I've been working on getting Marcellus's breast milk donated. A couple days ago I finally finished the last step in the donation process. It was an up and down figuring out how to work it all out. This post is going to be about my experience with pumping both while Marcellus was alive and after he died, and my experience with trying to get it donated.
With Marcellus being such a preemie, there was no way he'd be able to breastfeed for awhile. He wasn't even able to have any milk the first day since he was on the ventilator. That didn't matter, I was going to get him breast milk! Before I was even pregnant we knew breastfeeding was very important to us and I knew I would do as much as I could to keep my baby breastfed. Marcellus being in the NICU made it even more important. It's so important for those little babies to get only the good stuff, the "liquid gold". They warmed me that with having a preemie and a c-section I might have difficulties getting milk. That some times you can pump and not get anything at first and that's ok.
I knew the sooner I started the better. I was so determined that I pumped for the first time before I even saw my baby. I couldn't go see him while I waited for the spinal to wear off anyway, so I got to work. That first time I got 1 ml! Yes, it was exciting to get 1 ml. I was doing something for my baby. I had to label everything with Marcellus's number (9136) and write the date/time. Even though Marcellus couldn't have any milk that first day and then after that he wasn't taking much at first, I had to build my supply up to what he would need. That meant pumping every 2-3 hours. And I did, setting my alarm at night. That first night I was in the hospital and unable to walk Mike was there with me. As long as he was around after I pumped he cleaned my supplies, whether it was when I was in the hospital, we were visiting Marcellus in the NICU, or at home. He was so encouraging to me always telling me how good I was doing.
I talked to nurses, lactation consultants, and watched the video they had in the NICU to make sure I was doing everything I could to not only get my milk in, but to make sure I had the best supply possible. I got discouraged when the second day it seemed like I wasn't getting as much as before. The lack of sleep was getting to Mike so the second night he went home to sleep. He told me to text him how much I pumped though. That night I got 7 ml! I was so excited I called him, I didn't care if he was sleeping he need to know how much I got.
Once I got the hang of it I was comfortable enough to pump at Marcellus's bedside in the NICU. That's when I got the most, when I was with my baby. When I was able to look at him in front of me and know exactly why I was doing it. I never really mind pumping while I was in the NICU when Marcellus was in front of me. When my milk came in I had some discomfort, I'll spare you the details, but I got through it and my supply was established. I was able to stop focusing on pumping exactly every 2-3 hours and more on getting 8 pumpings a day. That meant I could try to get a few hours of consecutive sleep at night.
When Marcellus was 6 days old there was a dinner held for the parents of babies in the NICU. There were 4 other moms there. They all had either experienced or were experiencing difficulties with their milk supply. By that time I was getting 80 -100 ml every time I pumped. I realized how lucky I was I didn't need to struggle with that.
It had almost become a competition with myself. Could I beat my old record for most pumped at one time? I did feel like I was constantly pumping, but like I said while I was in the NICU I didn't care. We were able to put up screens at Marcellus's bedside and honestly I didn't care who saw. I was working hard to get my baby boy what he needed. He kept going up on his feeds and I wanted to stay well ahead of him so that if any trouble did arise he'd always have a good stash waiting for him.
They gave me a log book to keep track of when I was pumping and how much I was getting. There were information things at the top of each page about breast milk and pumping. One of the said "Pat yourself on the back! You have been pumping for at least a week! Hopefully, you are able to get at least 30 ml (1 oz) 7-8 times a day." At that point I was getting at least 100 ml every time I pumped (roughly 8 times a day). Yes I was patting myself on the back, I was so proud of myself! With all the milk I was getting I started thinking about donating some. I heard of the struggles some of the fellow NICU moms were going through and wanted to help. I was going to wait until Marcellus came home to figure out how much extra I had and go from there. The day before he got sick, he got up to his full feeds - 28 ml every 3 hrs (we were so proud of him for that!). I was definitely way ahead of him and rapidly stocking up.
The morning before we got to the NICU of the day Marcellus got sick I had my first time dumping out milk and broke my record. My middle of the night pumping had to be dumped out because I forgot to put it in the cooler, at least it was only 85 ml I thought. My morning pumping smashed my record, I got 210 ml! Made up for having to dump the other one out. That morning I trotted into the NICU with my containers of milk. I told the nurse how I had to dump one out, but was showing off what I did have to bring in. If I would have known my baby was sick I wouldn't have cared about the milk. If I had known he was going to get sick and die unable to use the milk I was getting him I wouldn't have spent so much time unable to touch and hold him because I was always pumping.
But of course I couldn't have known that was coming. Although he was getting sick I continued to pump throughout the day, maybe not as vigilantly as normal. But I couldn't let my supply drop, he was going to need it (so I thought). I remember that night before he died when I came back into the NICU after shift change (about 7:30pm), Marcellus's nurse made a comment about how things had changed in 12 hours. He (the only male nurse in the NICU) had been Marcellus's nurse for the 5 nights prior. He knew my baby boy seemed healthy and well the night before and even that morning when he left (they work 12 hr shifts, 7-7). Then I go to make a comment about how my day started bad by having to dump out my milk. Oh like that even matter to what was going on. Why did I care so much about the milk!
I kept pumping through that night. Spreading it out as long as I could so I could just touch my baby as much as possible to comfort him (at that point we couldn't hold him because of him being sick). We went home late that night (after 1am sometime, and why we went home when he was so sick...I don't know, denial? That's a whole other post). I set my alarm to stay on my pumping schedule. Last time I pumped for my baby not knowing he was going to die was that night, 2:30am on 11/9/11, I got 140 ml.
Throughout the day that he was dying I pumped (never full pumpings) a couple of times, just to make sure I wasn't going to explode. That was hard. Knowing my baby was so sick and my milk couldn't help him. In the back of my mind knowing he was never going to drink the milk I was pumping just for him.
After Marcellus died, a nurse came up to me to talk about what I needed to do about my milk. I have issues regarding that experience. She came too soon, I couldn't comprehend a thing she said plus she gave me some misinformation. All I do know from her coming over there I decided to pump one more time before I left the NICU. I pumped while holding Marcellus. It was the closest I would ever get to breastfeeding him. I just had to do it. It might seem odd/strange/morbid to some, to hold your dead baby while pumping. It wasn't to me, it was important.
Now I already knew a little bit about the Mother's Milk Bank. We're lucky to be in a location that has one. I knew I wanted to donate whatever I had stored in the NICU for Marcellus. It would be Marcellus's donation. What I was undecided about was did I want to dry my milk up right away or continue to pump for a little while longer to donate more? They have a minimum requirement of 150 oz to donate (30 ml is about 1 oz). I honestly had no idea how much I had stored in the NICU, so I knew I couldn't completely dry up until I made sure Marcellus's milk was able to be donated. Another thing about pumping is that it was something that kept me connected to Marcellus. My milk was proof of his existence, it was there only because of him. It was his milk, made specially for him. I did decide to continue to pump and see how it goes.
After he died I felt like my milk supply had just increased. I was very emotional about my milk. I don't remember much of my thought process because I was in such a fog the days following his death. The nurse at the NICU had told me I could take 12 hr Sudafed to help dry up (the misinformation - she also told me she thought I could still donate while taking it, wrong.) I took one the first night and morning. Once I found out I couldn't donate while taking it though I stopped. But I still wanted to do something to slow down my milk. Even if I was going to donate I didn't want to be pumping all the time anymore. I couldn't handle that. A midwife that works with my midwife brought me sage tea to drink. I didn't even think about trying to figure out if it was ok to pump after taking that. It didn't cross my mind since it wasn't a medication. Plus I couldn't think straight at all.
Back in MN I continued to pump. I finally called (ok I had Mike call) up to the NICU (which is stored as Marcellus in my phone) to find out how much milk I already had to donate. The lactation consultant told me I had 70 some ounces there, but only 40 some could be donated. It was because after my c-section I was taking Percocet in the hospital. Ok, so I had to pump another 100+ ounces. I struggled with what to do. Finally I decided to go for it. It would for Marcellus, it would be to help little preemie babies have more of a fighting chance. Especially since formula fed babies have a much higher chance of getting what Marcellus got (NEC). I continued to drink the sage tea on and off just so I didn't have to pump all the time. I didn't care of it took me many days to get the amount needed for donation. I just knew I couldn't handle pumping frequently, especially in the middle of the night. The next day I got a call from the lactation consultant saying she found more of my milk. I had 153 ounces of donate-able milk! Everything I was getting in MN was icing on the cake. I decided to make a goal of 200 ounces. Well I ended up pumping over 100 ounces while in MN. I quit pumping some time before we left there. We were there 3 weeks and I think I kept it up for about a week and a half or about 2 weeks after Marcellus died. Deciding to quit was a hard decision for me. Having milk really kept me connected to Marcellus. I just felt like once it was gone it was like another piece of him was gone. But it got to be too much physically and emotionally on me to keep it up. Once I made the decision to be done I had to be done as quick as possible. I went back to taking the Sudafed while still drinking the sage tea. It wasn't very long before I didn't need to express at all, before I was milkless.
The day we left MN, actually while we were on the way to the airport I had the phone screening for donation and is when I found out I couldn't donate what I had gotten while drinking sage tea. I couldn't donate anything that I had pumped while in MN. I was crushed. We already had it packed up in the cooler and brought it to NC anyway to put in our freezer and try to figure out what we were going to do with it. Thank God the lactation consultant found that other milk I had stored at the NICU to get me above the 150 ounce minimum. I don't know what I would have done if I wouldn't have been able to donate what was there, that was Marcellus's donation. I couldn't let him down.
They sent me the donor packet via email. I took my sweet time filling it out. I'd go to answer the questions and just get overwhelmed by them. It literally took me weeks to finish filling it out and sending it in. I think it took me even longer than it would have because I was mad at them about the sage tea thing. I sent a lengthy email to the milk bank directly and spoke on the phone to the lactation consultant at the NICU. I pointed out the need to have very specific information available for mothers whose baby dies. I was not in the position to be able to make the decision immediately about continuing to pump or to look up information on donation once I decided to go ahead and keep pumping for another couple of weeks. Hopefully I will get the courage to call and check up on the NICU to make sure they are providing mothers with the support they need to make that decision and be able to follow through. The milk bank did give me the name and number of a researcher in NY that does research on breast milk. I have yet to call him to see if he can use what I have in my freezer.
I was able to donate most of the milk I had in my freezer. My midwife had a client recently deliver her baby. I had met this woman at a midwife walk just a few weeks before Marcellus was born. We were due 2 weeks apart. I missed her call and on her voice mail she said she had a 3 day old baby that wasn't getting any milk. She got my name and number from my midwife (who know I really wanted my milk to be used by a baby) and called. She was just looking to get some milk until hers came in. It took a lot of courage to call her back, but I just knew Marcellus wanted me, wanted us, to help this baby. I called her back and she took just 12 ounces, enough to hold her baby over for a couple of days. I told her that I thought of it as Marcellus's donation and he was the one that was helping, not me. She ended up calling again because she was still having difficulty with her milk. Her baby was getting jaundiced and she did notice quite an improvement once he had the breast milk. When she called she told me her baby was getting better and she said "thanks to you and your sweet boy". She has no idea how much that comment meant to me. It was so hard to talk on the phone with this woman. She had what I wanted so badly, what I should have had. She had her homebirth and her healthy baby boy. After I got off the phone with her I had a little breakdown and said "it should be us, we should be where she is. I want to be her!" But I was able to donate most of the rest of the milk out of my freezer, about another 100 ounces. I recently called my midwife for something else and she commented how much we (Marcellus and I and Mike too - he was the one that cleaned everything) had really helped that mom and her baby.
A couple days ago I finished the process to donate Marcellus's milk at the NICU. I had to go get my blood drawn for screening. They pay for it as long as it's at a Lapcorp location. I just picked the one closets to our house and Mike came with. I checked in. Now the typical breast milk donor is a breastfeeding mom that just has way more milk than her baby needs. She is able to feed her baby and provide milk for donation (if you ever have this "problem" please consider donating!). I knew the nurse might think that was the case for me and say something about my baby. She did, the first thing she said to me was "How old is your baby?". I responded by telling her he was born in October but died at 12 days old. She went on to say what most people do that are caught off guard by the "dead baby thing". She said, "Oh I'm sorry, I didn't know". I told it's ok, he's still my baby. Why do people think it's bad to ask me about my baby just because he's dead? He's still my son and I still want that to be acknowledged. Anyway after I told her that she simply stated "He's with the Lord now." The way she said it was so matter of fact. I've never had someone respond that way to me before. She didn't try to say it in a comforting way like "Oh its ok, he's in a better place" or anything like that. She simply stated what she believed and in turn what I believe. She was able to say it with out belittling my grief. I kind of stumbled and told her how yes, he is and that we aren't in pain for him, we are in pain for ourselves. She said "of course you do, because you're not there with him." Somehow the way she said it and everything just made me feel like she "got it".
As a Christian I do believe my son is in Heaven with the Lord, but that doesn't make it any easier for me down here on earth. Most of the time when people try to reference Heaven or Marcellus being an angel, it's in a way to try to comfort me, make me feel better, they say it with a lighter upbeat tone. Well it doesn't make me feel better, it doesn't change the fact that he's not here with me. And just as this nurse said, I am not there with him. While drawing my blood I told her why I was donating my milk and that Marcellus had been in the NICU. She seem thoroughly interested in him and even asked if I got to hold him. I couldn't help but feel that she was meant to be the one drawing my blood that day. I just think of all the ways she could have responded or things she could have said. She also took a risk saying something like that to a total stranger. She didn't know what I believe.
He's with the Lord now. What a simple and powerful statement. Now only to struggle through the rest of my life so I can be there with him. Can't I just be there now?
Marcellus, Hope you're saving Momma a spot right next to you in Heaven. I really can't wait to see you again someday my sweet sweet boy. Also, think of all the babies you are helping with your milk. I'm so proud of you! Missing you every single day. I love you so much! xoxox