How our lives have been touched by preeclampsia, cerebral palsy, epilepsy, feeding tubes, failure to thrive and whatever else comes our way
Monday, February 14, 2011
24 Hour Countdown
My OB appointment this morning went well. B/P was up but that is to be expected. The ultrasound lady at the office was backed up so I was sent to the hospital for a BPP, NST, and labs. They all looked fine. I started a 24 hour urine and it will be completed at 11 am tomorrow. I was told to stay in Denton tomorrow after dropping the urine off until they get the results and to come with my bags packed. If it is elevated then we will be meeting little Gabe tomorrow. If it is ok then we will press on for another week. The only problem with delivery tomorrow is that Kenneth is scheduled for sinus surgery on Wednesday. We will just have to reschedule that if we have a baby tomorrow. He really needs the surgery but we really need a healthy baby too. Only time will tell...
Thursday, February 10, 2011
One In A Million
Seriously, if there is going to be an issue that only happens to 1% of people, it will be Anna. How many babies make it to full term when the mother gets PE at 24 weeks? How many babies born IUGR actually end up with cerebral palsy? How many of those kids end up defying the odds and walking (even if a little gimpy) on schedule? How many of those kids need feeding tubes? How many of those kids don't start having seizures until after their 2nd birthday? I could go on forever. Yesterday, out of the blue, Anna started screaming and crying that her ear hurt. She rarely complains but it just so happened she started complaining about the time we were leaving to take her to her gradmother because I had to go to labor and delivery with high b/p. I hoped she was just being dramatic although it is not normal for her. I gave her some Tylenol and hoped for the best. After being released from L&D and sent back home for more bedrest we went to pick Anna up. She had been crying with her ear most of the time we had been gone. She would doze off and wake up screaming and crying. At that point she didn't have any fever though. By the time we got home and gave her all of her nighttime meds plus some more Tylenol she fell asleep. I laid her on the couch and was remarking to Kenneth how she just spiked a temp because she was hot as heck and had chill bumps everywhere. About that time the volcano erupted. She puked up dinner plus all of her meds. For whatever reason both of my kids rarely puke (minus when Anna had her G tube) but when they spike a high temp really quickly they both become pukers. I didn't want to give her more meds because I was not sure what she had absorbed so I just gave her a tiny bit of melatonin and hoped for the best. She actually did ok throughout the night although we never got her fever down below 102 even alternating Tylenol and Motrin. I got her in with Dr. Goff this morning. She does have another ear infection but beyond that her tube has fallen out and the hole did not seal off like it should have. This happens in, you guessed it, 1% of patients with tympanostomy tubes. She is on oral antibiotics and antibiotic/steroid ear drops. We go back for a recheck in 3 weeks. Hopefully the hole will heal on its own but if not we will have to go back to the ENT for a patch over her eardrum (which Dr. Goff says is a difficult procedure and the patch falls off a lot of the time). I asked if they could just put another tube in the same hole but he said it doesn't work like that. The risk with leaving the hole is that it can start to affect her hearing. We already have enough speech problems. Adding hearing damamge certainly will not help in that department. Of course the pharmacy didn't have the antibiotics we needed but they will have them first thing in the morning. We already had the drops so we did start them right away. She still has fever but overall seems to be feeling much better. By the time we got home from L&D and picking up Anna last night I was at the end of my rope and the end of the rope was frayed and about to come undone. I was having mommy guilt about everything ,feeling totally inadequate as a parent, tired, sad for Anna, and most of all just done with this pregnancy. Don't get me wrong, I am so happy to have come this far but I am done. I am so sick of bedrest and feeling like I am just waiting for the crap to hit the fan. I have another OB appointment on Monday and I plan to discuss my mental health more than my physical. I have tried to be patient and keep things in perspective but I am weary. I know I am almost to the end, but that end cannot come soon enough. I didn't sleep worth a crap last night. Luckily Kenneth took off work today and stayed home to help me. He knew I was on the verge of total breakdown. I was able to get a good nap today and am feeling much better tonight. I know I can do this but sometimes I just want to curl up in a ball and lose it...
Tuesday, February 8, 2011
Cooped Up

The kids and their friends with their Nana
I've neglected this poor blog over the past week. We had the snow and ice for days and the kids were home making it impossible to do much else than try to keep them entertained. It was so nice when they went back to school yesterday. We are bracing for more snow tonight and then I think next week it is supposed to be back in the 70's. The weather here is so crazy! I do know one thing- a day of snow is fun. A week of snow is crappy at best and I do not envy anyone who lives where it snows all winter. Maybe your kids adjust to being inside but mine need much outside time and this last week made us all a bit nuts. I did have a friend comment that after being cooped up in her house for just a few days she suddenly realized how crappy bed rest really is. It was nice that someone noticed that it isn't fun. I get so many people who say they wish they could go home and stay on the couch or just lay around for weeks on end. Believe me people, it is only fun for about a day. Not much else is happening and that is fine. I had an OB appointment yesterday and it was uneventful. We go back next week unless something changes before then. I have been having a lot of contractions in my back and they will last for an hour or two and then stop. They hurt but are tolerable. My pelvis is getting more painful as the hours go by and now my tailbone feels bruised whenever I sit down. I am pretty much miserable and can no longer get comfortable no matter what I do. I am so thankful to have come so far but I am pretty much ready to be done. I think getting up and around more would make me feel better but I know what it would do to my pressures so it isn't really an option. I keep telling myself I can do this for 1-2 more weeks and then it will all be over. After a prompting from my sister who was prompted by a friend of hers via Beth Moore, I am now memorizing a bible scripture every 2 weeks. My verse for this 2 weeks is this- But He said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly of my weakness so that the power of Christ may rest upon me. 2 Corinthians 12:9. I think it is so fitting for my current situation...
Wednesday, February 2, 2011
Al Gore is So Very Wrong
Anna, Makenzie, and Carly (they lasted about 5 minutes)
The view from my front porch
We have been so lucky during this ice and snow. Kenneth was able to make it to work safely and had very few runs on his shift. We did lose power but only for about 4 hours and it was during the late night/early morning hours while we were still in bed so the girls and I just snuggled and kept warm. Just about the time we were going to get out of bed it came back on. The girls have had excellent behavior for being stuck inside for 2 days now. Kenneth made it home safely this morning and was able to take the girls out 4 wheeling for a few minutes. He spent longer getting them bundled up than they actually spent outside but it got it out of their system and they were content to stay inside after that. This afternoon I was getting cabin fever really bad so we ventured out to my parent's house. It is only about 5 miles from our house. It was a slippery ride there and one I would not have ever made on my own. My car wouldn't have made it up our hill anyway. Thank goodness for 4WD. The kids were happy to have different scenery and they played together nicely. Kenneth and I played a game called sequence with my parents and had a good time. It was dark when we came home and much more slippery than before. I think a few times Kenneth slipped around on purpose just to watch me freak out. He's a man...he's allowed. Two years ago I left for work on an icy day and crashed into an 18 wheeler, spun around, and crashed into another 18 wheeler before going off the road. I do not have fond memories of that day and so ice really freaks me out. Carly is out of school again tomorrow and then her school was already out on Friday so she does not have school until Monday. I hope she continues to be as sweet during these days as she has been so far. Yesterday I told Anna to go do something, I don't recall what, and she said "I can't. My doctor say I have to lay down." I guess she listens to me more than I thought...
Tuesday, February 1, 2011
Truckin On
Quick update- my Internet is by satellite which is now covered in ice so service is spotty. My b/p was good yesterday. I had another ultrasound and Gabriel still looks good. He is little, only about 3.5 lbs but still growing. His heart was back in a regular rhythm. Praise God, He is good! We are going to try to push it 2 more weeks but Dr Cummings says he really does not think we can push it any further than that. I will be so thrilled with 34 weeks. I feel so bad for my poor husband who is on duty today and has to get out in this icy mess, and I am thankful I can stay home out of it. I'll bring more Gabe updates as they come and as Internet is available. Thank you so much for your thoughts and prayers! Keep them coming, they are working...
Sunday, January 30, 2011
How Friday Went (Or Didn't Go)
I woke up Friday just feeling a little off. My blood pressure was running high (160/90) which was concerning but I had an OB appointment so I didn't get too excited. I went to start my car to go to my appointment and it wouldn't start. Nice! So I ended up driving Kenneth's truck. It is no easy task to drive or rather to park his truck. I have a Nissan Altima and it is easy to drive and park. He has a 3/4 ton crew cab diesel truck so you can imagine the size of that beast. Driving it isn't really too bad but parking it is a whole other story. I had to park in BFE because the spaces at the Dr's office are straight and no matter how hard I tried I could not park the beast between the two lines. I got into the office and although my appointment was at 1:05 the waiting room was already packed. And it was hot in there! After sitting in the waiting room for about 20 minutes, the power went off. And stayed off. For about 30 minutes. By the time it finally came back on my OB got called away to an emergency surgery and they ended up cancelling the rest of his afternoon clinic. The nurse did b/p, urine, weight, and heart tone checks prior to rescheduling the patients though. My weight was only up 1 pound, my urine was negative, but my b/p was 179/102. Nice! Gabe's heart was also doing the funky rhythm again. The nurse called and spoke with my Dr. who told me to go straight home and lay on my left side for the rest of the weekend and I have an appointment at 6:30am tomorrow (Monday) morning. My blood pressure has been all over the place again this weekend. I do not have a good feeling about my appointment tomorrow. I will be 32 weeks tomorrow which was our goal though so that makes me happy. I have a feeling we may be close to the end of the road...
Wednesday, January 26, 2011
Tidbits and BBQ
I am trying to upload a sound clip but not sure if it is going to work. But in case you thought CP kids couldn't be smart... It was my mom's day to take Anna to school yesterday but I told her I would take her because I had to get her some Pull Ups. As we were about to leave the house, Kenneth called from the station and said he had left his phone at home. I told him we would bring it to him. I got it and we got in the car. Anna wanted to "hode Daddy sone" (hold Daddy's phone) on the way to the station. I handed it to her. We have lots of games loaded on both of our phones for the kids. I assumed she was in the backseat playing games. I had the radio blaring as usual and never looked back to see what exactly she was doing. When we got to CVS to get the Pull Ups I asked her to hand me the phone. When I got it from her I couldn't believe what she had done. Carly had found a place on the phone to record voice memos. I guess Anna has been studying what Carly does and Anna had gotten to that app. I was not sure what she had done with it but just stopped the recording and went about my business. When we later got to the station I gave Kenneth his phone and told him I thought Anna had made a recording for him. He later forwarded it to me. It is her saying "hello Daddy" "come home daddy" "hurry daddy"... It amazed me that at 3 years old she was able to locate that app, get it to record, and leave her daddy a message. It was Kenneth's birthday yesterday which made the message even a little more special. I really think we need to do away with the old childhood milestones. It should not be can they stack blocks but rather can they operate an i phone. If the sound clip actually uploads you just won't believe her sweet voice. There are some silent spots but just keep listening.
We ended up in the Dr's office again on Tuesday afternoon with Anna. She has yet another ear infection- the second in less than a month. Dr. Goff was unable to tell if her tubes are in place but said it is unlikely given the infections. She can have 2 more infections and then it will be back off to the ENT for more tubes. Tubes are no big deal so no stress there. I hope for Anna's sake she doesn't need them though just because that means she has to suffer with more infections. She has a nasty cough too but I think it is just the daycare crud of the month.
I must share with you the easiest most delicious recipe. I cannot do much cooking right now but this was something even I could accomplish on bedrest. It sounds nasty but oh my it is sooo good! The ingredients are simple. You need a 3.5 lb chuck roast, a large jar of Vlassic pickles, and a large jar (I prefer Head Country) barbecue sauce. That is it. You put the chuck roast in the crock pot and pour the pickles on top, juice and all. Turn the crock pot on low and let it cook for 12-15 hours. After that time, take out the pickles and drain the juice off. Pour the BBQ sauce on top and let it get warm. Voila. That is it. It will be the best BBQ you have ever eaten...and I have eaten a lot of BBQ in my days. It is so tender and the flavor is perfect.
That is about all that is going on here for now. My OB appointment is on Friday so I am ready to go to that and figure out where we stand. Things seem pretty stable for now so hopefully we have more weeks of baby growing to go...
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