A few days late, but Merry Christmas. We had the best Christmas here and it was even a White Christmas. I honestly cannot ever remember having a White Christmas so that was a welcomed change. The drive home from work on Christmas Eve in the ice which should have taken 45 minutes and ended up taking 4.5 hrs was not fun but I made it home anyway so that was all that mattered. I was thinking at one point I would be spending the night in my car in the WalMart parking lot that night but I was actually not too worried. I had a full tank of gas, a cell phone & charger, a Diet Dr. Pepper (most important element), and a DVD player. I was set if it had to be that way. Luckily after a few hours my husband made it to rescue me and we started the treck home. It was only 12 more miles but 12 I was not sure we would make. I was so happy to be home. I quickly go the kids into their jammies and into bed. Kenneth had to be out working wrecks and rescuing people so the female half of Santa put all of the toys together. I was proud of what I was able to accomplish but can honestly say I do not care to use another screwdriver again for a very long time. We spent Christmas morning at our house and then spent the rest with family at their houses. It was low key and so very enjoyable. Carly really seemed more into Christmas this year than ever before. I was not really sure if Anna had any concept of what was going on but she woke us up on Christmas morning and said, "Tree!" so I guess she understood more than I thought she did. For whatever reason Carly wanted an apron and chef's hat so that is what they are wearing in the picture. We rode the 4 wheeler around in the snow and it was just gorgeous that morning. It made every payment we have made on this acreage worth it. Anna had her 2 year old check up and shots today (about a month late, but oh well.) She is up to 24 lbs and 37.5 in tall. That is 20% in weight and 100% in height. That is the highest percentile she has ever been!! She had a stretch where she had stopped vomiting and we were thrilled but she has started it again. She is going to start on low dose Erythromycin next week and we will see if that helps. I know her gastric emptying scan was normal but I still am not convinced that she doesn't have it. The days that she pukes it is not just tube feeds but also food from many hours before. The study showed she did not have a problem on that day. She may not have the problem everyday though, some days will inevitably be worse than others and I think the test happened on a day she was not having problems. Maybe that sounds crazy but to the girl cleaning the puke (that's me) it totally makes sense. She gets Miralax every day too but still gets constipated at times and I think that also plays a factor. Anyway, we will keep moving along until the solution is found. Carly has been a totally different kid since she has been out of school for Christmas break. She went from terrible behavior to the best I have ever seen out of her. I really think school is harder on her than I imagined and also that she picks up a lot of bad habits at school. Homeschooling is not an option for us so I guess we will just have to learn to handle the behavior the best that we can. I am thankful for these good weeks because it reminds me that I do have two great kids and that we are doing a good job parenting them and that they do know how to act. I was really beginning to think I was missing something with Carly and that I was not doing a good job because she had taken a sharp decline. I guess all kids go through good and bad periods and I am really enjoying the good! I hope everyone had a Merry Christmas and also has a Happy New Year! My brother in law will be leaving on New Year's Day for a 6 month tour in Iraq. Please keep him, my sister, and their sweet children in your prayers, they are going to need them...
Tuesday, December 22, 2009
I cannot believe Christmas will be here in 3 days. I was sad that we did not get to go to church last Sunday. Anna woke up during the night running a high fever so I decided not to bless the church nursery with whatever she had. I think it is just a cold because she has had a cough and snotty nose since then. Carly has it too and actually lost her voice one day which was not really all that sad. Kenneth and I are both finally off on Christmas day this year. I think the last time we were both off was like 4 or 5 years ago. I am so excited that we will get to be together on that day. Santa will be happy too since he won't have to make a special trip to our house this year either a day early or a day late. It is such a good thing that he and I have open lines of communication! Carly wants a Nintendo DS (among about a million other things). The list started out short but it was written in November and has long since grown to the length of a roll of toilet paper. Anyway, she politely told my mom that she knew "If Santa doesn't bring me a DS I know you will. Nana, I know you won't let me down." Santa had already received AND PURCHASED her previous request so it looks like the DS falls on Nana's shoulders. Nana had to take back the already purchased gift because she just can't stand to let the little girl down. I guess that's what grandmas are for. Anna continues to amaze us. Her speech is better everyday. She is even occasionally trying to put 2 words together. I love to hear her say "I eat." She is also now able to say "wub ew" (love you) when I tell her I love her. Those are the sweetest sounds I have ever heard. Her favorite word the past few weeks is "ook" (look). Brad continues to work hard with her and we are so thankful for that. I fear the day when she turns 3 and we have to give up Brad. He has been amazing. We are also strongly considering starting Anna in daycare. I had really been opposed to the idea but we have decided it is time for her to be around other kids. She will be enrolled full time but will likely go more like part time. Now that nutrition is a sure thing I am more confident we can keep her well which is what I was so afraid of. I think being with other kids may help her developmentally too. She will be going to the same place Carly went for 3 years. They already know Anna there and I feel confident they will love her just like they did Carly. She will be in the 18 month old class since that is more her level right now. We will see how she does and progress accordingly. I am terrified but at the same time know in my heart it is best for her. I took her up there to talk to the director and Anna cried when we left. She wanted to stay and play. That helped me know it is the right thing for her. After my last post we did have one puking incident so we had to go back to 9 oz. it might have had something to do with her cold but 9 oz is still pretty good. I am now officially a pro at cleaning puke in my sleep (not too much different from the old college party days I guess). On a sad note...a guy I work with lost his 3 year old grandson yesterday. The little boy climbed a dresser which had a tv on top of it. He was trying to get a movie. Instead he pulled the dresser and tv over on himself and it crushed and killed him. Please pray for the Robles family as they endure such a tragic loss. They had just buried their daughter in law a week prior to this. She died after many days on ECMO after catching the swine flu. She was pregnant at the time. She did deliver a healthy baby prior to her passing. It is not ever easy but especially not at this time of year. My coworker had one request. If you have a tv on a shelf or bookcase or dresser please bolt it down and bolt the dresser to the wall. He does not ever want another child to die this way.
Thursday, December 17, 2009
The gastric emptying results are in- completely normal. I am relieved and for the time being we will just keep everything as it is because it is working. Anna is eating some during the day and now taking 10oz tube feeds over 1.5 hrs at night. She is tolerating it fine. We have not had puke in quite a while now. I know that giving a child an adult dose of a medication (Prevacid) is not without consequence but I feel the consequences of surgery are much worse and the risks much higher. So for now, things will stay as they are. Carly is doing better also. Apparently taking a kids toys away will get their attention. So far she has gotten a toy back all days except 1. I had to go to Wal-Mart the other day. I generally am of the opinion that Wal-Mart is a parent's hell. They have everything your kid might want and they have strategically placed it where your child is sure not to miss any of it and is sure to drive you to the depths of insanity pleading for you to buy it. You either are weak and give in or stand strong and become "that mother" with the fit throwing children. Anyway, it was just Carly and I at Wal-Mart that day. We were in that 9th circle of hell for 2 hours. She did not misbehave even once. I was so proud of her. Her school Christmas party was today and we have a fire department tonight. I love this time of year. After the party tonight we will be delivering gifts to the less fortunate kids in this area. It warms my heart to be able to help them and I am quite certain the blessing I get from helping is far greater than any gift they get from us. Again I realize I am blessed beyond measure!
Friday, December 11, 2009
Anna had her GES yesterday. In case you ever have to have one be prepared- it is long! She had to eat this nasty mixture of eggs and chicken and rice soup mixed with some type of radioactive substance. I could not believe she actually ate it. I guess if you keep a kid NPO long enough they will eat anything. Anyway, she ate it and then the test began. They put her on this table and slid her under a camera and took pictures. The pictures took 1 minute for each series. They took them at 1 minute, 5 minutes, 5 minutes, 5 minutes, 15 minutes, 15 minutes, 15 minutes, then we had an hour break then more pictures then 30 minutes then more pictures. She had to be standing up between pictures and nothing to eat or drink. She handled it so well, as she always does. She kept signing "more" every time we took her down off of the table. It is nice but kind of sad how well she does in the hospital setting. She is not afraid of anything there and does not cry because she is so used to it. In case you were wondering- radioactive eggs make for some nasty kid gas!! We should have the results some time next week. It looked to Kenneth and I like none of the food had moved out until after the hour break and then it appeared to be moving nicely. I think Dr. O said something like 50% of the food should be gone at one hour and it did not look like we met that but I am certainly no nuclear medicine interpreter. In Carly news- her behavior was getting out of control and after trying all I knew to do to make it better it just wasn't improving. She has been so sassy and flat out disrespectful. I finally had enough and took ALL of her toys away from her. They are in my room which incidentally now looks like a bomb went off in there. She can earn them back at a rate of 1 toy per day. If at bedtime she has had mostly good behavior for the day she gets to pick a toy to have back. If she has not behaved that day we will take a toy back. We are going on day 3 and so far it is going well. She has made a dramatic transformation into the kid I know she is capable of being. I know a lot of her bad behavior is my fault. I have been overindulgent trying to make up for the fact that we have had to spend so much time and energy with Anna. I am vowing to do better with her. I think it will be easier now that Anna is sleeping, I am less tires, and Anna is kind of "settled" (for now). I know that I have to correct this now or it will only get worse.
Tuesday, December 8, 2009
Anna turned 2 on December 3rd. I had to work that day but spent a lot of time reflecting on the day of her birth and the events that have followed. These have no doubt been two of the hardest yet most rewarding years of my life. As I lay in a hospital bed day after day, week after week, month after month trying to get to a place where Anna could safely be born healthy I only dreamed of the moment I would finally get to hold her. I knew that if only I could make it to 30 weeks, then 32 weeks, then 34 weeks, then 36, then 38 that I would be able to bring home a healthy happy baby. Nobody ever tells you that making it full term doesn't guarantee you anything. So if there is one lesson life with Anna has taught me thus far it is that nothing in life is guaranteed. It has been hard and exhausting and an emotional roller coaster but I wouldn't trade a second of it. Because of this journey I have laughed harder, cried harder, dreamed further, loved stronger, and believed more. I have not only watched Anna grow but I have watched myself, Kenneth, and Carly grow also. We have pulled together and we have triumphed. Happy Second Birthday, Anna Banana! We had a small party on Sunday with mostly family and it was perfect. The best part was that it was not at my house and so when it was over it was not my mess to clean up. Anna ate like a pig all day and I loved every minute and every bite of it.
And in other news...We finally had our appointment with GI. I was able to voice my concerns over how things were handled after the tube placement and with the vomiting, etc. and really felt my concerns were heard and we were able to remedy the situation (I hope). Anna will be having a gastric emptying scan on Thursday. If she is emptying OK then she will need a Nissen Fundoplication. If she is not emptying OK then she will need low dose erythromcyin and if that does not work or if she does not tolerate it she will have a dilation of the end of her stomach. I am not sure what the technical name for that is. She is also getting some granulation tissue at the button site so we are using steroid cream on it 4 times a day. OK, more like maybe 2 times a day because 4 is almost impossible. Anyway, she is tolerating her feeds for now. She is getting two 8 ounce boluses daily. We are supposed to work up to three 8 ounce boluses daily which will provide 1125 calories daily. Anna is looking so much better already. It is amazing the power that nutrition has! We have been having some problems with Anna's pump (Zevex Enteralite Infinity) giving us a "no food" alarm even when the tubing is primed and the bag is full. There are not air bubbles and I have done all of the trouble shooting I can. I have cleaned the machine and all of its sensors but to no avail. It is also sounding like the motor is lagging. If I program a 250 ml bolus to go over an hour, after that hour only about 1/2 of the formula has infused. So it is taking 2 hours to do a 1 hour bolus. I called our DME company yesterday and they are sending us out a new pump today. I hope it works well. If not then we got a bad batch of bags. I have heard that can happen as well. We use Central Line Infusion out of Amarillo and they have been great so far! I hope all goes well with the scan, it is always such a joy to keep a kid NPO. It never fails that you cannot get them to eat until they aren't supposed to and then that is all they want to do. Ah, Murphy's law at work again...
Wednesday, December 2, 2009
The Monday night of my last post was a disaster. It took me about 2 hours to get Anna to sleep and then she woke up at 1am and stayed up until about 5. Of course, Kenneth was on duty. By the end of our non-slumber party I was in tears, so tired and frustrated with the lack of sleep that has been my life for almost 2 years now. The more I cried the more Anna laughed. Keep in mind that 1. the Gtube was supposed to help fix the sleeping problem and 2. She takes 50mg of trazodone and 4 mg of Valium before bed. All of this was enough to make me resolve to do whatever I had to do to fix this problem. I called the neurologist's office on Tuesday and received a phone call back not to long after from a new neuro in the group who was covering for our neuro. Yes, he personally called me (pick your jaw up off of the floor). He said he just had some questions about Anna's sleeping, or lack thereof, and wanted to talk to me about it. We talked for about 20 minutes and his solution was simple. It was this...stop rocking her to sleep, put her to sleep awake, and make her sleep in her own bed. I explained to him that she was getting feeds at night and that I was afraid to put her in her own bed because she gets tangled up in the tubing. He said that I needed to talk to GI then and restructure her feeds or move her bed into our room but that she absolutely had to have her own space. He said we needed to make the Gtube work for us He was kind but very matter of fact about what we needed to do. He did not offer more drugs. Kenneth and I talked about it and just restructured the feeds ourselves. It is terribly difficult to get answers from the GI clinic and when it comes down to it we have to find a solution that works for us. So we now give Anna 250 ml at about 2pm and then 250 ml at bedtime. Each bolus goes over an hour. She is tolerating it for the most part. The best part...ANNA IS SLEEPING ALL NIGHT IN HER OWN BED!!!!!! She usually wakes once about 4:15am but we go lay her back down and she goes right back to sleep. We are new people. I did not realize how bad things really were until now when we are sleeping. I mean, I know I griped a lot about it but I did not really realize all that 2 years of sleep deprivation had done to us. So Anna is getting her calories and we are all getting sleep. She is off of the Valium but still getting trazodone. We will begin weaning the trazodone soon as well. Things are falling into place and reaffirming our decision to get the gtube. Anna is getting her calories therefore Anna is sleeping and will hopefully be off meds soon. Those were our reasons for getting the tube. Praise God that it is working out!! Last night we decorated our Christmas tree and then woke up this morning to beautiful snow. I am excited about Christmas this year. Last year things were still too crazy and fresh and painful but we are in such a different place this year and for that I am so grateful!! I am blessed beyond measure!