I finally got some work done in my garden this morning. I have really neglected it lately between being busy with appointments and just honestly, lacking motivation. But it was a cooler morning out and overcast so it was perfect outdoor weather. I spent 2hrs just picking strawberries. Yes, I have a huge patch. And that's a lot of squatting for being 8 months pregnant! haha It's a good thing my legs are in shape from bike riding. I guess I better start getting creative with all these strawberries. I still have a few I didn't use from the other day. Our freezer will be stocked with lots of jam and whole berries for smoothies too.




I then continued to weed for the next 2 1/2hrs. I'm still not quite caught up, but it looks a lot better. I was happy to see I have a lot of green tomatoes so soon I will finally have fresh tomatoes. The kids also discovered our sugar peas are coming in!! I love having a garden and all the freezing/canning I do from it.


We then went to a friends 13th birthday party at the Rec. The kids got to spend time swimming which they really enjoyed. I would've loved to have gotten in the water, but I think me floating around in a tube reading my book would've looked strange. Because that's all I felt like doing if I was getting in. My tired body wasn't up to swimming.


After we left there, we headed to my brother Mark sister in law Katies house for supper. It's always such a treat having someone else cook for me!! The kids had fun playing with their cousins and driving uncle Marks riding lawn mower around the yard. Then they played kickball w/uncle Mark, or more like chasing the ball he kicked over the house! But it was a nice evening out!


Overall, today was a pretty good day. Noah was still just as active today. Though I think he was glad I wasn't eating wasabi like I had last night. haha I had some sushi and since I love spicy food, I ate a lot of wasabi with it and he wents nuts afterwards. Either he was telling me he really liked it or he was trying to tell me to quit eating that crap!! ha I love you Noah!!!!




It's been a week of ups and downs for me. Wednesday we kept busy with 2 speech therapy appointments and other odds-n-ends. Thursday I worked cleaning 2 campers, grocery shopped, took the kids to their last swim class, etc. It felt good to stay busy and be out and about for a change.

Today we had another appointment with the specialist. The checked Noah over and he is still looking good praise God!! We finally got a good look at his full face!!! Normally he has always had a hand by his face, but today it was actually moved for a change. He has such chunky cheeks, just so sweet!!!




It was a different doctor we saw at the specialist this time. He once again said, we'll be lucky if he is born alive or only have minutes with him. This gets SO hard to hear week after week. Because they themselves said they honestly don't know what is going to happen. NO ONE but God knows how much time little Noah will have with us. I understand they don't want to get our hopes up, but I wish they wouldn't be so negative each time. He has made it this far which is further than most little ones like him.


After we were done making sure all was well, the doctor said the neonatologist at the hospital offered to meet with us to go over things. So we headed across the street to the hospital to meet with her. We showed the kids the labor/delivery room and actually sat there to talk with the doctor. Again, she reminded us we may be lucky to only have a few minutes with him. I said I realize that, but we also need to have a plan in place in case be beats the statistics and is stable. So we talked about our wishes and what we would like to have happen if he is stable after being born. There are such a wide possibility of things that could happen and I think the hardest thing is just all the unknowns yet trying to be as best prepared for all the possible scenarios. As hard as this all is, I know that whatever happens, it's in God's hand.


Specific prayer requests right now would be that labor would go well and I could avoid a c-section. I'm a VBAC so they tend to err on the side of doing a c/s if they are in doubt. I don't want to have to worry about possibly being seperated from Noah which is why I hope I can have a normal delivery. Plus, the kids plan to be there, so I know they too hope I can have a normal birth.


Also, if Noah is stable right after birth, we plan to leave the hospital as soon as possible. It would be wonderful if he could have the chance to come home with us!!!


There are obviously a lot more things we could use prayer on besides these, but it would take awhile to name them all. Just continue to keep us in your thoughts and prayers that we would feel God's peace in all we do and the decisions we make.


Yesterday (Monday) wasn't a good day. I had an OB checkup first thing in the morning. This was my first appointment with them since finding out the news. And if you remember, I was treated pretty crappy a few weeks back when I was trying to get some help to find out what all was going on. You'd think that having an appointment at 8am would mean we'd get taken back on time. Nope, it wasn't until closer to 8:30 till we were taken back and then waited another 10 minutes to finally be seen. I'm telling you, after being treated so wonderful by my midwife the last few months, dealing with this practice has just been disappointing.

She asked us if we had come up with any end of life plans or anything for Noah. I said no because no one has really given us any direction. We've been told about possible scenarios but that's been it. She told us it was the specialist who should be sitting down and doing this with us. UGH!!! All I know is someone needs to help us and soon just in case I go early. It was just overwhelming to be thinking about all the possible things that could happen and the different decisions that might need to be made. She said we need to have several different things in place since no one really knows what all will happen. So needless to say, I was in tears during this appointment. Then to top it off, as I went to leave, she handed me all the normal 34wk info sheets & a pregnancy magazine and said I realize most of this won't apply to you except the group B strep test info. :( Then why would you hand me all that??

Yeah, I left there feeling pretty crappy. I really didn't do much yesterday at all. I just felt pretty low all day after that appointment. I honestly couldn't wait for the day to be over. I spent a lot of time just laying there playing & talking to Noah. Even got a bit of some video of him morphing my stomach into goofy shapes!!

Today was a pretty busy day between speech therapy, a walmart trip (I will be SO glad when they get that place in order finally) and the kids gym & swim class. I guess it's good we had things we had to do today or I probably wouldn't have done much at all again. I found it hard to get my day started this morning. I was really thankful that my brother Brad & his wife Denise brought us supper tonight. They came over with food & ate with us and spent some time catching up. It definitely made for a bright spot in my day. I even got to snuggle my 2 month old nephew while Noah was kicking him! ha Really wish the 2 of them would be able to grow up together. I was excited when I found out we were having kids close in age figuring the cousins would be best buds. I'm just trying to remember that God sees the bigger picture in all this but it still doesn't make it any easier.

34 wks

Rainy, overcast, dreary.

Describes both the weather this morning and my mood today. I tried to go to church this morning, I really did. I got up & got dressed. But the more I started to get myself ready & the closer the time came to leaving, I just felt more anxious and just didn't feel good. I realized I just couldn't go. I am not ready to face the questions, the hugs, people asking how I'm doing. Nor could I go and sing the praise & worship songs and try to be happy. No, I'm not cursing God, but neither was up I to praising Him this morning either. I figured it's better to be honest about it then to go and fake it. I haven't been around big groups of people since finding out the news. Each time I've tried to, I get overwhelmed and can't do it. I know the kids were disappointed I couldn't go, but I was honest and just said I can't handle it right now. They seemed to understand. They all came over and said goodbye to Noah & kissed him before leaving.

While trying to work through my feelings this morning in tears, I came across a song that seemed fitting to how I am feeling today. David Crowders "All I Can Give". Which really, isn't much at all right now. I honestly don't have much to give at all. I truly am lucky I was able to get out of bed today. The feeling again of "why me" kept hitting me big time today. I realize satan is trying to get me down & depressed. I may never know why I was the one chosen to go through this. But another song I was given to listen to, in the lyrics it says "And I will praise the one who's chosen me to carry you". I sat here weeping, listening to that song, remembering that like Mary Jesus's mom, I was chosen specifically to carry Noah for whatever reason it was. Noah seems to enjoy music like I do, and maybe he had an understanding to the words, but he was kicking me while I listened as if to try and reassure me that it's all going to be ok.

And I know deep down it will be. But it was a tough morning. I can't believe I am 34wks along. Where has time gone?

This afternoon was our company picnic. I really wasn't up to going. I figured I could always leave if things got too difficult for me. I had a few tears on occasion, but it went fairly well. Thank you to those of you who came & hugged me or told me you were praying for us. I know there is nothing you can say to us, as I too wouldn't know what to say. But just knowing others are there for us and that we're not alone means a lot. The kids had a great time today!! There were games and activities for them that they just loved. Oh, and lots of food!! haha The theme for the picnic this year was a hawaiian theme. They had an upside down pineapple cake baking contest that I entered. I actually got 2nd place!! I guess the funny part in that is that I never made one before! I just researched and picked what I thought to be the best recipe, made it & hoped it would taste good!

I'm including the song & lyrics for "All I Can Give"



Lyrics David Crowder Band - All i can say lyrics

Another peek at Noah

We all woke up excited today because lucky us, we were getting another "visit" with Noah this morning!!! They are monitoring him once a week via ultrasound to make sure he is doing ok. They are looking for hydrops, which is fluid on his organs that would indicate his health is deteriorating. If Noah's health takes a turn for the worse, they will have to deliver him because his failing health could pose a risk to me. I am praying though that we won't have to worry about that at all. My little man made it this far, he is a fighter!!!

They first checked his organs and they all appeared to be doing great! YAY!!! So then came the fun part of getting to try to see his face via 3D. He is a stinker!!! He had both hands smack in front of his face. She unfortunately didn't start recording at that point so I don't have that image to share, but it was cute! So we poked at him briefly and he actually moved both hands away from his face giving us the first look at his entire face!!!! We all started cheering him on!! The doctor stood there watching us and he just grinned.

It was so great to take in his beautiful face finally. He even opened his mouth giving us a full glimpse of his adorable cleft. I admit, ever since finding out about his cleft, I was nervous about how he may look. But each time I see his cleft, and especially after seeing him move his mouth today, I have fallen in love with that precious part of him. I think in part because it was MY son that was chosen by our Creator to be the one to have been given such a unique body. I may never know why, but I take comfort in the fact that it wasn't by accident, even though it's hard to comprehend that by human standards.

So we enjoyed our time with him, watching him move around. It was neat how I could tell the kids I feel him moving and they could see on the screen just which part of him was moving. I am thankful that they record every ultrasound for us to be able to enjoy whenever we want. In fact, every morning after waking up and making sure he is still moving, I go on my computer and pull up some video clips of Noah and just sit there watching the videos, talking to him as I rub my belly.

The kids talk to him quite a lot lately. They seem to be doing ok. Hannah hasn't cried on my belly in a few days, though I can tell they are all still clingy with me. Well, not me but Noah! They really don't like to be seperated from me right now. Anytime they walk by me, someone is coming over and hugging my belly and talking to Noah. If I am sitting down, someone is right there laying on him, or poking at my belly talking to him. Even though they have felt him move for several months, each movement they feel is still so special to them. Their little faces still get excited when they feel his kicks or hiccups (and he hiccups a LOT!!!) You'd think by their excitement it was the first time they felt him!!! Each night, they come over and rub my belly, kiss it and say goodnight to Noah & that they love him. It is just so sweet!!!

I put together some more video from our visit today. The first part is a profile of his knee, leg & foot. You can see him flexing his foot and kicking me!!! Then it goes into his full face!! At the begining, you can see him open his mouth. Also, he occasionally opens his eyes. When you can see both his eyes, it's obvious it's his left eye that has a cataract. He doesn't give us much time to see his full face until he brings up his favorite left arm. But you can see him moving it and his hand. At the very end of the video, you can see where he gives us another adorable smile!!! Like he knows we are watching him. Makes me think he must smile a lot because we've been able to capture it twice this week. I'm soaking up all those smiles now while I can!!!

We are truly taking things one day at a time. I let my mind wander to the days ahead at one point and it just overwhelmed me to tears. I just have to trust that God will get us through whatever lies ahead, when the time comes. Right now, I just need to be thankful for my beautiful boy who is constantly reminding my by kicking my ribs and bladder, that yes, he is still healthy & strong & full of life!!! Keep those thoughts & prayers coming please!!! They are truly what has been sustaining us each day.


video

Noah's first Video!!!

Today has been a fairly good day for us. I know it's only because all of you have been lifting us up in prayer and thinking about us! And I am very grateful for that!!! Today was the last day I had my little guy "J" that I babysit full time for, as his mom went on maternity leave. She is due 2 wks before me. The kids were sad to see him leave but I'm sure we'll be in touch. :-) They said they can't wait till both kiddos come back later this summer. Those of you that know the kids, know they just LOVE little ones! We fostered for awhile and they were always so good with the little ones. And even though it's been a long time since the they've left, they still pray for them and talk about them.

This afternoon I went and cleaned a camper and even started working on portfolios a bit!! It felt good to get something accomplished and honestly, this beautiful day helped my mood a lot. It's a lot harder to be sad when it's sunny and 80 out!!


But forget about my day, it's about time I finally posted a video of Noah!!!! If you aren't used to "reading" an ultrasound, let me try to explain it a little and set it up for you so hopefully you can see him better. The picture shows his left arm up in front of his face with his hand near his forehead. The grayish oval is his left eye. Below that, you can see a little bit of his left notril. That "L" looking line coming off his nose on his face his is cleft lip with his lower lip the line below that. You'll see in the video the tech moved her white mouse to point out the cleft, right after that the screen goes black for second. After that happens, pay attention. Noah smiles!!!!!! It's just so amazing to see!!!! He is just so perfect & innocent!! As always, he was active today, bouncing all over and had the hiccups several times throughout the day. Today is his 235th day of life!!!!



video

Just wow....

I honestly didn't think I'd be posting today. Just because I didn't think I'd really have anything worthwhile to say (yes, those that know me, know I ALWAYS have something to say, huh? haha) But it was actually just a typical Wednesday. Speech therapy in at Schreiber Pediatric, then right home for the deaf & hard of hearing teacher. I know I keep mentioning it, but my kids are my rock! I was about 5 minutes from home & Sarah called me just to tell me that she was heating up some food for me to eat when I got home (at 10:30am). Bless her heart, I certainly wasn't hungry but she was making sure I was eating. The kids once again tended the garden for me and made a huge salad from their pickings for supper. And yes, I did eat a pile of it. It always tastes better when someone else preps it. :-)

I was pleasantly awakened by Noah having rapid hiccups this morning!!! I admit, anytime I wake up in the middle of the night or morning, the first thing I do is lay there with my hands on my stomach, wondering what he is up to. I breathed a small prayer, thankful my son was awake!!!

I can't even being to express my gratitude to all of you for the support you have shown us!!!! It has brought me to tears many times the last few days. I wish I could acknowledge each & every message, facebook post, etc that I see. But please know this, even if I can't respond, I am reading each and every one, multiple times even!!!!! And I am so thankful for all of them!! They are what has been getting me through each hour lately.

Which brings me to what especially touched me today. I was contacted by numerous people today, all sharing with me a part of their life that has been affecting them lately. While each had unique circumstances, the similarity in each story was that they realized because of Noah, that what they thought was a big deal, really isn't. It made each of them think about what is truly important in life.

It isn't how much money you have, it isn't what material things you may have or be able to give to your children, nor the great things you may have accomplished in life. What's important is the time you spend with your family, taking time to appreciate the little things. Work will always be there, but your children may not. Is it really worth getting upset with them when they try to delay going to bed just because they want to stay up with you just 5 minutes longer? It's about taking the time to stop what you're doing when they just want to play a game with you. It's about seeing their little faces light up because you gave them a compliment or praised them on something they did, no matter how insignificant it may seem to you. It's about taking the time to give them that extra hug or kiss or high 5! All these things I won't have the chance to do with Noah that I so long for.

I don't for a second believe it was a coincidence these people shared with me their stories today. I believe God was giving me a glimpse of how little Noahs life has touched many others beyond what I could've ever imagined. He was comforting me & showing me that yes, there IS a purpose for what Noah and our family are going through, as hard as it may be for us. I kind've imagine this is a little what God might've felt like by sacrificing his son Jesus for the sake of others. If the reason for Noahs short life is to bring someone, even just 1 person closer to Jesus, than all this was worth while (but don't get me wrong though, certainly not easy and definitely NOT the road I would've chosen for him or us!) Noah may accomplish far more in his short life than someone who has lived 99 years!

We still have a tough road ahead and hard days before us and I know it's not going to be easy. But I am thankful to have been shown just a little bit of what Noah's purpose might hold. I hope I'm able to hold onto that during the difficult days to come. Noah, you are loved more than you'll ever know!!!!!!!

It's a........

I think all of us woke up with an extra bounce in our step today because TODAY was the day we were finding out if we were having another son or daughter. I admit, since finding out the news, today was finally one of my better days because of the anticipation. So I was just enjoying being able to smile and actually mean it. See, we've never found out the gender of any of our kids until their birth, so this was something extra special for us. We wanted to start calling baby by his or her name. The kids all seemed to be full of energy this morning and kept asking what time our appointment was. It made me feel better seeing them full of smiles and no tears for a change.

I'm telling you, I wouldn't know what I'd do without my awesome kids!! Backing up to this past weekend as I forgot to mention it, but my garden has really taken off and is producing now. The kids discovered on Saturday that we have strawberries ripe already!! That's 5wks earlier than last year, I could hardly believe it!! So anyway, I'm not sure what inspired them to do so this morning because I didn't ask them to, but next thing I know, the kids are in the house showing me all the things they went out to pick from the garden this morning!!! They had a couple bowls of big red strawberries, a pile of spinach, some onions and some radishes. YUM!!! It was drizzling when they were out picking but they didn't seem to care. I should've snapped a pic of the mud they brought in with them. Thank goodness for hardwood floors! But ya know what, before I had even seen the mud, they were already out there cleaning the floor! Seriously, I am so blessed with great kids and am so very thankful for them.

We've been trying to keep things as normal as possible, mainly for the kids sake (but I'm sure it's also good for me). The twins had their deaf & hard of hearing teacher here this morning. We got a little bit of housework done. We are officially finished with schooling for the year but I still need to work on getting portfolios done and our evaluation. I'm kicking myself that I wasn't more organized this year. At the end of each school year, I vow to work each month on portfolios so I don't get behind for the next school year. HA, it didn't happen once again this year. Maybe next year I'll be more organized..... ;-) Yeah, how about ya'll ask me in September how that's going.

Kevin got home about 1:20 from work. We were all chomping at the bit to get going. We arrived at the specialist at 2pm. They had us scheduled to have a consult before the ultrasound. It was a bittersweet appointment. I assured her that the children are very aware of everything and that it was fine to talk about anything with them there. I said we are in this together as a family. She did wonderful in talking to us. Kim was the one who called me yesterday with the official news and I am just so thankful for her compassion and care for us. She had actually given me her personal cell phone number yesterday and told me to call at any time if I had questions.

She went over the results once again with us. We were soberly reminded how fortunate I've been to have carried our baby as long as I have. She said a majority of women miscarry early on due to the Trisomy 13. Unfortunately, she had to tell us that each day I carry our precious child from here forward is considered very good. Our baby could die at any time. She said if I am able to deliver him alive, we will be considered lucky. So I'm asking all of you to pray that we can beat the odds and show the doctors just how big our God is. We would love for this baby to come out screaming and kicking, showing the world just how strong he/she is!!! Our prayer request at this time is that we will be given time, however long, to spend with our baby alive.

I was reminded though to cherish each kick & hiccup we feel. The kids spend a good part of their days lately just feeling the baby move. It's still hard for me to comprehend how sick the baby is. Just today, this wee one has beat me up!!! Several times I've jumped out of my seat due to movement almost being a little painful. And the hiccups....the kids can't believe how strong they feel from the outside. But I love it!!! Maybe that's part of the reason I am not sleeping much lately. I want to make the most of my time with my baby, just enjoying the movement & playing with him/her. I love just laying there rubbing babys back and poking at the hands and feet, feeling them intentionally kick back at me. Late at night, it's just me and baby bonding and playing. I haven't been able to fall asleep before midnight since last Friday. It's just our special time!!!

We discussed more things and she talked to the kids also. I know we have a lot more decisions and things to talk about in the coming days, but she finally got down to the reason we were there. She asked if we wanted her to tell us the gender (from the amnio results) or if we wanted to wait until the ultrasound. We looked at the kids and said it was their choice. They all grinned and said let's do the ultrasound!!! So we went over to the room. I brought the camera along and we had some pics taken of us all together as we were finding out. Baby is still head down and STILL has that one hand tucked right by it's face. In every ultrasound we've done this last month, that same arm and hand have been there. So we looked at the face and finally the sonographer said oh yeah, you want to know what the baby is huh?? haha So she went to my upper belly where babys butt is at.......

and we all held our breath.....

baby had no problem showing us the goods.....

IT'S A BOY!!!!!!

The kids cheered!!! I started bawling!! We've been wanting another son for such a long time. I think Erik was just one big grin. The boy has been wanting a brother for years!!!! She went back up to his face and poked at him to try to get him to move his arm. He actually moved it and we got a better look at his face. He has got little chubby cheeks. His cleft encompasses a lot of his face/nose but he looks beautiful with it. He was created specifically to have that....why, we may never know. But God doesn't make mistakes. We saw him blink his eyes, it was amazing. And then.....in that moment....he SMILED!!!!! I just wept, it was so precious!!!! My baby smiled just for us. It was amazing and I was thanking God for that opportunity to see him move, see his smile. The tech also showed us that he has hair!!! Just like his older siblings, they were all born with hair. His cheeks reminded me of Erik & Hannahs when they were born. I can't wait to kiss his little soft cheeks!! I have pictures & video that I will try to post in the coming days.

The tech was wonderful. She was willing to take as much time as we wanted to see him. We asked her questions again about his "special" body. I was envisioning a ton of intestines outside his body when in reality she told us it's only about 2 centimeters in a membrane. She did tell us his heart has a VSD, a hole in his heart, but that it was actually a good thing where his hole was at and that it's his left side that is smaller. It allows his heart to work better. Some babys with Trisomy 13 actually have a 6th digit on their hands and feet, but it looks like he has 5 on each. I asked her about how big he is about now. Most of you know our kids are pretty small in general. Even when I carried 2 & 3wks late, Hannah & Erik were still only 7lb 1 oz (both). She said as of Friday, he was measuring 2lbs 13oz. Granted, it's just an estimate. She said both the fact that we have smaller babies and the T 13, is the reason he is smaller. But who knows, he still may grow some more, we don't know yet. And if he doesn't, we are just looking forward to snuggling his tiny little self!!

I'M HAVING A SON!!!!!!!

The kids wanted to celebrate their brother tonight so we got some pizza and a movie and hung out together in honor of our son/brother. They thought it was just the greatest thing!!!!

I can't begin to thank everyone for their emails, messages, phone calls, random texts throughout the day just letting me know you are thinking about us and caring. Those notes are what is getting me through my days at times. Thank you also for the prayers! I've experianced moments of peace and I know it's only through the faith and prayers of others that I feel that.

Thank you Jesus for my son......Noah Alexander!!!!!!!!

It's confirmed....

I think by now I should just get used to the fact that I can't sleep past 5am. Yup, once again I was awake by then. Maybe I should just start going to the gym early mornings like I used to. At least it would put that time to good use! The twins were excited this morning for their special day away. I was glad it wasn't raining for their sake. I found it hard to get into the swing of things this morning. Most of the day, I felt like I was in a fog, just going through the motions. Sometimes holding back tears, other times just bawling.

After we got home from dropping the girls off, Hannah & Erik wanted me to play games with them. I certainly wasn't up to it. I also needed to play catch up on housework I left sit all weekend while I recooped from the amnio. But I knew it would mean a lot to them if I did. Housework will always been there, my kids begging for my attention won't be so they of course won. Thankfully they didn't seem to notice my heart wasn't into it. They were just glad to be sitting on the floor playing together.

Hannah is still stuck to my side again today. Anytime I'm sitting down, she is right by my side holding my belly or laying on there poking at the baby. She has napped for the last 2 afternoons and she usually never sleeps. She seems a bit drained emotionally.

I got the call about 1:30 from the specialist. The lady who spoke to me was wonderful. She was so compassionate and understanding, she softened the blow while taking in this horrible news.


Yes, the baby does indeed have Trisomy 13.

She was very quick to reassure us that we did nothing to cause this and that it wasn't genetic. She also stated that right now the baby was in no distress. That most issues only will occur once our precious one is born. She said my body must be a tough one to have carried my baby for so long as a lot of people miscarry early on when there is a chromosal abnormality. Considering I carried twins full term and my other children 2 & 3 wks late, yup, my body is a tough one when it comes to bearing children. I told her that while we normally don't find the gender out until birth, we decided we wanted to know as soon as possible what our little one was. She was able to schedule us for tomorrow (Tuesday) for another ultrasound. I was due for one on Friday but she moved it up. If we can't tell by u/s, they already know what the gender is from the amnio. So either way, tomorrow as a family we will find out if we are having a boy or girl!!!! This really cheered the kids up. They already know the names we chose, so they are excited to finally call the baby by name and tell everyone else. We figured we wanted to make the most of the time left with our baby and also wanted to prepare things as much as possible before the birth. I can't even bring myself to put into words what I'm referring to yet by that. :(

The girls all asked if we are still going to work on the nursery. Just last week we finally got the paint, the stencil for the mural and the bedding. I said I don't see why not. They have been looking forward to helping with that room for so long. I admit, it's going to be bittersweet but we might as well go forward with it. If we're blessed enough to have time with the baby at home, then by golly the baby needs to have a nursery ready and waiting!!

Sarah & Susan had a great time at their track and field day. They thought it was so neat to meet other children like them. And of course, riding a school bus was a thrill for them!! They had a half an hour drive to Penn State York campus and drove over the Susquehanna River which seemed to be a highlight for them. It was too cute, they brought home some little goodies for Hannah & Erik. I've noticed before with things, that if one of them does something different from the others, they still remember their siblings and try to bring something back for them.

I decided to go work tonight for a little bit just to get out. For those that don't know, I clean campers & motor homes as needed. It was actually relaxing, listening to music just cleaning away. It kept my mind busy for a change which I really needed. We spent some time with friends right after that for some much needed laughs!!!

When we came home, both Sarah & Hannah showed me that they are writing letters to the baby to read to him/her when they are born. I'm too choked up to publish them here right now, but maybe tomorrow I will share them with you all.
I was up again this morning around 5am. And that was after only falling asleep before 1am. I guess I should consider myself lucky I slept that much. My insomnia has gotten worse. The kids seemed to be ok this morning when they woke up. I wasn't sure what to expect after they had a chance to think on things. We decided to stay home from church today. Partly because I didn't think I could handle being around a crowd of people right now. And while Kevin thought about taking the kids, I felt it best that we just spend the day together as a family. I had a feeling today was going to be the last somewhat "normal" day for quite a long time. We are starting to tell more people about the news and I know in coming days & weeks, we are going to be kept busy with many doctor appointments and who knows what else. I wanted one last day of calm before the storm. I wanted badly to just go back in time to about 2wks ago. I really tried to do my best today for the kids sake.

I am still on limited activity until Monday. Which has been SO hard for me!!! It was a beautiful day and I wanted nothing more than to get on my bike and ride for many miles just to get away from it all. But I couldn't. So I tried to make the best of it just resting while Kevin played games with the kids this morning. It was so sweet, at one point Erik went out to the kitchen to prepare a surprise for the girls. Yesterday, the kids spent some of their allowance money at walmart and he had bought some cookies. My sweet son made a pile of 3 of his cookies for each of his sisters and had a glass of milk for each of them then called them to the kitchen for their surprise. Made this momma so proud at how kind and considerate he was!!! It just brought tears to my eyes, it was so random of him and it seemed to make him so happy to share. Thank you Lord for this little ray of sunshine during such a dark time.

We had a gift card so we headed to Chili's for lunch with a friend. Figured it would be good to try to get out again. I felt a little better this time compared to yesterday. But I still could barely eat. As of even now tonight, I only ate half a chicken salad today and that was at Chili's. Every bite makes me nauseous. I noticed while we were out that Hannah is really clinging to me. She seems to be taking this the hardest out of the kids. I just cuddled her during lunch.

Once we got home she snuggled up to me, hugging my belly. She spent most of the afternoon laying there feeling the baby move. She ate a little bit for supper and shortly after that, she came over and buried her face on my belly and started weeping again. I felt helpless. I sat there once again just crying with her. She kept saying she hopes the baby doesn't die and that the doctors can fix the baby. Dear Jesus, what am I supposed to say?? I held her and wiped both our tears away and told her that the baby is still living. That we need to be thankful for that and all we can do is pray and take 1 day at a time. I reminded her that we don't know what the future holds or what may happen with the baby, but that we are grateful for each day the baby is with us. I said the baby knows when she is sitting there because all afternoon, the baby kept kicking at Hannahs hand or arm, reminding her that the baby loves her and can hear her. That made her smile.

All 3 girls spent about 2 hours together tonight cuddled up with me, all poking at my belly. They got such a laugh out of it because with each poke and prod, the baby would respond and move or kick back at them. Which makes this all the more difficult. The baby seems so "normal" and seems to respond to our movement and voices. I could tell it was hard for the girls to go to bed tonight. They said goodnight and went to their rooms, all to come out at different times, not saying a word but coming over and hugging or kissing my belly. This happened several times, but I would never turn them away. I want them to be able to love on the baby whenever or however they want.

Tomorrow is Monday. I admit I'm dreading being forced back into routine. I have no choice but to try to function and get through the week. I'm expecting a call from the specialist tomorrow or Tuesday with the amnio results. The twins are excited about tomorrow, which I'm thankful for. They are participating in the Optimistic Olympics, which is a track & field sort've thing for deaf & hard of hearing children through the IU 13. I think what they are most excited about is riding the school bus!! haha I guess for a homeschooler, riding a bus is a big deal. This is a big step for me, dropping them off with their therapist and letting them go for the day. I admit I'm a little nervous. I'm so used to doing everything with them. But I think this will be a neat experiance for them, being able to see many other children like them (hard of hearing & wearing hearing aids). And I know they have each other. I am going to send a camera with them to see if they want to capture any pics of their time away. Pray for their safety (and that I won't worry too much!!)
I managed to get a couple hours of sleep last night, but was up a little after 5am. I wish so bad I didn't have to take it easy today. I want to keep myself busy so I don't have to think. I made myself get up & shower & get dressed but I went back to sit in bed to watch tv & surf the net. I didn't know what to do next. Where do you go from here? There is absolutely nothing I can do, I feel so helpless. Everyone always anxiously anticipates and counts down until their due date.

I had been until yesterday.

Now I feel like my due date is like looking at a death sentence. I don't want that date to come. Ever. If the baby is safe as long as I'm carrying it, then I want the baby to stay right there and never come out. I can at least continue to feel him/her move and know he/she is ok. I don't care if I'm uncomfortable. I would stay pregnant forever as long as that kept my baby alive.


The kids wanted to go to walmart. I didn't want to go anywhere, but I knew I should try getting out, hoping that would make me feel better. I was wrong. Being there was awful. Seeing people smiling when I was dying inside just didn't seem fair. There seemed to be tons of babies around also. Walking past the baby section knowing that I might not be shopping there or buying diapers was hard. I just wanted out of that place. When we got home, I crawled right back into bed and cried.

I thankfully fell asleep for a nap. I woke up hoping it was later in the day. I was disappointed to find I only slept 45 minutes.

I was able to finally eat a little at suppertime, but only because I knew I had to. The thought of food just turns my stomach right now. I have no appetite. Hannah prayed before supper and prayed for the baby saying that she hopes when the baby is born that the doctors can fix whatever is wrong with the baby. I sat there crying. Oh my sweet daughter, if you only knew.

The kids have been aware that the baby has some problems but they don't know yet that the baby might not live. We knew we needed to soon tell them. We figured we'd light a fire outside and sit around making smores and see where conversation led.

They got talking about the baby and asking what all was wrong. So I started describing in detail what all the doctor told us. We've always been an open family and the kids are pretty well rounded so I knew they would be able to handle the info. The seemed to really understand what all we told them based on their questions they asked and what they were saying. We then said that we don't know what all is going to happen but that there is a chance that because of all the issues the baby has, that the baby might not live. Erik said well I guess it was a waste to get all that stuff for the baby. The poor boy, he definitely understood what was going on. Sarah with such confidence said that there is a reason this is all happening even if we don't know why. Oh to have the faith of a child!!! We continued to sit there for quite awhile just talking about it all, talking about Heaven and how the baby will have a new and perfect body when he/she gets there. The kids seemed to really handle everything well.

It was getting later so we headed in. We certainly were not pushing the kids to go to bed and just letting them take the lead after this emotional evening. As they were getting ready for bed, Hannah came & said goodnight to me and she choked up and lost it. I picked her up and rocked her while she just wept in my arms with her little her hand on my belly. I sat and cried with her. She just kept saying she doesn't want the baby to die, that she wants us to have a baby in our home. It broke my heart seeing her emotions so raw. What is there to possibly say to take away her pain? She cried until she could cry no more and we just sat there talking. Meanwhile Kevin was with Sarah who shed a few tears also. My poor kids are just so young to be facing something so big.

My worst fears come true

I don't even know how to put this day into writing. It still seems so unreal, a nightmare. Every parents worse fear.

We dropped the kids off at a friends house and went to the specialist for the appointment which was at 9:30. My stomach was a bundle of knots today, I could barely drink some juice just to take my vitamin. Of course, we were stuck waiting until about 10:10 when we were finally taken back. The sonographer was very nice. She explained different things she was doing such as what part of the body she was measuring, etc. She did say she saw the cleft of the lip and that it was on both sides and that unfortunately the baby had a cleft palate also. As she continued her exam of the baby, I noticed she was spending a lot of time on the babys heart. I mean a LOT. I knew then that there was something else wrong. When she was done, she said she was going to go give the doctor the images and that she wanted him to go over a few things himself because she saw several things she was concerned about.

SEVERAL things??!! Oh dear god please no!!!

I didn't know what to think in those agnozing minutes as we waited for the doctor to come in. He finally came in and introduced himself and said he wanted to take another look. He was looking at the babys head, heart and abdomen. Then he started explaining what he saw. I'll never forget hearing what he said for as long as I live.

He said he was seeing several things that were wrong with the baby. He said the brain which is normally symmetrical and you can clearly see a line down the middle.....well, the babys brain is all blended together and you can't make out the different parts as well as there is fluid on the brain. He said the one eye is smaller than the other and there appears to be a cataract or something on that eye. He confirmed the bilateral cleft lip & palate. He said the one side of the babys heart is very small. Some of the babys intestines are outside the abdomen in a sack. He also said the baby is a month behind in size & is very small.

I just laid there speechless as I looked at my precious baby on the screen. In those seconds I felt my world turn upside down. This can't possibly be happening.

As if that wasn't bad enough, the doctor continued which such sympathy that I knew there was more.

He said we need to take things 1 step at a time but that he needs to let us know that with all he is seeing, that the survivability of the baby is in question. He said if he had to guess without further testing based on the brain alone, that the baby has what's called Trisomy 13. A chromosomal abnormality. Nothing geneticly inheritated from us nor nothing we did to cause this. He said if we wanted an amniocentisis, we could have one to offer us further answers as to what may be going on. We didn't even hesitate. We knew we wanted to know everything possible about our baby in order to be best prepared.

As I laid there waiting for them to prep for the amnio, I tried to process everything the doctor had been saying. I just couldn't get passed the fact that our baby might die. This tiny little one that I have felt move in me since I was about 9/10wks pregnant, whose kicks and hiccups are SO strong, who kicks back at me when I sit there poking at him/her.....may not survive. I just couldn't process it.

The amnio went well. It was no more uncomfortable than having blood drawn. The staff were all so kind in trying to comfort us. Because of having the amnio, the doctor said I had to take it easy all weekend. He briefly gave us a run down of the possible scenarios in the coming weeks, but that until we knew more what was going on, it was impossible to figure out yet what all was going to happen.

He said if they think the baby will survive birth, they have to figure out if a natural birth or a c-section is the best way to go. He also said depending on the level of the babys needs, I may have to deliver at a bigger hospital like Hershey. I was also told they are going to have to follow me & the baby closely now. There is a chance the baby could take a turn for the worse & get sick thus putting me in jeporady. If that happens, they will have to deliver the baby immediately.

We walked out of that office and just shook our heads asking did that all just really happen? How did we go from a little over a week ago, happily planning for a homebirth, talking about vacation with the baby to now wondering if our baby is going to even live? My biggest concern was how the kids were going to handle all this. They have been beyond thrilled for this baby, they've been involved from the begining. From the first ultrasound, to hearing the heartbeat for the first time to anticipating being present for the birth. Sarah just bought the baby an outfit just last week with her own money. It's bad enough the pain I was feeling but it hurt me even more knowing the pain the kids were going to feel. I wanted nothing more than to protect them from such heartache.

I still feel like I'm at a loss for words. I can't express the thoughts going through my head. I don't understand why God would allow such an innocent little baby to go through all this, knowing the baby won't live. Why let us bond with this baby all these months, making plans & dreams for this little life, only to take the baby from us after it's born. WHY!!?!?
It's finally Thursday, the day before our big appointment tomorrow. This week has just been absolutely dragging. Every minute that passes seems like an hour. I can barely bring myself to eat today. I'm feeling so nervous about the ultrasound tomorrow. I just can't shake this feeling of dread I have.


I'm continuing to research how best to breastfeed if the baby has a cleft palate. Found info on a palate obdurator, which is a plate that is made to fit on the roof of the babies mouth to create a seal. If that's not an option, I could also use an SNS, a supplemental nursing system. I would pump milk then put it into a feeder than runs a tube over my nipple. Basically, the baby would think it's nursing but since it can't create a seal to nurse properly, the milk would go into the babies mouth via gravity. It's a lot more work but it would be worth it for both of us to still have that special bond. I'm still holding a little hope that the baby only has the cleft lip & that the palate is in tact.
I woke up about 3:30 this morning. I was lucky to even get a few hours sleep as I had been anticipating or rather dreading this doctor appointment. We had a busy day ahead of us and got prepared to be away most of the day as after the doctor appointment, we had our homeschool co-op track & field day. So I packed a lunch and got everything together that we would need for the day. We left the house around 9am as the appointment was at 9:30.

After the way I was treated by the receptionist on Friday, I wasn't sure what to expect today. Sadly, I was very disappointed. We were taken back by the nurse who did all the usual things but she didn't say much. When the doctor came in he too didn't say a whole lot at all. In fact, he had the nerve to ask if I even had prenatal care & he wondered why I was transferring there. I had to remind him that I had been their patient the first 17wks of this pregnancy and then had gone elsewhere to have a homebirth. And that the reason I was coming back was because we had saw the baby had a cleft lip and were looking for help. Again, he didn't say anything, didn't try to alleviate my fears or reassure us or anything. All he said was that I needed to have a level 2 ultrasound and that they would try to get me in this week yet. And then he left. I walked out of that office not feeling any better than when I had walked in.



We headed to the park where we were having track and field day. It was nice to see my friends and be surrounded by so many who cared and were asking how we were doing. I wish I had had answers, but I still didn't. The kids loved seeing all their friends and hanging out with them since it had been 2wks since they last saw them. Hard to believe co-op is done for this school year! I wish I could've watched my kids in all their events but all of us moms help in different areas. I did quick try to make a dash to snap a photo of the kids doing one of their events. I was proud of how well they each did.



After we left there, I got a phone call saying they got my ultrasound scheduled but it was over a week till they could get me in. My heart sank. I knew I couldn't endure that length of time waiting for more answers. So as soon as I got home, I started making phone calls to find another place to get seen sooner. When I called the office in Harrisburg (sister office to where I was scheduled) they just saw a cancellation open up for this Friday at the Litiz office. Thank the Lord!!! Friday still seems like an eternity away, but much better than waiting until next week.

Mothers Day

Today I was greeted by my children as I laid in bed. They gave me little gifts they bought with their own money and handmade cards. I am truly blessed with the most sweetest, compassionate children. They reminded me just how much I truly have to be thankful for and how much God has blessed me by giving me such great kids. I can only hope this little baby will follow in their footsteps. We decided to just spend the day at home as a family. I had a mix of emotions throughout the day. I was thankful for all that I had yet I couldn't help but be scared of the near future wondering what was in store for us and the baby. I still can't shake the feeling that there is more beyond the cleft that we are dealing with.


Kevin & the kids made me a wonderful late lunch. Steaks, veggie kabobs & marinated asparagus over charcoal. As well as homemade oven fries. They know me....I'm not one for gifts or frills. I love nothing more than something homemade that they took the time to prepare or something from the heart. That means a lot more to me than something store bought.


I am also really thankful for the great friends who I've been blessed with. My homeschool co-op has been such a tremendous support through some tough things we've gone through these last several years.
I managed to get a few hours sleep last night. I got up at 4:40 to start setting up for the yard sale. I was glad I had something to do today to occupy myself. The yard sale went great, except for that brief downpour we had. It's funny how you never notice certain things until you are faced with dealing with them yourself. I bet I saw at least 6 different people who I could tell were born with cleft issues. What are the chances of seeing so many people like that right after finding out your own child will have one?? I admit, seeing those people made me tear up. I mean, I could see they are fine. But knowing what they had to go through, probably several surgeries and who knows what else, was hard. Knowing that my baby was going to face those same things in the coming months and years.


On another note, we went through about 310 hot dogs at our sale today! WOW!! In addition to that, we sold completely out of 4 cases of soda and a case of water. It was a long day on my feet though.
I called the OB this morning to get an appointment. When I finally got ahold of the receptionist I was shocked at how I was treated. I told her why I needed an appointment and instead of hearing a kind or sympathetic word, I was questioned as to why I didn't have a 20wk ultrasound. I was then told I would have to be treated as a new patient since I transferred out of their practice at 17wks pregnant and that she couldn't see me until June. I told her that I needed seen now. After being on hold for awhile, she came back very rudely and said fine, I can come in on Monday but that I better have my records from my midwife or the doctor won't see me. I got off the phone and bawled.


Today was spent getting ready for our annual development yard sale, but my heart just wasn't in it like previous years. Once again, my sweet children were such a huge help. They took care of doing a lot of the work on their own. I don't know what I would do without them!! I got together the bare minimum of things that I had to in between doing more research online about the cleft lip. I was disheartened to read that there was a good chance the palate was involved. Because that meant I may not be able to breastfeed the baby, which is a huge deal to me. So I started looking up ways I'd be able to breastfeed a baby with a cleft lip/palate and I was determined to do whatever it took to make sure my baby got breastmilk however possible.

The day it all changed

Today we were scheduled for our 2nd try at a 3D ultrasound by Proview Ultrasound. The first time we tried a few weeks ago, baby was being a stinker and had both of it's legs straight in front of his/her face and the only good shot we got was of the one foot. So we were anxiously awaiting todays appointment and hoping that the baby would finally be a little more cooperative. We were so excited to finally get a peek at that adorable face.

When we first started with the ultrasound, the baby yet again had a little fist and foot drawn right up in front of it's tiny nose & mouth. I was doing all sorts of poking & prodding to try to get the wee one to give us a peek. Baby had no problem wiggling that foot back at me as I was poking at it. I laid there waiting & hoping that we could just get a brief glimpse. Then just like that, out of no where, baby moved both the fist & hand at the same time, almost as if to say ok, now you may see me and my heart about stopped. It was painfully obvious to even my untrained eye that the mouth didn't look right. I knew in that second I saw a cleft lip. I didn't say anything in hopes that maybe I just saw it all wrong. Time seemed to stop. My cousin-in-law was doing the ultrasound for us and he had switched the view right after I thought I saw the cleft and he started asking me questions. I stopped him and said "you saw a cleft too, didn't you?" When he said yes, I knew that my eyes hadn't been tricking me and I just started crying. It just broke my heart that my poor baby had something physically wrong. He asked if we wanted to continue I said of course. My baby is beautiful no matter what and I still wanted to be able to see every inch of his/her precious face.

The ride home afterwards was not at all how I imagined it would've been earlier that day. I just wept like I hadn't done in such a long time. I started analyzing everything I had done in early pregnancy, wondering if I did something to cause this. The kids, bless their hearts were amazing (they were with us for the ultrasound). We explained to them what we saw and what it would mean for the baby. They seemed to understand far more than I would've expected. In fact, Sarah had such a positive attitude and said that we should study about cleft lip/palate for school in order to help the baby better. They were certainly my rock this evening.

I cried until I didn't think I could cry anymore then I got on the internet and started researching. No sense in thinking about the "why" at this point but about where do we go from here. We talked about how this changes many things. We had been planning on a home birth up until this point but we felt since we didn't know what all we may be dealing with that we should switch back to the OB and a hospital birth. Which just pained me deeply as I was so looking forward to having a home birth.

I also shared my deepest fear with Kevin. I said you realize when there is one birth defect, that the chances of finding more is higher. He of course was thinking positively and said not to worry about that right now. We had immediately told a few people what we saw tonight as we knew we needed the prayers & support. And everyone said not to worry, a cleft now-a-days can be taken care of with no problem and that their little face will look amazing.

But I still have that nagging fear of the unknown and can't help but wonder if there is more that we haven't yet seen.