Tuesday, December 30, 2008
In God's hands, indeed. We have been to the wreck site, we have seen the pictures of the mangled truck he was trapped inside. It is miraculous that he made it to the hospital, that he survived his surgery to repair his internal organs that day, and that he has made it through three long days so far. He is strong, and he is in the fight of his life right now. The fight FOR his life.
I have a hard time believing that the God I love would let him suffer through the last three days just to take him from us. Or to not let him wake back up again. The doctors aren't giving his family a whole lot of hope. IF he makes it through, they say...IF he wakes up...he will probably never be the same again. That's a lot for them to take. To hear these things about their eighteen-year-old son, brother, cousin, nephew, friend. To see him lying in a hospital bed with so many wires and tubes running in and out of his body, a drastically swollen version of himself. To spend so many hours in the ICU waiting room and hallway, unable to see their loved one. Waiting for any report, not knowing what is going on behind those locked double doors that lead to his room. We have spent a great deal of time at the hospital since Saturday afternoon. It is the least that we can do, to give them support and hugs, an ear to listen, a shoulder to cry on. There are so many tears from so many loved ones. It weighs heavy on my soul.
My husband and I have been able to see him twice. I have held his hand and told him to keep fighting and that we love him. I have prayed over him with a complete stranger. Visitation is five times per day, fifteen minutes each time. It is overwhelming how many people line up to see this young man every time visitation rolls around. A flock of 50, 60, 70 people, filing in and out, three at a time. So much love, such a big family, and so many friends. I know why. He is a good kid. He is outgoing, he has a big smile, a great sense of humor, a helping hand, and a sweet spirit.
Please pray with me. He is in God's hands. So...I pray that God's hands will carry him and his entire family through this and bring him back to us.
Thursday, December 25, 2008
9 month well check
Brooklyn saw Dr. A on Friday the 19th. She weighed 14 pounds, 9.5 ounces (still on that 3rd percentile line! Woohoo!). She was 27 inches long (25th percentile). Get this...that means that she has grown 2 inches in 2 1/2 weeks...how crazy is that? 2 1/2 weeks ago at her appointment with Dr. R, Brooklyn was barely 25 inches, which was 3rd percentile. A week and a half later, at Dr. G's, she was nearly 26 1/2. Now...another week later...27! She is growing!
Dr. A's nurse listed off a bunch of milestones and asked whether Brooklyn had met them yet. The answer was "no" for most of the motor milestones. I think the only 2 that we could say "yes" to were sitting up and pincer grasp. No creeping, no crawling, no pulling up to stand, no standing unassisted. However, she is doing great on all of the verbal milestones. Basically Dr. A said that we are just going to have to watch her closely. If she isn't crawling by 10 or 11 months, not standing by 11 or 12 months, then she may need some therapy to help her catch up. He said that her motor development is below average at this point, but "on the cusp of what's considered okay." This worries me. But we'll wait and see what happens. She has been through a lot and there are obviously medical reasons why she is behind.
Brooklyn also does not have any teeth yet. Dr. A said that studies have recently been published that show that babies who are have both slow dental development and slow motor development eventually catch up 100%. They don't know why yet, but there seems to be some kind of correlation. He said that based on this study, the fact that she hasn't cut any teeth is actually reassuring.
The only shot she had to get was her monthly Synagis (RSV vaccine). No other immunizations. I'm sure she appreciated that.
Dr. A also thought that Brooklyn's breathing was starting to sound better! Yay!
Brooklyn, my mom, and I went to Houston to visit family from Saturday until Tuesday. Dave couldn't get off work to go with us. Boo!
Anyway, my grandparents, aunt, uncle, and cousins all live in Houston. My grandparents are the only ones who had met Brooklyn before. Everyone else was dying to see her. She did GREAT on Saturday and Sunday...she let my grandmother, aunt, cousins, and my cousin's daughter hold her and she didn't scream at all! For the past month or two, she will scream her head off if anyone besides me, Dave, or her grandmothers hold her. But we were having a Christmas miracle or something on those two days...she was in an amazingly good mood and would allow anyone to hold her! The nearly five hour car ride down there was also relatively painless!
Monday and Tuesday were not as wonderful. Brooklyn wanted me and only me and was doing her typical scream-bloody-murder-if-mom-puts-me-down-for-one-second. She did not sleep much at all during the nights...which makes for a grumpy, fussy, screaming baby and a grumpy mommy who is short on patience. The ride back home took six hours (damn Houston traffic) and was not so much fun. She did finally take a 2 1/2 hour nap, and we were all ready for it by then. I basically played single parent during the four-day trip and it was TOUGH.
All in all though, we had a great visit in Houston. I had not seen most of my relatives since last Christmas and I had missed them so much! We got to spend every day with them and it was good times :)
The presents are wrapped and under the tree. We will celebrate Christmas with just the three of us here at our house in the morning. We will go to my parent's house to have Christmas with them in the afternoon. My baby brother is on leave from the Army for two weeks and it's always good to have him around. On Friday, we will do Christmas Part 3 with my hubby's family.
I am excited about it all. :)
I'm off to bed...big day tomorrow! Google Reader will have to wait some more.
Wednesday, December 17, 2008
1. Diet. Lose some weight. And I will take some diet pills if I want to! In fact, I will probably take every diet pill I can find (Yes, I'm exaggerating there). I am so grossed out by my fat ass right now. Ugh. Ugh. Ugh. Hate it.
2. Get my tattoo! I'm so excited about it. I'm going to get Brooklyn's footprints from the day she was born on my back. I don't have any tattoos yet. I have always wanted to get one, but could never think of something that I truly wanted on my body forever. My baby's tiny first prints are perfect. I know that I will never regret that.
3. Get my draaaaank on. Come on, it's been a year and a half :)
4. Shrink back down on top. I HOPE. Not that they were ever small.
5. Take medicine when I don't feel good. It's been quite a while since I could take much of anything besides Tylenol.
6. Say "Adios" to the big old hospital grade pump I've been lugging back and forth from the office every day for the past six months! Along with that...I won't have to schedule pumping time twice a day at work.7. Be kind of sad. After all, there is only one time in life that you get to bond with your baby in that way. When it's over, you can't go back to it. I've struggled so, so, so hard to make it work for us. It was not this easy, natural thing that just happened for us like I thought it would. And our situation may not be ideal...she is not exclusively breastfed. We have had to supplement with formula from the very beginning because of feeding problems and her weight. But we have worked so hard and pushed through all of the obstacles so that she could have as much of the very best nutrition as she possibly can. There are things I look forward to about weaning her, but I'm not in a hurry for it to happen. It's important for her. It's important for her health. We're on her timing, not mine.
Sunday, December 14, 2008
Dr. G2 always gives us a copy of his report when he sees Brooklyn so that we can see exactly what he is documenting and sending to her pediatrician and gastroenterologist. His report said that there is "slight improvement" with her noisy breathing and that she is "slowly starting to improve." Slight and slow is better than what we have had in the past. I'll take it!
Brooklyn weighed in at 14 pounds, 4.5 ounces and she was nearly 26.5 inches long! So she only gained about an ounce since her appointment last Tuesday, but she grew an inch! I knew she was growing longer because she has outgrown all of her 0-3 month footy sleepers and a couple of the 3-6 month ones too. Her respirations were 40 and her oxygenation was good, in the high 90's.
Dr. G2 was concerned about Brooklyn's head flattening and the fact that it is somewhat assymetrical. I thought that it was getting better because she is sitting so much now, but maybe I have just gotten used to it. He wants us to try letting her sleep in her crib instead of in her car seat. He talked about trying to let her sleep on her tummy or side, so that her epiglottis would flop forward and let her breathe easier than if she were on her back. She should obstruct less this way, he said. Doing this makes me extremely paranoid because of the SIDS risk. She may not tolerate it anyway because she has always hated tummy time. We are also to call her gastroenterologist and ask them what we need to do to get a Tucker sling for her to sleep in. At first, Dr. G2 said that we needed to stick books or something under one end of the mattress to angle it for her because of her reflux and airway obstruction, but I asked him about the Tucker sling and he said that was actually a better idea. (Thanks, Hope! I never would have known to ask if you hadn't told me about it.) I will work on that on Monday. Oh - he mentioned the possibility of doing another sleep study. I sincerely hope we can avoid going through that nightmare again. We'll see.
Anyway, Brooklyn's appointment went well. No surgery right now and hopefully none at all!!!
Friday, December 12, 2008
I am still very conflicted about Baby Bear having the surgery. I know I have touched on this before, but I am just so sick of putting her through all of these procedures. She has already gone through so much. Surgery terrifies me...I hated it last time. It was so scary to know that my baby was under anesthesia with breathing tubes down her throat...and there are always risks. Especially with someone who is so tiny. And from what I have read and been told, this particular surgical procedure could make her breathing problems worse. Some pulmonologists won't even perform it. But if it really is something that could fix all of her problems and make her life easier, am I a terrible mother for hesitating to do it? Brooklyn deserves to be free of all this. She deserves to be able to breathe without working so hard. She should be able to grow big and strong and be the size of other babies her age. If this surgery would allow her to do all of those things and make her healthy, what kind of mommy wouldn't do it?
Maybe we won't have to make those choices. Maybe Dr. G2 will tell us that since Brooklyn is on the growth charts now, we can keep waiting to see if she will outgrow it on her own?
We will find out in about 10 hours.
Wednesday, December 10, 2008
Thursday, December 4, 2008
In my dream, I was proud of my daughter for learning all of these new skills. But I cried because I was mourning the loss of her as my sweet little baby. She was growing up, and she didn't need me the way she used to.
I've been thinking about this all day. It weighs heavy on my heart and makes me feel profoundly sad. I need to take my dream as a sign that I need to enjoy having a baby while I can. Other things in my life can wait. No one is going to die if I can't get all of the laundry done, if I can't vacuum as often as I want, or if my email doesn't get checked every day. I can live with those things. But I won't be able to live with myself if I don't fully enjoy my baby and if I don't love on her and bond with her as much as I possibly can while she's still small. While she's still a little baby.
Brooklyn won't always need me the way that she does right now. When she wakes up every hour during the night, I need a better attitude about it. I need to think about how lucky I am to have someone who needs me so much, instead of being irritated about lost sleep. I need to remind myself of how fortunate I am to have this little person in my life who cries out in the dark just because she wants so badly for me to cradle her in my arms and make her feel secure. I can make her world okay by holding her little body to mine, nursing her, stroking her hair, and touching her little face. When I think about it....that's such an incredible privilege. My beautiful baby is showing me the purest form of love and complete trust.
This time in her life will be over so soon, and I don't want to regret a single thing about it. I won't get another chance to do it the right way. I want to make everything perfect for her. I want to have the most wonderful memories possible. Because when it's all said and done, Brooklyn is all that really matters to me.
Tuesday, December 2, 2008
The visit with Dr. R was fairly uneventful. He increased her Bethanecol because her reflux is still really bad and she spits up a lot, especially at night. One problem we have been having is that she sometimes spits up about 5 or 10 minutes after we give her all of her medicines, and you can tell that she has spit up the meds, not milk. So then I worry that she isn't getting the benefit of any of her medications. She also spits up a lot even when it has been 2 or 3 hours since a feeding. Dr. R hopes that upping her dosage on the Bethanecol will help with these problems.
He also said that we can start giving her baby food every day now. I was feeding it to her about two or three times per week because her pediatrician didn't want it to take away from the increased calories she gets from her special formula mix (we have to mix rice cereal and extra formula powder into her bottles to make it 30 calories per ounce instead of 20...this helps with her weight gain problems and also keeps her from choking while eating). Dr. R said that since she is gaining now, I can give her baby food once a day and continue with the same regimen with the formula. She is about 50% breastfed and 50% formula fed now. He also said that she may spit up less as she eats more baby food. I'm glad because Brooklyn really loves to eat her baby food! You can tell she is so proud of herself when she gets to sit in her little chair and eat "big girl food!"
The best thing that Dr. R said today was that we are doing a great job and that what we are doing is working, just slowly. He said that he feels confident that Brooklyn will eventually grow out of all of her health problems. Dave told me that he felt like crying with relief after Dr. R said that because we rarely ever hear anything positive at Brooklyn's doctors appointments. It really is comforting to have an expert tell you that you are doing well and that things are finally moving in the right direction.
Brooklyn's next appointment is with Dr. G2, her pulmonologist, next Friday. Supposedly he is going to decide whether Brooklyn needs surgery to correct her laryngomalacia and floppy arytenoids. I am conflicted about this. I would like to avoid surgery if at all possible because I don't want to put her through anything else. But if it would fix everything...then I think I would be okay with doing it...I think. It's scary. I have mixed feelings. I don't know.
I am trying to wait to see what Dr. G2 has to say next week before I worry too much about that. For now, I am trying to let myself enjoy the fact that we heard positive words from one of her doctors today.