Tuesday, October 27, 2009

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!


Kate said...

I cannot imagine how painful it is for you to see the pain in Maya's eyes, or to see Bobby turn a different shade. Even if you logically know things will turn out fine its so scary. *hugs* I hope the bad days go away very soon.

Please keep us posted on the breast feeding situation. I rad the same thing about Metformin. Thanks to your post I've been doing a lot of research on it.

Anonymous said...

domperidone is available in the US. my local pharmacist, the one that actually MIXES the meds, made me some capsules. you can call around and find a pharmacist that mixes meds, and does not just dispense them and get domperidone.

quadmom said...

Wow, you guys had a rough day. =( I am sorry that poor Bobby and Maya had to endure so much. I will pray that things go much better next time and that Maya's eyes improve at the next exam.

cheryllookingforward said...

I think it's actually kind of cool that the nurse didn't step in with Bobby. You took care of him yourself! You are an awesome mom!

I'm still thinking of you every day and I love the updates.

Michelle said...

WOW what a scary couple days you had. I do not blame you...I would have been a basket case. Just reading this made me feel so bad for them and you. I hope your day is better today. ((HUGS))

Kerry said...

You are being so strong with all of this and your babies are really pulling their strength from you as well. You are doing a great job!!

Madie's pediatrician recommended Fenugreek when my milk supply wouldn't stay up. It is a natural supplement and smells like maple syrup. You might want to ask about it as it really did seem to help.

Juliet said...

What an exhausting and scary couple of days. Thinking of you and your family.

Leah said...

Sorry about Bobby and Maya's rough days. You have every right to be scared. You've been through so much already. I'm just so happy that they are both doing better.

Anonymous said...

First of all- it is NOT irrational to get upset/scared when your baby can't breath. Even if it is a hospital with doctors and nurses right there. That is your baby and it is scary. I am glad he is able to bring himself back with your help. I am glad you are there to help him through those times- it must be scary for him too.

Poor Maya!! I am SO glad you where there to calm her down. It is such a blessing that you are able to be there with both of them during these times. They know their mommy- it is a miracle how calming just a mommy's presence can be.

Don't worry about being behind on blogs-you need to get some rest and reset a little. It has been a rough week for you. We will be here waiting for your return- I will definately be praying for you all.


k@lakly said...

Here's some info for you on Reglan and breastfeeding:


Good luck!

Mother Knows Best Reviews said...

I can only imagine how very palpable and real that fear of losing them is, when you've had to do it before. Praying for better days! Hugs!

Anonymous said...

Oh Michele, I can only imagine how you felt in both situations with both babies. I will continue to pray for both babies. *hugs*

Thank you for sharing the information on breast feeding.

Donna said...

Sorry it's been a rough couple of days! It's so scary to see your child in pain or in danger. But you were great and handled things like a pro.

Sorry about the breastfeeding issues. I hope you can keep pumping and get into a regular schedule / system when the babies come home.

addingtothepack said...

I'm sorry you all had such a rough couple of days. I hope both of them bounced back with great days today!

Once A Mother said...

I know how hard it is to see your babies be uncomfortable, and how helpless that can make you feel. I am so sorry that Bobby and Maya had rough days. Sending much love and prayers for their time in the hospital to go more smoothly, and for them to be home with you soon. Also sending you prayers for strength, as I know how exhausting the NICU can be.

Debby@Just Breathe said...

Sorry about all the tough stuff. I can't imagine watching a nurse putting that tube in. Also watching Bobby as he turns blue.
Its been a rollercoaster of a day.
((HUGS)) God bless.

Baby Smiling In Back Seat said...

My little ones used to pull out their NG tubes constantly. Two of our happiest days in the NICU were the days their tubes were removed permanently. Hopefully it won't be long until Bobby and Maya can say goodbye to their NG tubes.