Sunday, August 31, 2008

It's a mystery

Here is Brooklyn having her esophogram on Friday. The esophogram during which the pediatric radiologist told us that Brooklyn does not have a vascular ring.

I have weird feelings about this. I suppose that I should feel nothing but relief. I am relieved. But I am also so damn frustrated.

Don't get me wrong. It's not that I wanted Brooklyn to have a vascular ring. That's not the case. The prospect of surgery on one of her cardiac vessels scared me. I just want to know WHAT is wrong with my baby. Dave and I really thought that they were onto something with the whole vascular ring thing, it all made sense. And the surgery would have fixed it and made both Brooklyn's breathing problems and weight gain issues go away. When Dr. A called me on Thursday before we went for this test, he said, "I really think we are about to get some answers."

Nope. Not yet. Once again, this wasn't it.

Brooklyn's video swallow study was also "fairly normal." She has an "immature suck pattern" in which she sucks about 3 or 4 times and then takes a break. She tires quickly when eating as well. The speech pathologist told us that normal babies her age suck 30 to 40 times before stopping for a break. This is due to her respiratory problems. It does improve somewhat when she is given thicker fluids. But we already give her formula with rice cereal in it, so they didn't really tell us anything we didn't know. The test was quite brief, and she never choked or aspirated during it, so they didn't get to observe that. The speech pathologist gave us some different bottle nipples to try and said, "This will get better when she grows bigger and puts some weight on." But HOW??? How is she supposed to do that when no one can even figure out what's wrong with her? We stayed around Dallas and went to malls and out to eat Friday, and I kept seeing all these 2 and 3 month old babies who are so much bigger than my sweet baby girl. And she will be 6 months old next week.

I am having such a hard time with seeing how Brooklyn's case could possibly be so complicated and so unusual that no one can figure it out. I am sick of running into brick walls. I am so tired of having to put my baby through all of these tests and not getting anything in return. It's getting really difficult to justify the pain, fear, and discomfort that Brooklyn keeps having to endure. I HATE doing this to her. It's worth it if you can find out the problem. If you can tell us what to do to make her better. But it all seems like it is for nothing. Everyone agrees that there is a serious what is it?

Thursday, August 28, 2008

I've got my fingers and toes crossed

I just got a call from Dr. A, Brooklyn's pediatrician. I've been playing phone tag and waiting for calls from both him and Dr. G2 (the pulmonologist) all week. Dr. A said that Dr. G2 has studied Brooklyn's upper GI films and is "concerned that there may be a vascular ring." Apparently, the upper GI x-rays are not the greatest quality, and no one can really tell for sure.

We have Brooklyn's video swallow study tomorrow morning in Dallas. Both doctors believe that this will be able to show whether or not she has a vascular ring. I hope it really does tell them, one way or the other. We are so tired of putting our baby through all of these tests and procedures and not getting any answers.

Dr. A also said that "We didn't get many answers from the sleep study because it wasn't an ideal study." Um. Yeah, I could have told you that. I wonder what the report says...I told Dr. A that the sleep study was a nightmare, and he said, "Yeah, that's what I heard."

So. Test tomorrow. I hope, hope, HOPE we get some answers from it. Please, just someone tell me what is wrong with my sweet baby and tell us what we can do to fix it. That's all I want.

And other unrelated frustrations of the day....
1.) I had my annual check up with my OB/GYN today. I weigh nearly 5 pounds more than I did at my 6 week postpartum visit (4 months ago). Lovely.
2.)The human resources lady has not called me back (again) and I don't know what to do. We now have to go to Dallas next Tuesday to see the pediatric gastroenterologist. It will be almost completely without pay as I have one hour of vacation and sick time now.
3.) I got into a hurry and left the house this morning without kissing Brooklyn and telling her goodbye and that I love her. This is the first time I have ever done that. I feel so guilty about it. What a horrible thing for a mommy to do. I almost turned my car around and went back when I realized it, but I was already running 15 minutes late. I should have just gone back. I am so sad about it.

Monday, August 25, 2008

Babies and sleep studies - a ridiculous combination

Thursday night, we made it to the sleep clinic in Dallas at 8:00 on the dot. A tech showed us to Brooklyn's room. It is a pediatric sleep clinic, so they have each room decorated in a cute kid's theme. Our room had beach stuff all in it, including a big stuffed Nemo hanging over the bed. It was basically like a kid's hotel room: twin-sized bed, rocking chair, fold out couch for the parents, TV and DVD player, and a nice bathroom.

The tech hooked Brooklyn up to lots of electrodes. I lost count of how many there were. She had them all over her head, on her jaws, her forehead, by her eyes, on her chest and collarbone and on her calves. She had an elastic band with some type of monitor around her chest and another one just like it around her abdomen. She had a pulse ox monitor on one of her feet. All of the wires were about 3 feet long and were hooked into a box that we had to move around every time we needed to move Brooklyn. This made diaper changing, nursing, and especially trying to calm her down very, very challenging.

The tech wrapped Brooklyn's head in gauze to try to keep all of the electrodes on because she wanted to tug on all of the wires. Around 10:00, I nursed Brooklyn and she dozed off. The tech had told us that he wouldn't put the cannula on her nose until she was actually asleep, so I let them know. But as soon as we tried to move Brooklyn, she woke up. David stayed at the clinic until about 11:00 and tried to help me get Brooklyn to sleep. She didn't want to sleep. I really don't blame her...I'm sure she was uncomfortable with all of those wires all over her. This was about the time that she became really fussy. I bounced her in her car seat and she finally fell asleep...until I stopped bouncing for a few seconds. Then she wouldn't go back to sleep.

By midnight, she was having an all-out screaming fit. I don't know whether this is to be expected, but when she started throwing a fit, her heart rate got really high (180's and 190's), and her oxygenation started dropping fast. The alarms on the pulse ox machine started going off when her oxygenation was in the 70's. I got freaked out and ran down the hall for help when it was in the 50's. There were two techs in the nurses and no doctors. Brooklyn was doing this horrible pain scream. They checked to see if anything was pinching or poking her, and it wasn't. The monitors eventually couldn't read anything and dropped to 0.

I got her back out of the carseat and finally calmed her down. I would have walked her around the room, but I couldn't because of all the wires. I bounced and rocked her back and forth in my arms and distracted her with her musical keys and her Gloworm. After about 30 minutes of that, she was calm again, so I tried to put her back in the carseat. Bad idea. Another screaming fit, more alarms. This time I calmed her by giving her 2 ounces of formula in a bottle. As soon as she finished, she was upset again. She was arching her back and coughing and gagging because of her reflux.

Brooklyn cried and cried and cried. I changed her diaper, I tried to burp her. She had taken all of her medicines for that day. I sang to her, whispered to her, rocked, bounced, etc...etc...I told the techs I didn't know what else to do. I was so exhausted because I had worked all day. And I was so frustrated because I knew that they weren't getting the data the doctors needed from the sleep study.

Around 2:00 in the morning, one of the techs said that if I could get her to sleep with me holding her, that would be fine. She suggested that I nurse her and then hold her and we could both sleep. So that's what I did. Sort of. I was really nervous that I was going to drop her or that she was going to suffocate or something, so I couldn't sleep. At 3:00, Brooklyn was so out of it that I was able to gently set her in her carseat. A tech came in and taped the cannula to her pacifier. Brooklyn spit the pacifier out within a few minutes and wouldn't open her mouth to let us put it back in. They didn't want to put it on her nose because it might wake her back up. So I don't think they really gathered any data regarding her respirations and whatever else that is supposed to keep track of...which seems like it would be pretty important in her case.

I slept some between 3:00 and 4:30. The alarms on the pulse ox monitor would go off every time her oxygenation went below 80, and that probably happened 3 or 4 times during that hour and a half. The techs came in and out a couple of times to check on her. At 4:30, Brooklyn started getting gassy and woke up. I gave her her pacifier and rocked her carseat. She went back to sleep. This happened several times. Then she woke up with the hiccups. Then she had a dirty diaper. I got her out of her seat and changed her. By then, it was a little after 5:00 a.m. and the tech came in to tell us that the test was over. He sprayed this baby oil-like stuff on all of the electrodes and pulled them off. David picked us up and we headed home. Wouldn't you know it, the little stinker slept the entire trip back.

The sleep study was a completely frustrating experience. I don't think she slept long enough for them to really be able to tell anything. I know her respirations weren't monitored. And my poor baby just had an all-around horrible night. I think it is going to end up being a pointless waste of money.

We go back for the video swallow study this Friday. Hopefully it won't be as bad.

Thursday, August 21, 2008

You are getting sleepy...very sleepy...(I hope!)

Brooklyn's sleep study is tonight. We will make the 2+ hour drive to Dallas as soon as I get home from work today. I am kind of nervous about it. I always have some anxiety about road trips with Brooklyn. But she did great 2 weeks ago, and I'm hoping for a repeat performance.

We have to be at the pediatric sleep clinic by 7:45, and the sleep study is supposed to be from 8 p.m. until 5 a.m. One major problem there - Brooklyn usually takes a nap around 7 or 8, wakes up by 9, and then doesn't actually go back to sleep for the night until about 1 in the morning. sleep = no sleep study, wouldn't you think? But I don't know what to do about it. I'm hoping she will take her evening nap on the way to Dallas, but then she will probably be awake for a few hours. She also only sleeps if she is in her carseat (that's been her "bed" because we have to keep her upright when she sleeps) or if she is being held. I don't know if they can hook her up to all the wires and stuff if she is in her carseat. If she has to lay in a baby bed, I really don't know if she will sleep at all because she isn't used to it. I really hope that she will sleep so that the test will tell us what we need to know.

Just to update you on what else is going on, yesterday Dr. A's office called and said that they had a radiologist look at the films from Brooklyn's upper GI and he was "unsure" whether the films showed a vascular ring. Dr. A's office overnighted the x-ray on a disc to Dr. G2 in Dallas. I talked to him yesterday also, and he told me that he will look at them and if he can't tell whether there is a vascular ring, he will have a pediatric radiologist view the films as well. He said that Brooklyn might also have to have a CT scan of her chest if they can't tell for sure from the upper GI.

The clinic that is going to do the video swallow study said that there was no way they could see us this Friday. So we get to drive back to Dallas next Friday morning to have that test done. I wasn't worried about that sounded like no big deal...but I read a blog post last night about this type of test and it sounded pretty bad. I kind of wish I hadn't read it. I like to be prepared, but I often just end up stressing myself out more.

I brought the letter Dr. A wrote me to work yesterday and took it to go talk to the human resources lady in person. It had been 2 weeks since she had told me she would check on things with the sick leave pool and call me back. She said that the county is following local government code and doesn't have any room to make exceptions. The sick leave pool cannot be used by an employee to care for a dependent, it can only be used if the employee is sick or injured. Apparently I can't even apply for the sick leave pool because my situation is not one that is even eligible to be considered by the board. She said that she would talk to a couple of the county commissioners to ask whether they can arrange to let other employees donate sick time to me if they so desire. But she said that's all they can do. I really, really, really don't understand that. The time is needed to take care of an INFANT. She cannot care for herself! I have a doctor's letter that says she cannot be in daycare and that I need to be home with her for a few months to manage her medications, treatments, and take her to all of her appointments and tests.

I am so frustrated with the whole situation. Could someone please win the lottery and just help me out a little here? We don't need much...just maybe a year's salary would be nice...just enough to make it...

Tuesday, August 19, 2008


I was reading one of my baby development books the other day, and it said, "Your baby will see his/her pediatrician five times during the first year." Haha. You authors are hilarious. We've had more visits than that during the month of August alone.

We were at Dr. A's office until nearly 7 p.m. Monday. He was kind of late seeing us, but I don't mind because he is always so good about spending plenty of time with us and working with us to try to do the best thing for Brooklyn.

Good news first....guess who weighs 11 pounds, 7 ounces!!! Go Baby Bear! I literally clapped my hands and cheered when the numbers came up on the scale. Wow. Dr. A said that Brooklyn is "back on the growth chart...but just barely." I'll take it. It feels like a victory after being completely off the charts the past month or so. We are going to continue the 30-calorie supplements and are also going to start adding cereal to the formula supplements. I hope the weight gain continues.

(***Question: A work friend asked me today if the weight gain was due to the inhaled steroids in Brooklyn's breathing treatments. I honestly hadn't thought of that. I will ask her doctors about it, but does anyone know the answer? If so, is it "real" weight gain? Is it a bad thing for a baby to gain weight from steroid use?)

It appears that Brooklyn's aspiration over the weekend is because her new meds are not working as well as the old ones...and honestly, the old ones didn't do that much for the reflux either. Dr. A called Dr. G2, the pulmonologist, during our appointment. They talked and they both disagree with Dr. M, the ear nose and throat doctor, who thinks that Brooklyn's only problem is a really, really bad case of reflux. Brooklyn is going to keep taking Prevacid and go back on Zantac and Reglan (higher doses this time). The doctors feel that if her breathing problems do not completely disappear over the next few days on these maximum doses of reflux meds, it basically proves that the reflux is not why she has her respiratory issues. So far, no changes.

Dr. A pulled up the images from Brooklyn's upper GI that she had a few months back. He thinks he may see a vascular ring on it (a vein that wraps around and constricts the esophagus and airway). If there really is a vascular ring, it would require surgery, but the surgery should completely eliminate Brooklyn's breathing problems. Dr. A was supposed to have a radiologist as well as Dr. G2 look at the images today and call me back, but I didn't hear anything back from him yet.

Brooklyn's sleep study is Thursday night. I am trying to schedule her video swallow study for Friday morning so that we can take care of both tests in one trip to Dallas. I also did not get a call back from them today. Sigh. Dr. G2 had told Dr. A that this would not be a problem, so I hope we are able to do it. The video swallow study should also help either confirm or deny the presence of a vascular ring.

Oh....Dr. A wrote me a letter last night. It basically listed off all of Brooklyn's medical problems and then recommended that I be allowed to stay home with her for "as little as one month but possibly as long as several months" to take care of her. It explained about all of the specialists she is seeing, upcoming tests, medication regimen, breathing treatments, etc. So now I just have to figure out who to take it to at work and see if they will do anything to help me. I was told by human resources that the sick leave pool was strictly for the employee, not for the employee to care for a dependent. After I tried to explain our situation to the human resources lady, she said that she would check with some of the board members and call me back. That was almost 2 weeks ago. Yet another call I am waiting on...

Monday, August 18, 2008

A not-so-relaxing weekend

This pic is of my lovely little Baby Bear all ready for bed! She has to sleep upright in her car seat due to her reflux and tracheomalacia.

On Friday, I finally got the referral for Brooklyn to see the pediatric gastroenterologist. The I called the gastroenterology office at Children's Medical Center and was told that Brooklyn could see a nurse practitioner on September 8, a doctor on September 18, or the doctor that her pulmonologist actually wanted her to see in late October.

"But she's supposed to see Dr. R. And she's a baby...and she's not gaining weight. She can't wait 2 months."

"Then you need to get her doctor to call and say that he needs her worked in sooner."
Unfortunately, both Brooklyn's pediatrician and her pulmonologist were on vacation. Lovely. I am so tired of the way all this medical stuff works. I obviously have openings, you just won't take my word that Brooklyn needs to be seen sooner. Ugh. Frustrating.

Saturday, my mom, Brooklyn, and I were going to go shopping. Tax-free weekend, woohoo! I laid Brooklyn down to change her diaper when we were about to leave. She vomited and ended up aspirating. It went up her nose and she also inhaled some of it. Her breathing turned all rattly and she was making these weird groaning noises. I called a nurse and was told to keep her upright for a couple of hours until she could clear it out. She was fine after less than an hour, but we ended up just staying at home.

Then, about midnight, Brooklyn started screaming and crying inconsolably. I had never heard her screams sound that sounded like she was gargling. She was also coughing a lot. I started panicking and called my hubby. He told me to call our pediatrician's 24-hour nurse line. While I waited for them to call me back, Brooklyn finally calmed down. I laid her across my lap, face down, and rubbed her back in case she needed to spit anything up/out. She kept making this pitiful sad noise. The nurse called me after about 10 minutes. She said that when she heard Brooklyn on my message, she was going to tell me to take her to the emergency room, but since Brooklyn wasn't screaming and making the gargling noise anymore, she told me to stay at home and keep an eye on her.

Brooklyn was making the same groaning noise and coughing last night. She also spit up a lot. So I don't know what's going on. Needless to say, I didn't sleep a whole lot this weekend.

I just got off the phone with Dr. A's nurse and we are taking her to see him at 4:15 today. Hopefully they will be able to tell me what's wrong!

Friday, August 15, 2008

The space between us

I never, ever, ever would have thought that starting a family would be so hard on my marriage.

Last night, my hubby told me that he doesn’t feel close to me at all anymore. He wanted to know whether I still loved him. If I knew that he loved me. He said that he feels completely useless and unwanted.

Not that any of this was really news to me. We have had abbreviated versions of this conversation several times over the past few months. There is such a distance between us now. I think it’s just the stress we’ve been under, but I don’t know. We don’t have time for each other. We are often in the same room but barely talk to each other. We snap at each other over seemingly minor things. I have absolutely no desire to be intimate with him.

David said that there are three things that really upset him: 1. He can’t “fix” Brooklyn’s medical problems. 2. Because of that, he can’t “fix” me (the post-partum depression). 3. He doesn’t think that I am at all attracted to him anymore. He feels like he has had to almost force me to have sex with him the few times it has happened since Brooklyn was born. He doesn’t feel wanted.

I can’t seem to make him understand that it really isn’t anything personal. I am so, so, so tired and so, so, so stressed out. I know he is both of those things also. But I can’t ever put it aside. I stay sad and weepy and exhausted. I feel guilty and inadequate. I am anxious and worried and scared. I use what little energy I have at the end of the day to take care of Brooklyn. To try to be happy around her. To try to be a good mommy. I don’t have any energy left for what he wants from me.

Furthermore, as a man, he doesn’t comprehend that I can’t be in the mood to be close in that way when I don’t feel close to him in any other way. And I can’t really explain why we aren’t close in any other way now.

David and I were so close and such good friends that we didn’t have problems with some things that are regarded as being hard on a marriage. “The first year of marriage is the hardest year you will ever have,” we were repeatedly told. Our first year was a breeze. No problems. “Working opposite shifts will put a toll on your marriage,” they said. Nope. We made time for each other and we were great. We felt like we were closer than most couples were and thought that was the reason we didn’t have a hard time with those things.

This is not to say that our relationship has always been perfect. Of course not. But when there have been problems, we have quickly worked through them. And now it seems that we can’t. I don’t know what to do.

“I wish I was better,” he said. I asked him what that meant. “A better husband. A better dad. A better provider so you didn’t have to work.”

“I wish I was better,” I told him. “I should be happier now than I’ve ever been. I have to take these damn pills just to deal with life, and they don’t even really work. I’ve always wanted what I have right now, and I can’t be happy. I don’t understand.”

Tuesday, August 12, 2008

It wasn't me

So I got a call from my OB yesterday...the culture on my breastmilk was negative. Brooklyn's salmonella did NOT come from me. That's a relief in one sense because I don't feel like I poisoned my baby. But where did it come from?

There was an article in the local newspaper today in which the city manager of the small town we live in said that he wanted to address "rumors which have been circulating via email regarding salmonella in the water supply." What rumors are these??? I was concerned to say the least. The article went on to say that the water was safe, no problems, they had passed the mandatory testing required by the state for all but one city well.

I called the city manager and he repeatedly told me the water was completely safe to drink. He said that the "rumors" had to do with some emails from concerned citizens. He said that he thought that they might have confused our city with another similarly named town that has recently had cryptosporum in their water supply. But what does that have to do with the salmonella, and why did he feel the need to address it in the media? I requested copies of the water testing reports from last month. He said that we could pick them up tomorrow.

It's probably nothing. Brooklyn probably did not get sick from the city water supply. I am probably just grasping at straws trying to figure out how my baby got so sick. But I need to try to find out, so I am looking into this.

Sunday, August 10, 2008

5 months old!

Happy 5 months, my sweet little Baby Bear! You are growing up so fast. You are learning to do new amazing things all of the time. You are rolling over, doing your "sit ups," playing with your toys, grabbing your little feet, and sucking your thumb. You can laugh for a long time just like a grown up! It is such a beautiful sound to go with your lovely smile. You like to talk to us a lot, we just aren't sure what you're telling us yet!

You melt my heart by smiling at me, cooing to me, and reaching out to stroke my face and hair when I'm holding you. Brooklyn, I want to take every sweet moment with you and lock it into my memory because you are more wonderful than I ever could have imagined. I always want to remember every detail about you as a baby.

You have been through a lot this month, little baby. I know it has been hard, and I am so sorry that you've had to experience it. But you never cease to amaze me with your bravery and resilience. Remember at the hospital when I told you how strong you are, that I would be so scared if the doctors were doing all of those things to me? It's true, my baby. You are incredible, and I don't know how God packed so much strength and beauty into your tiny body. Hang in there sweetie, these doctors are working hard to figure out what's wrong and how to get you all better. I can't wait for you to be healthy and able to grow big.

I love you more than life itself. I have more love for you than my heart could ever hold. I love you, I love you, I love you.

Saturday, August 9, 2008

The end of a stressful week

Brooklyn rolled from her tummy to her back for the first time this afternoon! Yaaaaay Baby Bear!!!

She will be 5 months old tomorrow. That is unbelievable. Time moves so fast.

She is still recovering from the salmonella. She is having diarrhea about 4 times a day now, but is back to acting like herself. It's hard to imagine how sick she was just last week...she really is doing so much better.

The pediatric sleep clinic called yesterday and scheduled Brooklyn's sleep study for August 21. We have to be in Dallas by 7 p.m., that day - the test will start at 8 p.m. and go until 5 in the morning. We have yet to hear from the pediatric gastroenterologist and whoever is supposed to do the video swallow test. On Thursday evening, a home health agency brought us the nebulizer for Brooklyn's breathing treatments and showed my hubby how to use it. They said that they couldn't come after I got off work. So far, the breathing treatments aren't going great, but they aren't horrible. It really is a two person job person to hold Brooklyn and hold the mask in place on her face, and another person to sing/dance/show her toys/distract her so that she won't fight and scream. I hate it because she doesn't know what's going on and it probably scares her. But of course it will be worth it if it helps her.

I had 2 fairly lengthy phone conversations with Dr. A last night about the treatment plans proposed by the 2 specialists we have seen so far. Basically, I just wanted his guidance in the situation because we trust him. Dave and I want to make sure that we are not putting Brooklyn through any unnecessary procedures. She has aleady been through so much, and we have no real answers yet. Dr. A called and discussed Brooklyn's case with a partner of Dr. M (the ENT doctor) and then called me back. He said that everything that they are wanting to do may not tell us what the real problem is his feeling that Brooklyn will probably still have to undergo the more invasive and risky bronchoscopy, because he thinks there is either some type of impingement or a serious case of tracheomalacia. He shares our feeling that this is not just a case of serious reflux. Dr. A thinks Brooklyn does have a bad case of reflux, but doesn't think that is the only problem. However, he said that these tests will give us good information about her reflux and her breathing and how she is really doing when asleep. He feels that we should go forward with everything as planned. He stressed that we do not have time to waste because of her "failure to thrive." There's that horrible term again.

Dr. A is also going to write me a letter because I am going to attempt to apply for the sick leave pool at work. I am totally out of all sick/vacation/comp time and need to be there for all of Brooklyn's many upcomings tests and appointments. Family Medical Leave Act is not an option at this time because our medical bills are stacking up and we can't make do without my paycheck. On Thursday, the human resources lady told me that she did not think that the board would grant me sick leave time to care for a dependent, only if I were sick myself. I think this is completely unfair. We're talking about taking care of a little baby who can't possibly care for herself. This was the only idea I I am going to get letters and apply anyway. At least I can say I tried.

So that's where we are at right now...

Brooklyn: America's Next Top Model

Check out a couple of Brooklyn's pics here:

This is the photo shoot I talked about a month or so ago where Brooklyn was sooooooo not happy to be you will see from the first picture! My little pouty ballerina.

I'm glad G Gallery updated their blog so that I can show you!

Thursday, August 7, 2008

Doctors, doctors, doctors

This week has been a whirlwind so far. I have quite a bit of updating to do. So know in advance that this will be another long post :)

Monday morning, the pediatrician called and told us that we were to take Brooklyn to Dallas on August 6 (Weds) for an appointment with her new pediatric pulmonologist. She had an appointment for last Thursday, but that was the day that she was admitted to the hospital, so our pediatrician called in another favor to have her seen this week.

Later in the morning, the pediatrician’s office called again. They said that they had gotten back all of the results from Brooklyn’s stool sample from when she was hospitalized. She did not have a stomach virus. It turns out she has SALMONELLA.

What the hell??? I don’t even understand how this is possible. I asked how in the world a four month old baby could have contracted salmonella. The nurse was not at all helpful.

"Well, do you stick your finger in foods and then let her suck on your finger to taste it?"

"Does she ever touch raw fruits and vegetables?"
Um, no.

"Do you have pet reptiles in your home?"
What??? Hell no!

"Well, it can pass through breastmilk."

"But wouldn’t I be sick if I had it and was passing it to her through my breastmilk?," I asked.

"Yeah, I would think so, that would mean you had salmonella also."

So now she is taking Amoxicillin to knock out the salmonella. But seriously, I cannot understand how she could have possibly gotten it in the first place. It boggles my mind. I called Beth, our lactation consultant to ask if salmonella really can be transmitted through breastmilk. Everything she read made it sound as though it were not possible. In fact, she read a couple of articles that talked about how breastmilk kills off salmonella bacteria. She told us to sterilize all of Brooklyn’s bottles and feeding stuff. She said that is all she would normally tell someone to do, but since Brooklyn is "a special case" because of her other health problems, she said that I should have my breastmilk cultured to make absolutely sure I was not passing it to her that way.

I went to my OB Tuesday to give them some breastmilk in a sterile container so they can culture it. They said that it would take a few days to get results.

I hope, hope, hope that it did not come from me. Now I feel like I have been poisoning my baby. That I’m the reason that she had to go through all that hell in the hospital. But we will see, I guess. And if it’s not me, then we are still clueless as to how she could have contracted it.

Yesterday (Wednesday), we took Brooklyn to Dallas to see the new pulmonologist. I will call him Dr. G2 since the jackass first pulmonologist we took her to was Dr. G. Brooklyn did great on the way there - she slept the entire 2 1/2 hour trip!

Brooklyn weighed in at 10 pounds, 6 ounces. She was actually 10 pounds, 12 ounces last Wednesday, the day before she was hospitalized. Considering how sick she has been, I am actually surprised that she didn’t drop more weight. Her respirations were higher than they have been before - 60. Her oxygenation was still good - 95-96.

Dr. G2 was concerned about her stridor and how hard she was working to breathe, but much more concerned about her lack of growth. He was calling it "failure to thrive." Dr. A mentioned that the other day in the hospital too. I cringe at that term because in my mind, it conjures up images of neglected, abused babies. She is not even on the growth charts though, so that's what they consider it. He told us that he thinks she has a pretty serious case of laryngomalacia, not tracheomalacia. We cannot just let her outgrow it because it is to the point that it is affecting her growth. He recommended the following:

- A sleep study to see if she is obstructing and if her oxygenation is dropping while she is asleep
- A video swallow test, where they will have her swallow different consistencies of liquids to see what thickness of milk/formula she should be taking. This is because she often chokes when eating and he is concerned about her aspirating.
- An ear, nose, and throat consult including a bronchoscopy
- He also talked about the possibility of a procedure called a supraglottiplasty, in which they cut off the end parts of the larynx??? I think??? I just know it sounded scary.

Dr. G2 actually called a pediatric ear, nose, and throat doctor at Children’s Hospital and got them to work us in that day because we had driven so far. They finally saw us around 4 p.m., after I had dealt with the nightmare of trying to get a last minute referral from Dr. A, which my insurance required because he is her primary care physician.

The ENT doctor is Dr. M. He was kind of a of those doctors who talks down to you and acts like you don’t really know much of anything. Not very caring at all. But whatever. He couldn’t do a bronchoscopy because Brooklyn would have to be sedated. He did a scope that went up her nose and looked just at her larynx, since Dr. G2 wanted him to look at the laryngomalacia. I had to hold Brooklyn in my lap and hold her arms, legs, and body still while they put the scope up her nose and into her airway. Poor baby. She screamed and screamed. They told me that it doesn’t hurt her...just "pressure and pushing"...I don’t believe them because Brooklyn really sounded like she was hurting.

Dr. M said that he did not see any laryngomalacia! He said that her airway was extremely swollen and closing because of severe reflux. He said that Brooklyn needs to see a pediatric gastroenterologist. I asked if she had tracheomalacia....he said that he couldn’t know that without doing the bronchoscopy. He thought her main problem was the reflux.

How can a baby possibly sound like that when she breathes just because of reflux??? That just doesn’t seem possible to me. I mean, she works so hard to breathe, all the time. How could it be reflux alone? I know I'm not a doctor...but I just don't understand that.

Dr. M's nurse called Dr. G2 so that we could figure out what to do next. His plan is:

- Schedule Brooklyn to see a pediatric gastroenterologist at Children's Hospital
- Change up her meds. He is putting her back on Prevacid and putting her on a low dose of Erythromycin, which he says will make her stomach empty quicker. But he also said a side effect is don't ask me how that will help with her weight gain...
- Brooklyn has to start having breathing treatments with Pulmacort, an inhaled steroid, twice a day. Home health is going to bring us a nebulizer and teach us how to use it.
- He still wants her to have the sleep study and video swallow as well as possibly the bronchoscopy. These will all be in Dallas as well.

So. That's where we are now. Brooklyn has to see more doctors and have more poking and prodding and testing done. We went to Dallas to see one specialist and came home with three. And no real answers to speak of. We just want someone to tell us exactly what Brooklyn's problems are so that we can fix them and get our baby well!!! Is that too much to ask?

Sunday, August 3, 2008

Brooklyn's hospital stay

Thanks to everyone for your thoughts and prayers over the past few days. Brooklyn was discharged from the hospital Saturday afternoon. The pediatrician determined that she had a really bad stomach virus - not rotovirus, but similar to it. She is not completely over the virus, but is getting much better. I think she is happy to be back at home.

Since I have had absolutely no time to explain what was going on the past few days, here is what happened: Tuesday night, shortly after my post, Brooklyn had some serious diarrhea that literally covered her from her neck to her calf. I cleaned her up and didn't think too much of it because she was acting like she felt okay. In fact, she was even laughing at me while I cleaned the mess. I had no problems getting her to sleep that night and she seemed fine.

Wednesday morning, at about 10, Dave called me and wanted to know where the baby Tylenol was. I asked him why, and he said that Brooklyn felt hot, he took her temperature, and it was 102.3. I told him to call the doctor and call me back. Dr. A's office wanted to see Brooklyn at 3:00. Throughout the afternoon, Brooklyn's temperature hovered around 102, she continued to have diarrhea, and she vomited quite violently a couple of times. I left work early and met Dave and Brooklyn at the doctor's office at 3:00. My poor baby was just not herself. We waited in the hallway of Dr. A's office and she was like a limp dishrag, laying against my chest and whimpering. She was bright red and her little body felt like it was on fire.

They finally got us into a room. Brooklyn's temperature was 102.7. They took a stool sample and drew blood from her arm. Dr. A. said that he was pretty sure she had a nasty summer virus but wanted to make sure that nothing else was going on. Brooklyn took some Tylenol and by the time that we left Dr. A's, at 6:00 p.m., she seemed much better. We felt relieved and could tell that Dr. A was too.

Back at home, the baby Tylenol seemed to wear off quickly. Brooklyn's fever went back up to 101 and then 102. She nursed well but then projectile vomited. I had never seen that much come out of a baby. She was still having lots of diarrhea. We gave her a bath and put cool washcloths on her head to cool her down. She had another dose of Tylenol, but it wasn't getting rid of the fever. At 2:30 a.m., we called our pediatrician's 24-hour nurse line and asked what else we could do to help Brooklyn with the fever. She gave me some suggestions and said that if her fever reached 103, she needed to be taken to the emergency room. Since it was one of Dave's off days, he stayed up with Brooklyn and put cool washcloths on her until her fever finally dropped to 99 at 6:00 in the morning.

Thursday morning, I got up and got ready for work. I was ready to walk out the door and checked Brooklyn's temp on my way out. 103.8! I called the doctor's office immediately. They weren't in yet. It took me about 30 minutes to get a hold of somone up there. They told me that Dr. A would see Brooklyn at 9:15. I called in to work, and my mom came over to help me take Brooklyn to the doctor. Brooklyn was very lethargic, burning hot, and was crying this pitiful little pain cry. She wasnot interested in eating and was having lots of diarrhea. Dr. A's nurse catheterized her to get a urine sample. Then Dr. A came in and told us that Brooklyn was dehydrated. She continued to have diarrhea and screamed unconsolably for half an hour while Dr. A was in the room. He decided to have her admitted to the hospital to get IV fluids to rehydrate her and "let her gut rest." He said that because she has been having weight gain/feeding problems (she weighs 10 pounds and 12 ounces at 4 1/2 months), we cannot afford to let her get any sicker and lose weight.

We bypassed admissions and were sent directly to the pedicatric unit. They came and took Brooklyn and said that they were going to put an IV in her and that family was not allowed in the procedure room because it was "too traumatic." They were gone for 20 minutes. When the nurses returned to Brooklyn, they said that they had tried to put the IV in her hand and her foot but were unable to get a line going because her veins were so small and she was dehydrated. They said that they would have to get an OB nurse to put the IV in her head.'s "too traumatic" to let me be with her when they put an IV in her hand or foot. But here come 3 nurses into Brooklyn's hospital room to put the IV in her head. They laid her on the bed and tied a tourniquet just above her eyes. One nurse pushed the sides of her face together and held her head down. Another one held on to her little body. They told me not to look as they began sticking her head. Brooklyn was screaming this horrible scream that I have never heard before and I hope to never have to hear again. This went on for about 5 minutes, until they got the IV in place. Oh my God. I cried so hard. I held my baby and soothed her to sleep.

Every time Brooklyn would fall asleep, they would come and do something else to her. Take more blood from her arm. Weigh her. X-rays (they screwed up and had to repeat them too). Vital signs. Temperature. Etc. She was already so sick and tired and could not rest. We could only give her Pedialyte until she had gone 6 hours without vomiting, so they brought me a breast pump. I didn't want to put her down to pump. All I wanted to do was hold my sweet girl and make her okay.

Her fever had gone down some but went back up to 102.7 that night. She had gone almost 5 hours without throwing up but threw up a lot when we were in radiology having her x-rays redone. More and more and more diarrhea. Dave went home to sleep and I stayed the night with Brooklyn. I would say that I slept at the hospital, but um, yeah, there was no sleeping going on.

Friday morning at about 4:30 a.m., I was finally able to nurse Brooklyn and she did very well. Her temp was back down in the 99's and remained below 100 all day. She was still having diarrhea but was no longer vomiting very much. Dr. A said that her labs were slowly coming back and all looked good, none of the really scary stuff that he wanted to rule out. He told us that it was most likely a bad stomach virus similar to rotovirus. He said that it would be premature to discharge her that day, so he would be back tomorrow and we would reevaluate then. She needed to get more IV fluids and start keeping her food inside her.

About 30 minutes after Dr. A left, Dave took Brooklyn and sat on the bed with her so that I could eat. I had taken just a few bites when he said, "Quick, Amanda, go get the nurse!" I looked at Brooklyn and she had pulled her IV mostly out of her head. Blood was running out all over her scalp. I ran to the nurses station and 2 nurses ran back to the room with me. Brooklyn was screaming and crying as blood dripped off the back and sides of her head and trickled down her forehead. It took what seemed like an eternity for them to get the IV all the way out of her. There was tons of tape in her hair and they had difficulty getting it off to get to the needle. I rubbed Brooklyn's arm and leg, leaned my head on her and cried with her. She screamed and screamed and I told her how sorry I was. When the nurses finally got the needle and all the tape off, they placed Brooklyn in my arms. Brooklyn and I sobbed together. I felt so horrible. My poor baby. How could I let her hurt like this? Dave and my mom put Brooklyn and I back on the hospital bed. I held her for the longest time and just cried. She went to sleep. I cried some more. I wished it could have been me that was hurting physically, not her. My heart hurt so bad. I still can't even think about it without crying.

Dr. A decided not to put Brooklyn's IV back in. He said that he was pissed that she had pulled it out, but didn't want to put her through all of that again since she was feeding better now and was not vomiting. When he came back to see her that evening, it was determined that she would stay one more night so that they could weigh her and see how she was doing on her fluid intake and output the next morning. I stayed the night with Brooklyn again (of course). She slept better than she had the night before....maybe because no needles were in her head?

Dr. A came back about noon on Saturday. He discharged Brooklyn and we are to call his cell if anything worsens over the weekend. I am to call him Monday morning and see if she needs to come in for an appointment then. She is still having diarrhea but not nearly as bad. Her fever is mostly gone and she has vomited once since we have been at home. She is still pretty irritable, but I would be too if I had gone through everything she has in the past few days. She has been much more like herself today though. At times she has been smiling and cooing, something we had not seen in a few days. What a relief. Right now she is sleeping in her Daddy's lap. I am so glad that we have her back at home. I am constantly amazed at how tough and brave our tiny girl is. Sigh.
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