In the NICU A was fed with a feeding tube. She ate whether she was hungry or not. She ate the full amount the doctor prescribed and never had a choice about it. I remember one time I watched as A writhed in pain because her belly was so full and they said they had to finish the feed. I kept watching her face and I knew that she was hurting and I demanded that they stop the feeding and they reluctantly did. We were one of those NICU parents that basically lived there. What would I have rather been doing then to be with my daughter, learning and growing with her? I know a lot of parents didn't have a choice because of work or other issues, but I was blessed with the ability to be there and be there I did.
I really wanted to breast feed A. But as you may know by now, you aren't able to do this without the doctors approval. So I really pushed for the Non-nutritive breast feeding. Of course she was only able to do this after she was de-intubated. I think the first time we NNBF was when she was on the Bubble C-PAP. We actually had a main nurse (we talked with the head nurse and had several nurses named as our primaries) and she was let's say "lieniant" on the NNBF and if A happened to swallow anything, our amazing nurse was happy and didn't stop her.
NNBF may sound so strange, it did to me! But I can honestly say, it was well worth it! We had lactation consultants that helped in our NICU and they even came to the NNBF sessions to access or help! I had to pump right before we NNBF. I had the most amazing milk supply ever! I am not exaggerating one bit. I pumped about 8 bottles every three hours! Not kidding!
When it was time to breast feed for nutrition, A knew the position and was comfortable with it! It is very hard for preemies to suck, swallow and breathe. So if you want to breast feed, do the NNBF and you wont regret it.
Before we were able to leave the NICU, they made you give your baby a bottle. I had a very hard time with this. I struggled a lot because I was worried she wouldn't want the breast after she learned to have a bottle. But I had to release it. She did well with the bottles. We left the NICU on oxygen. We had a machine that converted room air into oxygen and then also, we had tanks for when we were out of the house. We were very thankful to be going home, but the challenges that waited us were so unexpected and so difficult and as I am even writing this, it is still so fresh and painful to think about because it was so confusing and heart breaking to watch us all go through her feeding hardships!
We never faced the issue of having a G-tube or anything of this nature. I knew I was going to do everything I could to prevent anything like that from happening. I had to learn a lot of patience in the process.
When it was time to go home (after nearly 5 months) A was breast feeding mostly. The doctor told us we had to do bottles because she needed the extra calories. But when we got home, things quickly declined into disaster! A would scream, writhe, cry and buck like crazy every time I would try and feed her. She would latch on really well and then stop and start to act very upset. It was all I could do to not cry along with her. There was my little baby, obviously hungry and I didn't know what to do. It was not about "she will eat when she is hungry." I knew she was hungry and something seemed very wrong. I even tried to just let her skip feedings and we would "make up for it on the next one." But this didn't seem to resolve the issue at all. I knew my baby and I felt like the issue may have been with reflux.
I truly didn't comprehend the severity of reflux. It causes so much pain for babies, and preemies are very prone to have these issues. We called the doctor and they put her on Zantac. This was a liquid medicine that we had to some how get in her mouth and have her swallow! It proved difficult, but we did it. But then our "disaster" got even worse. A would be so hungry and would try to eat. I had begun giving her bottle more often now because I was able to coax the nipple in her mouth. It is nearly impossible to do that with your breast. I would get some down her, maybe 2 to 3 oz and she would vomit the entire thing up. I am not just talking about spit up, I mean projectile vomit that gets and goes everywhere. And this is with a baby that is on oxygen. She would then proceed to cry uncontrollably and inconsolably. She was hungry! If I tried to resume the feeding, she just didn't have the energy to do so. I started doing everything I could to try and ease her and calm her. But it truly just came down to the reflux and the medicine. So I called the doctor again. This time her put her on Nexium. I was beginning to have a flicker of hope that quickly dissipated when I saw the medicine and how it is supposed to dissolve and how much liquid is required for it. I could not even fathom A being able to take it. But, I tried. I did it while she was in the bath and just like I expected, she puked it all up and anything that I had hoped she had eaten as well. The amount of milk or water required for that is completely unrealistic for a preemie. And of course she was not eating her bottles well, so I was not able to try putting it in there.
This continued day and night and night and day. And in my distress I tried to do all I could to calm her and I began walking with her while she ate. That might have been a BIG mistake! Although, in my circumstance there wasn't much else I could do. It helped her eat, so it is what we did. At this point I was so scared that she would die, as irrational as that was, that I would stand on my head if I needed to. So here I am, preemie baby...HUGE oxygen tank and the tubing, a bottle curled around my fingers, walking aimlessly around our tiny little place every three hours, her puking every where, cleaning her up, me up, the floor, walls, furniture, dog (LOL!), and then trying to calm a screaming baby who is hungry but can't eat. And this was how I lived day in and day out. I just prayed and prayed and the medicine that kept coming into my mind was Prevacid. I called the doctor and told him I wanted to try this with A. I am not kidding you that I truly felt the Lord told me to ask for this. We started her on 15 mg once a day and then we even went to 15 mg twice a day and are still on that dose (as she grows she weans herself). And it has made a WORLD of a difference!!!!!!!!!!!!! IF YOUR BABY HAS REFLUX GET HIM OR HER ON PREVACID!!!!!!!!!! HANDS DOWN. It comes in a dissolvable tablet that you put in a syringe and then put in the corner of the mouth or cheek. It took some practice, but it was nothing like the Nexium in the amount of water it took to do it. (we chose to do it with water instead of milk.) The taste of the medicine is actually pretty good and A came to like it. Although sometimes the little pods made her gag bit. We would give it to her as soon and she got up in the morning around 6:30am and then after her afternoon nap around 4pm. We also had her bed tilted on her head side but putting blankets underneath the mattress. We also did this with her changing table pad. Changing her was always so hard because most of the time it triggered her vomitting. It just felt like we could not win in any of the situations!!!!!
One of the best things I can suggest for someone with a baby with acid reflux issues is the Rock N Play Sleeper. This single item was a LIFE SAVER!!!!!! It tilted up at just the right angle and was very easy to just push and pull where we wanted her to go even with her oxygen. It easily glided along the floor or carpet and she even slept in it for the first few months right by our bed. We used this to the DIRE end, up until she basically was wiggling her way out!
My advice in a package about reflux:
1. If your baby starts eating and then starts crying uncontrollably, if they trhow up entire feeds and if they do a weird coughing sound before vommitting..GET ON PREVACID!!!!!!!!!!
2. Tilt your baby's bed up on the head side. Use blankets or pillows to get a good safe tilt.
3. Do the same with your changing table pad, or get real good at changing them sitting up like I did! Kind of harder with poop, but sometimes I was ao afraird of her loosing her food, that I attempted this!
4. Get the Rock N Play Sleep.
5. Wear your baby as much as possible to keep them upright.
6. Know that they will probably still end up throwing up and try not to blame yourself.
7. Get a support system of people who understand. And when I say "people who understand" I mean those who wont just say "oh...they will eat when they are hungry." It doesn't work this way with preemies and this issue. It is a real problem and very very VERY hard for the families to cope.
8. Only worry about weight gain when the doctor says too. I bought a scale pretty much right away because that is how they programmed me in the NICU to monitor success. It was madeninng, however to me and I spent many weeks upon weeks torturing myself for every ounce A lost or gained. Yet, my doctor was never worried and as I look back, I realize I had nothing to be concenred about. It just was so hard for me to let that aspect go.
9. Remind yourself that you are not a failure!
10. We met with a gastro-intestinal doctor. We also had a speech therapist that attempted to help with the feeding issues, but it was not helpful at all. The gastro doctor was a good advocate and resource for us and was willing to even do a scope test if we needed so, but we didn't end up doing it for several reasons which I will mention at a later time.
So as she started growing, we came to the time where we could explore some different foods besides milk. I had found one good resource online that I will include in this post and they said to start early and go slow slow slow! I only bought organic baby food. I started with cereal (rice and oatmeal) and she did not like these at all and even to this day, she will not eat them. I offered her pureed apples and bannasas. What I did was merely just dip the spoon in these so she could taste them. It wasn't about her eating the whole thing or even eating to replace a bottle. This was kind of the Non-nutritive Breast Feeding of solids. It was just so she could get used to the tastes. But quickly she started denying even these. I tried at least once a day, but she began getting irritable and even throwing up when we would try. So I stopped for a couple of days and then came back to it. But when it came down to it, I sensed that she was just not ready.Honestly, it took to about April, YES April (that means she was almost a year, or 8 months adjusted) for her to take interest and actually eat something without me trying to coax and force her. She would not open her mouth to eat from a spoon at all. I would try to slip a bite in when I could, but it was just make her upset. I didn't want eating to become something negative to her. But one day in April I decided to try the Yo Baby yogurt and she opened her mouth as big as a baby bird and literaly ate about 3/4 of the entire thing. I recorded it in amazement!!!!!! Praise God! I never thought that day would happen. Since then I have tried to incoperate some other foods into the mix. But I wanted to get the foods that actually mattered caloric wise. If you look at the labels on baby food, it just doesn't seem worth the effort A gives to eating for the amount of calories in it. And she was never able to eat the entire thing. So I decided to research and here is what I came up with on what is worth the effort and calories:
1. Avocado. If you can get your child to eat avocado, you are golden!!! This is such an amazing fruit! It has the good fats in them and nutrients that will help brain and body grow. I let her lick the spoon that I mashed it up with and she liked it! I then tried to add some maynaise as well, or a little olive oil.
2. Yogurt. Get whole milk yogurt, Brown cow or Yo Baby are good selections and they have different flavors. The calcium is essential for bone growth and studies have shown that it helps regulate the digestive track and even sleep. And as your baby tolerates, sprinkle some graham crackers on top of it. Or even wet the graham craker in whole milk for moisture and feed with the yogurt. I also am starting to put small small chuncks of fruit in the yogurt. But for every bite with some consistancy, I let her take 3 or 4 bites of just the plain yogurt otherwise she may become frustrated.
****Important side note**** If you find a consistancy that your child does well with, or an item they love...SNEAK bites of avocado in with it. They don't have to be big chunks, but even the littlest portion of something nutritious like the avocado in each bite, can add precious calories to their body!
(to be continued)
