Jen's Story-A Bumpy Road

My son Nicholas was born 4 years ago in February.  I knew before he was born that I wanted to give breast feeding a shot, and it was important that I tried, but I had no "goals" on how long to nurse him for, and I knew formula would probably be somewhere in the future.  I was (or am) the only person in my family who has ever breast fed ( I was adopted, so I was formula fed) and none of my cousins, etc. never even thought about breast feeding.  Unfortunately, in my family (and our society) formula feeding is the "norm".   He latched on so easily in the hospital and he was a champion nurser.  But he ate ALL of the time!!  What?? Was there something wrong with me?  Was it that he was just extra hungry, and I wasn't satisfying him??  Of course everyone around me told me so. 

I ended up nursing him for only a few months.  I had no idea the demands that came with breast feeding.  I didn't know that I wouldn't have a life at first, my house was a mess, I was feeling depressed, and I had no friends or family members for support.  I felt that if I felt better emotionally, I could be a better mom to my baby, and that was more important to me than how I fed my baby.  I was ok with it.  At first.  After a few months went by, I started getting overwhelming feelings of guilt, and I was wishing I could rewind time, and to do it all over again to go back to where I was nursing him.  Why wasn't I strong enough?  I couldn't just hang in there?  I now knew for sure that when another child came along, I was going to nurse that child for as long as I could, and not give up.  AND, it might be a little easier next time because I would know what to expect.

Wrong.

When I was pregnant with my daughter, I knew in my mind that I was going to breast feed her for a good while.  I didn't want to set huge goals for myself, so I knew I wanted to for at least 6 months, if I could make it for a year, that would be awesome, and if for longer when she weaned herself, better yet!  I now knew the importance of it, for her health, and that there is nothing more natural.

My daughter Juliana Grace was born on May 31.  She was so beautiful, tiny, and precious.  A perfect little Memorial Day baby!  She didn't latch on quite like my son did, and didn't eat well in the hospital at all.  She lost a significant amount of weight, but apparently that was normal to lose a certain percentage.  We were at the pediatrician every couple of days for a weight check.    Why is she only gaining an ounce in a week?? She nurses all of the time...what gives? The pediatrician was concerned, but he always encouraged me to keep on going, she is going to be ok.  At two weeks of age, something just didn't seem right.  My newborn is not sleeping at all, and is crying ALL of the time.  My son would say to me, "mommy, make her stop crying!!"  The only way to make her stop was to nurse her.  But then it would get worse.  I took her to the pediatrician, and she was diagnosed with reflux.  All the classic symptoms she had.  Two weeks of Zantac, and no better.  Medication was increased, still no better.  It got to the point where I would go to nurse her and she would scream and almost fight me. It broke my heart.  I even missed my brother's wedding because she was in such a horrible state.  I told her doctor that I was also concerned about her stools. They were so runny and green, sometimes with mucous.  Not your classic breast fed poo. Her doctor then had me eliminate dairy. At 7 weeks old, we are at the pediatrician again!  She is still no better, she is so thin and frail, and does not look healthy at all. The doctor is very concerned.  He then did a hemacult test and it was positive for blood.  I was in tears.  He told me she has a milk/soy protein allergy, and I needed to remove every dairy and soy ingredient out of my diet immediately.  He told me I would be eating all whole foods basically, and to avoid eating out, cross-contamination, etc.  He also gave me a # for a pediatric GI specialist in Philadelphia, and to have her seen immediately. I was so upset.  I can't imagine how this happened to her, I was so worried about her well-being, and how would I continue breast feeding on such a strict diet?  I have two kids at home, I can't cook EVERY meal from scratch! And I can't go hungry!!

I almost wanted the doctor to give me a magic formula that would make her better immediately, and just move on with life!  But, it was like he didn't give me an option!  This is what you do, and that's it!  So, I left the office in a fog, in tears, and knew this is what I had to do.

A week later, we went to see the GI specialist in Philly.  There is still blood in my daughter's stool, she is still crying, and I am weak and hungry.  At this point I am off all milk/soy products, all nuts, all seafood (my son has a seafood allergy so she is more prone) and eggs.  The pediatrician said it would take a few weeks for us to work the proteins out of our systems, but this is getting tiring.  The GI specialist pushed my husband and I to switch to the hypoallergenic formula.  She said that in her experience, babies do much better with it and the results are incredible.  I would have a new baby in a day or two!  Nope.  I wasn't giving up now.  As tempting as it was, I wasn't doing it. She gave me a list of ingredients to avoid (there were many) and a guideline of how much calcium I now needed since I wasn't consuming any dairy.  We left the office, and on the ride home my husband asked if I was sure I wanted to keep going. I knew he was concerned about my health, and I knew the no-crying baby was appealing to him too.  I said I just couldn't give up, I knew that in the long run breast milk was the best thing for her.  After about a month, Juliana was a happier baby and I added eggs back into my diet.  I was learning more and more which foods I could eat after several trips to whole foods and lots of label reading.  I researched her condition after hours on the computer and quickly learned that MSPI is becoming more and more common. I also ordered a great cookbook that another mother wrote who breast fed her baby on the MSPI diet.  I found an on-line support group, who also provided some awesome and easy recipes which was a lifesaver!!  (and yes, my whole family thought I was nuts for even considering to continue to breast feeding!)

At three, four, five, and six months old Juliana is doing beautifully!  She is gaining weight like crazy, meeting all of her milestones, and she is so happy and playful, and wants to follow her brother's every move!  Around 6 1/2 months, we even started just a small amount of solids and she's loving every minute of it.  Just a few days after Christmas, my husband went back to work after having a couple of days off, and we are getting back into our little routine.  We were playing on the floor, and I walked away for a second to grab one of her favorite toys, and came back to find her with a big smile on her face, with spit-up on her chin mixed with blood.  I looked down at her play mat, and it was on that too.  My heart skipped about 3 beats.  This can't be happening.  I called the GI doc. and she sent us to DuPont.  After spending the day there with multiple tests, they gave us the option of admitting her there for observation and more tests or to bring her home and do the other tests out-patient.  I brought her home because she was tortured enough.  The next morning she had a diaper full of blood.  This can't be happening.  Everything was going so well, why now??  I stopped all solids (the tiny amount she was getting) We went for an upper GI ~  Normal.  We follow up with the GI doc.  and she explains that I need to have her stool tested again in a week.  If its still positive, its time to switch to the specialized formula.  I told her no, I am not ready to do that.  So, she gave me a week, and if there is still blood then I need to cut out wheat and egg.  I didn't understand if wheat and egg were in my diet before and she was doing so well, why do I need to cut it out now?  Never got a clear answer on that one.  If she wasn't better with that, she told me I really need to consider the formula. If she doesn't respond well to that, she would have to do exploratory surgery in her tiny belly and bowel to see what is causing all of this.  I could not imagine her little body being put through so much stress.  So, I prayed and prayed she would get better.  She did!  Her stool was negative at the pediatrician and it looked normal to the eye too!  

Then  a day later I came down with thrush symptoms, and Juliana was treated with liquid Nystatin for prevention.  After all, she has enough problems, why play around with thrush too?  Well, her sensitive little belly reacted to it.  Blood in stools again, and tons of mucous.  I stopped the nystatin and  I took her to the pediatrician because it was not getting better, it was disturbing.  It also showed that she lost 6 oz. in a week.  She never lost weight before.  Even when she was in her worst state months and months ago, with diarrhea every day, she never lost weight.  Her ped. told me to go ahead and do the gluten free diet and eliminate eggs, which I did.  I've been on the gluten free/egg free diet for 5 days now.  (along with the MSPI diet) My supply dropped some due to stress, but I was able to get it back to where it should be. She went back to the doctor today and gained 2 oz. back, and her stool was negative for blood.  Was it the medicine, or is it wheat or eggs? The GI doc has respected my choice to breast feed, but is still pushing the amino acid based formula, because she feels it would be best for her, because in her experience she sees it do wonders for babies with these types of stomach conditions.   But what if its not best for my baby? She is now almost 8 months old, and I feel that at this point in time, I do not want to stop now.  Of course if medically necessary, I would do anything or try anything to make my daughter better.  But what if she's not better when she's not on my breast milk?  I would feel like I failed her in some way.  But for myself and for her, I can't be hard on myself, and I can't keep focusing on the negative.  It is so easy for us mamas to be so hard on ourselves, and to not see the good in what we do.  Four years ago, when I was nursing my son, I would never in a million years think that I could take my diet down to almost nothing to continue to breast feed my child! I need to try to stay positive, and to not get caught up in her struggles. I need to focus on these precious moments with her and with my son, because I will never get them back.  And for now, only breast milk it is!!!

Any other MSPI Mamas out there?  http://www.mspimama.blogspot.com/  is a wonderful resource with lots of easy recipes, a lifesaver for us! You can also search MSPI Mama on facebook too...its a wonderful on-line support group :o)