She grew!!!

I am so thrilled to share that Devyn finally grew!  She had her 9 month check-up at the pediatrician last Friday.  I'm pretty sure I held my breath the entire time she was on the scale.  Failure to thrive has been a tough pill to swallow.  I know that she has a suspected underlying condition (the kidney condition), but it still seems like such a judgemental diagnosis.  Anyways, she gained 2 whole pounds!  She's up to 15 lbs. 10 oz.  She also great 3/4 of an inch.  It was so exciting!

The pediatrcian walked in and was just as excited as I was when she saw her growth.  We talked and agreed that the extra calories in the formula we are giving her are a huge help.  I finally decided to switch her over completely to a soy formula.  She can't use a regular formula because of the milk protein intolerance, but the soy seems to be fine for her.  It's a difficult decision to make, but was definitely the right decision for her.  Her body needs the extra calories in order to grow.  She is also pretty much eating table food now.  It's much harder to monitor calories when they eat table food.  Baby food is easy to measure.  Having the consistent calories from formula should help her.  She still can't take as much formula as they like for a baby her age, but our pediatrician is fine with it.  She still thinks she will just be a smaller person...kind of like me.  I'm probably just shy of 5' 3".  She is now back on the charts and we are so thrilled.

When you become a parent

I've been thinking a lot lately about parenting.  When exactly do you earn that title of "parent"?  I think it kind of happens in stages. 

You of course become a parent the moment you find out you are expecting a child (or children in our case).  Before we knew we were having triplets I remember standing in front of the mirror.  I was just 5 or 6 weeks pregnant and thought to myself, "I will never look like this again".  I knew that I was about to sacrifice my body, my life in order to have a child.  It was the strangest feeling.  Little did I know how much I would sacrifice.  The strangest part is that you know it's worth every pain, every stretch mark, every difficult day. 

Then you go through difficult times and you become a parent all over again.  When Reese stopped breathing I suddenly felt myself being shoved into a new role.  I remember getting in the ambulance with him and being asked how much he weighed.  I started to sob.  I wasn't sure how much he weighed.  I guessed he was about 6 pounds (I was right).  It was such an overwhelming feeling of responsibility.  You would think that would have hit me when the boys were born, when we brought Reese home the first time or at a million other moments.  For some reason that day was when the incredibly responsibility hit me.  We were the parents standing in the corner of the ER room watching a team work on my child.  We were the parents signing waivers for our child to be operated on.  I have never felt more overwhlemed, depressed and unsure of myself.  It was exhausting.

I feel like I'm at another new stage of parenting.  Now more than ever I am at the advocacy stage.  I am learning how to fight for my children and for their safety.  I'm willing to look pushy and overbearing if it means getting answers and feeling that my kids are safe.  In the past week I wrote to a state representative about food allergies and restaurants and plan on writing to 2 more.  I stopped a neighbor on the block behind us to ask if she or anyone on her block feeds peanuts to the squirrels.  We keep finding peanut shells in our yard.  That makes our own backyard unsafe for Noah.  It is incredibly frustrating that our own home isn't completely safe.  I, of course, talked to her as a neighbor and a mother.  She completely understood and we ended up having a nice long conversation and she will now help do what she can to keep Noah safe.  (They haven't fed peanuts to the squirrels in years, so I still don't know where they are coming from!)  It's scary to reach out and talk about something I still know so little about.  But, if I don't who will?  If I let someone else do the work it may not get done. It's time for me to step up and advocate for not just my child, but others who walk this scary and uncertain road.  We have learned again and again that you can think, "Not me", but you never know when you will find yourself in a situation you could have never imagined.  It's time to step up and be the parent I want to be.

It looks like we have an answer

It looks as though we finally have an answer for Devyn.  I hadn't heard back from the Dr. yet, so I called yesterday afternoon and left a message.  I was trying really hard to be patient and praying lots of, "Okay, I'm just going to be really patient and wait", prayers.  Then I couldn't take it anymore.  I was sure they forgot about her, didn't know how to tell us some awful news or something terrible was going on.  I'm a worst case scenario person.  I can come up with some really crazy stuff.  I didn't hear back until this morning. 

The nurse in the GI office was the one who called me and said that the kidney specialist thinks she has renal tubular acidosis.  What now?  I have no idea what that is.  The GI mentioned it and I tried to read about it and then got confused.  I asked the nurse if this is something serious and what that means.  She said it's better to wait and talk to the kidney specialist.  Of course.  She then transferred me to the scheduling department to make an appointment with the kidney specialist.  Of couse since I think my children are the most important people to walk to planet I figured they would get her in like tomorrow, or next week at the latest.  May 1st.  May 1st!!!  I have to wait until May 1st to find out what is wrong with my child?!?  I asked if that was really the soonest they had.  Yes, it was.  She suggested talking to the GI office again and asking if this was serious and she needed to be seen sooner.  It's her kidneys.  How could this not be serious?  So, I was transferred back told that May 1st would be fine.  (audible sigh)  I really don't like being patient.  I want to know what is going on right now.  Hasn't the Lord taught me enough about patience these past few years?  Maybe it's not sinking in and he's still working on it.  I just want to know what to do to help her. I know I'll survive, but it will be a very long 6 weeks.  I may call and talk to our pediatrician to see what she can tell me. 

I haven't talked about the boys much lately.  They're boys.  They get into everything, break things, pee on the bathroom floor and toilet seat just as much as they pee in the toilet and wrestle like animals.  We finally got to go outside yesterday.  I let go of my dislike for all things dirty and chaotic and let them splash in puddles and run through the muddy yard. (pat on my back)  It was actually a lot of fun.  We went for a walk, played with bubbles and just took some deep breaths of fresh air.  Come on spring, we're ready for you.  It May 1st wanted to come quickly, that would be really great too.

Devyn update

On Tuesday Devyn had her visit to the GI dr at the University of Chicago.  It was a long day.  We met with the dr who discussed many different possibilities.  She suspected in part that she needed an increase in calories.  She also feels that a milk protein allergy is partly to blame.  She is allergic to one of the proteins found in milk and she will hopefully outgrow it by the time she turns one.  That would be so wonderful! 

She also wanted to do some further testing to rule out things like kidney disease and a fat malabsorption disorder.  I had to bring in a stool sample for testing.  In the mean time she called and asked us to bring in another urine sample because some of the bloodwork was concerning.  She consulted with a kidney dr after getting the results of the blood test and he agreed that further testing was necessary.  I brought in yet another urine sample (this was the 3rd).  I got the call today that she thinks the urine sample does indicate kidney disease.  She didn't want to make too many assumptions at this point, but she thinks that's what it points to.  She sent a message to the kidney dr and we should hear back from her early next week.  We may need to follow-up with a kidney specialist at this point.  I think we may finally be getting down to the bottom of this.

I also met with a nutritionist on Tuesday.  I'm sorry if you are a nutritionist, but I'm not their biggest fan.  I think they tend to be very one size fits all.  She pretty much told me that Devyn just isn't eating enough.  So, I guess I'm supposed to shove food down her throat?  She also suggested introducing some formula into her diet to bump up her calories.  So, I'm giving her 2 bottles that are a breastmilk/formula mix.  I'm introducing more solid foods (which I was already in the process of doing) too.  She's also slightly anemic, so they want her to take an iron supplement.  I'm always right on the border of anemia and was anemic during both pregnancies.  The nutrionist made it seem like this was the only issue and I knew that there was more going on.  Whatever.  I'll take her suggestions and see if it helps her.

All in all I feel like we may finally be getting to the bottom of this.  I'm so thankful that our pediatrician and allergist encouraged us to pursue this.  Hopefully by this time next week we'll know more and be able to find some solutions.

She's a puzzle

Devyn remains a puzzle to us and to the doctors she's seen.  I got her into the pediatrician last week and here's where we're at.

At her appointment with the pediatrican last week Thursday she weighed in at 13lb. 7oz.  and 26".  She pretty much hasn't grown in length and has only gained a little under a pound in 2 months.  They consider this failure to thrive.  It's a hard label for me to accept.  Although I haven't done anything to make it happen it's hard to hear the word failure attached to your child.  I was thinking that maybe I wasn't eating enough or drinking enough and my milk wasn't high enough in calories.  Our pediatrician was asking a lot of questions about her eating habits, pooping, spitting up and how things went at the allergist.  I told her he thought she could be lactose intolerant.  She didn't think so.  She said she would be unable to breastfeed if she were truly lactose intolerant.  So we were back to square one.  She said the first thing to do was a urinalysis to rule out a chronic urinary tract infections.  She put a bag on her and we collected a sample.  We brought it in and the labs came back that her pH levels were a bit high and she had a slightly elevated level of esterase.  Obviously we had no idea what that meant.  She said that was a sign that she may have a urinary tract infection, but that the lab may have left the urine out too long and caused false results.  They didn't even send her the results.  I was very frustrated because they assured me they would fax them to her right away.  They didn't send them at all!  I also need to call about her blood test results from the allergy testing.  I'm hoping to get those today.

Our pediatrican asked if I could collect another sample and bring it directly to her office.  So, this morning I put my nurse hat on and got Devyn all set up with another bag to collect the sample.  I brought her right to the doctor.  Of course we got there and there was nothing in the bag.  We sat in a room for about half an hour before she finally went and I was able to hand over her sample.  It showed about the same thing, just a little bit lower levels.  So it was sent off to be anazlyed and now we wait for those results.  At this point it doesn't look like a UTI, but we'll have to wait and see.

The pediatrician also agreed with the allergist that this warrants a visit to a GI dr. to see what they think.  I called and got her an appointment next Tuesday.  We're seeing a dr. at the University of Chicago, because it's been such a great place for us.  We were walking out of the hospital after Devyn's allergy appointment last week and realized we've been going to U of C for 3 years now.  It's amazing how quickly time has past and how many great doctors have helped us in those 3 years.  Now we're on another journey to start ruling things out and try to figure out why Devyn just doesn't seem to be growing.  I don't know what to hope for.  I don't know if I hope they find something or if they find nothing.  The time between appointments leaves me anxious.  I try not to worry or overthink it, because it does no good.  So, please pray for Devyn and pray for us.  I'm hopeful that the GI dr will have some ideas for us next week, but until then we just have to be patient.

An answer for Devyn...maybe

Well we still don't really have an answer for Devyn.  Although we might.  Let me explain.

I took Devyn to the allergist this morning.  We went to Dr. Wolf, Noah's allergist, to see what he thought about the possibility of a milk allergy.  Based on her symptoms he thought it was certainly possible.  We talked a lot and he said that he would like to see a scratch test done on her.  We did the test which puts a little bit of the allergen under her skin to see how it reacts to different triggers.  They tested her for enviromental allergies (trees, pets, etc) and milk and peanut.  She screamed from the itching and in the end showed that she had no allergies.  Huh? No allergies?!?  So, we were pretty much back to square one.

The other thing we discussed, which he feels is probably the case, is that she may be lactose intolerant.  It is extremely rare for a baby to be born with lactose intolerance.  He mentioned it before, but because it's so rare felt like that was less of a possibility.  All of her symptoms do point to it. 

He sent us down for a blood test to rule out milk allergy and we'll have to wait for the results of that.  For now we assume it's lactose intolerance.  He was fairly concerned about her very slow weight gain.  She's at 13lbs 9oz.  She has gained a bit of weight, but feels like it is still too slow.  She was 8lb 11oz at birth and then hit a little over 12 lbs at 3 months and has had a hard time gaining since then.  He suggested we talk to our pediatrician about seeing a GI.  We saw one with Aiden for reflux as a baby, so I know who we'll go to if we need to.  He said we can keep an eye on the weight gain and talk to her about it at her 9 month visit.  That's still a month and a half away.  So, I'm not really sure what we'll do. 

I'm not sure if I should feel happy about this or not.  On one hand I'm happy it's not an allergy like Noah's where I'll have to carry a second set of epipens.  On the other hand we'll have to change how we eat, yet again, when she starts eating with us.  I already am dairy free, but I'll have to cook dairy free for her and think about a whole new set of dietary restrictions.  I'm relieved that we may finally have an answers, but I'm left thinking, "Now what?".  I guess it's time to start learning..again.  It's a good thing I enjoy learning so much!  If anyone has had a baby with lactose intolerance I would love some guidance!

Allergy Check-Up

Yesterday was Noah's 6 month allergy check-up.  Our allergist was pleasantly surprised that we have made it a full year without another reaction.  That was a great reminder of just how serious this year.  Being a parent of a child with food allergies is so incredibly overwhelming.  We have been through some really stressful situations that have left me paralyzed and wondering how to move forward.  This often leaves me wondering when we will have to jump to action and use that Epipen that we dread having to use.  Knowing when he is having a reaction can be confusing and incredibly scary.  We thought he was having a reaction about a month ago.  He was coughing so hard that he was throwing up all over the hallway.  My hands were shaking, my chest felt tight and I just wanted to cry.  I wanted someone to tell me what to do.  The reality is that we have to decide what to do.  As the parent these momentous decisions are on us.  Thankfully he was fine and just needed to have a drink and use his nebulizer.  He was fine.  It just reminds me that we need to be ready for that moment when it's not okay.

We talked about many things with our allergist, including snoring.  He doesn't snore loud, but enough that he asked us to make a video of him sleeping to be sure he doesn't stop breathing when he's sleeping.  Apnea is very serious, so we need to rule it out.  I really think he's fine, but we'll make the video to be sure.

We also talked about the fact that he breaks out in hives on his face when he eats cinnamon.  He agreed that it's probably a "contact allergy" and the cinnamon is just irritating his skin.  The hives don't spread and he has no other symptoms, so it's likely not a problem.  We'll still avoid giving it to him, but we can all eat it without worrying.

When we talked about the fact that we haven't gone to children's museums or stadiums out of fear of him coming in contact with peanuts he agreed that we made the right decision.  He said it's not worth the risk.  Noah's allergy is considered fatal, so we should never take a chance.  It's heartbreaking to know that he'll miss out on things, but I want him to know that his safety is more important than any experience or event.  He'll just have to learn that everyone is different and deals with difficult situations.  His situation may be difficult at times, but he will still be able to live a life full of great experiences.

I also brought up the issues we've had with Devyn and reminded him that she came with to Noah's last appointment.  She was only 7 weeks old and already having a lot of gastrointestinal issues and had a rash.  We suspected then that it was dairy.  She still can't handle if I have any kind of cheese or milk.  He agreed that is sounds like a milk allergy, although he mentioned lactose intolerance, because of the rash.  He suspects milk allergy because of the rash more than anything.  He suggested bringing her in so we could talk about it and do the blood test.  Her appointment is nexty Tuesday.  The best part about the visit is that her inital visit is scheduled for an hour allowing for as much discussion as possible.  A typical visit is scheduled for 30 minutes.  What a blessing to have that much time with an expert on such a confusing subject.

As we left the room and headed out to the lobby I noticed a sweet little girl sitting with her mom in the waiting room.  She was sucking her thumb and holding a blanky.  That part reminded me of Devyn.  I couldn't help but notice that she was bald.  My heart ached for that mom sitting next to her little girl waiting for a treatment room.  The allergy/immunology department is on the same floor as pediatric oncology.  I can't even begin to imagine how that family must be feeling and how difficult their situation must be.  I said a prayer for them.  It's easy to get wrapped up in our own difficulties and forget that someone else is dealing with someone like cancer.  It's a great reminder to be thankful for our blessings and thankful that our kids aren't dealing with something so incredibly difficult.

I also come to the University of Chicago and leave with this strange feeling of warmth and joy.  It's been such a wonderful part of our lives for the last 3 years.  3 years ago we made our first trip there to see that I received the care I needed to deliver 3 healthy boys.  We've entrusted our kids to their care many times and we are so glad that we have.