20perfectdays

Life after NICU and losing my baby girl

Two appointments later…

Ok, I know I’m a day late on updating everyone. Sorry. This week has been so torturous, I haven’t been sleeping very much at all. Kinda makes you REALLY tired when you can finally relax and let your guard down for a bit. Even if its just a smidge. But I’m getting ahead of everything.

Tuesday. Adam’s 30th birthday. We had a regular OB appointment in Little Falls. Didn’t expect much since she’s not the one we really wanted to talk to about baby’s risk. They updated their system (AGAIN!) and now they can easily share patient files between the two clinics. Believe me, this is AWESOME news. Until you’ve had to have your referrals sent 5 times and your files sent 3 times, you might not get how good it is to have such a system. BUT anyway, the dr did her routine measure, listen, and ask us what we were thinking for delivery options, when we would transfer to St Cloud, who we would go with, and why we turned down the guy she had mentioned with our pregnancy with Bailey (dude, that dr she referred us to was mean, rough, demeaning to me, and treated me like I was incredibly stupid and inexperienced. He didn’t care the difference in our case from a typical, easy peasy, no complications birth. Not someone I would go to at all if I could help it. I won’t even mention him. All I will say is I will deliver all my kids with Stocker because he may be a jerk to the nurses (they really don’t deserve it, but they take it in stride), but he’s SO gentle, real, and incredibly calm. We have to remind him of details that make us different, but he’s not over bearing and doesn’t sugar coat at the same time. When you have had a super rare baby, you don’t take sugar coating anymore. You have seen too much and know that bad does happen to good people.

Everything was looking good with baby, her heartbeat was in the 150s, right where it should be, my fundal height is right on for where it should be, and I’ll be doing my gestational diabetes test next month, at my last appointment with her.

The next few days were far harder to get through. The build up to a trying appointment that could be a HUGE deal is enough to cause you to only get a lone hour of sleep before needing to function again. Feeling the tears as you explain you already did the easy appointment on tuesday, the tough one will be friday.

Late night friday, Adam and I had a talk about what we each wanted to say, how we would handle resistance, and how we would push for the truth, for what we wanted. We both agreed we wanted to basically pull them out of their genetic counselor shoes and put them in the parent shoes. The shoes where you have already been in these offices, talking to these people, learning so much about genetics, you could educate a science teacher. Learning all the things that could go wrong vs what could go right. Finding your daughter has a heart defect and being told that a single surgery before 9 months old and she would go on with life, just like any other kid, then having things go horribly wrong and having several drs crowd around your daughter, scratching their head because the defect they found in utero isn’t what is causing these problems. Then, having to lay her to rest after a long, hard battle that you NEVER pictured you would endure. Then having a rainbow pregnancy, riddled with fear of a repeat and finding someone dropped the ball and you get answers you so deperately needed a matter of a week before delivery. Then finding you are pregnant again a year later. One screening comes back with AWESOME results, only to have another screening come back and contradict the first one. Luckily, we didn’t need to go into battle like that.

We showed up early for the appointment at 1:30, but didn’t actually go back until about 2. Yea, not amused! But, the tech we had was very quick, baby girl was cooperating very well, and she was able to get about an hour worth the measurements in about 35 minutes. I asked what normal nuchal fold measurements would be, but she said “after about 20 weeks, there isn’t a normal anymore. I was just measuring it because she was giving me a good shot at it.” Ok, makes sense. She told us she was going to go talk to the dr and then the dr would come in in about 10 minutes and handed us the disk with the pictures.

The genetic counselor came in and I can’t even explain the relief when I saw it was Amber. Amber was with us during our whole journey with Bailey, most of the journey with Crystian, and had just come back from having her own baby just days after our last appointment. She had handed our notes to another counselor (Emily) and Emily got an education fast. Emily told Amber “there were a few notes in there” and Amber said “A few notes? the file is HUGE!”

But Amber walked in, gave me a hug, and we got down to business. Told you, we aren’t much for the ones that want to do this stupid idle chatter about the weather, weekend plans, and whatnot. We want someone ready to do business and treat us like they would want someone to talk to them. She went over what she saw with the results and I was able to explain what had royally irritated me about the third counselor we had encountered, Joy. Amber got what I meant when I said that I didn’t appreciate Joy talking to me like our baby having downs would end the world. That my fears had NOTHING to do with downs. It has to do with this screening that is WORLDS apart from the first one. Joy didn’t get it. But Amber did. Amber jumped in with both feet, handling Adam and I firing off questions. We got her to explain WHY we couldn’t redo the quad screen. After 22 weeks, the standard deviation (normal range) is much bigger than it was before. It just wouldn’t be fully accurate. That’s why the first screening is the most accurate for down’s. Another thing that was brought up was that it could be something with my eggs or with Adam’s sperm and that’s where we went talking about amnio.

Now, Amnio has a 1 in 300 chance of something happening. That’s the national average. Each dr that does these tests has a different number, based on their experience and their attitude toward them. Given everything we are dealing with, they wouldn’t want to do an amnio before 32 weeks. That is the point at which they are very likely to make it, should something go wrong. Obviously the more time inside they get, the better. But this is when they feel is best to do it. They can get baby to work more with them to get what they need. Then you have enough time to get results, but not so early that it isn’t worth it, it causes too many problems. With us, they would like to do it between 32-36 weeks, depending on how fast they can get the cells to grow and then analyze them. Its something she needs to look into more, but that’s the range she thinks would be best. And the dr that would be doing the test, she’s very experienced and very confident, but she doesn’t take stupid risks. If she doesn’t feel 100% she can get what she needs safely, she won’t do it. It still scares me, but I feel somewhat better knowing how she approaches it and having met her. I feel I *could* do it. Remember, this is the only way we could look at if baby has ACD or not. There is no non invasive way to get these results.

Why does this result to eggs and sperm? We have to look a the fact that we have two healthy boys, but we’ve had things come back in a pattern with the girls and it feels the pattern is repeating, to an extent, and we wonder if its not something with how the two parts come together and based on if baby is a boy or girl, things either go right or wrong. What they would look at in the amnio would basically be just this one nonsense mutation that Bailey had. Why this one? Why not the whole chromosome? Because with how things happen, it would be a real shock if baby has ACD, but not the same mutation. It goes back to when my eggs or Adam’s sperm are formed. Its basically the same code being printed in each part, over and over. But some don’t form quite the same as the “normal” ones you have. With what happened with Bailey, if it happened again, it would most likely be the same mutation. Its really hard to explain, but with how it was explained to us, it wouldn’t be logical for another mutation/deletion to pop up. Like lighting strikes. Yes, we’ve all seen videos of people being hit by lightning and even some where the person is hit more than once. But it would be very unusual to have ACD repeat without that same mutation. That’s exactly what they would look for and why they think it would be very simple, compared to some where they have to analyze much more.

Baby girl’s heart looks good, we will be doing an in depth Echo in October with Dr Chip, along with another follow up ultrasound with the peri office the same day (you think your dr appointments suck, an Echo takes 3-3 1/2 hours and the peri appointments take about 1-2 hours). Everything looks good so far, we are just going to monitor things more. Basically, because we have had a history of things being weird, they want to keep an eye on everything. When you have a child born with a heart defect, they like to keep an eye out on all future pregnancies as well.

Just more monitoring to prepare ourselves for what can happen and be ready to deal with things better.

We did give a plan should ACD be found. If its found, we’ll be working very hard to deliver in St Louis. That’s where they’ve done the only successful full lung transplant on an ACD baby. That lil girl is now about 2 years old. If it comes back nothing is alarming, we’ll just deliver like we did with Bailey and Crystian, with lots of people on hand, NICU notified, and everyone knowing EXACTLY what they need to do.

Did we get all comforting answers? No. But we didn’t get left in the dark. She explained things that were dismissed. You take a look at this counselor, she looks kind of ditzy. But this girl opens her mouth and she’s SUPER well versed in what she’s talking about and has done her research VERY extensively. She’s VERY proactive about everything and very real about how she talks to you. I can’t explain why this girl brings me such comfort, but she and her answers do bring me more comfort than I had before walking in.

So, bottom line, we are feeling a bit more calm and comforted, but we are still anxious. There are still a lot of unanswered questions that we can’t get the answer to until at least the amnio. One thing that was brought up was Bailey’s protein levels that came back on the quad screen. Hers came back on the extreme sides of normal. For example, their cut off for normal with the hcg would be a 2.5. Bailey was a 2. This baby is a hair over 1. They don’t look at each protein alone, but they look at the pattern. The girls have the same pattern. Bailey’s was more extreme, but still there. Part of the problem is the umbilical cord, heart, and placenta working together for baby, if something goes haywire with those parts, it can come out in the screening as something isn’t right.

I know I’m throwing a lot out there and basically leaving others to come up with questions, but there are a lot of things that need a ton of explaining. we are willing to help those who don’t understand.

More fun details to remember, yes, we are confirmed as being pregnant with a girl. She’s about 1#4oz, measuring right on schedule with my timing of the pregnancy with another bigger head. As she was doing a more intensive scan, I did get to see the details of her face and she looks JUST like her sister if you ask me. I’m so excited and nervous for this little lady. I think I’ll be more calm when she’s here, but in the mean time, I’m enduring her going crazy.

Ugh, now I really need to crash out. Many days to catch up on with sleep. Keep praying, but I wanted to share with everyone how things are going and what we have learned.

Off to bed. Sleep well.

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Baby #4 due in mid January

So, I’m sure many if not all of you have heard, we are expecting baby #4 in January. Right around the beginning of the month. Pretty exciting since it happened so quickly and things have been going somewhat smoothly.
Back in July, July 3rd to be exact, we did the routine 1st trimester screening and scan. We ended up getting the results back while on vacation in Colorado that everything was great. Our risk was 1 in greater than 10,000. Basically, the risk is so low, they can’t even measure it. Great news! I cried and worried everyone around the table. I tried to give a thumbs up, but it wasn’t until I was more composed I could explain. We were excited!
We still needed to do the afp screening in the second trimester to test for neural tube disorders like spina bifida, but that really wasn’t a concern for us. The 1st trimester results are much more reliable, like 90+%, whereas 2nd trimester quad screen results are accurate in the 80%. The only thing is, 1st tri screening can’t screen for neural tube defects, but you can test for the trisomy markers. We set up the next appointments and went on our merry little way, thanking God for the good results and praying that the good results keep coming.
Keeping with our agreement with each other, we didn’t want to know what we were having unless something came back as there could be issues, then we would find out. We went into our most recent appointment on August 29 with very little nerves. We had been told our results came back good from the afp. Well, it started out nice enough.
She started doing all the measurements and everything was going pretty normal. Baby was being a stinker and not allowing very good views of the heart and its various workings, but that has been with all the kids. I started thinking to myself “Its pretty sad when you spend so much time in the perinatal office, you can pick out exactly what is what, like baby’s diaphragm, the leg bones, the organs (bladder, stomach, etc).” I even happened to notice as she was doing the measurements from head down and happened to see and was able to tell pretty sure what we were having. Was kinda bummed because the tech we normally got would tell us to look away because she knew we knew what to look for. Not this tech. She didn’t say anything while in that area, but she also didn’t warn us to look away.
Then she went back to measuring baby’s heart and still couldn’t get very good pictures. She then moved to the nuchal fold and I noticed the number, something about it didn’t seem right, and I noticed that she was measuring the same thing over and over and over. She never said anything was wrong, but she wasn’t saying anything at all either. Finally she says she thinks she has what she’s best going to get.
Then the perinatologist comes in with a resident and we allow him to come in and consult with us (all the more we get the chance to educate another person about acd and all that we know about it). She mentions that the heart pictures weren’t the best, we’d need to come back for sure for better pictures. We knew to expect that. But what she ended up bringing up was the nuchal fold (the skin on the back of your neck) and mentioned it was thicker than it should be. Normally, it should be below 5mm. Our measurements were between 5.2-5.8mm, depending on the image she got. She brought up the first tri screening results and said that was a good sign, but what were the second tri results from the afp. No one had them on hand and all I had been told was that they were good, they came back negative. The genetic counselor (who came in with the dr) decided to go get them so we could all talk. This is where things got even stranger. Turns out, when they did the afp screening, for some reason, the lab did a full quad screen. And it had come back somewhat worrisome.
My age related risk for having a baby with Down’s is about 1 in 760. After first tri screening, it dropped to 1 in 10,000+. But second tri screening came back 1 in 319. Ok, there’s a HUGE jump in the numbers. But mixed with the measurements, the risk jumped even more. From 1 in 300+ to 1 in 30. Ok, this is not cool.
We talked about what else we could do as more testing and see what is going on. What we came back with was either doing another quad screen and seeing if it came back just the same (the two screenings were drawn at different clinics and sent to different labs) and the free cell dna test. After seeing everything laid out before us and still reeling from the blind siding results, we decided to do the free cell test. Accuracy is 99%+ All they need to do is draw my blood and send it off. Then, they seperate my blood from baby’s and see if there are any markers for downs. Takes a week to get results back. Mind you, this is on a friday. Before Labor Day. This was going to be a very busy week with the holiday, Anthony starting school, and all the other normal stuff that pops up without warning all the time. Great to know someone will be able to enjoy their weekend!
Fast forward to Monday, September 8. While I was getting ready to go pick up Anthony up from school, the call came in with test results and I didn’t make it to the phone. I instantly started praying. I had a feeling I knew the results, I just wasn’t totally sure.
I finally got to call back and the genetic counselor I talked to made it seem like she was telling me the best news of my life. The test came back negative for down’s.
NO!!!
It took a lot of talking to get her to realize why I was so upset with the results, I think I finally got it through her head that this was a pattern much like Bailey. That down’s wasn’t our worry, acd was. that down’s means there’s at least some chance at life. Acd is pretty much certain death. She was pretty dismissive of redoing the quad screen to double check and rule out any lab inconsistencies and advised all that is left to test for things like acd are invasive. Like Amniocentisis (Amnio), which carries a 1 in 300 chance of something goes wrong. I refuse because any chance is a chance too great, especially before viability. There’s just too much at stake. I might consider it down the line, but there are a lot of moving parts to this whole situation. Basically, we learned nothing except that baby doesn’t have downs, there is no more non invasive testing (the kind of testing they can do on just drawing blood from me, invasive testing would be drawing blood or fluid from baby or the amniotic sac), and we have even more questions about what is going on inside my belly.
So, recap.
1 we had screening done in 1st tri come back beautifully, 2nd tri didn’t come back nicely, but we weren’t warned.
2 baby doesn’t have downs, very reliable test
3 there is no more testing before we get invasive, which we both feel very stongly against,
4 oh yea, I totally forgot. Its been confirmed through ultrasound and through the testing (and I was right when I saw that area, told you, I know what to look for). We are having another baby girl. No names are picked out for sure and won’t be until likely baby is born. So asking won’t get you anywhere.

If you have questions, please ask Adam or me. Its a lot of confusing stuff to try to explain to others if they don’t have experience in things like this. where it literally hits the fan. I’m going to try and keep everyone posted with each appointment (regular ob appointment on the 16th (yes, Adam’s birthday) and september 19th (another ultrasound scan to try and get heart pictures.
Keep praying for our baby girl. So much uncertainty, its hard to know what to pray for. But we would appreciate it.

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Triggered…needing blog therapy…

So, its been a long while since I’ve been on here and UGH! Its been a week that I just need to get off my chest. I’m pretty sure I’m going to be told off for it, but anyone who doesn’t agree with me, I really don’t care. I don’t write my blog for you and you didn’t have to see me every day this week, trying with all I have to keep it together. Really won’t hurt me if you unfollow me.

So, I guess I’ll start at one trigger that is just making me scratch my head. My good for nothing scum bag “father” has been trying to get back into my life and start fresh. If you know this man, you know why I slammed that door. If you don’t, oh, the things I could tell you. In fact, I think I will. This is a man who ignored me the whole time I lived in his home unless he needed something (a baby sitter, money, chores, you name it) but never followed through with any of his promises. Great guy, huh? My first holiday after moving up to MN, he was way up north near the Canadian border at a concert with a chick he met online. I had to find my own way to keep myself entertained for Thanksgiving. When he got home, he felt it was appropriate to show me an email this chick had sent to him by accident and OH LORD, its NOT something you show your daughter. EVER. EVER! Funny enough, Christmas was the same. I was by my self at the house while he was off with this chick and her family. And he didn’t even think twice about inviting me along. New years? I spent working at the restuarant across the street. Nothing better to do. Every holiday was like that. I always came second to the chick he was with. Great huh?

So he tries coming back into our lives right around christmas time. He also had 2 sisters seeking me out. One of the sisters told me about a half sister I had who was older than me and apparently he didn’t know about until just in the past few years. Sorted out the situation and found that the half sister was a fraud thing and he blocked us out of his life again. Big loss, there. Anthony has no clue who you are and you won’t ever know any of my kids again. Now, I’ve since had a conversation that was super hard to hear, but I did need to hear it. I was FINALLY able to ask someone why no one on my side of the family ever came to anything we invited them to, to see Bailey in the hospital, and why no one came to the wake and so few to the funeral. This *STELLAR* “father” had told everyone in the family “Don’t bother. She has Adam’s family, she doesn’t need anyone else.” Still confused on why anyone would listen to that lying snake in the grass, but at least I know why it happened and I’ve cleared that up. I was also told he was wanting back into our lives because he’s in serious trouble and is looking for social security numbers. HA! Good luck there, Einstein. Door slammed forever. There is more, but I’m dealing with that in private since that seems to be the only way to beat something into their head. Don’t worry, I haven’t forgotten about you.

Another trigger is how often my husband has had to be gone all day. I don’t care how much vacation time you are given, you need to use it during the year, rather than making the last 2-3 months before it expires hell for us. There have been days I needed to get out but couldn’t. Days I really needed my husband home, but he had to work late. Appointments that had to be moved because of the schedule. Really don’t care who is pissed off about that, I feel I haven’t seen my husband nearly as much as I should and feel that its inconsiderate. I had to schedule my final appointments and then wait for Adam to check that they don’t interfere with vacations. Makes my blood boil just thinking about it more. I want my husband home when he should be home.

And this week. *Deep sigh* ugh this week has been filled with tears, pain, and total disbelief. I know this will piss people off, but I really don’t care at this point. The 12th, I was triggered by a birth in the family. I really didn’t think it would hit me so hard. But as I sit in Anthony’s room, watching him fall asleep and rubbing my belly, I couldn’t help thinking about Bailey. Her fast and furious labor, her being put in my arms then taken away, the dr asking the nurses if I could have another few minutes before she left the room, and then her being taken from my arms again to be rushed down the hall. I remember the look on Adam’s face that was full of questions, and one I could read CLEARLY, I had to answer with “Adam, FOLLOW HER. Do NOT leave her side. Tell her I love her.” and I urged him to the door. I had nurses to take care of me, I didn’t want my newborn being rushed down the hallway with voices she hadn’t heard before, scared because everything going on. I remember asking the nurses their policy on where babies slept the first night and being told that she wouldn’t be out of the NICU tonight without a miracle. I remember being helped to the wheelchair and being wheeled to see my daughter. By the time I got there, Adam was fighting to keep a nuk in her mouth and a nurse working quickly, trying to adjust this and that, giving more this, moving that. And my beautiful little girl. Bright red hair and a face VERY much like her brother, only more dainty. I couldn’t believe how amazing she was. I didn’t even notice until later all the machines around her, the nurses around her, the drs talking about her. I was overwhelmed by the chaos going on. And I saw a papa. Staring down at his lil lady and all the pride in his face. My heart couldn’t hold more love for my family than that moment.

I remember not getting to stay long because they were afraid I wouldn’t be able to stand long and they wanted to get me set up with a pump and talk to the lactation consultants. I remember my in laws bringing Anthony in with that crazy orange fuzzy ball and them wanting to know what was going on, what we had had (we didn’t find out boy or girl until she came out and kept it secret until we had no choice), and how things were going. I told them what I knew I could, but waited for Adam to come back with the latest. He finally did after awhile and updated us that things were getting scary and that he had basically been told he needed to leave for a bit. I remember telling Adam I wanted to see my daughter BEFORE they put the chest tube in to drain the air from her chest. I wanted to be there to take on HER fear and let her know I didn’t abandon her. I didn’t get to stay long because they wanted to keep it sterile in the NICU and didn’t want to take the chance we would freak out. The next time I saw my daughter, she had even more machines around her, a tube that went into her chest, and they hadn’t untied her arms and legs (they did that to ensure she didn’t jerk away when they put in the chest tube) and my heart broke. This wasn’t supposed to happen like this. I was supposed to have a healthy, happy baby in my arms that was only hooked up to a pulse ox. She was only supposed to be monitored for her oxygen levels. It was her heart that had the flaw, why did they keep mentioning her lungs?

Then I remember the onslaught on visitors. I was constantly being pulled from the NICU for visitors. I just wanted to be by my daughter’s side, but I couldn’t. From there, the memories become more and more fuzzy. Her bedside becoming more chaotic, talk of transferring, and letting the nurses and drs know its not her heart that isn’t working, its her lungs. I do remember though, when the word “transfer” was said, I turned to the nurse that was so amazing and helping me with everything, being by my side almost the whole time, I told her “I’m following her. Just try and stop me.” and she went to look for a dr. I thought I was going to have a battle to follow her. Over my dead body was I going to be away from her side. I had already lost enough time. Once the nurse came back and told me there was a dr that was getting my release papers together, I rushed to my room and started packing. I was going to be ready long before anyone took my baby girl. The nurse stopped me and told me “We’ll pack your room, lets order you a lunch and then you get back to the NICU. They need you there and we can take care of this.” This nurse was AMAZING.

More blurring memories. Being handed Bailey’s nuk, being given papers to read and sign, all didn’t even have her name on them. When the nurses from Amplatz showed up, I remember thinking “Someone needs to go with, she doesn’t know these people!” and being frustrated that we couldn’t even send Adam to be by her. We were handed maps, given directions, and they packed up my baby girl. They couldn’t even take the machine that was hooked up to her chest tube because it wouldn’t fit, they would just have to hurry and hope.

Fast forward to when we made it to Amplatz. It was getting late and they didn’t have any news at all. They wanted to get some basic info from us and told us “The dr will come see you, just go wait in the lounge” It was at least 2 hours before we got to see the dr. In the mean time, we had nothing but worry, an anxious and obviously thrown off toddler, and more worry. The dr came in, I remember the look on her face. A mix of optimism and worry. Bailey was finally stabilized, but things had gone bad during transport. Her heart had stopped because they didn’t have the machine to pull the air out of her chest. The nurses had to do over 10 minutes of CPR while in transit just to keep her heart pumping. My heart SHATTERED. The dr told us that they were able to get her heart started again, but there were bruises on my baby girl’s chest from the cpr. She was finally stable, but they had to add 2 more chest tubes. She was finally starting to turn the pink she should have been long ago. They were now worried about the low oxygen levels she had been at since birth and about how long she would be stable. If she kept herself stable, she wouldn’t need ECMO, but if she started slipping, they needed to get her on ECMO right away. The dr left and told us we could visit for a bit. Wasn’t long after that that she started slipping and we had to make the choice of baptising her “just in case” before they started doing ECMO. It would be a long time after they started putting her on the machine before we’d get to see her again. We were told to go lay down and try to get some sleep, they’d come to us when we could see her again. We had to sleep in the family lounge and fight the receptionist who kept telling us “Stop closing the door! You can’t sleep here!” Well, when you just drove hours to get here after just giving birth and have NO WHERE to go, guess what, doll? We are gonna sleep whereever we can find room. They finally gave us a room and we got to see Bailey FINALLY before bed.

The next days were filled with early and long days bedside, learning new faces and hearing other’s stories, being told good news and not so good news, and learning medical terms I never thought I’d ever be able to pronounce or spell, let alone explain to others. I even found myself COMFORTING OTHERS. I was told “You are so strong, I would be in shambles if I were you!”

Well, I wasn’t strong. I was NUMB. I couldn’t bring myself to even try to hug my son as much as he needed and I couldn’t bring myself to leave the hospital for anything. I had to be pulled away to pump, eat, and sleep.

During her final days, I became really depressed. I knew something was really wrong all along, but I just didn’t want to listen to that voice in the back of my head screaming “You won’t get to bring her home, she wasn’t intended to stay…”. I grew angry with anyone talking about how it was fine to be stable, said those words that still cut me deeper than any knife “not compatible with life”, or talked about anything being wrong. This wasn’t supposed to happen to me. I wasn’t supposed to be there. There were babies born before viability that were growing stronger and making strides. My baby was a full term baby! Why is my full term baby the sickest in the NICU? Why were things going so horribly?!? We almost lost her one night because something shifted out of place with her ECMO cannulas and we only got one call (that we ended up missing) telling us something was wrong. I had to call back the hospital to find out what, and Adam and I flew from the Ronald McDonald House to be by her side. The whole time, we were furious. Why hadn’t they tried harder to contact us? What if she had died? What happened? We chewed out everyone around our baby for not calling again, not trying harder, and for being all around ignorant. You don’t just call once, say you need to call us back ASAP or get here NOW, and then no follow up call or anything. Don’t tell me you wouldn’t have let our baby die without telling us. Don’t tell me you tried EVERYTHING. I can’t even imagine if things would have gotten worse and we wouldn’t have been there when she died.

The day before he biopsy came back, Adam and I had to be real about things. Our daughter was starting to go through organ failure and things were looking grim. When the results came in the next day, our world crashed. We became THAT family. The one that comes into a hospital, has a baby, and leaves empty handed, with nothing more than a memory box, heading to the funeral home to make arrangements. The night before we let Bailey go, Adam asked me a question. “So, who holds her as she dies?” And I was throw for a loop. I knew I didn’t have the strength and felt ENORMOUS guilt that I had been the only one to hold her thusfar. Obviously Adam would be the best choice.

I can’t imagine having been away from her for any stretch of time and I know it killed Adam when he had to take Anthony and go back to work, putting his scared little man in daycare, playing a single dad role. My heart broke for Adam when I talked to him at night. Hearing the sadness in his voice. His girls weren’t there with him and there wasn’t much he could do about it. I did my best to make sure I sent photos and videos of Bailey and called him often. My heart was hurting too. My son and my best friend were 3 hours away. I heard the sadness in their voices that we couldn’t be together. Luckily it wasn’t long before they’d be back, but it still hurt having to say goodbye to them when they went back home without us.

So, I’m breaking my silence. I’ve put it out there that I don’t see how ANY parent could not rush to be by their child’s side. Wouldn’t move Heaven, Hell, and everything between, fighting anyone who stood in the way, and make excuses (face it, they are excuses, and piss poor ones) to not be bedside. There are so many stories out there of how a parent being there, whispering to their baby, laying their hand on a hand, foot, or head, and just reassuring their baby, and that makes ALL the difference. I know that when Bailey’s stats would start to get a little low, if I talked to her and put my hand on her, she would pull them back up almost every time. She turned her head what little she could, opened her eyes, and moved her fingers for her papa. She knew when he was there and when I talked about him. Don’t you DARE tell me that you don’t make a difference just in being there. There is no such thing as “There is nothing I can do.” YES! there is. That baby has heard YOUR voice for the past 9 months. That baby knows YOUR smell. That baby knows everything about you. And the longer you are with them outside the womb, the more they know you. You think they don’t notice that all the faces around them are strange? That the voices aren’t what they are used to hearing? That they aren’t terrified and dealing with all this fear and pain (ivs hurt, along with anything else they have to put on or in them) and have to face it alone? You think you are going through anxiety? Welcome to parenthood. Your whole life is now anxiety. And there is never a point it fully goes away. Get used to it. Try facing it totally alone with strangers, no one you recognize, and no one to reassure you.

There is a saying out there that fits SO well into this. “Making the decision to have a child is momentous. It is to decide forever to have your heart go walking around outside your body.” ~Elizabeth Stone
What does it mean? It means having kids isn’t a choice to be taken lightly. You are forever on the backburner and your child comes first. Your child is your heart and soul, mixed with the heart and soul of another, walking around outside your body. You would kill for this child. You would DIE for this child. You would do ANYTHING to keep them safe, healthy, and happy. Even though it woudl royally suck, you’d take on every pain they ever had, just so they never had to feel pain.

I know exactly how I would handle the situation if we were to have to go down the same road we did with Bailey again. I would tell Adam to be by that baby’s side until I can get there too. I would fight anyone who got in my way so that I could be there too. Nothing would stop me. Hospital rules, icy slick roads, NOTHING would stop me.

Now, I’m here as a support (having been there, I know that the support can make all the difference to keep you going or make you want to give up on everything) and prayers are being said all the time for healing, health, and getting to come home very soon. Just because I have a strong opinion about how things happened, that doesn’t mean I don’t give a damn. There are no excuses when it comes to your kids. You give them everything you have, you go without, and you give them better than you got. You say you didn’t come from a loving home? Give that amazing, loving home to your child. You say that you didn’t have much growing up? You give that baby all it needs and give them what you didn’t get. If you don’t give better than you got, don’t expect your child to turn out better than you did.

Now, if you don’t agree with me, TOUGH SHIT. I’m not taking this down and I’m not editing it because people are upset. Hit that unfollow/unsubscribe/unfriend button. I’m not going to keep biting my tongue to save other’s feelings. While I don’t agree fully with how its happening, many are thinking it, they just aren’t saying it. Would you rather people be honest with you or only tell you what you want to hear?

As much as it hurts, I prefer honesty.

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Update and I really need to blow off steam

So, things have been going REALLY well with this pregnancy. All tests have come back within the range they should, nothing has been found (a low lying placenta that moved out of the way was the most worrisome thus far, I’m NOT complaining one bit!!), and the news like that keeps rolling in. After each appointment, I start really believing that we can bring this baby home and keep it! I’m getting really excited to start working on that nursery and get things put together.

We just had a follow up scan done today and baby is measuring right on and even ahead in some ways. Baby is about 2# 5oz and sitting in the 70th%. The tech told us we are basically right on track to have another 8# baby. I have NO problem with that. And seeing that beautiful face in 3d was icing on the cake. This baby looks JUST like Anthony and Bailey! I couldn’t be happier that things are going so well. We are really blessed to this point.

Anthony is almost fully potty trained. I don’t know how it happened, but Adam told Anthony that if he went poop on the potty, he could have ice cream. And it worked! And there have been a few accidents since, but they are very rare. Now to work on overnights. Anthony really wants to wear undies to bed, but we tried that one night and it didn’t work out. We were sad, but we know he’ll get there when he’s ready. He is waking in the middle of the night to go pee and almost always he’s wanting to go back to his own bed unless it was something that scared him (nightmares have been a bit of a problem lately), then he wants to sleep with us. We really try to take him back to bed, but there are days when you can tell he’s just too freaked out and its easier on everyone to just let him snuggle in and feel he’s safe again. Most of the time, he’s back out SUPER fast and we can all get a good rest in. He’s even getting better about sharing our bed.
Tonight, he asked we do a monster in the closet check. I don’t know if it has anything to do with some shows talking about the child being scared of something in their room, the book we read (“Good Bye Mom and Dad”) and checking for monsters, or what. He’s been talking about monsters in closets. We did a check and he seemed to really like knowing that there wasn’t anything in there but boxes of clothes that don’t fit him anymore.
He’s also made some HUGE strides in other ways. He’s forward facing in all vehicles (this happened around christmas and he’s LOVING it!) and now likes helping direct us where to go (to the store, target, or where ever else) and he’s gotten very good at telling us when to stop, slow down, and go based on the color of the lights ahead of us. I’m so glad that he’s finally hit the weight that we all feel its best to flip him around. He’s been bouncing between 32 and 33# and is fully out of 2t stuff. Makes me so sad. He doesn’t have much for 3t, but we are working on that. He’s got a longer torso, so even some 3t stuff isn’t long enough to cover the belly. But he’s still as skinny as a rail, so adjustable waist is the ONLY way we can put him in something that fits right. He got to help Adam and me make snow men with the snow that fell back in December. He loves playing outside. This little goofball LOVES building snow men, throwing snow balls, shovelling, and exploring outside when its cold and white. You really have to get creative to get him back inside before his face is totally red. The first time I stuck him in his stuff, he screamed bloody murder. After he realized what was up, he knew that getting that prepared to go outside was for a great reason. Adam and I have gotten to have a blast outside too. I can’t wait until this cold snap is over so we can get out and play more.
Anthony has also totally dropped his scheduled afternoon nap. Now, if he naps, he crashes out for about an hour, but he isn’t told to go lay down in bed or anything like that. Many times, its us snuggling on the couch under his favorite down blankie and we both crash out. I think that scheduling his naps was starting to effect his sleep at night, so now its on an as needed basis. Its also unleashed a whole new kid. This kid throws tantrums to end all (Lord, I’m sorry I EVER complained about terrible twos!!), but he’s also gotten SUPER creative. He’s gotten several Duplo sets and he’s a tower building fiend. He’s building a new one each day and loves asking you to help, but he ends up doing it all himself (we are working on sharing better, but its a long road) and shows such pride in showing off what he did. Even says “I did it!” and I can’t help but smile. He also has started singing (and I mean really singing!) and dancing when he hears music he knows. Its the cutest thing ever and we are always pushing him to learn the words better, learn a little more of the next verse, and to keep practicing. He doesn’t like being the center of attention, but still loves being a ham. His language skills are also exploding. He’s forming full sentences, holding conversations, and expressing himself fully without melting down or resorting to grunts and whines. It really will throw you off when he comes running up and says “I’m big and strong! GRR!” and flexes his pipes. I just can’t stop being amazed at the things he says. For example, Adam was trying to get Anthony to pay attention in music class and Anthony whipped around and said “Sit down, papa!”. Such a pill sometimes!

Things have taken a HUGE step backward when it comes to Bailey. We had assumed that 18 months ago, her sample was sent to Baylor to get put into their system and to get whatever answers we could. Turns out, that’s not the case. I was first blaming Baylor because we knew we signed the papers and not hearing ANYTHING back from them, they MUST be the guilty party, right? NO. Turns out that the sample was never sent. They are making it sound like we refused the sample being sent. Adam and I remember that conversation that took place after Bailey died. We refused autopsy, but we consented to send the sample and signed that sheet. We find out tomorrow what REALLY is going on. Stupid thing is, no matter what, they aren’t looking at anything dealing with the genetic research part of the ACD research. That genetic part is done. So if we want her sample to get checked for genetic markers, we have to pay. Does it make sense to anyone? Apparently, we need to babysit other adults who’s ENTIRE JOB is making sure these papers are taken care of and samples are sent. I thought we were responsible adults. Guess that was a mistake on our part to not be on top of them and nag them to make sure it was done. Biggest issue about this is that knowing the answer to “Are we a genetic case of ACD or not?!?” means that either we are and our kids have a 1 in 4 chance of having ACD or we aren’t a genetic case and the chances of this happening again are a snowball’s chance in hell. But, we find out more details on that tomorrow.

We are fully settled into the house and still working on getting boxes worked from the garage into the house, but we got to put up our tree for the first time since 2009. So exciting and Anthony LOVES helping decorate for the holidays. He gets to help with the gel clings on the windows and got a section of the tree to hang his own ornaments. He loved this and had the hardest time leaving the tree alone. It was worth it.

We have also started decorating even more. We’ve pulled storage options in and have started putting photos out on display. It makes it all feel even more like home.

Now if only whatever garbage I’ve been sick with for nearly 2 months straight and the house looks like it. I’m struggling to get it back under control. One bit at a time. I really hope to have it back to where it was before hand quickly. We have some minor house repairs going on in the coming week and it would be helpful to get it done soon. Nothing too major, just enough to be a pain in the behind.

I can’t wait to feel better and start really decorating the nursery. Its going to be so much fun setting things up and getting it all personalized. Couldn’t do that in an apartment!

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“You’ll understand one day…”

So a lot of things have happened since the last time I’ve been on here. Bailey’s birthday went pretty smoothly with a beautiful cake, she got so many nice presents, and it rained, but it was the kind of rain that was comforting. Hard to understand to many, but we got it. It was a pretty gentle day. The angelversary (one year since she passed) was another tough day, but it also went fairly smoothly. The dollar store was out of helium, so that put a pin in my plans with that. From what I understand still, they are still out. I don’t get it, but no use in flipping about it.

Since then, we’ve had a few more changes. I’ve had many people walk out of my life (for stupid, trivial reasons, but if you don’t want to be in my life, I’m not going to try and keep you around. Just don’t think that you can keep coming back when it works for you) and I’ve had people walk back into my life who actually have added to it again. Especially now that they are on the same page as me, we don’t get into it anymore. Thank God.

We’ve also found out we are pregnant and due April 28, 2013. Very excited. Our first appointments have gone well with full results coming in about a week. We are going to be going through some genetic testing to see if we can catch anything early again, so pray those come back normal this time. My morning sickness has mostly passed (I’ve had a short stretch of days where I feel like garbage, but for the most part, I’m feeling good again) and I’m starting to get the telltale belly. Although I had lost nearly 25# before getting pregnant, the extra skin didn’t go down at all, so its disguising the belly so far. I’m excited for the time when people will be able to tell I’m pregnant, not just fat.

Anthony is growing like a weed. He’s almost entirely out of 2t stuff and even a few 3t things seem a little short. He’s also nearly fully potty trained (going #2 is still proving to not happen and while he’s sleeping its unpredictable), but he loves wearing undies over pull ups or slip ons. I won’t complain. Its saving money on diapers and the likes. One day he’ll get there fully. I’m just thankful I don’t have to worry about wet diapers. He’s also getting his 2 year molars (a month before he turns 3, but he’s always been late with teeth) and that is making him near impossible to tolerate for a full week. He’s whiny and doesn’t like to listen and it drives me CRAZY.

Which brings me to the whole reason for this post. Seems lately the topic people keep shoving in my face is that apparently I’m never thankful for my blessings. That I basically wish I didn’t have kids and think my life would be better without them. Seems that I have to sing Anthony’s praises daily to get to vent just once. I’ve never said my life would be better without my kids. Easier? Without a doubt. But not better. I’d be lonely and empty. Sure, things are expensive with kids (clothes, toys, books, food, etc), but that doesn’t mean for a second that I would trade him for all the money out there. If you seem to think I’m not grateful, maybe its you that needs to look closer and remember one thing. Its the people we love the most that drive us the craziest. Anthony is able to drive me to that place when I just want to run away because I love him so much. Same with everything surrounding Bailey. Same with this baby. But it seems that all my love and devotion to my family is overshadowed by the times that I really need to vent. I can’t keep calling those very, very few people and venting to them. They don’t want to hear it every time. And I’m looking for others who are going through the same thing as me and can give a bit of advice along with an ear to listen. Venting doesn’t mean I hate my children. Venting means that I’ve hit my limit and I’m trying hard to hold onto some resolve. That my child is testing limits and I need a break. Heaven forbid I get one here and there (which I do, I won’t say that I never get a break), but sometimes the break doesn’t come when I feel I need it most. It happens. Where am I supposed to turn?

I really don’t like crying in front of Anthony. It upsets him. A LOT. There is only so much you can do to keep from snapping or shattering into a million pieces. I’ve tried a lot of it. Its really isolating when people tell me that I’m not thankful or that I need to just suck it up and move on. It really hurts, especially when it comes from those without kids. I really don’t want to throw that into anyone’s face. You have to realize at the same time, a parent ALWAYS loves their children. That doesn’t mean we have to like them always. It means that our child has a spirit all their own and we (being humans) need someone to listen to us melt down once in a while. I love my kids and wouldn’t trade them or sell them. EVER. Do I hit my limit? HELL YES!! Every.Damn.Day. Do I try to hold it in and direct it into better directions or am able to let it go? Of course! But have you ever taken it into consideration that MAYBE, Just MAYBE, I’m having an extra hard day and just can’t see the light at the end of the tunnel? That I just need someone to tell me that it does get better, this is just a bump in the road? That I don’t need someone telling me to be thankful for every tantrum? That you are actually making me feel EVEN WORSE by critisizing me? I already feel like a bad enough mom for when I lose my temper and take it out on him and it makes me feel like garbage that it makes Anthony cry and run away from me. I really don’t need someone else coming along and rubbing my face in it any more. Just like I shouldn’t rub my blessings in other’s faces and brag about it.

Trust me, I love my kids. From the miscarriage to Anthony, to Bailey, to this pregnancy and any others we are blessed with. It would kill me to lose any of them. It just about did to lose Bailey. But Anthony helped carry me through that time. And even when I’m away from Anthony (even when he’s getting me the most wound up), I still miss him like crazy. That being said, I don’t always LIKE my kids. I don’t like when Anthony won’t listen, screams at me, hits me, bounces on my belly, kicks me in the face while we are playing, throws things, and doesn’t give me any space. I still love him, but I don’t like the kid he’s acting like.

But apparently that’s me not being thankful for even having kids.

So next time you see a mom at the end of her rope, stop and think first. She might be at such a point that she basically needs a hug and a little encouragement. Don’t tell her she isn’t thankful or that she should be careful of what she says or wishes for. I’m sure she feels shitty enough about not liking her kids, she doesn’t need someone else piling on and making the load even heavier.

Maybe this will help some understand a little better. Parents ARE THANKFUL. They don’t hate their kids (except those who beat the living shit out of their kids or you can clearly see they just don’t give a damn) and they feel bad enough when they don’t like their kids or their kid’s attitudes. You can Love someone endlessly and still not like them from time to time. And sometimes those times are longer than imagineable. Don’t cut them down or say something hurtful. Give them encouragement. I’m sure they would LOVE to have someone reach out and give them just a little love. Remember, that very well could be you VERY soon. And what goes around comes back around. Karma is REALLY good at keeping tabs on that.

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Oh how my heart hurts…

This past week has been so hard to get through and I feel the only way I can really be truely honest is posting here (which even here gets attacked and I’m told that I need to shut up). I’ve been trying to keep my head high and not burden others with my thoughts and that hasn’t gotten me anywhere. I’ve tried calling on people to help me (they did say “If you ever need something, let me know”) and had them turn their backs on me. I guess their word had a hidden expiration date. I’ve even had people cutting me down in such a way that it should be criminal. I can barely hold myself together anymore, but I still have more people piling it on. Where does it end, people? Try having a shred of compassion and take your cutting words (that you know are only meant to cut others down and hurt them to the core) and shove them up that lovely little thing you plop down in your chair. I’m done dealing with people like that. People tell me to stand up for myself, but when I do, they don’t like what I say. So then I go with the more subdued and don’t voice myself nearly so much and I’m told that I need to stop playing wallflower. Damned if you do, damned if you don’t.

I’ve had to cut ties with quite a few lately. It really hurts that I’ve been pushed to this. I don’t know why, but ever since I buried my daughter, I’ve been hurt more than people could ever imagine by some people who are supposed to be there and help me through. I was abandoned during some very dark times when all I needed was someone to show me the light at the end of the tunnel. Thank God there were SOME people who were there. Thank God not everyone went running for the hills.

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Nine months, “Bye Bye, Bailey”, and Easter

So Adam and I thought it would be a great idea to decorate Bailey’s stone for Easter. Bunny ears, a bigger flower pinwheel, and a few smaller pinwheels. It looked so special, I had to take photos. Well, the first one turned out…different. There were a bunch of sunlight rays beaming down that make the picture look really out of focus, but there’s something about that photo. Its like there is a very obvious presence there. I just love it.

Well, we prayed that the stuff would stay, but knowing that we had some crazy winds coming, we weren’t expecting it would all be there. And it all lasted quite a while considering how strong the winds are (being on the bottom of the hill, the wind seems at least just as strong as the top of the hill), until we decided to go out there after Easter dinner on Easter. We stopped at Grandpa Flo’s house to drop off the Easter bunny photos we had gotten done and visit for a little while. We found out that they had put out another pinwheel almost exactly like the one we put out (little known fact, I was going back and forth between the two styles, but liked the one that we picked out more. Honestly, I wanted both!) and her ears were still there. We decided after the meal we would go and pull the ears off, change out the headband, make any necessary changes, say our words, and be on our way.

Easter was a lot of fun. Anthony LOVED getting to play with his cousins (there was LOTS of running around, playing with a football and balloons, and candy going around!) and ate quite well. He liked the fruit and the ham, but couldn’t wait for the candy! He had such fun looking for eggs. Once he figured out a system of finding the egg, popping it open, putting the candy in his basket and giving the egg part to Adam, he started going like it was a sport. Looking everywhere, running around, everything. It was way too precious. I felt so bad when it was all over and time to head back inside to get ready to leave. Anthony was bawling and fighting, he wasn’t done yet!

When we went out to the cemetery, we found the bunny ears weren’t on the headband anymore. Luckily, they were laying in front of the stone. But the big pinwheels didn’t make it. We found only one petal left on one of them, a petal from the other a few rows up the hill all torn up, and a few of her flowers had blown around. Crazy wind! We cleaned up what we could find and changed out the headband for one that is more dainty and a good change. Adam says he likes it more because its more of something she would have gotten to wear (the band is thinner and much stretchier). We brought the ears home for safe keeping. The idea was that they would come home about then anyway. As we were driving away (we had to drive to the back of the cemetery to get back to the entrance because there was glass blocking the one exit), Anthony did something he’s NEVER done before. He started saying “Bye Bye, Bailey!”. Before anyone gets the idea, we hadn’t said our goodbyes in the car, hadn’t told him to say anything, none of it. He did that all on his own. Adam and I gave each other the “What did he say?!?” look and the car got very quiet. One of us (don’t remember who) said “That’s right, bye bye, Bailey” to assure him that he didn’t do anything wrong, its great that he did that all on his own. There were tears shed on the way home. I get chills just thinking back to it.

I noticed on Friday what day it was. No, not just Friday the 13th (actually usually a good day for me!), but the 13th. Another month older. Time to go through the motions again. Start remembering day by day what happened during her short 3 weeks here. I know that many people would say that I’m dwelling in the past and not moving on, but you have to remember, those 3 weeks were all the time I got to see her beautiful face, smell her hospital smell, kiss her face and hands, and watch her fight with everything she had. Its like reliving your child’s life every year when they are born or reflecting on a certain event in their life. You have to remember that her life was short, its all I got. It was an ok day, but that is, until a customer that I have had serious chats with (we talked A LOT before Bailey was born and she was so excited for us) had the chance to give her condolences. Yea, its been over 8 months since she passed, but sometimes it takes a while for people to figure out what to say or for them to feel its “safe” to bring it up. I commend her for doing it. I got to show her photos and talk about her story a bit and as I choked back the tears (Bailey always causes strong emotions!), I was able to open up to someone in a way that I don’t get to do often with people who aren’t family. The rest of the day was pretty blah. One of those that you just want to go home and put on your pjs. I can only imagine what a mess I’m going to be on her birthday and angelversary.

Things are going great with the whole house thing. We’ve found a house we LOVE LOVE LOVE, offer is in, accepted, inspection done and that went great, bank did their part and that came back good (we think, anyway) and now we have to wait some more. Not on people, but on time. We don’t close until May 7th. I can’t wait to get in there and start settling in. Its going to be great to have our HOME put together and be able to have people over without worrying about parking, idiots being disrespectful, angry dogs, and where everyone is going to sit. Plus a yard. Yes, that means mowing, but it also means that we can put Anthony outside for stretches of time and all of us can play outside without worry of vehicles, stupid people, and having to cross a parking lot to get to grass. Plus none of the construction they’ve started on this road will effect us in our daily lives. Its such a mess out there, I can’t wait to be out of it!

In more great news, since Adam and I have been working out, we’ve both hit some great milestones. Adam has bulked back up to where size large shirts all but refuse to cover his biceps, his waist is smaller (he’s fitting into some pairs of pants he hasn’t worn in a while!), and he’s down about 15 lbs. I’m so proud! As for myself, I’m proud to announce that I no longer have to wear stretchy pants, I am fitting into jeans I haven’t worn since before I was pregnant with Anthony, I’m down about 16 lbs, and can finally say with confidence that my arms are much stronger than they’ve ever been. I just wish I had more jeans that fit, but being between sizes, I’m going to hold off a little longer before going crazy with a new wardrobe. I told Adam I’m holding off for another 10 lbs before I go that crazy. I’m quite proud of us!

My motivation is just being sick and tired of being sick, tired, and fat. I’m tired of not having much I can wear, having a huge belly that isn’t attributed to anything besides two babies (no current ones). But that doesn’t hold a candle to Adam’s motivation.

Adam is doing the Tough Mudder Challenge this May. Its quite the undertaking. 12 miles of running and obstacles, many many people doing it, and its all for a great cause. The main charity that profits is Wounded Warrior Project. They also allow you to raise money for a charity or cause of your own. Of course, Adam is trying to raise money for ACD research. If you find you want to help out, contact Adam or you can always donate money to NORD in the ACD fund. Ask Adam for more details as I can’t find the website that he has set up. Pray that Adam and Morgan (the kids’ godfather) is going to be going through this challenge with Adam. I opted out because I dunno about doing that JUST yet. Maybe next time.

Well, its pretty late here and we have a lot going on this week (just like all weeks anymore, man it sucks!) and its time for some major shut eye while I can get it before moving. Hope you enjoyed the latest going on in our lives!

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8 Painful months

And it still kills me. I was talking to a customer the other day about you. He mentioned that he had to make food for a funeral. A couple was about to bury their child, who had died in an accident. I had to talk to him more. Some reason, it just felt…right. I’ve talked to him many times before. I just never told him about what had happened. For some reason, I was compelled to say something.

I had to tell him to send my condolences to the parents, as I knew how painful it is to lose a child (no matter their age, its just WRONG to bury your child), and that I would send up prayers for them (which I fall asleep nightly thinking about all the people in my situation, those I know and those I don’t). He gave me a very strange look and asked me if I really did know. I told him that I did, we had buried our daughter soon after birth this past summer, that’s why I was gone (literally, this guy comes in DAILY, at least once a day. We all knew him WELL). He asked how old she was and then started a heartbreaking tale of how one of his children very nearly died of spinal menangitis. I wanted SO BADLY to reach out and touch his arm or give him a hug. Not just for him and not just for me. Here was a man that had lived a harrowing experience in which he almost lost his baby. He KNEW. Yea, his baby boy had lived, but he KNEW the pain of the unknown and all the medical crap that surrounds a VERY, gravely ill baby. This was a man I could trust to know a part of my pain. Sadly, I wasn’t able to reach out to him and give him my touch (comfort to him or me, I don’t know) because another customer came in and I of course had to move on and take care of that person. But I think next time I’ll have to give him that comforting touch. Its something that you will never know unless you have a child that is very ill, no matter if they live or not. Dare I say, its almost like a secret society. We don’t really talk about it because it makes people uneasy around us and treat us like we are breakable and can’t be talked to about ANYTHING. But when we get together and get to talk about our children, we connect in a deep way that it doesn’t matter how well we know each other, we are together in a circle and able to lean on each other. I feel I can do the same with the NICU parents who have gotten to bring home their precious angels (Hi, Becca, Cyndy, Tanya, and others!). They know what I mean when I talk about the relief and fear when a dr comes in to the family gathering area. Relief that whatever is going on is over, but fear for what happened. Are the smiling? Are they on the verge of tears? Are they excited or are they scared? Are they carrying papers to sign or read, or coming empty handed? Any parent who has had a child in the hospital (and I mean more than just when they were born, I’m talking about an extended stay!) knows these emotions. Its an even more secret society when your child doesn’t make it. This is a society in which you’ve lost a child (no matter their age) and have wondered “Why did I outlive my child? Why didn’t I pass so that my child could live on, have a life, have children, grow old, everything? Why do I have to have my heart ripped out and put in a box? Why can’t I ever get to hold them again?”. Its really isolating. We can’t talk about our passed on children as easily as those with all their children living because it makes the person we are talking to start to pity us or start treating us like there is something really wrong with us.

I found this to be especially true this past weekend. We have been looking at houses to buy. We have one that we really like, but during our last walk through, Scott, Tammie, and Adam were downstairs checking out the basement while Anthony and I were up in the little boys’ room with the Realtor (Amanda), playing with their megablocks and legos. I thought it was (for some reason) a time I was comfortable bringing up Bailey. We had mentioned her name before, but she never asked and we never said. Anthony was trying to carry the blocks out of the room (which I refused to allow, those aren’t our toys, afterall) and I happened to say “What would I do if your sister was here? You two would have me driving myself up this wall and down that one!”. This piqued Amanda’s ear and she asked what the situation was. I gave her the super condensed version (“Our daughter, Bailey, was born with a very rare lung defect and died at 20 days old. That was this past summer”) and got the usual “I’m so sorry”. There was little else said. I felt that with someone we were going to be working so closely with during this homebuying adventure (and adventure is sure is!!!), it was time for her to know exactly what she was going to be getting into. I have no idea what she thinks of us now, but at least she knows the whole deal.

On the morning that would mark the 8th month since giving birth to that precious little girl, its hitting hard. Rather than thinking about party ideas, places, decorations, even more baby proofing, packing away more pink things for the next baby, and encouraging her ever growing curiosity (just like her brother), I’m thinking about the short 20 days I got with her. All the time I lost. All the stuff that has happened since she came and blessed our lives and left us wanting more of her amazing spirit, beauty, and strength. Friendships gained and lost. People come and gone. Changes made and things that haven’t changed at all. New things that have come along and wishes that she was there. I can’t help but think about where I was last year. We knew that something was wrong with her. We knew that everything was going to be VERY different this time around. We had hard choices to make, plans to put in place, and lots of dr visits coming our way. Looking back, I wish I hadn’t wished it along so quickly. I wish I had spent more time rubbing my belly and talking to her, telling her what an amazing beauty she was. I wish I would have spent more time embracing the changes in my body that were making her growing body stronger. I wish I hadn’t griped so much over the body pains. I wish I had tried to enjoy it more. This all changes with the next baby (God willing). I’ll stop complaining, and start loving. Stop wishing time away and start enjoying every little movement and kick (even the pains!). Stop complaining about the stretch marks and start calling them badges of honor. Stop hiding the marks that my children have left and embrace the beauty that pregnancy beholds. I pray I get to enjoy that feeling again and again. I pray that I’m not done having children. I’d love to have at least 2 more children. I don’t want Anthony to think that he doesn’t get any siblings that he can’t play with.

But, here’s to praying for the future. All the things that Bailey has done to change the world. More awareness. More material to help with answers.  More love and compassion for those with children and angel children. I’ve moved out of one limbo (well, I think I have anyway) and now its time to move out of the other limbo. I just wish I had more than one of my babies to bring into the new home (when it happens) and to allow to grow and play.

Baby girl, we love you so much. Papa and I have had many moments where this whole process of buying a house and moving from one step to another without you and break down. Give us the strength to pick up and carry on. Keep watching out for your wild older brother. He’s being such a pill lately, but sometimes I have to wonder if some moments aren’t you coming through to let us know that all really is ok. We love and miss you. I hope you enjoy the snowman someone made for you and get to play with it before it melts completely. Give the people who made it for you a sign of your and our thanks.
Sending all our love and prayers to you!

To everyone else still hanging in and putting up with all of this, thanks. It means so much to know that there are people out there who care enough to look past the emotions and will even sit down and cry with us. We also thank you for hanging around. It can’t be easy (we know it isn’t from our angle!) and if you have hung in, that means you are a true friend and really love us. Thanks.

Here’s to another month gone. The next 20 days will probably proceed like usual. Maybe one day I’ll speak on that more.

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Simply perfect

Today I was going through my newsfeed like I always do. Checking on my fellow ACD parents, friends, and everyone else and saw a link to a free ebook. Wanting to check it out and see how accurate it was, I downloaded it. I actually just finished reading it and I can give only high praises that someone finally wrote it all down, what you should say and do to help a friend who has lost a baby. There are so many great things about this ebook. Tips on how to help out, what not to say, how to handle things, and resources to help out. I even saw something I would love to have. Some thing that I have wanted since I had to walk out of those NICU doors for the last time. A weighted stuffed animal. Weighted to the exact same weight as your baby.

This book is just perfect. A quick read that gives ideas on how to handle things and gives insight into how a babyloss momma is dealing with things. I really wish I had known about it sooner. Maybe I wouldn’t have so many people telling me that I’m a nasty person or that I’m always angry. Seems people forget, I’m GRIEVING. I guess I’m supposed to be over it by now. Show yourself to the door if you think that I’m drawing this out.

One last thing before I close this up.

If you don’t like what I put on here, click that little X in the upper right corner. This is my BLOG. Its my therapy. Its how I’m trying to deal with everything I’m going through. Do I tell you how to do things? Do I tell you how to think? Do I come on your blog and tell you that you are wrong? That you getting things out in the open so that you can move on is wrong? I try to have respect for others and their blogs, but I can’t seem to get that myself. But I suppose that makes me selfish and I’m trying to make it seem like I’m the only person to have ever lost a child. I KNOW I’m not the only one. Does that mean that the thoughts, hopes, dreams, and emotions tied to my dead baby mean nothing? NO. It means the world to me. I have NEVER compared my experiences with anyone else. I’ve shared what helped me in hopes that they find comfort that I did, but I never belittled their feelings. I’ve never told someone that they are taking their grief too far. EVER. I’ve never told someone that they’ve changed because of what they’ve gone through. I don’t have that authority. I know that they’ve changed. Their whole life was thrown in the air, left to hit the ground in whatever fashion. Their family dynamic has been destroyed. They’ve lost so much when that little heart stopped beating. Why can’t I get that in return?

Don’t bother commenting, I’m not going to approve it. I’m tired of being torn a new one because I don’t totally agree 100% and have the exact same thought process as someone else. Its pretty stupid when I can be super close friends with a group of people I’ve never met in person (all with different religions, beliefs, family dynamics, thought processes, parenting ideas, etc) and we all maintain a level of respect, but I have people that were around me all the time way back when telling me that I’m wrong because I disagree and I’m going to state that I disagree. Great example. I have a friend who lives on the east coast. We both lost babies (very early miscarriages), we both have toddlers (I believe her daughter is less than a month younger than Anthony), we both were pregnant around the same time with #2 (her baby was born about 4 months before Bailey), we hardly ever see eye to eye on ANYTHING. Politics, religion, parenting, EVERYTHING. And yet, we maintain respect for each other, don’t call each other names or insult each other’s intelligence. We don’t pull dirty punches with each other. Imagine that. I get along with someone who doesn’t have the exact same ideas and beliefs. Hmmm…I’m sensing an issue. But I’m cutting through the crap. Agree with me or not. The comments that rip into me aren’t going to be approved. This is MY space to get things off my chest. I don’t care if you don’t like it. Not your blog.

Anyway, here is the link to the Ebook. Hope you enjoy it as much as I did!

http://m.facebook.com/l.php?u=http%3A%2F%2Fcorashopesanddreams.org%2Fwp-content%2Fuploads%2F2012%2F02%2Fbabylossebbok.pdf&h=CAQGnxKOA

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Oh, don’t worry, I’m not done yet…

Trust me, I’m not letting anyone off the hook right now. I’ve got some serious issues with so many people and I’m tired of them thinking that there is something wrong with ME. Let me tell you.

So, its another political year. Lots of mud slinging and name calling. And very little is being done by other candidates at each other. For some reason, we’ve all forgotten that these politicians are people too. Case in point, about a month or so ago, some jerk named Alan with Fox News decided it would be ok to judge Rick Santorum for what he did with his newborn child after he died. Yea, attacking a man because he did what he felt was the right thing for them to do with their own child, not even thinking “WTF would I do in their shoes?”. You know what’s sick? No one thinks to put themselves in other’s shoes. The attacks keep coming (Santorum’s protrait done in nothing but shrunken gay porn pictures, photos of candidates eating food and looking less than flattering, bashing them for their beliefs because it doesn’t mirror their own, etc) and I’m sick and tired of it. I see this garbage going around on facebook and it makes me so sick. I lose respect for anyone who posts that kind of garbage. I can’t post something about how Obama has messed up this country, given money to questionable companies that later filed bankrupcy, doubled the national debt in a fraction of the time it took any other president, taken vacations at the worst times and not bothered cutting them short because things are happening, taking credit for something that he hardly had a hand in, getting the Nobel Peace Prize for doing NOTHING, and many, MANY more. If I post something like that, I have many people jump on me telling me what a horrible person I am, how I’m racist, how I’m anti-american, and I’m hateful because I’m not supporting a president.

Umm, excuse me, let’s rewind the tapes. Were you always respectful and never posted a single hateful or hurtful thing about Bush? How about any other republican? Have you been giving them a fair chance at things? Only publishing things that are truthful? Never made a joke about how stupid and uneducated Bush is? How is it any different with Obama? Because of the color of his skin? Didn’t Martin Luther King Jr say something about judging people “not by the color of their skin, but the content of their character”? So, if I’m posting that I don’t like something that Obama is doing and you call me racist, aren’t you judging on color of skin? Why am I being called a racist because I didn’t vote for the guy, but I’m never given the chance to say why I did so? If you aren’t going to give me the time, don’t expect me to give you the time.

I’m sick and tired of the blatant lack of respect anymore. I’ve seen some HATEFUL things being posted about people who never did a single thing to anyone else. And I’ve seen way too much attention going to things that don’t deserve it, while others who deserve the praise of an entire nation get NOTHING.

For example, my son is named after a fallen Iraq veteran named Anthony McElveen. He died December 2005 in a flour factory. There was maybe a 5 minute blurb on the news and a few small articles in the paper about it. They lowered the flag, buried him in the Camp Ripley Cemetery, put his name on a piece of granite that is displayed with other veteran memorials, and is remembered by those whose lives he’s touched. And yet, here we are. One full week after Whitney Houston died, and she’s still all over the news, radio, magazines, books, and everyone’s lips. They’ve even lowered flags in her honor. What about the last soldiers who have died? Did we have an entire nation crying for them? Does anyone remember their names? Where they were from? How old they were? If they had children? I know I don’t and that breaks my heart for those families. They had to bury a national hero who paid the ultimate price to ensure freedom for us, and we can’t even give them the time of day to utter their name, say a prayer, or even cry a single tear. But for Whitney Houston, we can cry a river, ask God “Why Whitney?!?!”, and watch the news looking for the latest on the situation. SHAME! That’s horrible. It makes me so sick that things like this are going on in a country that likes to abuse its freedoms.

I want to take this opportunity to thank the soldiers out there. Serving and retired. Fallen and POW. All branches. Thank you for your sacrifice. I don’t take for granted that its something that doesn’t come free, but you’ve agree to pay that price for the rest of us. Your bravery is admirable. Thank you doesn’t feel like enough, but I offer that up time and time again.

Whitney who?

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