Probe and Scope Recap

This is going to be a quick update, but the endoscope and 24 hour probe went as well as could be expected. The endoscope showed no signs of damage or inflammation to the esophagus (praise the Lord!) and everything else looked normal as well. The probe showed that her reflux is well controlled by her meds. She did have some minor reflux incidents (mostly in the early morning before her first dose) but they didn't dip below a ph of 4 that we saw(which is usually considered acid reflux), so that was great news.

The first hour after she woke up from the scope with the probe down her nose was the worst. She was frantic, crying like crazy and so tired. She ended up throwing up, like she usually does and I felt so bad for her. She finally settled down a little later and took a much needed nap. The night was rough because she couldn't sleep very well with her hands and feet wrapped up and the tube down her throat, but overall she did pretty well. She slept more than I did!

Today we are recovering. She slept really well in her own bed last night and has taken a pretty good nap this morning. Despite everything she's been eating well yesterday and today so far. We'll find out biopsy results on Monday. Thank you for all your prayers!

Sensitive Material (update)

Today was our first Early Intervention session at our home. First let me say that being place with someone was no easy task. Remember when they told me that I would be contacted within 28 days and that it would probably most definitely be sooner because our availability was so great? Well after 29 days of hearing absolutely nothing whatsoever, I contacted our coordinator to see what was up. It then took several more days for her to find someone that could service our area that specialized in what The Chubs' needed. Her schedule was very limited so I basically told her whenever she could come, to come because we NEED to get the ball rolling.

Well to make a long story short, I absolutely love her. She's wonderful and The Chubs loves her to death (she was smiling at her and showing off the entire time). She's great with kids and actually had a child with reflux so she gets it. From what she observed, The Chub Muffin has a lot of sensory issues, which is why she is hesitant to grab for things, touch things, and eat from a spoon. She also gets agitated by loud noises and often cries when she's moved from place to place or out of the bathtub. I was an idiot and didn't pick up on any of these cues until recently. I guess I figured it was "normal" behavior. I guess not.

Her thought is that she is not napping well due to these sensory issues and because of her short naps, it's compounding the problem. She wants to work on getting her nervous system regulated so we can get her to sleep better and not be as sensitive toward textures, various positions, noise and objects.

I also finally (with a lot of effort on my part) got her enrolled in the feeding therapy program at Children's. Nevermind that the head of the department STILL has not returned my calls regarding getting her placed. I had to dig up an old number we had from the NICU when The Chubs was seen by an OT for her lack of suck/swallow/breath coordination. If I hadn't had that number who knows how long this would've taken. I love this OT as well. She is wonderful and got my daughter to take several bites of food. Something we have not been able to replicate since, but at least I know it's possible. She also suspected sensory issues and sent me home with a questionnaire.

In other more interesting news, The Chubs has finally learned how to roll from back to tummy. She did this a few times during nap time and at night where she proceeded to sleep on her tummy for quite some time. I'm hoping this becomes a favorite sleeping position because it's supposed to be one of the best positions for reflux. It has to be all her idea though. And yes, she did technically roll from back to tummy around 6 months but it was an accident. One she was determined not to repeat for quite some time because she normally hates her belly.

Her second tooth is in now and all though they have not come all the way up, they are getting there everyday. She still seems to be in discomfort, however. I'm sure having heightened senses probably doesn't make it easy.

Finally, she is beginning to wave when I take her to look at herself in the mirror. It's kind of a shy wave at the moment, but she gets a kick out of seeing us together in the mirror. I also think she's beginning to sign "Mom". I've shown her this sign for several months now and every now and then she does it. The other day she did it while saying "mmma", so I think she knows what she's doing. It's anybody's guess!

My Medical Rant

With all the appointments I've had to schedule for The Chubs in the last few months, I can honestly say I am royally annoyed with the health care system. Here are several things that have driven me crazy over the last few months:

• I receive a phone call from such and such department saying there is a referral for The Chubs and to call and set up an appointment. I make the call, give her name, date of birth, home address, etc, and they look her up. "What are we seeing her for?" Is always the question that follows. YOU TELL ME! You called me and said you received a referral! I dig through paperwork I've received to figure out why the heck she IS being seen because I can't keep them all straight! I finally find it and tell them and then I hear "Hmmm, it doesn't mention that here." This is where I go crazy. Seriously?!?!
  
• The previous annoyance almost rivals my frustrations with an office that makes you fill out 15 pages of lengthy information regarding why you are seeing the doctor, all to have the doctor walk in to the appointment without even GLANCING at the paper and asking you all over to repeat in verbal form everything you just spent 20 minutes trying to write out on their in-depth questionnaire.
  
  
• My daughter is almost 9 months old. We scheduled a GI appointment for her back when she was 5 1/2 months and have only been able to get in to see the GI ONCE. This means we have spent almost half of her life waiting on care that she really needs. I understand that Children's Hospital is busy, but when a child is not eating well and is already off the charts small, it seems like it should maybe be a little more urgent.
  
  
• Conflicting opinions drive me nuts. We have seen so many doctors and they all have a different idea of how to handle things.
  
  
• Drastic measures seem to be common at Children's Hospital. This was our experience in the NICU. There was no possible way my daughter just had something "simple" like reflux. She either had a stroke in the womb, meningitis, encephalitis, and was most definitely having seizures. WRONG! It was "just" reflux, so forgive me if when I have big scary procedures and diagnoses thrown at me left and right, I tune you out. I'm tired of the scare tactics. Let's have a little hope for a change.

End Rant.

11 3.5

We had The Chub's weight check yesterday to make sure she's still gaining weight despite her terrible eating. Her weight was 11 lbs. 3.5oz. That means she gained 5 oz in the last 2 weeks. Not too great, but at least she's still gaining. Ideally she would've gained at least a half ounce a day. If you do the math, she obviously has not gained that much. But I need to count my blessings. She is still gaining, and that's what really matters right now. It actually feels like a huge victory in some ways. Getting her to eat everyday has been challenging to say the least. I feel like my life revolves around trying to force a bottle nipple down her throat. It's a battle back and forth. I try feeding her, she closes up her lips, fusses, turns her head, and pushes the bottle away. Today I spent the entire feeding trying to distract her with a mirror so she would eat enough.

I had a small breakdown last night. This has been going on for months now. I don't know how much I can take. But at the same time, I know the answer: I'll do whatever it takes. Because that's what you do when you're a mom. No matter how tough a situation may be, or how frustrated and overwhelmed you might get, the bottom line is you will do whatever it takes to provide the best for your child. If that means months of 40 minute struggles to get my daughter to take 1 or 2 ounces, so be it. It doesn't take away the frustration, the stress or the occasional emotional breakdown, but it reminds me that although the road may be long, we are on it together and my daughter who was definitely worth the wait, is also worth the extra effort, the tears and the $100 we'll probably need to spend replacing all the haberman bottle nipples she's chewed open. And today I'm feeling thankful. Thankful that my daughter is here after the initial scares, and questions regarding her health. And thankful that it could be so much worse than it is. I have a friend who is dealing with this with her twins and I admire her strength. I'm only struggling to feed one child each day. I can't imagine what she is going through struggling to feed two.

Thank you for your continued prayers for The Chub Muffin. Her next appointment is June 28th with genetics/metabolics at Children's Hospital.

(Almost) Free from the Bonds of Swaddling

As many of you know, I am addicted to swaddling my child. It started out innocently enough in the Children's Hospital NICU where The Chub Muffin was constantly in a swaddled state. When we brought her home in the dead of winter, her pediatrician strongly recommended keeping her swaddled so she could stay warm. She was so small, that helping her save energy by keeping her warm would help her to grow. At least that was plan. So for months I continued swaddling her for nap time and at night. By the time 3 months rolled around and Spring was around the corner, I realized it might be a good time to break her from the habit. You can read more about our first attempts here. Needless to say, it did not go well. After a few days of trying, I gave up. I could no longer handle watching my baby on the video monitor struggle to fall asleep and cry for an hour. She was just not ready and neither was I.

It took a swaddling intervention to get me to change my ways. One night at a girls night out, The Hubs put her down for the night and "experimented". I love how men can be so much more spontaneous that way. I came home to see my little girl laying peacefully in her crib with her arms up by her head. It made me wonder why we hadn't tried this sooner. Oh yeah, that's right. I value my sleep. Anyway, everything seemed to be going rather smoothly until about 3am when I heard an outburst of crying. It seemed that although she was able to fall asleep like that in a very tired state, she had a harder time transitioning with her arms there to distract her. So for several nights we put her down for bed unswaddled since we knew she was capable of falling asleep initially like that. Then when we fed her at 10, we'd swaddle her for the rest of the night. After a few days, we let her go unswaddled again to see how long she could go. I was prepared to let her cry a little in the middle of the night but go in to reassure her if needed. Finally, she made it from 7:30pm to 6am unswaddled. It seems like a gradual approach is working (but I feel the need to knock on wood right now, or possibly bang on it).

Now, as for naps, those are still a little tricky. Today was my first time experimenting with an unswaddled Chubadub. I have been hesitant to experiment because she already has trouble with naps sometimes anyway, and she often wakes up after 45 min. as it is. I knew the added arm distraction would probably not help these factors. And although I treasure her nap times as some much needed "me" time, I figured this weekend of all weekends while The Hubs is home, would be a good time to test it out. I am happy to say she did actually fall asleep for about 20-30 minutes, but just as I expected, was roused from her sleep and unable to get back to sleep after that which ultimately resulted in some crying and lots of grunting and squealing. There was just too much excitement in the crib (in other words, appendages to play with).

Because the gradual approach seemed to have worked for night time, I think I'll try one nap unswaddled per day for about a week (or less if it goes well) and gradually move to a bondage free nap routine. Wish me luck. This has not been an easy journey.

Also, I am not trying to leave everyone in the dark as far as my child's health is concerned. Basically there is no new information to report. We have not received any tests back yet and her next appointment is in about a week. I will keep you posted as we find out more. In the meantime we have been in touch with the Early Intervention Program. Our coordinator should be calling next week to set up some in-home physical therapy sessions. Free, at-home appointments = one happy momma.

Not in the mood ...

I'm really not in the mood to post today, but instead of making a bunch of phone calls and sending off emails, I would rather cover everything in one post. Most of our family and friends read this blog anyway so it's the cheater's way of informing the masses. I'm exhausted from taking care of a sick baby all week, and I myself am recovering from a doozy of a cold so this will have to do.

I've mentioned in several of my posts over the past month or two that The Chubs has not been eating well. It's gotten to the point that getting her to even eat 18oz a day is a challenge. Today, we visited a GI specialist at Children's Hospital. I won't even go into the bad memories that surfaced as I entered the building again. As many of you recall, this is where our daughter spent the first 2 weeks of her life hooked up to oxygen, breathing and feeding tubes and a million different monitors that liked to go off every few minutes.

I had to attend this appointment alone because The Hubs has been super busy at work this week. I figured it would be a fairly short appointment but we ended up being there for over 3 hours. This meant that the little muffin missed her morning nap, which under normal circumstances is bad, but considering she's still sick, it made it even worse. I won't go into all the details but they are going to order an upper GI X-Ray to make sure her small intestines look ok. They also drew blood, and collected a stool sample. She is now wearing a urine bag to collect some urine which I will need to drop off at the hospital later when there is enough in there.

They are ordering some genetic and metabolic testing to see why she isn't catching up with her growth. They also suggested physical therapy for her because they don't think her upper body strength is where it should be (not sure what this has to do with GI related issues, but it was a passing comment). Her little legs look great and are extremely strong though. No concerns there. We are also going to see an occupational therapist to have them watch a feeding and see if they can pick up any clues as to why she isn't eating well, and refusing the bottle after a couple of ounces. And instead of using polycose to add calories to my milk, they want me to switch to adding formula because it is richer in vitamins and protein. She had her blood taken last week to check for allergies, and we still have heard no word on that. In the meantime I'm not eating any dairy because it is the most common allergy.

The thing that really shook me up was the discharge forms that stated their diagnosis for this visit. It read:

• Failure to Thrive
• Lack of Normal Physiological Development
• Lack of Coordination

When we were at Children's the first time around we were constantly given the scariest scenarios. I feel like we're back in this same place again. I know they need to cover their bases, but sometimes it's just too much. This has been the longest, most exhausting week and it is definitely ending on a low note. My head is spinning and after watching my sick and tired daughter get poked and prodded all morning long, and trying to console her, I need to mentally check out for a little bit. I will be back to post updates as we receive them. Thank you for your prayers.

"Where everybody knows your...(boobs)"

When we were at Children's Hospital after The Chubs was born, I felt like my boobs were on display for everyone to see at ALL times. Between attempts to breastfeed and pumping, I rarely had a shirt on. It's embarrassing but also amusing at the same time when you go down to the Cafeteria and frequently run into people who have seen your boobs. "Oh, there's the neurologist whose seen my boobs", "Oh there's the dermatologist. Yep, also seen my boobs", "Oh and there's that random Asian dude that popped his head over our divider (3 times, no less) while I was pumping to grab the nurse."

As I've stated before, I'm a pretty modest person so this definitely stretched me beyond my comfort level, however by the end of our stay there I probably could've walked the entire hospital topless and not noticed. Once we got home though, I fell back into modest mode.

While we were at Children's we became very close with a nurse there. She signed up to become our primary nurse and was absolutely wonderful. I love her to death. Today I met her for lunch. She wanted to catch up and see The Chubs now that she is almost 4 months old. Prior to our meeting I realized that she has seen my boobs far more than any of my girlfriends. This was a little awkward for me. I felt like I needed to preface our lunch date with "Don't worry, I'll have a shirt on!!!" but I have a feeling that would make things even more weird.

Midway through our lunch I was feeling good, thinking to myself how silly it was that I would even think she'd remember my boobs at all. She's a medical professional for heavens sake! She sees this type of thing all the time. And then she made this comment: "I went to shop for nursing bras the other day and thought of you.." (well, that's sweet...) (Oh, and she's pregnant right now by the way...) "I remember you telling me that you went up (x amount of) cup sizes during pregnancy/after birth." (... where is this leading?) "I don't think I've ever met such a little person with such big boobs."

Ok, worst fear realized. She DOES remember. But at least she's not the Simon Cowell of boobs ("Those things are absolutely hideous.") In which case I would have to run away crying and hugging my chest to avoid whiplash in the eye.

(Not so) pumped

As I mentioned before, The Chubs spent the first several days of her life doped up on anti-seizure medication. The nurses at the hospital where I delivered were convinced the activity they had witnessed from the Senorita was seizure related and to not risk possible brain damage, which seizures can cause if left untreated, she was given a very high dose of this drug that left her a very very sleepy newborn. Sure, most newborns are very sleepy the first days of their life, but most do not have a tube down their throat to help them breath either.


It was my goal all along to breast feed. I had heard the gospel of breast milk from a breast feeding class I had taken and knew that "breast" was "best" so I was bound and determined to make this work. I had heard the horror stories from other women. How could something so natural be so difficult? I had told many people that I would not give up and make it work. Those women that couldn't get breastfeeding to work were just lazy quitters.

Now that I was faced with an intubated and severely sedated infant, I was starting to see the challenges. Even once she was extubated and had full use of her mouth again, the medication was still so strong that she could barely stay awake to eat. Nothing I did would rouse her from her grogginess. This went on for days and days. Lactation consultants would drop in almost daily and work with me. We did everything but pour ice chips down her diaper to get her to stay interested and alert enough to take a full feeding.

Even worse than getting her to stay awake at the beginning, were the scales they used. Once she was stronger, they started weighing her. Her pre and post weight was supposed to reflect how much she took from me. Many times it would say she took a negative ounce. Did that mean she burned a full ounce off while she was eating? I found this hard to believe as milk dribbled out of her mouth and spit up stained my shirt, but they would continue to keep us at Children's hospital until the numbers reflected that she was eating enough. I felt like a prisoner and I was desperate to get my baby home and start living a normal life away from alarms, IV's and oxygen tanks.

We tried the bottle. The normal flow was too fast for her and she would turn blue because she couldn't take a breath amidst the swallowing and gulping. It seemed as though she did much better at the breast, but it also appeared (at least to the doctors and nurses) that she just wasn't eating enough, or anything for that matter, from the breast. It was time to try something new. I knew that if we could find the right nipple for a bottle we could show them exactly how much she was taking each feeding without messing with the scales, and most of all, we could finally take her home.

With a lot of patience and pacing on our parts, we were able to get her to accept a bottle that was specially designed for small and pre-term babies. Finally she was eating an amount that could easily be measured by the nurses and as long as she kept it up, we could bring her home in a few days. During those days I had one mission; get my child home as soon as possible. This meant I was exclusively bottle feeding The Chubs pumped breast milk. It was working and that was really all that mattered to me at the time.

However, I continued to be pressured by the nurses to "try" breast feeding her. I tried to explain to them how if I breastfed her, the scales would say she wasn't taking enough and it would extend our stay, but they continued to push. At this point my flow had gotten a lot faster with the combination of pumping and previous attempts at breastfeeding with the Senorita and she was now choking on my milk when I tried to feed her. This created a new problem since they do not usually let you go home if your baby "bradys" a certain amount of times a day. (this means their heart rate drops which usually happens if they choke or hold their breath for a certain amount of time). Clearly, things were not going well and it is extremely hard to pace an infant on the breast as opposed to a bottle. Finally I struck a deal with the nurses that I would try breastfeeding 3 times a day and they would not do pre and post weights if I offered the bottle to her after a feeding session to make sure she got enough.

In the end we finally too Senorita Chub Chubs home and in all honesty I felt much more comfortable feeding her with the bottle once we were home. Here was my reasoning:

A) I had witnessed on the monitors what her heart did when it went into bradycardia. I did not feel like I was in control of this when I was breastfeeding her and it scared me to death knowing I didn't even have a monitor to look at when I fed her.

B) Most breastfeeding sessions would end in tears on both of our parts. She would choke, start crying and push away with almost every feeding then proceed to do a mondo spit up all over me because the flow had come too fast.

C) Since she was so small when we left Children's (about 4 1/2 lbs.), it was critical she gained weight. The only way to be sure she was taking enough was to see the measurements in a bottle.

For 6 weeks I diligently continued to try to breast feed at least 2 times a day to see if she would magically take to it so I could stop pumping. For another 6 weeks after that I offered it to her occasionally with a bottle as a back-up. Now in her 13th week I continue to work at it but it seems all too clear that she prefers the bottle at this point.

I have to admit there isn't a lot of support out there for Exclusive Pumpers. Most women either breast feed or formula feed with a bottle. You won't find many that exclusively pump. There are many challenges that go along with my choice. For instance, when we travel in a few weeks, I will need to find a family bathroom at the airport to pump at and won't have any options on the plane. Breast feeding in public is widely accepted where pumping in public definitely is not! When I get The Chubs up for her middle of the night feeding, I have to change, feed her, put her down, pump for 15-20 minutes, clean the equipment and store the milk before I can go back to bed again. And during the day time instead of getting some "me" time as soon as I put her down for a nap, I need to pump, clean and store again.

I'm not trying to play the "woe is me" card, but I do welcome gifts and chocolates to lift my spirits.

But in all seriousness, it was never a choice. Breast milk is the best for The Chubs so that is what she's getting. And until I become a dry well, or the motor on my pump goes out, I will continue to provide her this liquid gold. I may not be pumped about all the hours I've spent chained to these motorized suction cups, but this is my life for the next several months and I've accepted it.

Now for a picture:




JUST KIDDING!

All about poop

I never knew that once I brought a baby into this world that my life would somewhat revolve around excrement. Let's start with labor itself. I heard many women freak out about the possibility that they might poop while giving birth. To me, this wasn't a big deal. I'm a fairly modest person so I planned all along to simply have my husband and other medical professionals in the room when I popped our first child out. What was the big deal? It's nothing the doctors haven't seen before, and if my husband was brave enough to see me crown, he was surely brave enough to watch a little poo slide out. Because I had an epidural, I had no sensation or indication of whether I had pooped during labor. In fact in the midst of pushing that is pretty much the last thing on your mind (at least it was for me). After bringing Senorita Chub Chubs into the world (and throwing up a few times post labor) it finally occurred to me to ask my husband if I had pooped. Being the sweet man that he is, he replied "just a little bit". I don't know whether that was the truth or not. All of a sudden a feeling I didn't expect to feel overwhelmed me... utter embarrassment. My handsome, dashing husband had watched me poop! It finally sunk in and I finally "got" why women feared this.

I wasn't the only one pooping. Senorita Chub Chubs pooped immediately when she was set on my chest. Her first order of business entering the world (made her daddy proud). She didn't stop there. When the nurse came to give her her first bath, she had a continuous flow of poop that just wouldn't stop coming. I think the nurse was secretly annoyed since she had to keep stopping to wipe those cute little bebuns.

Fast forward to Children's Hospital and a jaundice little baby girl. Because she was doped up on anti-seizure medication, it was incredibly hard to get Senorita Chub Chubs to stay awake and alert enough to eat. I had many lactation consultants hovering over me, we even brought in an occupational therapist to try the bottle with her. Nothing seemed to be working and since this medication had a half life of 6 days, the critical first several days that most women have to work on breast feeding basically went to waste as my little girl was fed through an IV and core pack.

For a day or two she vegged out under the bilirubin lights with her stylish shades. And then a monumental day came. I heard a squirt and an explosion of gas. When I went to change her diaper there was the most beautiful glob of black tar I had ever seen. "She pooped!" I exclaimed in a far too excited tone. But in the back of my mind there was still something looming over me. I had not pooped yet. It was something I was dreading, considering I could barely sit down without letting out a small cry. Later that day I spent 45 minutes on the toilet hoping it would magically pop out. Hey, I had been able to push a 5 lb. baby out in a matter of minutes, why couldn't I squeeze a much smaller mass out just as quickly (if not quicker)? With many tears, grunts and "why me, oh God"s I finally did it. My daughter and I had our first poops since the hospital on the same day. It was a good day.

My daily obsession lately (well, I should say ONE of my many), is the color of my daughter's poop. My husband hears about this far too much because I think I make a comment about it each time I change her diaper. If it's green, I freak out. Why? Because I have done some very educated research through Dr. Google as to what this means. I have come to a few conclusions. A) Our daughter quite possibly and probably has a milk protein allergy and B) my breast milk doesn't not have an adequate balance of foremilk and hindmilk.

How do I have a foremilk/hindmilk imbalance if I'm exclusively pumping you say? Well, I'm not sure. Recently I've tried pumping longer to get out as much hindmilk as possible. However, I just changed her diaper and yep... still green! I also have not had any cows milk for weeks now. I'm contemplating trying to go without dairy all together and see if that helps. If you ask my husband he would say I just need to listen to our pediatrician who says there is nothing wrong with a breastfed baby having some green poop because it simply means it didn't hang out in the bowels as long. Sound advice, right? And considering I'm known by my husband as "lightning bowels" (I'll get into that later), it would make sense that my daughter would also have this "condition". I wish I was the type of person that could just accept that, however I tend to be a "fix-it" type of gal. I wish someone had just written an owners manual for Senorita Chub Chubs so I could reference it when her naps are cut short, she projectile vomits all over her clothes or she fusses for no apparent reason. And the common words of wisdom that "every baby is different" is absolutely no help at all. (If you haven't noticed I love using quotation marks)

Bet you haven't read this much about poo, well EVER. Hope it didn't stink too much.