When I got pregnant with Tubie, there was no question as to how she would be fed. Tutu was still nursing and continued to nurse up until a few hours before Tubie was born. When she was born and I woke up, we tried nursing right away. And at first she did really well.
When she was transferred to the NICU she struggled to latch. We both were struggling. My milk was coming in and she was pretty tired from all the testing that had been going on. We were trying to avoid a bottle right away and put in an NG Tube to see it some food in her belly would help her relax a bit. And it helped some. She finally nursed after 12 hours of refusing.
Then she stopped. There was no LC available on the weekend so after talking with the nurse, her doctor and my personal IBCLC, we decided to try a bottle. We mostly wanted to see if she would suck because at that point she was refusing my breast and a pacifier(given during transport to the hospital). She took the bottle great. We knew she could suck. So I started pumping like crazy and we started bottle feeding her.
The rest of her NICU stay was bottle feeding, pumping, her direct nursing two times a day and Tutu coming up and nursing once a day. My milk came in pretty fast so I was providing all of her nutrition.
After we got home we went to just nursing her but she started to lose weight again. We tried a few things starting with bottle feeding and at one point trying to fortify my milk with formula(my doctor tried to get us human milk fortifier but it could not be found). She threw up after any feed with any formula. We went back to just breastmilk bottles and she slowly gained some weight. Eventually she was clear for just nursing. We nursed for about 6 weeks when she stopped gaining again. This time however she refused a bottle. An Early Intervention feeding therapist came to the house and we couldn’t get her to take it. At that point she was well hydrated so we just kept nursing.
When she was 3 months old, she started having issues staying latched and that was when she screamed to even nurse. And when she did nurse it was enough to stop the hunger pains. We were admitted through the ER and after 9 days in the hospital she got an NG tube. We were discharged with the NG tube. She was getting 3oz of breastmilk through her tube every 3 hours around the clock. I wasn’t sleeping at all. We eventually switched to continuous feeds overnight so I could sleep some.
At some point during this time, Tutu stopped nursing. I don’t remember exactly when, I just remember, one day her not nursing anymore. She was around 2.5 years old.
She got her gtube at 5 months old when it became obvious that she was thriving with a feeding tube. She gained weight and was holding her head up better. Not having to work for her nutrition was what she needed. In addition the NG tube created an oral aversion so she refused to eat.
After her heart surgery, her dietitian and I sat down and had a talk. I was physically and mentally exhausted. With breastmilk in her feeds overnight, I had to get up every two hours to get more milk because it couldn’t sit out that long. I couldn’t pump enough in one session to make it safe to be out all night so we made the decision to use formula at night as long as we could find one that worked for her. We went straight to the most broken down formula. She kept it down but she was in horrible gas pain. So we backed off for a bit. Then the dietitian said she had luck with a different brand. Tubie did well on it. So we went to breastmilk all day and formula at night. She was still getting about 60% of her nutrition from breastmilk but my mental health improved so much and I was able to better care for her.
Sometime in May I realized we had enough breastmilk to get her to a year and I slowly stopped pumping.
After her first birthday, Tubie started a blended diet. That is just real food through her feeding tube. Currently we use a pouch of Real Food Blends and add some extras to give her more carbs.
I currently make 2 days worth of food at a time. To the pouches I add 1 cup of old fashioned oats, 1/2 cup of my homemade Greek Yogurt, 24 oz of whey(this is what strains off the yogurt and is full of carbs), 2 vitamins and 1/4 cup of honey. I do change things up sometimes using a banana instead of honey and almond milk instead of whey. To the last feed of the night she also gets 1 tablespoon of cornstarch to helps with her carbs over night. She get between 750 and 800 calories a day.
If Tubie gets too many calories she can become overweight easy. Because of her Noonan Syndrome she will be short stature and isn’t mobile yet. So we limit her to a healthy amount of calories that does not risk her weight. But we discovered after the growth hormones started she wanted more volume. So we supplement her volume with pedialyte. This keeps her weight healthy (although she is under weight for her age her weight to height is perfect) and full. We are working on getting her to eat orally.
While feeding Tubie definitely didn’t go as planned, it is what I know now. It has become a part of my daily life and it is a lot easier then I ever imagined.