortable to say the least!
He came out so easy, no pain at all. Dr. E even said ok just give me a small push or he is going to fly across the room. I remember that final push at 8:56 pm and then a small cry and he was out and he was beautiful! Lots of dark hair, his little eyes struggling to open in the bright OR lights. A little 6 lb 6oz peanut. I got to hold him right away while Eric cut the cord. They suctioned him and I remember him sounding like there was a lot of fluid in his lungs. He was perfect! So tiny and sweet. I fell even more in love with him.....all this waiting and worrying and here he was my baby, my little angel!
They quickly took him over to the 20 waiting people and gave him a quick examination. In what felt like forever they brought him over and Eric got to hold him for about a minute then I got to hold him again and kiss him and just marvel at how perfect he looked. I did not see a baby with downs syndrome. I just saw a perfect little boy, my little boy! He was so tiny, but so perfectly formed. He was our miracle! The nurse kept trying to take him back, but I was not ready to let go so I held on tight. Finally she pried him out of my arms and they whisked him off to the NICU. I would not see him again for 3 emotional agonizing hours!
So I went to the recovery area, Eric and my mom got to go visit him and would bring me pictures or send me some (Thankful for modern technology). I had to wait for the epidural to wear off before I could go anywhere. I found out he weighted 6 lbs 6 oz and was 19 inches long. 2 oz of fluid was suctioned out of him. Dr's would come in and out, surgeons telling me all kinds of things I don't even remember. All I thought about was how perfect he was and I did not care what label they put on him....he was my precious baby boy and nothing would ever change that! I was in love!
I finally did get to see him 3 hours later. In a wheel chair. I got to see that precious boy with a big tube down his throat, 2 iv's in his hands, and numerous monitors hooked to him. It broke my heart! What did they do to my little angel. It just looked so sad. This was not how it was suppose to go. We should be in a nice quiet room cuddling together, no wires or tubes. We should be nursing and bonding. Not like this!
I did get to hold him, but started to feel like I was going to faint so I had to give him up.....I was so mad at myself, but when I almost fell out of the wheelchair on the way back I guess I made the right decision. I would not see him until the next morning and then he would go into surgery.
Thursday, October 4, 2012
Last Few Weeks of Craziness!
Ok, so I will not deliver with the Doctor I wanted at the hospital I wanted and I am 34 weeks pregnant. I need to get a new doctor in Buffalo STAT! Buffalo by the way is 2 hours away from where I live. Our wonderful friend, Barb, who proves to be so helpful during our stay in Buffalo helps me find a wonderful group of Doctors, especially Dr. E who will deliver Preston. They are in demand so I call and talk to Dr. E's husband, who is also an OB Gyn for high risk pregnancies, I explain my situation and he said he will discuss with the other 2 doctors and get back to me. They agree to take me on and deliver at Children's hospital where they typically do not deliver. So I begin my weekly visits there.
So during that time I swell.....my feet are soooo large, I really should post a picture, but I will spare you all! I am in constant pain, I go to half days at work because sitting for that long is so painful that I am almost in tears. I seriously can do nothing without being in pain....my stomach is so large and I have an abnormal amount of amniotic fluid....everyone keeps commenting on the large amount of fluid so apparently it was something! I am also still a little worried, but trying to be as positive as I can.
I have a dream one night, it is strange, but I saw Jesus. It felt different, It smelled different, I could not move. I kept asking "Jesus, will my baby be ok?" My eyes close shut and I still feel him but can not see him. I keep asking, "Will my baby be ok?" I can not open my eyes as hard as I try. I ask again and finally get my eyes open.....I am awake and in my dark room. I still feel his presence. He never did answer me, but he visited me in that dream. It is going to be ok. It really is!
So at 37 weeks I go to a doctors appointment and they tell me I am dilating and because of all the fluid I have they want to take the baby early. The are afraid that the umbilical cord is going to come out before that babies head and that is NOT a good thing. So in order to determine if we can do this they want to do another amnio right then to determine if his lungs are developed and have me come back the next day (Friday). I am not ready to have a baby yet! I ask what if I start having contractions again, they don't think that will happen, but if it does they will not stop it at this stage. I talk them into waiting until Monday to do the amnio and then if the lungs are developed they will deliver that day! They later switch that to Tuesday due to a crowed hospital, but that is why he came just 2 days shy of 38 weeks.
I went to work on Monday (crazy I know). Then we went to Buffalo on Tuesday and prepared to have ourselves a healthy baby boy! Excited and nervous we went in for the amnio....hardly hurt a bit, these doctors did not feel the need to go in through my belly button and I so appreciated that. They told me to go to the hospital at 11 am and they would be ready for me! So we just kind of relaxed a little and went to Starbucks. Then off to the hospital where our roller coaster ride would begin!
So during that time I swell.....my feet are soooo large, I really should post a picture, but I will spare you all! I am in constant pain, I go to half days at work because sitting for that long is so painful that I am almost in tears. I seriously can do nothing without being in pain....my stomach is so large and I have an abnormal amount of amniotic fluid....everyone keeps commenting on the large amount of fluid so apparently it was something! I am also still a little worried, but trying to be as positive as I can.
I have a dream one night, it is strange, but I saw Jesus. It felt different, It smelled different, I could not move. I kept asking "Jesus, will my baby be ok?" My eyes close shut and I still feel him but can not see him. I keep asking, "Will my baby be ok?" I can not open my eyes as hard as I try. I ask again and finally get my eyes open.....I am awake and in my dark room. I still feel his presence. He never did answer me, but he visited me in that dream. It is going to be ok. It really is!
So at 37 weeks I go to a doctors appointment and they tell me I am dilating and because of all the fluid I have they want to take the baby early. The are afraid that the umbilical cord is going to come out before that babies head and that is NOT a good thing. So in order to determine if we can do this they want to do another amnio right then to determine if his lungs are developed and have me come back the next day (Friday). I am not ready to have a baby yet! I ask what if I start having contractions again, they don't think that will happen, but if it does they will not stop it at this stage. I talk them into waiting until Monday to do the amnio and then if the lungs are developed they will deliver that day! They later switch that to Tuesday due to a crowed hospital, but that is why he came just 2 days shy of 38 weeks.
I went to work on Monday (crazy I know). Then we went to Buffalo on Tuesday and prepared to have ourselves a healthy baby boy! Excited and nervous we went in for the amnio....hardly hurt a bit, these doctors did not feel the need to go in through my belly button and I so appreciated that. They told me to go to the hospital at 11 am and they would be ready for me! So we just kind of relaxed a little and went to Starbucks. Then off to the hospital where our roller coaster ride would begin!
Tuesday, October 2, 2012
Worst Day of My Life!
March 1, 2012.....I prayed and prayed. I know all is going to be ok, not sure why I know this, but I just feel it. We get into the ultra sound room with the tech and see our sweet little Preston on the screen moving like crazy! She comments on how active he is. So she gets strangely quiet and Eric starts to ask questions all of which she says we need to talk to the Doctor. It just gets weird, she asks "so Dr. W saw you 2 weeks ago right?" We say yes. "She scanned you herself?" yes "She did not see anything except the duodenal atresia?" yes. It just was strange and you knew something was wrong, but she kept saying you need to talk to the Dr, who apparently can not come see us at that moment, so I start sobbing and Eric starts sobbing. The tech says "I am so sorry, you seem like such nice people. I wish I could tell you something but you have to wait for Dr. S."
So finally Dr. S comes in (who is super loud) just to tell us that she wants us to go get something to eat and then she will have time to talk to us. Yeah I feel like eating, I do eat a little because it is for Preston not me. So finally after over an hour she meets with us and says "Club Foot, Sandal Toe, something with the heart chambers, something with the brain, Trisomy 18 perhaps (which is lethal). But she wants to scan me again to be sure. First thing she does is call in another doctor. She rules out Club Foot, she is iffy about the brain thing, and still sees everything else. She wants to get me into the Pediatric Cardiologist right away and also is strongly advising an amnio test so we can be prepared. Oh and says you don't really have a lot of options at this point (I kind of want to punch her).
Against my better judgement we agree to the amnio. A long needle inserted into my belly button....I think I am still getting dried up blood out of there. They want to monitor me after that and I start having pretty strong contractions pretty close together so down to maternity I go to get some medication to stop the contractions. I get an IV and am told I need to take 3 pills with an hour between each one. If that does not work I need to stay the night. The whole time we are hysterical. Nothing in life is worse then thinking something bad is going to happen to your child. It is a feeling I wish for no one. Finally the contractions stop and we are able to go over to the awesome Cardio doctor to have him take a look at Preston's heart. He is truly a wonderful Doctor, so comforting and stayed late just to see us. He took a look and did not see anything abnormal in the heart for the stage of pregnancy. It was just like a typical 34 week old babies heart. Ok, big weight lifted for that portion at least.
So we get home and cry some more, I am still feeling some contractions and am mentally and physically drained. I stay home from work to relax as instructed. My regular OB doctor calls me to see how I am and I just say "Confused" he says he is going to get the results from the "Fish Test" which is a pulmonary test that you get from the amniotic fluid and the official results will probably not be out until after the baby is born since I am so far along at this point. It is Friday so he said he will call me Monday or Tuesday. I think it is Wednesday before I finally hear from his office and he wants Eric and I to come in....so not a good sign. He shares with us that the Fish Test shows that the baby does have Downs Syndrome. We ask how accurate that is and he says around 90%. In that office I felt a calm come over me...I can't explain it, I just knew it was going to be ok. I still worried and cried, but I had faith. To be honest I believed God would heal him and he would be fine. That was not his plan, but that is ok! I look at his sweet face and I can't imagine him any other way. I would not want him any other way. I like that he is going to have a totally different outlook on life than anyone else. I love that he is different and is going to amaze people with what he is able to accomplish. I would not change him for anything!
So finally Dr. S comes in (who is super loud) just to tell us that she wants us to go get something to eat and then she will have time to talk to us. Yeah I feel like eating, I do eat a little because it is for Preston not me. So finally after over an hour she meets with us and says "Club Foot, Sandal Toe, something with the heart chambers, something with the brain, Trisomy 18 perhaps (which is lethal). But she wants to scan me again to be sure. First thing she does is call in another doctor. She rules out Club Foot, she is iffy about the brain thing, and still sees everything else. She wants to get me into the Pediatric Cardiologist right away and also is strongly advising an amnio test so we can be prepared. Oh and says you don't really have a lot of options at this point (I kind of want to punch her).
Against my better judgement we agree to the amnio. A long needle inserted into my belly button....I think I am still getting dried up blood out of there. They want to monitor me after that and I start having pretty strong contractions pretty close together so down to maternity I go to get some medication to stop the contractions. I get an IV and am told I need to take 3 pills with an hour between each one. If that does not work I need to stay the night. The whole time we are hysterical. Nothing in life is worse then thinking something bad is going to happen to your child. It is a feeling I wish for no one. Finally the contractions stop and we are able to go over to the awesome Cardio doctor to have him take a look at Preston's heart. He is truly a wonderful Doctor, so comforting and stayed late just to see us. He took a look and did not see anything abnormal in the heart for the stage of pregnancy. It was just like a typical 34 week old babies heart. Ok, big weight lifted for that portion at least.
So we get home and cry some more, I am still feeling some contractions and am mentally and physically drained. I stay home from work to relax as instructed. My regular OB doctor calls me to see how I am and I just say "Confused" he says he is going to get the results from the "Fish Test" which is a pulmonary test that you get from the amniotic fluid and the official results will probably not be out until after the baby is born since I am so far along at this point. It is Friday so he said he will call me Monday or Tuesday. I think it is Wednesday before I finally hear from his office and he wants Eric and I to come in....so not a good sign. He shares with us that the Fish Test shows that the baby does have Downs Syndrome. We ask how accurate that is and he says around 90%. In that office I felt a calm come over me...I can't explain it, I just knew it was going to be ok. I still worried and cried, but I had faith. To be honest I believed God would heal him and he would be fine. That was not his plan, but that is ok! I look at his sweet face and I can't imagine him any other way. I would not want him any other way. I like that he is going to have a totally different outlook on life than anyone else. I love that he is different and is going to amaze people with what he is able to accomplish. I would not change him for anything!
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