With Crosby’s heart condition he had to be stabilized by the NICU team right away. He was not doing well and was taken away after I gave him one kiss. We did not get any skin to skin time, he did not get to breastfeed at all. He was gone to Children’s within 2 hours of birth and I would not even get to see him until Sunday night. Due to these reasons I did not get the immediate bonding time with him that I did with Henley. I truly feel that right after birth there is a magical bonding that happens, skin to skin and just having your baby with you creates this unspeakable bond and connection. I do not usually have regrets about my life but this is a big one, I really regret not getting that immediate time with him. That being said I know he needed to go away and we all felt relieved once he was stable at Children’s.
Crosby was “fed” TPN which is the very basic blocks of nutrition through IV. This prevented him from loosing weight as well as providing the basics needed is an easier way for the body to get what is needed without working hard to digest and assimilate the food. As I wrote in the previous post I was sending over colostrum for Crosby, it would be determined by the nursing staff when he could start “eating”. I was adamant that the first thing he gets was my colostrum. It was important to me that he got my antibodies as well as the basic nutrition from me not formula first. My requests were followed and Crosby started to get colostrum through IV at a VERY slow rate. They also had him sucking on a binky to work on his suck swallow breathe coordination, he seemed to take to that well and really liked the binky. It was great that he could suck so we did not have to get over that hurdle. Crosby ended up crashing Saturday night due to some other complications with medicine. They decided to take him off of food and put him back on TPN so his system would not have to work to digest. Every ounce of his energy was needed for the surgery and recovery. Post surgery he was still on TPN so he could just start to heal and not shock his system. S-L-O-W-L-Y we started to add the remaining colostrum that was in the freezer. Then we started to use the breastmilk that I had been pumping the entire time. I would feed Henley and then pump for 15 minutes after every feeding. The pumped milk was then stored for Crosby. As he got stronger they would decrease his TPN by certain caloric amount which was then replaced with breastmilk. On average breastmilk contains 70 kcal per 100ml. Crosby was tolerating the feeds pretty well, then things went down hill. While on TPN the body does not ingest solids so there is no solids to excrete. Crosby pooped once then became constipated. He was very irritable and uncomfortable, it became so much of an issue that we had to stop the breastmilk feedings. There is always a set back after surgery for us it was the feedings. His body was not used to real food and we had to kick start his system so it knew what to do with the food. It took a while but eventually we very slowly added feeds in again, he seemed to be tolerating the feeds and we would increase them ever so slightly every 12 hours. The hospital also would supplement my breastmilk to increase the caloric capacity, basically then added formula to the breastmilk and in turn he would get more calories which was the big goal.Once we were on the recovery floor he was off TPN and just being fed through his feeding tube. Unlike the TPN through IV he now had a feeding tube inserted through his nose down into his stomach. the supplemented breastmilk would be inserted into the tube and go straight to his stomach.
The first time I tried to nurse Crosby it felt very odd, I was so used to Henley and how she ate, felt, sounded, and acted. I was just getting comfortable feeding her and then I had to learn all over again with my baby that was recovering from heart surgery. At first it felt like I was feeding someone else’s baby, I really needed to bond with him and feel like his momma. Crosby latched so differently from Henley, he was gentle and almost timid. He did not have a lot of strength so for the first few times I fed him he would only latch for 5 sucks then fall off or go to sleep. It was frustrating but, at least he could latch and suck. We would try it more and more, eventually it started to feel more natural, my son and I were learning about each other and how to work together. Crosby’s main nutrition still was given via the feeding tube, we slowly increased the amount he ate per day and then started to slowly move the feedings from constant to bolus. This meant that instead of constantly getting food he would get a set amount but over a period of time, we could then increase how fast he was fed which would create a gap in time where he was not fed at all. All of these steps took days to work through. I am glossing over many details that also took place in order to concentrate on feedings. The closer we got to discharge the more we concentrated on feeding him. We met with occupational therapy and lactation, we tried bottle feeding him but the flow from the nipple was too fast as his vocal cord paralysis was a major hinderance in his suck, swallow, breathe. I was still putting him to the breast but was scared because I knew my letdown was too powerful or him. I would feed Henley for 10-15 minutes, then latch him and let him see what it was like. This seemed to work pretty well and his latch was getting stronger. Soon we were condensed on the bolus feedings where he would eat every three hours. We were taught how to work the take home pump for this feeding tube and were discharged.
We were home as a family of four finally after 3 1/2 weeks living at Children’s. It was a TON of work to feed Henley and make sure we got Crosby’s pump all set up with the fortified brestmilk and turned on. We started to slowly feed him from the premie bottle more and more, he got stronger and stronger with eating from the bottle. I would still allow him to breastfeed but his nutrition was coming from the pump and bottle. Once we fed him the same amount from the bottle as we were from the pump we decided to try to remove the feeding tube. Well, Crosby had his own plan, one night he just pulled the whole tube out on his own! I took this as a sign and did not replace the tube. We were just very diligent to feed him from the breast then from the bottle. It started 90% bottle and 10% breast but slowly it started to shift where he would eat more and more at the breast and take less from the bottle. It took about 3 months for him to not need a bottle top off at all. Crosby still eats very different from Henley. He is slower and not as strong, he takes more breaks and needs to breathe more but he is doing so well. I still cannot believe all that he as been through and how much we had to really work with him in order to get him to breastfeed. It truly has been a journey with him and I am thankful that Henley paved the way for us so it was a bit easier. My little boy is strong and so determined, I am proud that we can now work together and bond in that special way. I will never get back those early moments that we did not get to have, but I know that now what we have is special too, not just because it is breastfeeding but because of the journey we took to get here, together.
This is my wellness 