As 2012 comes to a close and we prepare to ring in a new year I want to reflect on all of the memories we made this past year.
We started out in a new house that God helped us find. In the town we live in decent rentals, especially single family homes, are hard to find. After selling our large home we were afraid we would not find the space we would need, but the Lord came through giving us a 4 bedroom, 2 bathroom house. Very clean and wonderful landlords. We moved in January 6th and closed on the house we were selling the following week.
I am going to add that selling that house was something we wanted to do for a few years and once again a buyer came through giving us exactly what we wanted, actually a little more. We had been praying for a sale and while I am still not sure about the timing on moving with what all we would face in 2012 but, God knows what he is doing so who are we to question him?
It seemed like as soon as we moved things with the pregnancy began to get difficult. I found out shortly after that I had gestational diabetes and had to be put on a strict diet. Since I had that they monitored me more closely and began to find signs of Downs Syndrome. So the weekly trips to the doctor in Buffalo began. I then began to have extreme swelling in my leg and ankles to the point where it was painful to walk. 2012 was not starting out so well!
On March 27th our world changed forever (in a good way!) when we welcomed Preston into our family! Of course you know that lead to some very sad times as we had to send him off to surgery and come to terms with the fact that our precious boy does indeed have downs syndrome. Also the 6 weeks I had to live in Buffalo with Preston who was in the NICU while my husband and daughter drove back and forth between home and the Ronald McDonald house. That was stressful to say the least, but we got through it together and are stronger for it.
During the time in Buffalo we got a chance to see what a great community we have and how many precious people God had put in our lives as we received gifts, cards, money, and gift cards from so many people and organizations wanting to help our family in whatever way they could. I have never been in a position like that before where I was at the receiving end of such kindness. I remember feeling such a relief as all those gifts came in. At the time I was only getting 60% of my paycheck due to the fact that I was on maternity leave. Gas was near $4/gallon and going back and forth was putting a financial strain on us. Not to mention that I was away from home and needed day to day things. 2012 showed me how wonderful people can be and what a great community I live in.
May 6th was the best when our precious boy finally got to come home with us. He was instantly loved by so many and was such a blessing to have with us all of the time. The first few days took some getting use to, but we made it and now we have mastered the colostomy bag! That is one thing I never thought I would be learning in 2012!
July 7th was "Walk with Preston" a benefit for CARE for Children who have helped Preston so much with his development. It was so emotional to see all the wonderful people in our community show up to show their love for Preston and help raise money for such a wonderful organization that helps so many children like preston who need a little extra boost to accomplish those early milestones. Karli who organized the event was able to raise a total of $12,000 over the next few months, showing again what wonderful friends we have.
If you did not have a chance yet, check out the awesome video about the event that was done by Tyler Little of Evoking Emotions. http://vimeo.com/45874668
Following that overwhelming turnout at the walk, the Bob Gleason Memorial Golf tournament chose Preston as the recipient of the proceeds made from that event. Again such overwhelming kindness from our wonderful community. The weather might stink, but the people can't be beat! :)
Lets not forget Kierstin! She started her last year of Preschool. She was a little hesitant about going back, but once she got back into the swing of things she loved it! She has made such great friends at school and loves her teacher. She just loves life! She has a ton of energy and loves to play and make us laugh! Her best friends are Daisy, Baby Jess and Preston. She loves games, crafts and puzzles. I could not have asked for a better daughter and a better big sister for Preston. She is so passionate and loving. There is no doubt that God had a plan when he knit this family together!
We celebrated Kierstin turning 5 in October with a big Ariel themed bowling bash with all of Kierstin's friends! We all had a great time and Preston took a nice nap :)
November we were able to go to Florida to see my mom, brother, sister-in-law and adorable nephew. We celebrated Thanksgiving with all of them and I got to feel my baby niece kick inside my sister-in laws belly.
On that trip Preston started doing an adorable fake laugh, that he now does all of the time. So cute! Also a big thing on that trip was Preston started eating every bottle all the time so we don't even use his feeding tube anymore! Big for him and we all are so proud.
December Preston got two teeth and started doing so much better on his solid foods. I am much cleaner at the end of the feedings now! We all enjoyed a nice Christmas together as a family. That about sums up our 2012 in a nutshell! What started out a rough year has turned into our best year yet. We are anxiously awaiting to see what great things God has in store for us in 2013! Happy New Year to all!
Monday, December 31, 2012
Christmas 2012
Our family had the best Christmas! We woke up to find Santa had paid us a visit. Preston got lots of toys that light up as well as some books and Kierstin got the violin she had been wanting for the past 6 months!
Most importantly we celebrated the most precious gift, Christ's birth, together as a family!
Tuesday, December 4, 2012
Teamwork and Not Sweating the Small Stuff!
Being home with Preston was and still is amazing! He was such a great sleeper, we did have to get up every 3 hours to feed him due to the weight gain issue, but we used his g-tube at night and let him get his beauty sleep. Eric and I would alternate so we could get at least a 6 hour stretch of sleep at a time. Team work is key with any baby, but especially so when you have one that needs some extra care. That is pretty much how we got through the first few months home until we were able to fall into a more "normal" routine.
I want to say this, Eric is my rock. He is the best daddy I could have ever asked for for my children. His life totally changed when Kierstin entered the world and he became a father. She immediately had him wrapped around her tiny finger. Preston may need extra care, but Eric is never going to shy away from that like some men would. He is with me 100% about wanting Preston to achieve all in life that he can and wants to. Almost 15 years ago when we first met I know we never thought life would take us to having a child with special needs, but I know God placed us together and know that together we are stronger then we are apart. Preston is going to accomplish amazing things in life and amaze all the critics out there, but know that he has two parents that are behind him all the way.
Raising any child is never an easy task, but the reward is oh so great. I know the road ahead of us is not always going to be easy. We have many challenges that lie ahead, but Preston has two parents that think the world of him. We are both so excited to see what God has in store for his life. He was given to us for a reason. Downs Syndrome is not going to scare us. It is not something we are going to fear, it is something we are going to embrace and our hope is to change the way people think about someone with this condition.
An older relative of mine was trying to encourage me (I think) and said "Don't ever say he has Down's Syndrome" I was taken back a little but just kind of walked away. I found that pretty offensive, but considering the age of the person and that fact that it really was said more in ignorance vs malice I chose to shut my mouth and not say anything (for those of you that know me you must be shocked!).
I don't want anyone to ever think that is something to be ashamed of. He does have Down's Syndrome, it is a fact not something I am trying to hide. I for one have decided that I like that he has Downs Syndrome. Everyone always looks at me like I am crazy when I say that and my reply is always "What do you want me not to like it?"
He may take a little longer to catch on to some things in life that the rest of us take for granted, but when he does get it we are all going to be that much more excited! I am learning not to sweat the little things anymore. So what if the car got a dent in it? So what that I threw my phone in the washer? Is that the end of the world? Absolutely not! Anymore, I see people freaking out about simple things and I kind of want to say....REALLY?!?!? I can't be too much of a critic, I use to be one of them, but I am learning.
So I am really not sure what this post is about, but hopefully you all got something out of it :)
I want to say this, Eric is my rock. He is the best daddy I could have ever asked for for my children. His life totally changed when Kierstin entered the world and he became a father. She immediately had him wrapped around her tiny finger. Preston may need extra care, but Eric is never going to shy away from that like some men would. He is with me 100% about wanting Preston to achieve all in life that he can and wants to. Almost 15 years ago when we first met I know we never thought life would take us to having a child with special needs, but I know God placed us together and know that together we are stronger then we are apart. Preston is going to accomplish amazing things in life and amaze all the critics out there, but know that he has two parents that are behind him all the way.
Raising any child is never an easy task, but the reward is oh so great. I know the road ahead of us is not always going to be easy. We have many challenges that lie ahead, but Preston has two parents that think the world of him. We are both so excited to see what God has in store for his life. He was given to us for a reason. Downs Syndrome is not going to scare us. It is not something we are going to fear, it is something we are going to embrace and our hope is to change the way people think about someone with this condition.
An older relative of mine was trying to encourage me (I think) and said "Don't ever say he has Down's Syndrome" I was taken back a little but just kind of walked away. I found that pretty offensive, but considering the age of the person and that fact that it really was said more in ignorance vs malice I chose to shut my mouth and not say anything (for those of you that know me you must be shocked!).
I don't want anyone to ever think that is something to be ashamed of. He does have Down's Syndrome, it is a fact not something I am trying to hide. I for one have decided that I like that he has Downs Syndrome. Everyone always looks at me like I am crazy when I say that and my reply is always "What do you want me not to like it?"
He may take a little longer to catch on to some things in life that the rest of us take for granted, but when he does get it we are all going to be that much more excited! I am learning not to sweat the little things anymore. So what if the car got a dent in it? So what that I threw my phone in the washer? Is that the end of the world? Absolutely not! Anymore, I see people freaking out about simple things and I kind of want to say....REALLY?!?!? I can't be too much of a critic, I use to be one of them, but I am learning.
So I am really not sure what this post is about, but hopefully you all got something out of it :)
Friday, November 16, 2012
Our baby is coming home at last!
So I got dressed and went into the hospital. I went to the Doctor's station and talked to the Fellow and asked what was going on. He wanted to go to the bedside to talk so we went and he said that the Physician working over the weekend (not the one we saw all week who told me we could go home) did not like that he did not put on enough weight over the last few days so they wanted to keep him longer. My first question was "What is your plan to put more weight on him?" His answer was they were going to increase the calories in his formula (all things I knew how to do from the class I took in formula mixing just two days ago). I of course asked if there was anything else which there was not. So my response was "I don't feel you are doing anything for him here that I cannot do at home so I am not sure why you feel that you need to keep him here" The answer was that is just how we do it. That infuriated me. So I came back with "that does not makes sense to me so I will be discharging him and he will be going today. I think the nurses and doctors were all taken back a bit by this, but I really did not care at that point. The doctor stumbled over his words a bit and asked if I could at least give him 15 minutes so he could discuss this with the Attending Doctor. I said yes, I am not taking him out this moment, but before the end of the day he will be going home.
So he left and of course we had a new nurse that never had cared for Preston before and I swear she thought she had to walk on eggshells around me. I swore to her that I really was a sane person and that I just did not see the reasoning behind there decision and they failed to tell me anything they could do for him at the hospital that I could not do at home. I still think she was scared of me.
The Physician Assistant that had been seeing us all week came in thinking we were still going home. I told her what was happening and she kind of gave me a shocked look like she did not understand that either. So while we were talking the fellow came back in and wanted to be sure I knew how to make the increased calorie formula. I said yes, I am able to mix and your nutritionist went over all of that with me on Friday. Then he said that the doctor approved and we would be discharged today. I just said yes I know he will be.
So I had to be a huge bitch, but my baby was going home and we were aiming for right after his 3pm feeding!
So he left and of course we had a new nurse that never had cared for Preston before and I swear she thought she had to walk on eggshells around me. I swore to her that I really was a sane person and that I just did not see the reasoning behind there decision and they failed to tell me anything they could do for him at the hospital that I could not do at home. I still think she was scared of me.
The Physician Assistant that had been seeing us all week came in thinking we were still going home. I told her what was happening and she kind of gave me a shocked look like she did not understand that either. So while we were talking the fellow came back in and wanted to be sure I knew how to make the increased calorie formula. I said yes, I am able to mix and your nutritionist went over all of that with me on Friday. Then he said that the doctor approved and we would be discharged today. I just said yes I know he will be.
So I had to be a huge bitch, but my baby was going home and we were aiming for right after his 3pm feeding!
They were so happy to see each other!
5 minutes after we left the hospital Kierstin asked "Why did you pick a boy?"
We also stopped at the Wendy's drive thru simply because we did that when we took Kierstin home!
Home at last just shy of 6 weeks after I left! Now this is how life should be :)
Tuesday, November 13, 2012
Done Waiting
Waiting is so not my thing, but I was getting pretty good at it. I felt the worst for Kierstin. Before all of this I have never been away from her over night. Never. Now her and Eric were back and forth between PA and Buffalo and she could not even see her brother. I was ready to be a family again. All in one house....I would be happy with all in one state!
Preston was getting better, he had to finish up the antibiotic but he only had a week left on it. I decided to get the ball rolling and asked the attending doctor what the exit plan was. I did not feel there was much more they could do at this point. She did agree with me and said that as long as nothing else went wrong he may be able to go home once he was done with the antibiotic if Surgery agreed. So then I talked with surgery and they seemed ok with that plan too. YAY!
Lots of things were annoying me at this point....I kind of got sick of needless poking and prodding at my baby. I did not feel the need for more IV's in his hands when he had an IV in his leg already that they could use. I started voicing my opinion more loudly and even kicked out a few doctors when they thought they needed to do senseless procedures. I posted notes on his crib on what they could and could not do with out my permission. I am sure they were ready to get rid of me!
I kept the fact he was going home on the down low because I have seen other babies who were ready and then some sort of set back would occur and plan canceled. So as to not jinx us I just told a few people and crossed my fingers and prayed that nothing new would arise.
Finally on Thursday the Dr. told me she was planning on releasing him on Sunday after he received his last dose of antibiotic. We were so ecstatic! We have been waiting for what seemed like forever to bring our boy home and the day was near! Saturday night we went and got him the cutest little going home outfit from Gymboree. We even got him a "little brother" undershirt to wear.
We went back to the Ronald McDonald house and packed up all of our stuff....boy over 6 weeks we sure accumulated a lot of stuff in our small room. That night we went to the hospital a final time and kissed our boy good night. Walking out of that hall was so much different, knowing the next night we would be home all together.
So bright and early the next morning, I woke up and saw I had a message on my phone. They decided that due to him not gaining weight as much as they liked they were not going to let him come home. Eric was upset, not me. I thought that was ridiculous and was no longer letting them call the shots. I was going to go in there and take my boy home.
Preston was getting better, he had to finish up the antibiotic but he only had a week left on it. I decided to get the ball rolling and asked the attending doctor what the exit plan was. I did not feel there was much more they could do at this point. She did agree with me and said that as long as nothing else went wrong he may be able to go home once he was done with the antibiotic if Surgery agreed. So then I talked with surgery and they seemed ok with that plan too. YAY!
Lots of things were annoying me at this point....I kind of got sick of needless poking and prodding at my baby. I did not feel the need for more IV's in his hands when he had an IV in his leg already that they could use. I started voicing my opinion more loudly and even kicked out a few doctors when they thought they needed to do senseless procedures. I posted notes on his crib on what they could and could not do with out my permission. I am sure they were ready to get rid of me!
I kept the fact he was going home on the down low because I have seen other babies who were ready and then some sort of set back would occur and plan canceled. So as to not jinx us I just told a few people and crossed my fingers and prayed that nothing new would arise.
Finally on Thursday the Dr. told me she was planning on releasing him on Sunday after he received his last dose of antibiotic. We were so ecstatic! We have been waiting for what seemed like forever to bring our boy home and the day was near! Saturday night we went and got him the cutest little going home outfit from Gymboree. We even got him a "little brother" undershirt to wear.
We went back to the Ronald McDonald house and packed up all of our stuff....boy over 6 weeks we sure accumulated a lot of stuff in our small room. That night we went to the hospital a final time and kissed our boy good night. Walking out of that hall was so much different, knowing the next night we would be home all together.
So bright and early the next morning, I woke up and saw I had a message on my phone. They decided that due to him not gaining weight as much as they liked they were not going to let him come home. Eric was upset, not me. I thought that was ridiculous and was no longer letting them call the shots. I was going to go in there and take my boy home.
Thursday, November 1, 2012
Tuesday, October 30, 2012
Infections, Fevers, and Spinal Taps....Oh my!
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!
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 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!
Saturday, September 29, 2012
What Happened...
So for those of you who always wondered here is how it all went down (no pun intended-you have to have some sense of humor). I was about 18 weeks pregnant and had already refused all the prenatal testing that screens for Downs Syndrome and others. We went in to see if Kierstin was having a brother or a sister and after all that excitement my doctor told me they found a "bright spot" on his heart called a echogenic cardiac focus. She said she only saw one and it was probably nothing, but wanted me to see a specialist because they are linked to babies with Downs Syndrome. She kept saying it was probably nothing, but wanted to be cautious.
So after a planned trip to Florida to see family, we went to a specialist in Buffalo, NY. First the ultra sound tech looked over him. I have to add that Preston has always been a mover, I felt him around 13 weeks and he never stopped! I thought for sure it was not him at first, but it got stronger and stronger and pretty soon there was no denying it was our boy! So anyhow, due to all the moving around it was hard for her to get an accurate measurement. The measurements she finally got were off and we got all worried. Then the Dr. came in and re-measured every inch of him and after about 3 hours she said to her all looked fine, giving the disclaimer that you can never be 100% with an ultra sound and I should get an amnio test to be sure and then I could decide what I wanted to do. No thanks! I know what I am going to do and finding out is not going to change it so why worry!
So then I went for the dreaded glucose test to see if I had gestational diabetes. I failed! I went for another 3 hour test, failed again :( So put on a strict diet and the doctor decides to monitor me weekly with ultrasounds. So first one I go in for shows something "funny" with the stomach. He makes us come into his office and tells us we need to go back to the specialist.
So we go, and she confirms that the baby has what they call "double bubble" or Duodenal Atresia. Which, as easy as I can describe it is a closure or block in the duodenum and food would not be able to pass through unless he had a surgery to repair. This occurs in 1 out of every 10,000 births. However about 40% of babies with downs syndrome have this condition. Still she says measurements look fine and she double checks the films from last time and said there was no sign of this. So she explains we need to meet with a Pediatric Surgeon and it will mean I need to deliver in Buffalo and he will need a surgery soon after birth.
We were upset! We were thinking he would be in the hospital for 2 weeks and I just remember thinking how horrible that would be and how I did not think I could do that. Little did I know it would turn into 6 long weeks!!!! So we met with the surgeon, I am going to call him Dr. I Am Soooo Good. ha ha, he was a trip!
Then we had to see yet another specialist at the Children's hospital on March 1st....this is the worst day of mine and Eric's entire life......Cliff Hanger!
So after a planned trip to Florida to see family, we went to a specialist in Buffalo, NY. First the ultra sound tech looked over him. I have to add that Preston has always been a mover, I felt him around 13 weeks and he never stopped! I thought for sure it was not him at first, but it got stronger and stronger and pretty soon there was no denying it was our boy! So anyhow, due to all the moving around it was hard for her to get an accurate measurement. The measurements she finally got were off and we got all worried. Then the Dr. came in and re-measured every inch of him and after about 3 hours she said to her all looked fine, giving the disclaimer that you can never be 100% with an ultra sound and I should get an amnio test to be sure and then I could decide what I wanted to do. No thanks! I know what I am going to do and finding out is not going to change it so why worry!
So then I went for the dreaded glucose test to see if I had gestational diabetes. I failed! I went for another 3 hour test, failed again :( So put on a strict diet and the doctor decides to monitor me weekly with ultrasounds. So first one I go in for shows something "funny" with the stomach. He makes us come into his office and tells us we need to go back to the specialist.
So we go, and she confirms that the baby has what they call "double bubble" or Duodenal Atresia. Which, as easy as I can describe it is a closure or block in the duodenum and food would not be able to pass through unless he had a surgery to repair. This occurs in 1 out of every 10,000 births. However about 40% of babies with downs syndrome have this condition. Still she says measurements look fine and she double checks the films from last time and said there was no sign of this. So she explains we need to meet with a Pediatric Surgeon and it will mean I need to deliver in Buffalo and he will need a surgery soon after birth.
We were upset! We were thinking he would be in the hospital for 2 weeks and I just remember thinking how horrible that would be and how I did not think I could do that. Little did I know it would turn into 6 long weeks!!!! So we met with the surgeon, I am going to call him Dr. I Am Soooo Good. ha ha, he was a trip!
Then we had to see yet another specialist at the Children's hospital on March 1st....this is the worst day of mine and Eric's entire life......Cliff Hanger!
Wednesday, September 26, 2012
Meet Preston!
My blogging career was short lived! So much has happened since I last posted and that is really the reason I want to start this again!
We had a baby boy! A wonderful, handsome, glorious baby boy! His name is Preston and he was lucky! He was born with an extra 21st chromosome. I want to elaborate on why we are so happy with how beautiful God has made him just in case someone stumbles upon this blog who is pregnant with a baby who has tested positive for Downs Syndrome.
We found out it was a possibility late, I cried, I worried, I was so sad, I was mad, I hoped for the best, but I decided that no matter what he will be loved! I have always been pro life and knew all along that whatever baby God blessed me with I would love unconditionally. That is why I never got the prenatal testing the doctors like to shove down your throat. I always said that, but to be honest I never though my baby would be anything less than "perfect". We already had a totally healthy 4 year old daughter. We wanted to add a little brother or sister to the mix.
We had a plan and we thought it was a great plan....little did we know God had an even better plan for our lives! One that would change who we are and how we viewed life. He is only 6 months old as I write this. I know there are challenges I have yet to face. Battles I will need to fight. I don't care! I am in love with a boy named Preston and I will move heaven and earth for him. I was chosen. I was handpicked by God himself to be his Mommy. I view this as an honor. All children are blessings, but I received an extra special one.
I am going to commit myself to write more of our story. The story over the last 6 months and the story that has yet to be told. I might not know how it will go just yet, but I know that it is going to be a beautiful story about a boy who changed the world!
We had a baby boy! A wonderful, handsome, glorious baby boy! His name is Preston and he was lucky! He was born with an extra 21st chromosome. I want to elaborate on why we are so happy with how beautiful God has made him just in case someone stumbles upon this blog who is pregnant with a baby who has tested positive for Downs Syndrome.
We found out it was a possibility late, I cried, I worried, I was so sad, I was mad, I hoped for the best, but I decided that no matter what he will be loved! I have always been pro life and knew all along that whatever baby God blessed me with I would love unconditionally. That is why I never got the prenatal testing the doctors like to shove down your throat. I always said that, but to be honest I never though my baby would be anything less than "perfect". We already had a totally healthy 4 year old daughter. We wanted to add a little brother or sister to the mix.
We had a plan and we thought it was a great plan....little did we know God had an even better plan for our lives! One that would change who we are and how we viewed life. He is only 6 months old as I write this. I know there are challenges I have yet to face. Battles I will need to fight. I don't care! I am in love with a boy named Preston and I will move heaven and earth for him. I was chosen. I was handpicked by God himself to be his Mommy. I view this as an honor. All children are blessings, but I received an extra special one.
I am going to commit myself to write more of our story. The story over the last 6 months and the story that has yet to be told. I might not know how it will go just yet, but I know that it is going to be a beautiful story about a boy who changed the world!
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