So, Allen is giving me one night. Cue Dreamgirls "One night only, one night only...." to get a good night's rest while he takes the feeds. He'll be off tomorrow so he can handle one day of being overly tired (plus his mom and dad will be here so I'm sure they will gladly hold the baby while he takes a few hours to sleep).
Signing off from Ambien dream land...zzzzzzzzzzzz
LaNell came for a 2 week visit to help with baby Addie and Lexi. She was a huge help and the kids loved her!
Grandpa Tweet (my grandfather, who is 94) came for a visit, too.
Addie loves to sleep like this. We promise we're not trying to suffocate her.
My trusty washing machine. It looks like I feel.
I also had a severe case of anxiety. As in I would contemplate changing lanes while driving and have a mild anxiety attack. When was the perfect time to change lanes? What speed? If I timed it just right, I wouldn't need to accelerate or brake. And finally, if successful, would be able to breathe again. I would rehearse over and over and over how I would run the following day. I would try to make sure I had everything exactly right so that nothing could possibly go wrong. I would stay awake for hours contemplating the correct time to wake up, leave for appointments, the way I would get somewhere, when to start dinner, etc. No joke.
After about 5 months of feeling this way, I walked up to Allen and very matter of factly said: "I want a divorce." He looked up from the paper and took stock of the situation, "You do? Ok..." I could see the trepidation on his face. He was wondering if I was really feeling this way or if I was just mental. "Yeah, and you have to keep the baby." And, boy did I mean it.
I called my doctor and the nurse asked me a few questions. She then said: "Have you ever thought about hurting yourself or the baby?" My response: "I'm depressed, not stupid." Her next question: "Have you thought about suicide?" My response: "Well, I've thought about a lot of things and I've realized death is the only way out, but no, I'm not going to commit suicide." Her next response: "You need to go to the mental health emergency clinic at the University Hospital (read: the place for all the real psychos) immediately." Hmmm. Maybe this isn't normal.
Our therapist asked me to describe how I was feeling. "Well, my heart races all of the time. I can't fall asleep ever. I listen all night for the baby to start grunting and moving around as she starts to wake up and then I get really mad at her for waking up. Then, I feel insanely guilty for being mad at my kid. I cry during the night and every time I feed her. I can't sleep when she sleeps because I need to clean the house, do the laundry, clean the stalls, etc. I have no energy." She said to me, "Honey, after 5 months, those aren't normal feelings. This is beyond the baby blues. Can I suggest something for you?"
So, I talked to my OB again and got on some anti-depressants and anti-anxiety meds. It helped, but I never did feel quite myself. I stopped them about a month before I got pregnant with Addie. I was a little worried that I would have the same problem this time around. But, I feel really good. Don't get me wrong, I'm still very tired. I still have moments, and sometime hours, when I wonder "what in the heck have I done?" I still feel like there isn't possibly anyone in the world who is as tired as I am, or as frustrated, or knows exactly what I'm going through. But, those thoughts don't preclude all of my other thoughts. I am able to see that this won't last forever. There are other people who have done this before and are alive (notice I didn't mention that they are well 'cause kids will make you crazy) to tell the tale. I don't resent Addie. She's been a real case and I still feel like waking up (you know, every hour and half right now). I have energy. I can muster a little patience with Lexi. I even feel like exercising. I feel like I'm in control of my feelings and body this time around. What a difference it has made for me through this last month.
When someone tells you they have had PPD, it's real. Listen to them. Just because you can't see it, doesn't mean it doesn't exist. Please don't say "it's hormones" and leave it at that. You know, it probably is hormones, but they can seriously screw a person up! I'm so grateful, especially with the extra challenge Addie has been, to be "wakin' up clothed in my right mind" (as Oprah said).
With all of that said, it really doesn't seem like a month has gone by. She's already rolled over twice, can lift her head and look both ways while on her tummy, and she coos just enough to make you forgive her for staying up all night. Currently, she's 22 inches long and weighs 1o lbs. 2 oz.
We met with the specialist at the University of New Mexico. He fit us in right away and was prepared to admit Addie to the hospital. He agreed that she has severe reflux and a very severe milk allergy. He tested her poop and it had blood in it - even though we couldn't see it. He felt that she was probably put together correctly on the inside and didn't have any bowel obstruction or anything, but was very willing to get her in if we wanted the pics. He noted that with it being the weekend, he was nervous about sending her home in her current condition. However, there were no beds available and he really wanted to avoid poking and prodding her if we could.
We came up with a plan: the max dose of Prevacid, a change to elemental formula (yes, it's the $50 for a small can stuff, and she'll be on it for at least a year), and an appointment first thing Monday morning to see if she's gaining any weight (babies should gain a minimum of 1 oz. a day). He told us to be prepared for a tough weekend while the medication takes maximum effect and the formula finally helps her tummy. He gave us his cell phone number, too, since he's not on call but wanted to be the one to take our call if something goes bad. He also recommended we put Addie to sleep on her tummy (she screams if she's put on her back because that is the position that allows for the most fluid to go back up her esophagus). On the tummy is the best position for kids with tummy problems. He explained that the whole "back to sleep" campaign started because of a few kids in New Zealand who had problems. They put their kids to sleep on thick fleece blankets there which basically suffocated some of the babies. He said on a regular mattress or in a bassinet, we would be totally fine. So, we're going to make those changes and hope for the best.
Allen happened to ask him if this was a genetic thing because both of our kids have had problems. He said absolutely. If we have kids, they have a 50% chance of having the same problem. He said if we ever have another, we'll know at 2 weeks if we have issues and should go immediately to the serious stuff.
One thing we both realized while at this appointment was how lucky we are to only be dealing with reflux. There were kids there that had problems that will effect their ability to function in society. Their stomach issues were obviously a side effect of their major conditions. There were kids there who were half the size they should be with serious mental delays. We are so blessed to have a girl who is mostly healthy and will grow out of this.
We also feel so grateful that we have the best doctors in the state at our fingertips and only 20 minutes away. We have so many great resources available to us here and they are all convenient. We are grateful we can pay all of the fees we've amassed in the last weeks. It's easily been hundreds of dollars in co-pays, hospital admission fees, ER fees and prescription costs. I never fear that we won't be able to cover those costs. There are many people with sick babies who can't even get the care they need. We have been challenged by Addie's health, but are so lucky to have every available resource to help her.
Up until today, she'd been eating 2 1/2 oz (80 cc) every 3 hours. Today, she ate 15 cc during her feeds. She'd cry in between feeds and act so hungry, but would get even more upset while eating. Finally, I made an appointment with the after hours pediatrician. She screamed the whole ride up and for the 45 minutes we waited to see the doctor. She cried the entire time we saw him. She cried while she ate during the visit (again, taking only 15 cc). Today, she cried from about 2 p.m. until 8 p.m. - almost non-stop. I showed him the video and he said this is very severe reflux with a developing food aversion. He recommended we get a picture of her while she is swallowing to rule anything out. He also upped her meds and told us to get on soy formula since the hypoallergenic we are on has trace amounts of milk protein and could possibly be irritating her still. He said it sounds like our regular doctor is on track, but we now know we're dealing with severe reflux and should act quick before she refuses to eat completely and drops too much weight.
We are now feeding her with a tube via syringe since she won't take a bottle. In between feeds, we're pushing pedialyte to try and get some fluid to stay in her. She has also lost more weight - almost a pound since yesterday. We have another appointment at our regular clinic tomorrow and hope to get the GI appointment made and a date for the swallow test. In the mean time, Addie continues to cry and cry and cry.
I have to admit, I walked into the doctor's office with tears in my eyes and it's been hard to maintain. Lexi is doing the best a 2 year old can, but isn't sure why we're always gone. She doesn't understand why Addie is sick. She wants to help feed her with the syringe and gets upset when we tell her no. She says, "It's ok, baby Addie. Don't cry." while we feed Addie. And, she is starting to act out because we're constantly preoccupied by the sick baby. I feel like I should conclude with a nice summary, but I really think that our situation sums it all up for itself.
Things have gotten so complicated with Addie's health, I've typed up a history to give to all the doctors we've seen. They seem to appreciate it; I see it as a sure sign we've been seeing way too many doctors and not getting nearly enough answers.
Last night at 1 a.m., Addie started pooping blood again. I could tell it was coming because she was kicking and screaming during her feed. She would grab her collar and pull down while screaming and sputtering. She was obviously in pain. She couldn't sleep between feeds and while she was awake, she was very fussy. This pattern continued until the morning hours. In the evening, she was still miserable. I called the doctor on call who suggested we go to the ER, again. My mommy radar wasn't telling me this was life threatening so I basically discarded her advice and called my great friend. Her great friend happens to be married to a great pediatrician. I wanted to talk to someone who would give me the real answer - not the "I'm required by law to say this" answer. He said to take her back in to the doctor and get a picture of her stomach.
This morning we went back in to the doctor. Our regular doc was finally back in the office after the Holiday so that made me much happier. I had decided, too, that I was very willing to go crazy mama to get results this time. I told her the Zantac was not working. I told her that I don't want another kid with an oral aversion who hates to eat because it hurts so bad. Something else that we discovered today: Addie has stopped gaining weight, too. Not the best sign if you ask me. I also told her my patience had run out and I really didn't want to be known as the mom that went ape sh*t, but I was pretty close to doing whatever it took to get this worked out. I'm done with the experiments. Let's just leap frog the crappy stuff and get to the good meds. Let's get the good tests run. I'm done. DONE!!!
She agreed with me. Mostly. We are now on Prevacid which is supposed to be the best stuff around for reflux. We also have Mylanta to give her a few times a day to help with the irritation. She didn't want to change formula and medication at the same time so we have to wait 2 days to see if we get a better response with the Prevacid. Our next appointment is Friday and if she still has blood or is uncomfortable during feeds, we have to change formula. This other stuff is broken down into amino acids and costs $50 for a small container. Aaaahhh!
I told her I wasn't waiting another month to figure out what is up with my kid. I want pictures to rule out anything serious and put my mind at rest. She agreed with me again, but wants to give it a few days. I swallowed deeply and gave her the look. She met my gaze with an equally defiant look. I could tell she was pretty determined to let the Prevacid work it's magic before making Addie swallow barium, get an ultrasound and have at tube jammed down her throat. Ok. I could see her point. So, we wait until next week. At the latest.
At this point, if we never have to see another doctor again it would be way too soon. It's been really hard to try and keep Addie's schedule with her tummy issues. She's constantly writhing around, crying, kicking, or throwing up her feeds which means she's totally exhausted from the struggle but very hungry because she can't keep her food down. I hate this battle. I would love to say, "but we're hopeful" but you know what? I'm not hopeful. I'm frustrated, tired and sick of having sick babies. I am grateful to have Addie. I can tell she wants to be a happy kid but is really hurting. I mean, really, I just want a kid that can eat and poop. Is that so much to ask? Can't our poor kids at least enjoy their first few years of food? Anyhow, I'm looking forward to getting on the other side of this challenge.
Even after the butt diagnosis, we were still on the lookout for any changes in Addie's habits. On Tuesday, she threw up. Not spit up. Threw up. Then again on Wednesday. Then again Thursday. We examined the pattern and decided something was amiss.
This is how things would go with Addie: We feed her 8 times in 24 hours. About half of the time, she would eat with no issues. She was eager and happy. She was content after eating and slept well between feeds. Then, she'd have one feed where she'd be a little less happy. She'd root around and act hungry, but as soon as she took the bottle, she'd cry and fuss. She pulled her knees up, arched her back and was miserable. Then, she would eat but would choke, sputter and cry through the feed. The next feed would be the same, but even worse with her taking even less food. This, of course, made it hard for her to sleep between feeds. Then, we'd get to the third feed with these problems. Finally, she'd eat a little, throw it all up, and about 10 minutes later would finish the bottle and seem happy. She'd be fine for the next four feeds. Then, it would start all over again. This had become a reliable pattern and it just wasn't sitting well with me.
My nurse friend called last night to check on Addie. When I had told her about the butt problem, she immediately called her other nurse friend and a pediatrician. None of them had ever heard of the problem and thought the method to fix it was absurd. She recommended we go to the ER as our doctor had told us to do if anything changed. She said that the throw up was a new pattern and a sign that something else was going on. So, we loaded up and went in to the ER.
We had another great set of doctors. We've had really nice, empathic doctors who are genuinely concerned about our kid. That has really helped since we've been going in almost every other day for the last week. They heard our list of issues and experiences and said that Addie was a pretty confusing case because she had so many different symptoms. They suggested we might need to have x-rays, barium tests and ultrasounds to rule out any conformation deformities (which is what our pediatrician had mentioned, too). Our initial doctor called in his boss to visit with Addie. He watched her for about 1/2 an hour and then started asking me some questions about her behavior. Does she thrust her tongue a lot? YES! Does she arch her back a lot? YES!
They both agreed Addie was a typical case of GERD, or acid reflux. We had over looked many of the signs because we had only seen Lexi's extreme manifestation of reflux. We figured the thrusting was a normal baby thing. We figured the barfing was normal. Hey, for us, it was a break to only deal with 3 fussy feeds and one episode of throw up compared to what we had with Lexi. Both doctors jaws dropped when we told them how we had experienced reflux and told us Lexi was not the normal presentation! Good to know.
So, Addie was given a prescription for Zantac. They both said to make sure if anything else develops or she doesn't seem more comfortable in the next 3 or 4 days, to take her back in. The throwing up will likely get worse before it gets better with a peak around 4 months. Most fluxers resolve by 6-9 months (which would seem like a dream since we had to live with it for 18 months with Lexi). But, the medication should reduce the pain factor quite a bit. It usually takes a few weeks for the acid to start hurting so Addie's progression has been normal and it's finally hurting enough for it to effect her feeding and sleeping. The major difference here is that when Addie does feel good, she is eager to feed. Lexi never wanted to eat and every meal was a fight. If we can just get Addie pain free, things should go pretty smoothly.
At this juncture, these are Addie's diagnoses: she has a definite milk allergy which manifested as blood in the stool. We will have to keep her on Nutramijen for the first year of her life. Then, we can try milk since most kids grow out of it in the first year. She also has reflux. She'll stay on meds for at least the first 6 months and then we re-evaluate. The poor thing was hurting on both ends! This seems to fit together so much better than the other answers we've received. I feel way more at peace with this new development than the previous ones. Before, it just wasn't settling well. I knew we were missing something. I didn't think reflux, though. But, after hearing the doctor and watching Addie, it looks pretty obvious. Hopefully, we'll get this kid comfortable and in a few months, this will be a distant memory!!!
- What started as a way to communicate with far away friends and family has become a place for this horse trainer/HR manager turned stay at home mom of 3 girls to hold on to a bit of her own identity. It's my take on the ins and outs, the ups and downs, the thoughts and feelings, the mistakes and triumphs of this family as we bumble our way to eternity.