Rest your little head.....

To sum up Brooklyn's sleeping situation, she has had to sleep in her car seat in our room since she was a couple of weeks old on the advice of her doctors. First it was because she had terrible reflux and they wanted to keep her elevated. Then when her breathing problems began, her pulmonologist told us we were to continue because her trachea would collapse down/obstruct if we allowed her to lie flat on her back to sleep. Anyway, the more she has grown, I believe she has become increasingly uncomfortable in her car seat....she can't really move around or stretch like older babies need to do. Another concern was that her car seat was flattening the back of her head. Her pulmonologist told us in December to get a Tucker sling through her gastroenterologist. A Tucker sling would allow her to sleep in her never-used crib and let her stretch and move a little more, so that hopefully she would be more comfortable. About a month ago, Hope sent me the Tucker sling that Ava had outgrown so that we wouldn't have to buy one. Then we saw her gastroenterologist and he wanted us to get the wedge for the Tucker sling. So, several weeks of phone tag with nurses and home health agencies and calls to my insurance company followed. This week we got the wedge.

Tonight, we decided to try it out for the first time. Brooklyn was really, really tired, but was freaked out by being put in the sling for the first time. We calmed her down and then moved her and the wedge to her crib. That did not go over well with her.

I understand completely. She has never, ever spent a night alone in her room. She is always right by Mommy and Daddy's bed, and sometimes even on the bed in the car seat, on the nights that my husband works overnight.

I tried my best to calm her down, and it would work until I moved the slightest bit away from her. Then she would get so upset all over again, crying her little eyes out. Which hurts a lot, because I don't want to do that to her. I guess my husband saw that I was getting emotional about it, so he told me to go take my shower and he would take care of her. I took an extra long shower...trying to get rid of the stress, I guess.

Thirty minutes passed and I returned to Brooklyn's room. She was sobbing. Sad, pitiful cries. "Nothing works," said my husband. "I can't get her to calm down. She's just angry." "She's not angry," I told him. "She's scared. She's never done this before." He left the room.

That is the thing that I really hate about the whole situation: my sweet baby is scared. She's afraid of being in her room by herself, she's afraid of being alone, she's scared of sleeping somewhere different. I don't want my Baby Bear to be scared. I don't want her to know fear. I can't stand to think of her feeling that way. The idea of it just breaks my heart into a thousand pieces. And the thought that I am causing the fear...well, that's a million times worse.

I leaned over her crib and put my head against her sweaty little forehead. I wiped the tears off of her sweet, soft cheeks. She clutched the fingers on one of my hands, and I stroked her hair with my other hand. Brooklyn settled down, her stridor loud from all the crying. She drew in big, jagged gasps of air, trying to breathe normally again. At first, I tried to soothe her by just telling her that she was okay....Mommy is here....it's all right, sweet girl....I'm not leaving you.

Then I decided to tell her why she would be okay.

It's all right, sweet bear. I know it's scary, and I'm sorry. But you're such a big girl, and you're doing so good. It's hard to be a big girl, isn't it? But look at you in your big girl bed. I'm so proud of you. This is gonna make you sleep better, okay?

You're such a brave girl. I wish I was brave like you. All of the times you've had to go to the hospital and to all those doctors....all of those tests you've had to have...you've been so strong. I would have been so scared. I was so scared. But you're such a big strong girl. Did you know that? You are. I'm so proud of you, Baby Bear. I love you so much. You're my sweet baby girl. You're gonna be okay. I won't leave you. I'll be right in my room. I'll be right here when you need me. You're doing so good. You're so brave, Baby Bear.

Then I was wiping my own tears off her plush little cheeks.

I slowly moved my forehead away from hers. I gently lifted my hand off of her head, and finally set her hand down next to her side. She relaxed and released my fingers.
I crept out of her room.

And now she sleeps.

My husband smiled and excitedly pointed at the baby monitor, listening to the rhythmic sound of Brooklyn's stridor when she is asleep. "What did you do? She is out."

"We just talked a little."

I sat down on the couch and exhaled deeply. I felt relieved and somewhat accomplished, but still so sad.

Now we will see whether I can sleep with her in another room. The monitor will lie right by my pillow. I have so much anxiety about her breathing. In my mind, I have more control over it if I am right there beside my baby.

This motherhood thing. It is not for the faint of heart, is it?

Nervous.

That's what I am. Nervous, anxious, worried, fearful. Brooklyn's bronchoscopy and endoscopy are tomorrow.

I am afraid because Dr. G, the first pulmonologist we saw, really scared us about having a bronchoscopy performed on Brooklyn. This was back in July. I talked about it here. Dr. G told us in a very flippant way that he would do the procedure on Brooklyn but that we needed to know that he could paralyze her vocal cords or puncture her lungs or that she could have horrible complications from the anesthesia. And that's pretty much all he told us about the procedure. Other doctors have since told us that they think that Dr. G2 was afraid to do the bronchoscopy on such a small baby, so he scared us out of it. We didn't have it done then. We were scared and we also didn't want to put her through anything that she didn't absolutely need. So here we are, the tests have gotten progressively more invasive and she now has to have the bronchoscopy, along with an endoscopy. I keep wondering if they really are going to paralyze her vocal cords. What if I never get to hear her sweet little voice again? Or what if something worse happens from a lung puncture or something like that? My stomach just ties itself into a million little knots. I hate the idea of her being in a surgical room under anesthesia and with a breathing tube in her to begin with....but then add all of these other fears into the mix....I'm just scared.

I guess my other fear is that they will do these procedures tomorrow and still not know what is causing Brooklyn's respiratory problems (and consequently, her failure to thrive). I don't want to put her through any more of this. I am trying to have faith that we will have our answer tomorrow, and that her doctors will know what to do to fix everything. Dr. G2 and Dr. R will be doing these procedures. I know that they are experts and that they are good at what they do. It's just hard to trust anyone with your little baby like that.

We have to be at the hospital in Dallas by noon tomorrow. Please keep my sweet baby bear in your prayers.

Bouncing off the walls!!!

Last night, I told my hubby at 8:45 that I wanted to take a nap for about an hour because I just couldn't hold my eyes open anymore. I really hate doing this in the evenings because that's my time with Brooklyn, but she was taking a nap and I figured I would too before her next feeding.

So around 2:00 a.m., I realized that everyone else was in the bedroom too and this was no longer a nap. LOL, oh well. So I went back to sleep. And slept until 6:30 this morning! That has got to be the most sleep I have had in one stretch since...I don't know...maybe my second trimester???

And today I am SO energized! I can't think of the last time I felt this awake and this productive. I wish that I was at home so that I could be productive there instead of at the office, but oh well. Maybe I will still feel this way tonight. Woohoo! I feel like I could run up and down the street with a big grin on my face. Probably not the best idea though, since I work next door to the jail, and people would probably just think I was a crazy escaped inmate.

So before I get back to work, a few things I want to tell you about:

Brooklyn's weight check on Wednesday...she weighed 12 pounds and 13 ounces!!! Go baby!!! That's 5 ounces per week for 2 weeks! She has never been able to do that before. I'm happy, and so is Dr. A. Brooklyn is still right on that 3rd percentile curve...but Dr. A said that is FINE, because at least she is staying on a curve and not falling off it again. I was hoping they might say she didn't need the procedures on October 17, but no such luck because her breathing has not improved.

To celebrate, I went and bought Brooklyn a Bebe pod seat. Actually, I was going to buy one anyway, because she is too small for her high chair and Dr. had said that we could try giving her baby food for the first time. She can have a little bit of food as long as it doesn't take away from the calories she is getting in her bottles. Anyway, she needs the Bebe pod for that and because she can't sit up on her own yet and needs something to help her practice. She LOVES that thing! She just sits in it and plays with her toys and looks around at everyone like, "Hey, check me out, look what a big girl I am!" I'll post pictures later on. It's soooo cute.

I'm going to take Brooklyn after work to get some 6 month pictures done. The girl at the portrait studio said that I could bring more than one outfit. So now I am trying to figure out what outfits to take with us! Brooklyn is FINALLY starting to fit into some 0-3 month clothes (at almost 7 months old), so now she really has some cute outfits to wear. She has been wearing size newborn for about 5 months now, and there just aren't nearly as many adorable clothes in that size. Hardly any dresses or anything like that. So...hooray for 0-3 month clothes, and hooray for my sweet baby bear for growing!

The best sound in the world!

A cute little video for y'all :). Brooklyn is cracking up while Dave plays with her toy puppy. I absolutely loooooove her laugh, it is so adorable!!! I can't help but laugh with her every time. It's the cutest, sweetest sound I've ever heard!

(Pause the little iPod on the left so you can hear her!)

Brooklyn has this big beautiful crib in her room that she has never gotten to sleep in because of her airway problems. She has to sleep upright, so she sleeps in her carseat in our bedroom. So we lay her in her crib sometimes and play with her so that hopefully it won't be a scary, unfamiliar place when she does finally get to sleep in her own bed.

You can't hear much of her stridor in that video. But here is a clip from just a minute ago, sleeping and sounding the way she typically does. It's weird sometimes how the volume fluctuates. And it's never something where we can say, "Oh, if we lay/sit her in this position, it gets better." It's not predictable at all. The doctors always ask us when the noise gets better and when it gets worse. We can't say...all we can tell them is that it's pretty much always there. Last weekend, my grandparents were here, and I was holding Brooklyn while she slept. Her stridor was really, really loud. Then, without me moving her at all, it just went away for like 5 minutes, and pretty much shocked everyone. Then it came right back. I don't understand it. It just happens sometimes. I wonder if this is significant.

Weight check is this week, pulmonologist visit is next week, as is her pre-op appointment. Her endoscopy and bronchoscopy are the following week.

I bid you farewell, nebulizer!

As of this week, we no longer have to give Brooklyn nebulizer treatments! Thank God!!! She hated them and therefore we hated them too. It was time for a refill, so we asked Dr. A if she could stop the treatments since they haven't made any difference for her. He consulted Dr. G2, and Dr. G2 said yes since they aren't helping her. I couldn't pack that thing back up in its box fast enough. Yay! Good riddance! No more of this:

The go ahead

Dr. A called me late yesterday afternoon. He had not talked to the gastroenterologist, but had talked to Dr. G2, the pulmonologist. Dr. G2 was glad that Brooklyn had gained some weight, but said that it did not change the fact that she needed the bronchoscopy. Because Brooklyn's breathing has not improved, he is concerned about some other types of airway obstructions/impingements/masses. With just plain old tracheomalacia, we SHOULD be seeing improvement or signs that it is going away by now, but we are not. All of those things Dr. G2 wants to look for sound really frightening, but I am trying to put them out of my mind.

So all plans for the surgical procedures will remain the same unless her breathing AND weight drastically improve this month.



On another note...a monthly visitor that I hadn't had to deal with in 15 months made an appearance at work today. I was not exactly prepared for that. Gah, I hate uninvited guests. I was hoping Aunt Flo would stay away until I was finished breastfeeding. I have not missed her in the least. Oh well.

6 month visit

Brooklyn had her 6 month check up yesterday.

As usual, I’ll start with the good news...she weighed in at 12 pounds, 3 ounces! 7 ounces in one week! I don’t recall that ever happening for us. That means that our feeding plan is working now. Hooray! She is hovering around the 3rd percentile on the growth chart right now. Dr. A said that if she continues at this rate, she will weigh about 17 pounds on her first birthday. But all things considered, he is satisfied with that as long as Brooklyn continues to gain and doesn’t get to a point where she isn’t gaining any weight at all again. She was 25 inches long...25th percentile! Woohoo!

Developmentally, she is fine. She cannot sit on her own yet and only rolls occasionally, but has rolled both ways. She LOVES to stand up though. Dr. A was examining Brooklyn, and when he checked her motor skills, he started to pull her up to stand and she pretty much did it on her own. She loves that. Then he was trying to get her to sit, but all she wanted to do was stand back up...she even got on her tippy-toes once! She thought that it was a fun game and was grinning at Dr. A the whole time. Dr. A said that she is doing fine with her development. He said, “Do I have plenty of 2 month olds in my practice who are bigger than her? Yes. But I also have 20-pound kids her age who can’t do some of the things she is doing.” So that was good. He said that actually only about 50% of kids can sit unassisted at this age. He said that we can sit Brooklyn up in her Boppy more to help her gain “trunk strength” and hopefully she will be able to sit by herself soon. She likes to pull herself up to a sitting position when she is being held, she just doesn’t have the balance thing down yet.

I was afraid that they wouldn’t give her the 6-month immunizations because she has had a cough for the past couple of days, but they said that it was okay because she was not running a fever. She cried for probably less than a minute when she got her shots...I promptly gave her a bottle and all was forgotten.

Now here is what I got upset about. Dr. A was going over the tests Brooklyn has had since we last saw him and discussing our visits with the specialists and what the plan is now. He said that he thinks that she will have the endoscopy/bronchoscopy in October as planned and they probably won’t find much of anything. He said that at that point we should consider just “taking a break from all this.” Basically, he told me that he wants an answer too, but that we have to know when enough is enough and know when to leave Brooklyn alone because all of the tests and procedures are hard on her.

Okay. So...I am supposed to put Brooklyn through this scope procedure next month, which I am already scared of, and you don’t think it’s going to tell us anything? What is the point of that??? Why am I going to make her do that if you think it’s pointless? If you think it will be “essentially normal”?

And then we are supposed to just sit back and let things just be...when we have no more answers than we have ever had?

“Something is wrong,” I said. “No one has ever denied that, but no one can tell us what that is.”

“Yes,” said Dr. A. “Something is wrong. But what if it is tracheomalacia that is aggravated by reflux and all of that makes her burn so many calories that she can’t gain weight.”

Well, what if?

Ummmm....that was what we were told that the problem was MONTHS ago. Why have we been doing all of these tests? Clearly, no progress has been made, and now we are just going to go back to assuming the problem is what you originally thought?

I told Dr. A my fears about the scope procedure, and how I didn’t know now if I wanted to make her go through with it. He said that he would speak with Dr. G2 and Dr. R and would see if perhaps it could be postponed if she continues to gain weight at a good rate over the next few weeks. He said that he would call me last night or “first thing” this morning. As per usual, I have heard nothing yet.

I’m just so damn frustrated and confused. I am conflicted about what should be done. I don’t know what the right choice is, I don’t know what the right thing to do for my baby is. I am so confused by a doctor who wants to do every test in the book one month and the next month wants to call it all off and do nothing, when absolutely nothing seems to have been accomplished. I am afraid of the unknown...of the idea that she has these breathing problems for some undetermined reason. That makes me so uneasy. If it’s unknown...how do I know she isn’t just going to die? How can I fall asleep and believe that I will have her beautiful smiling face greeting me each morning? And how could I ever live with myself for not doing something about it, for not working hard and advocating for her to find out what is wrong? But what if they keep doing all of these tests and something happens to her...what if they hurt her and she has some horrible complication or side effect? I don’t want her to be subjected to all of this so young. But I am so afraid of what is wrong. I can’t lose her. My anxiety is so great this morning that I feel like a 500-pound weight is sitting on my chest, and my heart is beating a thousand times a minute to try to push the weight off of me. I have a million questions racing around and colliding inside of my brain, and I suspect that many of them will remain unanswered.

Nothing yet

Yesterday morning, I woke up and it was raining really hard. David and Brooklyn were still asleep. I went outside and saw how much rain there was, how saturated the ground was, and how muddy our yard was. I started thinking about how bad the interstate is during rainy weather. The ruts worn into the road and how easy it is to hydroplane all over the place. The multitude of 18-wheelers that spray water onto your windshield so that you can't see where you're going. The aggressive drivers in Dallas and how they will cut across five lanes of traffic and slam their brakes on in front of you regardless of the weather. I started having an anxiety attack, picturing us in a wreck, our car rolled upside down, and all of the horrible things that could happen to Brooklyn if we did have a wreck.

I fretted for a while. I called my mom and asked her if I should try to reschedule Brooklyn's appointment. She gave me reasons why I should and reasons why I shouldn't and really wasn't much help. I called the pediatric gastroenterologist (Dr. R) and asked the scheduler when the next appointment would be if I did reschedule. She said September 23. I woke Dave up and asked him what we should do. He thought that we should stay home because seeing a doctor wasn't worth getting into a wreck with Brooklyn in the car. "If it was just us, that would be one thing," he said. "Brooklyn has enough problems, she doesn't need anything else to happen. Just call and tell then to give you that appointment for the 23rd."

But I felt really bad about making Brooklyn wait 3 more weeks with nothing else planned at this time. She had a really bad weekend with her reflux. I didn't want her to just wait when nothing is getting better. I called Dr. A's office and his nurse told me that Dr. A really wanted us to go to the appointment. Dr. A thought it was really important and didn't want it delayed. "Okay. We'll do it then."

By that time, I had wasted so much time trying to figure out what to do that it was practically time for us to leave. I told Dave to get out of bed and we rushed around getting Brooklyn fed and changed, giving her her medicines, and packing her diaper bag. The midday news show came on and showed that Hurricane Gustav had shifted northward and wasn't going to affect our area nearly as much as previously predicted. Whew!

The ride to Dallas was rainy and windy and messy, but there were no torrential downpours and people were actually using their driving manners. We arrived about 5 minutes late for our appointment, but I had called them about a half hour prior to let them know we might be a little behind due to bad weather. Last week, they had warned me that we would probably have to wait a long time to see Dr. R because we were a "work-in appointment." But they called us back about 10 minutes after I finished filling out Brooklyn's paperwork.

Brooklyn weighed just shy of 12 pounds. She was still 24 inches long. I was happy that there was some weight gain, even if it's not considered much. For us it's a pretty big deal at this point.

Dr. R was very nice. He spent a lot of time taking down Brooklyn's full medical history and asked us lots of questions about her. He did a brief examination of her. He agrees with Dr. A and Dr. G2, that the ENT is wrong and that Brooklyn's respiratory problems are not just caused by a really bad case of reflux. He thinks that her breathing problems are probably aggravated by the reflux, so he increased one of her reflux meds. The other 2 are already maximum doses for her size. He said that he is not sure what her respiratory issue is, but mentioned tracheomalacia and allergies to formula (she is breastfed about 50% of the time now and gets formula the rest of the time.)

Brooklyn has to have an endoscopy (scope of her stomach). Dr. R talked to Dr. G2, and Dr. G2 also wants to her to have a bronchoscopy (scope of her lower airway). They are going to try to coordinate their surgery schedules to do both procedures at the same time, so that Brooklyn doesn't have to be admitted to the hospital and be put under anesthesia twice. The surgical department at the children's hospital is supposed to call me this week to set up a pre-op appointment and the procedures. Dave asked if the pre-op appointment could be the same day as the procedure, and the nurse said no, due to Brooklyn's respiratory problems/stridor. I'm not sure why or what goes on at that appointment. They gave me a hospital "welcome packet" that explains some about what is going to happen before and after surgery, but I haven't gotten to read it yet. Anyway, the follow-up appointment with Dr. R is in 6 weeks, and the procedures will be done before then.

That's where we're at right now. More waiting. More tests. Including the bronchoscopy, which all the doctors have been trying to avoid up to this point because of Brooklyn's size and the risks.

I almost forgot to tell you how good and brave Brooklyn was. But then, she pretty much always is with all of this medical stuff. She is a tough little girl. I am so proud of her and I love her so much. I'm ready to not have to subject her to all of this anymore.

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 problem...so what is it?

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 briefly....my 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.

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 clinic...no 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.

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. So...no 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 test...it 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...

Waiting...

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...

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 mean...you 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 way...it 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!

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 though....one 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...it 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 had...so 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...

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?"
No.

"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 tool...one 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 diarrhea...so 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?

The pointless pulmonology appointment

Yesterday morning, as promised, the pediatric pulmonologist's office called me. It was about 11:00. The receptionist said, "Dr. G wants to see you at 3:00 today." Okay. I called Dave and let him know when he needed to pick me up from work so that we could drive to the hospital together.

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?

Weight check

So today we returned to the pediatrician, Dr. A., for Brooklyn's weekly weight check. Last week, she weighed 10 pounds, 4.5 ounces. The doctor said that she should be gaining between 4 and 7 ounces per week. Today, she weighed...

10 pounds, 4 ounces. She lost half an ounce.

Damnit.

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).

-We will continue to have weight checks.

Sigh.

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?

My "Tiny One"

That's one of my many nicknames for Brooklyn. And rightfully so.

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.

What it sounds like...

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!