NICU Days 45 & 46 (Sun/Mon) (TCN 12& 13)

The last 36 hours or so have been rougher ones. The babies continue to thrive and excel, but we all have bad days and, sadly, they arent immune.

On Sunday night (Day 45), Bobby's feeding didnt go well. He is a guzzler and doesnt know how to pace his bottle when he gets REALLY excited about eating. As he is falling asleep, he wants to drink, drink, drink, but then forgets to swallow. So, I'm about to pull the bottle from his mouth because he's fading and, before I can get it out, he coughs. He starts to choke on the milk that is still in his mouth. He's coughing, I've got him sitting up and am patting his back. His face turns red, the alarm starts to go off as his heartrate drops into the 50s, and suddenly, he's turning blue. I'm rubbing his back and talking to him, the nurse comes over and watches (which, right there, tells you it wasnt as serious as it felt like to me, but my son is blue!). He finally gets his little heart above 100bpm, and then, it drops again. And we repeat. Two more times. Finally, the monitors quieten and I just have him laying on my chest/shoulder. He is completely wiped out. His little hands cant even hold onto my shirt or skin as he normally does in this position. Our nurse goes back to her station, Peter sits back down, and I cant help it. The tears start to come. All I can think is "Dear God, please dont let me lose him."

I realize that, in a NICU situation, this thought is somewhat irrational. I mean, had he been in a life threatening situation, I have no doubt that the nurse would have yanked him from my arms and a doctor or NP would have been on the scene in seconds. This is just par for the course. But to me, my baby was blue. My tiny, less-than-5-pounds (although not much less!), sweet baby boy couldnt breathe and was choking. It's a learning process. The rational part of me knows this. I know that, as they both learn to coordinate eating and breathing, this will happen. I know it happens when I'm not there to watch. But, just like Maya's apnea, those few seconds were a lifetime. And, holding him, as he went slack and his skin faded from rosy pink to a grayish blue... I've never felt sicker in my life. In mere seconds, he was back to his olive tone complexion, breathing easily, no less the worse for wear. But not me. I couldnt let him go to give him to Peter, so that he could finish his feeding. Finally, Peter told me that I needed to go pump and that I really did have to let him hold Bobby. And I did. But it was hard.

But to show that our little man has more fight in him that I do, as Peter was holding him and gavaging the remainder of his bottle, Bobby decided to pull his NG tube. Fun. (For those that might not understand this significance... The NG tube goes from nose to tummy. It delivers food, vitamins, etc, straight into their little bellies. Having it misplaced could cause them to aspirate whatever is being delivered.) Thank goodness, Peter caught him and it could simply be pushed back in and retaped. (I think that was Bobby saying "See Mommy! I'm fine!!!")

So, as Day 45 ended (and I didnt sleep well), Day 46 began with Maya's rough day. I got to the hospital around 8am and when I went in Maya didnt have her NG tube. It was replacement day. The nurse who had them isnt the most gentle in removing tape (there was a previous post on this last week...) and Maya's little cheek is red. I go to kiss it and she cries out and reached for me. I talk to her as the nurse tries to insert a new tube and Maya goes crazy. I have never seen tears like this before. She isnt crying with the "leave me alone" cry that is tearless and stops when whatever irritation stops. She is screaming with the "this hurts" cry and tears are flowing like little waterfalls down her face. The nurse stops with the tube, waits for the crying to go from sobbing into just chest heaving whines, tries again, screaming starts, the tube wont go in, and she stops. She tried twice more before I said that we needed to take a break. At this time, the NP came in to assess and she did Maya (since Maya was awake). Afterwards, the nurse tried again and Maya cried harder than before. I couldnt stop myself and I reached in and picked her up from her crib and just held her. She clutched her little hands to my shirt and buried her head against my neck and just cried. I told her how much I loved her, how strong and brave she was, and how, I promised, it would all be over soon. How she just had to relax for one more second so the tube could go in and then she would be safe in my arms and I wouldnt let her go. I put her down when she was no longer crying and the nurse got the tube in with no stress. Thank God. I dont think either Maya or I could have handled her not getting it in. (They wanted to avoid an OG (mouth) tube because she cant bottle without losing most of the milk and breastfeeding is practically impossible because she cant latch, but that was our next step if the last try didnt work.) Her milk was gavaged and I just held her. She was awake and quiet and didnt even move the entire time her feed was going in. Afterwards, we just cuddled close, I kissed her and held her. Rounds were beginning, but to the nurse's credit, she let me stay until the doctors were right outside TCN. By this point, Maya was asleep, but it was still painful to leave her.

The day doesnt get better. They had their repeat eye exams. They both are zone 2 still (which is based on age and normal). Bobby stayed at stage 1 ROP, but Maya is at stage 2 ROP. (They were both stage 1 2-weeks ago at their baseline appointment.) She will be seen weekly instead of every two weeks. It is possible that this will totally correct itself but if she progresses to stage 3, she will need laser surgery on her eyes to kill off the abnormal blood vessels so new ones can grow normally. Left untreated, ROP can progress to stage 5, which includes the retina detaching and blindness. Catching it early is the first step to stopping those. But, as anyone who has seen the exam knows, it is uncomfortable and the babies dont like it. There is crying. Poor Maya, because her exam lasted longer, had such puffy eyes that she could barely open them for a few hours.

By last night, operating on 3 hours of sleep in a 24 hour period and with the stress of the day, I was exhausted. I pumped and then went to bed. We have our final pediatrician interview today, so I decided to skip the hospital this morning (since I would basically go and turn around and come back) and go after the appointment, which gives me some time this morning to do laundry and housework. I also decided that I needed some mommy time. I pumped at 5:30 this morning and then, at 6am, went back to sleep for a 2 hour nap. Yes, it cut into my "powerpumping" time for the morning, but I needed the sleep.

Thank you for all your comments and emails about breastfeeding. I have spoken with a lactation consultant and I'm emailing a friend who is a LLL leader for advice. I am currently taking the MotherLove supplement and Saw Palmetto, and am hoping to see an increase in milk this week. Domperidone is not available in the U.S. (although I've gotten a lot of advice that it helps a lot) and Reglan, which is commonly prescribed, isnt recommended by any of the nurses or doctors I've spoken with. So, that cuts my prescription options. I've heard that Metformin can help with lactation. I am going to ask Dr B his opinion on that. While I'm not insulin resistant at present, perhaps it can stave that off with the helpful effect of increasing lactation. I'm pumping 13 times a day, including 2 sessions of powerpumping, and right now, I am making what they need. I am producing the amount needed for 1 full term baby, so honestly, I am not deficient in milk production. I'm just not producing what I need for 2 full term babies. However, I am still making slightly more per day than they are consuming (they eat about 640ml's right now, together; a full term mom is expected to produce about 700ml's a day for the first few months according to NICU literature.) So, my body is actually doing what it is supposed to do; just not what we need it to do. And, I am dropping off (I was producing 750-800ml prior to 6w; now I am at about 650ml). But I am working on it. We were hesitating to put them to breast because they werent getting much, but screw that. I'm going to buy a supplementer and use that to feed them while getting them on the breast and hopefully helping production. I'm continuing my affair with the moochine and, hopefully, the supplements will kick in and do some great help. I've read so many stories of them helping. On top of that, I'm going to add Mother's Milk Tea everyday. All I can do is try. I have to get over this feeling of failure; it isnt about me- it's about them. If I cant make enough milk, then I will feed them everything I can and then give them formula as needed, while continuing to try and increase production.

Thank you also for your thoughts about Peter and I. We are doing fine. Stress is better out than in, and we just needed to get ours out. Which we did. And everything is back to normal.

I'm so behind on blogs because the hospital computer doesnt allow me to get onto Blogger. And, since I am now living at their bedsides so that I can pump more regularly without the issue of driving twice a day to the hospital, the Internet isnt a top priority. I will try to post as much as I can when I get home and return your emails before bed. But please forgive me if I am a tad late! Thanks again for all those warm thoughts and love!!! And your prayers!