Thursday, July 31, 2008
Tuesday, July 29, 2008
I got home from work. I tried to nurse Brooklyn. It only worked for a couple of minutes, and she was pulling off every couple of sucks. She ended up screaming, and Dave made a bottle for me to give her.
I eat dinner, then I go and take a nap, because Dave is working a security job until 6 a.m. I wake up. Brooklyn isn't crying. Dave gives her to me, and she starts crying. I offer her my breast, and she screams inconsolably. She cries. I cry. Dave makes her another bottle and leaves. I just finished giving it to her.
She's asleep. But I'm still crying.
I feel like she doesn't want me. I'm working so hard to continue pumping while working full time and breastfeeding while I'm home. Why? She doesn't even want me. Even her doctors want me to either quit or exclusively pump. I try even harder to make it work. She's sick. She needs the best nutrition that only I can give her. But I can't give it to her if she won't take it. I feel like the most useless person, a ridiculous excuse for a mother.
I will post later about what's been going on with her doctors. We have to take her to Dallas (2 hrs away) to a new pediatric pulmonologist this Thursday. I'm too stressed about this right now.
I don't know what to do....how do I make her eat from me? I know she needs the breastmilk. And why can't I quit crying about this? I just love her so much and I wish I could feel a little of that in return. Is that stupid? Probably.
Thursday, July 24, 2008
According to the scale at Dr. G's, Brooklyn was 10 pounds, 8 ounces, instead of the 10 pounds, 4 ounces she had weighed at Dr. A's the previous evening. Her oxygenation was 98%, and her respirations are still kinda high, at 36.
Dr. G came in and asked me several questions about Brooklyn's weight issues, but really wouldn't let me answer. He would cut me off and look through her chart. I was trying to tell him what her weight had been the past 2 weeks at Dr. A's. He told us that Brooklyn is gaining weight because his scale shows 10 pounds 8 ounces and it is calibrated every day. His scale is right, he said, Dr. A's scale is wrong. "The baby is gaining weight," he kept insisting.
Now...it doesn't matter to me whether Brooklyn weighs 10 pounds 4 ounces or 10 pounds 8 ounces. Yes, either weight is too small to begin with. But Dr. A's concern was that she essentially was the same weight 2 weeks in a row and was not growing. Regardless of whose scale is the correct one, the point is that she was weighed on Dr. A's scale, the exact same scale at his office, 2 weeks in a row, and the number did not go UP. That's the issue...right????
Dr. G examined Brooklyn and then said that he was going to schedule the bronchoscopy for this Friday. He called the nurse in and told him to go set it up. Dr. G advised us that Brooklyn would have to be admitted to the hospital and stay that night. This is because of scary potential complications like bleeding from her lungs and nose and allergic reactions to anesthesia. (I didn't know this was the case...no one has really been explaining this to us...so you were right, Hope). I asked him if it really needed to be done, or were the potential risks of administering anesthesia to a 10 pound child really worth it. He replied that he would rather wait because of the risks, but was going to do it since Dave and I were pushing for it. Huh????
We told him that we were not pushing to have any procedure done. We do not want Brooklyn to be exposed to any risks or go through any pain that is not necessary. If she needs it, that's fine. But I don't want her to go through anything else that will hurt her. We told him that Dr. A had told us that we needed to come in sooner and needed to have the scope done. So we are postponing it for now. Same with the MRI, because it also requires sedation.
Dr. G said that he was going to have a home health agency provide us with a monitor that we will put on Brooklyn's toe or finger that will continuously check her oxygenation while she is sleeping for several nights. Apparently, even though her readings are good when she's awake, it can drop when babies are asleep. But he didn't give us any further info on this. I don't know if I'm supposed to call someone...who? Am I waiting for a call? I don't know.
We then discussed Brooklyn's reflux and the fact that we have not seen any improvement with the medications Dr. G put her on. She is also choking and coughing more, and not just while eating. Dr. G asked if we were putting rice cereal in her milk to thicken it up and help keep it down. We said no, because Dr. A had told us to hold off on giving her any kind of cereal. Dr. G got all upset and was saying that he didn't want to make any more recommendations if Dr. A was not going to abide by them. He went and got us some pamphlets about this thickening agent we can add to Brooklyn's milk to help her keep it down.
"Okay," I said, "so this is the plan, you want us to get this and put it in her bottles."
"Well, I don't know," said Dr. G. "I told you that I wanted you to put rice cereal in her bottles and Dr. A told you not to do it, so I don't want to tell you to do anything if he is going to disagree."
"So do we do it or not?"
"You can if you want. It's not going to hurt the baby."
I told Dr. G that I just wanted to know what to do to help my daughter. He said that he would call Dr. A and then I could either call Dr. A, or maybe Dr. A would call me.
"I just want someone to tell us what to do," I told him.
We were never really given an answer. And no one has called me yet today. I have a call in to Dr. A to discuss yesterday's appointment. We'll see if I hear anything back.
I have a major problem with the lack of communication between our pedicatrician and our pulmonologist. I am leaning towards thinking Dr. A, the pediatrician, is right. Mainly because I don't feel like Dr. G really cares about Brooklyn. We had the problem with getting him to call in her prescriptions two times. And he didn't send a report to Dr. A regarding Brooklyn's initial visit with him for over 3 weeks. He's going be get upset about Dr. A not following his recommendations, but yet he didn't send said recommendations to him for more than 3 weeks. Dr. A had nothing from Dr. G in Brooklyn's file at her 4 month visit last week. And Dr. G is denying what Dr. A's concern is...that Brooklyn isn't gaining weight. It's like he is looking to have a pissing match with Dr. A. Over what? How stupid. Can we please keep in mind that there is a sick baby in the middle of this? Can you just tell us what to do to help her get better?
Tuesday, July 22, 2008
10 pounds, 4 ounces. She lost half an ounce.
We had followed the doctor's advice by increasing the amount of powder we put in her formula. Brooklyn is primarily breastfed, but we had such a hard time with it in the beginning that my supply has just never been quite what it should be. She probably gets about 2 bottles of formula per day, and the rest is pumped breastmilk and breastmilk straight from the source. Dr. A. had increased the formula powder so that Brooklyn would get 25 calories per ounce instead of 20. No improvement.
Dr. A. said that he had a discussion with our pedicatric pulmonologist last week in which the pulmonologist said that he wants me to quit breastfeeding. That if I want to give her breastmilk, it should be pumped and given to her in a bottle so that she isn't burning so many calories while actually feeding from the breast. Which is quite time consuming....and would be fine if I were staying at home with her. For the first two months of her life I had to breastfeed Brooklyn, supplement her with formula or pumped milk, then pump. Every two hours. As soon as I was finished with that, it was practically time for the next feeding. I don't see how this is possible to do while I'm working. I'm struggling to make time to pump twice during my work day.
This is really upsetting for me because:
1. I am worried about what could be wrong...I mean, I know the tracheomalacia and reflux make it hard for her to gain weight...but I am worried about what else could be going on...
2. I am failing as a mother because I can't get my baby to gain weight...
3. I have worked too effin hard to make breastfeeding work for us to just give it up...
4. I know that breastmilk is the best thing for Brooklyn, and her health problems make it all the more important for her.
Dr. A. says that I have "a little bit of time"...a week or 2....to decide what I am going to do about the breastfeeding situation.
The treatment plan at this point is as follows:
-We will increase the formula to 30 calories per ounce.
-We will give her at least one more bottle of formula per day (I am thinking this will probably get puked up because of the reflux).
-Dr. A increased her Zantac to 0.8 ml, 3x per day.
-The pulmonologist is supposed to call us tomorrow (yeah, we'll see if that really happens) to move her appointment up. Brooklyn was supposed to see him on July 30. They are supposed to get us in this week. Brooklyn will have the scope (bracheoscopy) done at this next appointment :(
-She will also probably have to have an MRI. She will have to be sedated for this as well. They are looking for "anatomical abnormalities," such as a cardiac vessel that can sometimes wrap around the airway and constrict it).
This is so frustrating. Why can't something as seemingly simple as a baby gaining weight be any easier? Why can't I just do this right?
Monday, July 21, 2008
We didn't do a whole lot on Saturday. Jordan was released on his pass that morning and just hung out with us all day. He and my dad went to see a movie and my mom, Brooklyn and I went to the salon so I could get a much-needed haircut. The last time I had one was when I was 7 or 8 months pregnant! Anyways, I had about 5 or 6 inches cut off. It looks better and is much lighter and cooler in the 100 degree heat.
When we took Jordan back to Fort Sill on Saturday night, we were sitting around outside the barracks with him until he had to go inside. This other soldier's wife was sitting near us and had a baby girl in her lap.
"How old is your baby?," she asked me.
"Four months," I replied. "Yours?"
"Seven months." HOLY CRAP. This baby's thigh was at least as big as Brooklyn's waist. I know babies are like the rest of us...they come in all shapes and sizes, but whoa!!!
"How much does she weigh?," the girl inquired.
"10 pounds. What about her?"
"35 pounds." OMG!!!
Now, I'm not one to criticize other people's parenting methods. After all, I'm new to this too. But then the little girl started spitting up something brown. Her dad said, "That's because you gave her that whole damn bottle of Dr. Pepper!" as he pointed at an empty 20 ounce soda bottle sitting next to a sippy cup. Poor kid. All things considered, I think it is probably better for Brooklyn to have weight gain problems than to be in the shape that baby girl was in. Maybe some people just don't know any better.
Eventually the time came for us to tell Jordan goodbye. It was kinda tough. I hated seeing he and my mom cry :( But his AIT school is only 7 weeks long, and he will be home for 2 weeks after that. I think the next goodbye will be harder, because he will be leaving for his permanent duty station, wherever that may be.
Brooklyn did pretty well on the ride home. I was very impressed with her for the entire trip...she slept through the night all 4 nights we were there! I am very thankful for that!
We stopped for lunch in Denton, where I went to college. It has only been 4 years since I graduated, and I was getting sooooooo lost trying to direct my dad to one of my favorite restaurants there. We finally found it and it was no longer Bari's, it was now called Fera's. And they were closed on Sundays. All that for nothing!
We didn't get back to my house until 9:30 at night and I still had to do laundry and some unpacking. Hubby was at work and had left the house quite messy. I got frustrated while cleaning up behind him. He was off for 3 damn days, but uses his off days as play time and doesn't get anything done around the house that needs to be done. Grrrrr. So needless to say, I am a zombie at work today. And I have waaaay too much to get done here. Blah.
Our trip was good, though. I'm glad we went.
Friday, July 18, 2008
Brooklyn did great during the car ride to Oklahoma. We only stopped twice, once to eat and another to get gas and change and feed the baby. We got here in just over six hours...a little past midnight. She had two screaming fits in the car, and they weren't that bad...maybe 20 minutes each. One was during the time she has to wait between taking one of her medicines and eating. The rest of the time she was either asleep or playing happily.
Then Brooklyn let me sleep from about 2:30 a.m. until 8:00 a.m. on Thursday. We went and watched demonstrations of what my brother, Jordan, has been learning in Army boot camp. It was pretty neat to see what a lot of their physical training has consisted of. It was HOT on that field...but fortunately, the sun stayed behind the clouds throughout the demonstration. I got a little sunburned, but Brooklyn did not, thankfully.
Jordan was released to us and got to spend the day with us. He looks great...so muscular and trim, and so mature. My baby brother is all grown up and a SOLDIER now! I am so proud. It's great to see him. He has made incredible changes in his life this year. He now clearly has confidence in himself and pride in serving his country. Amazing. We went out to eat and hung out back at the hotel until he had to return to the Army base.
This morning was Jordan's graduation. Brooklyn had slept through the night again, this time from 11 p.m. until 7:30 a.m.!!! Wow! So I was feeling good, and I could tell she was happy too. I wore her in her sling to the graduation. She was so nice and quiet during the ceremony! She slept through most of it. She woke up a couple of times and started to fuss when loud noises scared her, but I just bounced her a little and she calmed down. The graduation was really cool...I had never been to a military ceremony before. Jordan was so serious and professional-looking, dressed up so sharp in his class A uniform. He is official now!
I'm back at the hotel now. We went to eat lunch, and Jordan wanted to go buy some CD's. Brooklyn has been fussy at lunch and finally went to sleep, so we are staying here for a bit so she can rest and I can pump. We will drive back home tomorrow afternoon. I hope that car ride is as good as the other one!
Wednesday, July 16, 2008
Yesterday, she had her 4-month check-up with her pediatrician. Dr. A said that she is doing beautifully developmentally. He said that she is actually reaching some developmental milestones early. She is getting longer...she was 23 inches long (25th percentile). That's the good news.
The bad news is that Brooklyn is not gaining weight like she should. She weighed 10 pounds, 4.5 ounces yesterday. This puts her below the 3rd percentile. Dr. A is concerned about her "failure to show adequate weight gain."
The problem, he thinks, is that #1 - she has reflux, so she is spitting up too much of her food, and #2 - her tracheomalacia is causing her to burn too many calories because she has to work so hard to breathe all of the time.
I am frustrated and upset at myself about all of this. I know I didn't have a blog for the first couple months of Brooklyn's life, so I haven't told y'all about all of the weight gain problems we had for her first two months. She was 3 weeks early and weighed 5 pounds, 14 ounces. She had a really bad case of jaundice and a heart murmur. So when you combine those things with being a little early and small...let's just say that feeding was not an easy thing for my little girl. She was sooooo tired and wanted to sleep all of the time. I would try to get her to nurse and she would just fall asleep. She couldn't latch right or stay latched because her muscles in her jaws and tongue weren't finished developing yet. The same thing would happen with bottle feeding. For the first couple of weeks, it was a struggle just to get her to take 10 or 20 cc's of pumped milk, drop by drop, from a syringe, every 2 hours. She dropped down to 5 pounds, 2 ounces. I was so stressed out. I was so worried that she was going to die, or be horribly sick, or readmitted to the hospital, or that the doctors would think that I wasn't feeding my baby and have her taken from me. What the hell was wrong with me? I couldn't even feed my own baby! What kind of a mother can't get her child to eat? She was so skinny and it made me so sad and afraid. We were constantly at the lactation consultant's office and at the pediatrician's, having weight checks and changing our strategies on how to get Brooklyn to eat and grow. It took her a month to get back to her birth weight, but slowly and surely, she did it. That's the short version of the story.
All that to say...she has been growing and gaining since then, and I really thought that the weight gain problems were behind us. Yes, we have other medical issues to deal with now, but I thought we were safely past the weight gain struggle.
So now we are back to weekly weight checks at the pedicatrician and weekly visits to the lactation consultant. Dr. A consulted with our pedicatric pulmonologist, and he also wants us to give Brooklyn at least 2 bottles of formula a day in addition to the breastmilk. We have to add extra formula powder to the bottles to add calories, or our lactation consultant can provide us with preemie high-calorie formula to supplement with (again).
My poor little girl. I feel like we are going back to where we started.
Tuesday, July 15, 2008
I am excited to see my brother and I really want to see him graduate. However, the whole road trip thing has me pretty stressed out. My hubby is not going with us because he has a training class for work that he has to attend all week. So it will be Brooklyn, my mom and dad, and myself. My grandparents on my mom's side will be meeting us in Oklahoma. We will leave on Wednesday evening and be back Saturday afternoon.
The first thing that I am freaking out about is packing. I cannot believe all the stuff I am bringing for Brooklyn! The tiniest little person...with waaaaay more stuff than anyone else! Suitcase with her clothes, lap pads, burp cloths, blankets, and tolietries, diaper bag, pack of Huggies, wipes, formula can, breast pump, Boppy, swing, car seat, medicines and syringes, bottles, dish soap and bottle brush, bottle drying tree, sling...what else do I need? I'm sure I am forgetting something really important!!!
I hate travelling with my dad. He always made family trips so miserable when I was growing up by just being an asshole. He gets all stressed out and grumpy and makes everyone miserable. Then we throw in the possibility that Brooklyn will have one of her nighttime multi-hour screaming marathons in the car. Not fun for anyone!!!! And I don't really know how my dad will react to the shrieking. Not well, I would imagine.
It's a six-hour trip. We will leave as soon as I get home from work tomorrow. That would put us in Oklahoma around midnight only if we didn't make any stops, which of course won't happen with a newborn baby. And stops for gas and peeing. Who knows what time we will actually make it there. Did I mention that when I was a kid, I had a ridiculously small bladder, and my dad would hardly ever stop when I needed to pee? So I would get so stressed out about it that I would only drink a few sips of water for a 2 or 3 day trip out of state. That still makes me nervous!!! But I digress.
Then we will get to the hotel. Brooklyn has been doing pretty good on the sleeping at night for the past couple of weeks, except for the last two nights, when she has slept about 2 hours. But I still can't really sleep when it is me and her alone. And we will be alone in our hotel room for 3 nights. I am freaked out by that. What if something happens to her???
I just have to keep reminding myself that this is a good thing...I get to see my baby brother. I get to see him as a soldier. He is super excited to see all of us. I am so proud of him. He has really turned his life around over the past few months. He made a very mature and responsible decision to enlist in the Army. I want him to know that we support him and love him and show him how proud we are of him.
So...keep us in your thoughts, I am going to remind myself to take deep breaths and calm down. Hopefully it will all go smoothly. I hate to sound negative. I know it sounds like I am just stressing myself out needlessly by expecting the worst. But that just seems to be the way my brain works lately.
Can anyone tell me about your experiences traveling with babies? How do you keep your sanity? Any tricks for keeping baby calm in the car? I always appreciate your words of wisdom and experience :)
Saturday, July 12, 2008
Thursday, July 10, 2008
Brooklyn can laugh now! She started doing it about a week or so ago. I have only made her do it once or twice. She thinks Daddy is hilarious, though. He makes her laugh a lot. It is the cutest little noise. I love seeing her smile...it just melts my heart in an instant...so her laugh is all the more wonderful.
She is growing too...I am pretty confident that she will show some good weight gain at her doctor's appointment next week. I can tell that her little legs are getting chubbier and she is getting more of a tummy.
Brooklyn, thank you for coming into my life 4 short months ago and making me your mommy. You are the most amazing, beautiful, smart, sweet and brave little person I have ever known. I could never do anything good enough to deserve you. It's impossible to believe that I had anything to do with the creation of a being as wonderful as you are. I can't imagine my life without you in it, and I realize now how empty it was before you came along. You have made my heart grow as you have taught me about love in its purest, most beautiful form. I love you more than I could possibly ever explain. Forever and ever and ever.
Sunday, July 6, 2008
Over the past couple of weeks, I have been asked by several online friends what Brooklyn's tracheomalacia sounds like. Believe me, I had no idea what it was until about 2 months ago, either! So I'm posting 2 video clips from this week here...one of her when she's awake, and one when she's asleep. Sometimes the stridor is a lot louder than this, and sometimes it's quieter. But yes, it's pretty much always there. This will help explain my anxiety over her breathing!
Wednesday, July 2, 2008
I am proud of my little baby bear!
Oh...AND...she slept almost 8 hours straight last night!!! This nearly doubles our previous record of 4 1/2 hours in one stretch. Yaaaay Brooklyn! Let's hope for a repeat performance tonight!
She has been trying to suck her thumb for the past couple of weeks. She can suck her hand, and sometimes get her thumb extended, but just can't quiiiiite get her thumb in her mouth to suck. Not for more than a second anyway. That's what she is doing in the picture here. As you can see, Brooklyn is very pleased with herself!