Happy Halloween

It's Bobby and Maya's first Halloween! We dressed them in their "onesies" and a nurse made them a special hat. Stay tuned for pictures this week!

7 weeks (NICU Day 19; TCN 16)

Happy 7 week birthday, Bobby and Maya! Too bad we couldnt get a picture of the most awesome little moment. I was holding them and Bobby's hand was on Maya's shoulder. Then, he opened his eyes and he brought his hand to her face, then he'd pull it away and watch her move. Then again. And back. And again. And, cute of all cutes, she kissed his hand (I think she was trying to get his thumb to suck!) It was adorable. He fell back to sleep with his hand at her mouth. So cute. But it was dark and we didnt want to turn the lights on for the photo op.

As of 7 weeks... Guess who has crossed the 5 pound mark! Maya has doubled her birth weight and Bobby is on his way there. Maya is now 4lb 9.4 oz and Bobby is (gulp) 5lb 0.8oz. He took 58% of his feeds by mouth yesterday and she took 32%. Bobby is very excited about his milk, while Maya is excited about her beauty rest! But we arent pushing them. Whatever they want to take in is fine. When they tire out, we dont force the rest of the bottle. Tonight, however, she was soooo happy after FINISHING her bottle for daddy that she was still sucking. I had just pumped but started to leak, so she actually finished with the breast. We dont know how much she got, but she fell asleep there! (Bobby left 15 ml in his bottle as he fell asleep, so the poor guy missed out on the boob...)

And speaking of breasts and milk, today was the first day that I noticed significant improvement! I did add the tea tonight at the hospital, although I doubt it worked that quickly. But, I ended up producing 13ml more than they need for the day! (And that was with their feeds being increased over previous days!) I am really hoping that the pumping and herbs are going to make a HUGE difference. But even a small one helps.

I've had questions via email and comments about the SNS and how it works. Basically, you fill a little box with breastmilk (or formula). Two thin tubes then are taped to your breasts. When you put your nipple in the baby's mouth, you also put the end of one of the tubes. (They are tiny.) Then, as the baby sucks, the milk flows through the tube (so they get nourishment, which helps them suck deeper) and your own breast flow is encouraged and released. Eventually, the hope is to wean from the SNS and have just the breast give them milk . So, it will still require me being hooked up to the moochine so that I have milk to give, but I am hoping that it stimulates let down and helps with traditional breastfeeding.

And, speaking of the moochine, my dear friend Chelsea has come up with a name for the "object of my affection". I mentioned that I feel like I am having an affair with the pump and she decided he needed a name (since he is the other "man" in my life). And she came up with... (drumroll please...) Milk Gibson. Say it fast enough and it almost sounds like "Mel". Even though I dont find Mr. Gibson attractive in any sense of the word (sorry, Mom...), I cant argue that naming the pump that isnt funny as all getout... Too bad we couldnt come up with a name that was closer to Daniel Craig... But his name doesnt work with lactation jokes... (I welcome your names for my pump as well... How creative can you get?)

Lots of Quick Updates...

Wednesday: NICU Day 48 (TCN 15)

Things are going well. I spoke to the NP, who explained the eye surgery if Maya turns out to need it. Apparently, it takes only a few minutes. What takes the most time is the prep work (the baby has to be sedated, paralyzed, and intubated and it takes approx 24 hours to get them back to normal). We are just praying that her eyes regress back to stage 1 and that there is no need to even consider surgery! They got their baths by daddy last night and lots of cuddle time. I took Christmas cards and worked on addressing them while the kids were sleeping. Bobby took in 52% of his feed by bottle/breast and Maya took in 32%. Growing babies!

October 27th:

I've had a post about this day in my head, but I'm just not ready to share. I thought I would on the 27th but it just couldnt come out into words... This is the day that Nicholas and Sophia were conceived. Our lives have never been the same. We both knew from the start there were two and that they were a boy/girl pair. I cant explain it. We just had these feelings. When an ultrasound confirmed that I'd ovulated two eggs and they'd both fertilized, our thoughts were confirmed. We love you, Nicholas and Sophia. We know you are watching over your baby brother and baby sister, and mommy and daddy too.

Breast Milk Production:

Thank you for all of the emails and suggestions. They are most appreciated! I've noticed a small increase of yesterday over Sunday, Monday, and Tuesday (when I started keeping a log) and this morning is promising, too. I am taking 2 caps of saw palmetto daily, along with 6 caps of More Milk Special Blend (which has goat's rue, fenugreek, blessed thistle, nettle leaf, and fennel in it). I'm also having a Guinness when I can (maybe once a week?) and oatmeal for breakfast (although I ran out for this morning!). I have to go by Whole Foods for more oatmeal and Mother's Milk Tea.

I am staying hydrated (and I drink extra when pumping) and am averaging about 4-5 hours of sleep a day (which is keeping me going). I sometimes doze by their bedsides, too, for an extra refresher. I've lost the hour of sleep I would have coming home from the hospital since I usually have my car there at night, but it's not really bothering me.

I talked to their nurse yesterday and the babies have not received any formula. Daily, I am making (mostly) enough (save a few cc's on Tuesday and Wednesday) and, because of the storage of previous milk, there is enough to supplement. So, I am hoping to keep that up! And more!

I ordered my SNS and it shipped yesterday. I cant wait to try it. I hope that it helps me, but most of all, I hope it gives Bobby & Maya good breastfeeding experiences!

NICU Day 47 (TCN 14)

Two weeks in the Transitional Care Nursery! Woo Hoo!

The babies are doing much better today than yesterday. Bobby has nippled almost 60% of his feed and Maya has done 40%. One of the nurses showed us a new way to bottle feed that has helped. Using a pillow under my arm, I lay them at about 40 degrees on their side with their back against my body and feed them. They can still see my face by apparently this position helps babies learn to suckle more effectively. It's working. We are seeing a huge improvement. Bobby took 2 full bottles today and Maya took one full bottle! This is great news!

Day three of my breast milk mega journey and today is the first day that I didnt make enough milk to feed them for the day. :( I was only down a few mils (and thankfully they have enough from previous to make up for that). I am hoping tomorrow will be a better day.

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!

Musings... #3

Thanks for all the sweet comments to yesterday's post. While we dont always feel the stress because we are trying to stay focused on the positives of our situation, I think we both realize that there is an underlying current. I'm sorry we fought but maybe we needed to just vent out our frustrations and there wasnt another way. I dont know. We're at an impasse with what we fought over so we just made the choice to let it go. We stopped prior to going into the NICU and had a few more (much calmer) words and then decided there was no where to move forward in our argument. What's the point in staying mad? There's just so much energy involved... energy we just dont have to give. It's easier to move on.

***

Here are 2 of my favorite pictures from yesterday...

It's MY bottle... Don't even think about taking it, Lady.

Oh... It is such hard work being a baby...

***

Thank you, Body, especially you, PCOS, for trying to take the one remaining, normal pregnancy/post-pregnancy thing from me.

So. Breast milk production has been the one thing that I've been kind of good at the last 6 weeks. This, of course, means that my body has decided to no longer play nice and cooperate. Bear with me as I try to articulate the issues.

Remember how I said that the babies would suckle so well and then we'd weigh them and they'd show a 0 transfer? I'm beginning to think it wasnt them- it was me. I started reading a book called "The Breastfeeding Mother's Guide to Making More Milk" and, as I was reading, I started noticing that our babies were displaying some of the behaviors they mentioned of babies who couldnt get enough milk from the breasts. I decided to pay close attention to them during our next breastfeeding time and, sure enough, they worked hard, finally started thrashing as though they were ticked off, would give the breast another chance, then just stop sucking altogether. Because they'd suck for a good 15-20 minutes, we weighed them and zero transfer. I even talked to the nurse afterwards about just giving them the bottle of pumped milk instead of breastfeeding because I didnt want to lower their daily percentages when it was obvious they could and wanted to suckle. But the nurse, a lactation consultant as well, said no, to put them to breast every time and that the issue was probably their immature sucking, not my breasts, since my production was good. So it must be them... Not me... Okay... We can work on this... Yet, every bottle, they do the same thing and transfer a good amount, but okay...

Over the last couple of days, though, I noticed my milk production starting to drop off. At first, it wasnt that noticeable. Instead of each breast filling at 60ml bottle at about 3 hours in between pumpings, it would only hit 50-55ml. My nighttime pump, if I got a good "long" sleep of 4.5-5 hours, went from being 200ml to 180ml (total). I didnt think much of it. But then, yesterday, my marathon pump only delivered 150ml. Strange, I thought... Then my next pump only gave me about 45ml per breast. So, I decided to pick up the book and keep reading.

• Around 6 weeks, apparently, drop off is normal in mother's of preemies who have to pump as their almost exclusive breastfeeding method.
• Women with thyroid issues tend to produce less milk.
• Women with PCOS tend to have issues with production and let down. They also, if they have larger breasts, may have breasts with a higher fat content and less mammary tissue.
• Women with PCOS may find that their breasts dont enlarge post pregnancy, which could be a sign of the lack of tissue.

I could go on, but suffice it to say, I was reading in horror. I'm using a galactogogue (MotherLove More Milk Special Blend) and I'm still seeing a reduction in milk. This isnt good... The MotherLove has the main herbs associated with improving milk production in women with PCOS (it is specially blended for that). I decided to buy saw palmetto to add to it, since the book notes some increases in women with PCOS who started to lose their milk. I figure I can try that this week and see if it works before talking with Dr Bailey on Friday. Another book suggestion was to pump very frequently to try and convince my body that the babies were eating all the time. Yesterday, I tried this by pumping 3 times in a 2 hour period. I didnt really notice a huge increase but you have to give this method some time. I pumped again 3 hours later and then again 3 hours later, and didnt notice an increase over my recent standard amounts. I'm plugged in now and wondering if this megapump will give me closer to 200 or closer to 150...

If the babies were home, this wouldnt be much of an issue. I am producing what they are eating ever 3 hours (40ml for him and 38ml for her), but because they fortify 200ml of breastmilk at once, they have to have larger quantities. Some of the nurses say I'm a great milk cow, others make it seem like they are running on empty. Which doesnt help emotionally. In the freezer at the hospital, they have about 300ml; as of last night, they had enough to get through the 8am/9am feedings in the fridge, without thawing anything. My pumping at home last night made only 75ml combined; I dont know what this pump will give, but assuming a minimum of 150ml, that at least gives a bottle to fortify, which will handle 2 feedings plus a bit.

The nurses told me yesterday I need to produce approximately 700ml to feed one baby and pump every 2 hours to try and get that up to the amount needed for twins. I'm not sure how I can manage this, although, I'm trying to figure it out. I desperately dont want to formula feed them. (Not that there is anything wrong with that... I was formula fed and so was Peter. This is just the last thing that I have really wanted to give our children and so far, it was the only thing that seemed to be working right with my body. The idea that I'm going to let them down (no pun intended) in this too is excruciating.) They also recommended keeping a list of when I pump and how much I get so that I can notice an increase/decrease, as well as see how I am doing getting in my 12 pumps a day (they put a minimum at 10 pumps a day, if I want to sleep more than 2 hours at night). They (like the book) also recommended "power pumping" (multiple pumps in a short span for 10 minutes each time or pumping a bit every hour) to try and trick my body into thinking the babies need to eat more frequently because I am emptying more frequently.

I am willing to do whatever it takes. I dont want to give up on the dream of having them at breast versus only breastmilk in a bottle, but if I am not having an ejection response that lets the milk flow right now, then that is something I will let go for the sake of having enough milk to bottlefeed them. We've pretty much made the decision that, until I get my production up, we shouldnt "hold them back" per say by trying to at-the-breast feed them and should give them their bottle and then have nipple time that isnt being scale measured. Last night, they were both so frustrated as they tried and tried to breastfeed and couldnt get enough to satisfy their hungry tummies. Their sucks are hard now and they are perfect little latchers, but no transfer. Not one drop. We ended up gavage feeding them while I kept them on the breast. I couldnt help but cry. I just wanted to give Bobby (who was the second fed) to Peter so I could go and pump and hope that I got a large amount. I didnt get a large amount, only a total of 75ml for both. Yep, I cried. That was after 45 minutes of pumping and hoping I'd have a second letdown.

So, this coming week, I'm going to live at the hospital. This is the only way that I can give them breastmilk instantly so that they wont run out, and it will also save me time so that I can pump well. I figure I can try the following schedule, but that only gives me 8 pumps in 24 hours.

5am-5:45am: pump at home

6:45am: leave for hospital

8am: Maya's care time

9am: Bobby's care time

10am-10:45am: pump at hospital

11am: Maya's care time

12pm: Bobby's care time

1pm-1:45pm: pump at hospital

2pm: Maya's care time

2:45pm-3:30pm Shift Change/ pump at hospital/grab a bite to eat

3:30pm: Bobby's care time

4:30pm-4:45pm: pump at hospital

5pm: Maya's care time

6pm: Bobby's care time

7pm-7:45pm: pump at hospital/ Peter arrives

8pm: Maya's care time

9pm: Bobby's care time

10pm-10:45pm: pump at hospital/grab a bite to eat/leave for home

Midnight-12:45am: arrive home/pump at home

To try and add in a ninth pump, I could try setting the alarm for 3am, but I'm thinking that I'm really going to struggle with a 3am-3:30am pump time, after going to bed at 1am and needing to get up by 5am to get pumped and on the road. But right now, I'm struggling to get 6-7 pumps in a day because of travel time. So, this will at least get me up to 8 regular pumps a day. And the time at the hospital flies by. I think there is no other way for it to be, since everything is divided into one hour per baby, and then I have an "off hour" which is filled with pumping. Even if I only get 50ml per breast, that is what they are eating, so being at the hospital allows me to keep up with them. And I'm hoping that the herbs along with the regular pumping sessions that arent interrupted by driving, etc, will help. The saw palmetto is reported to help with letdown. If that happens, then I could start putting them to the breast, which would help with the whole pump-every-2-hours thing. If I were breastfeeding one baby each hour (one per breast) and then pumping the third hour to try and empty whatever remained, that would be awesome. So, that is the goal I am shooting for. Send a prayer to Our Lady of La Leche for me.

(BTW, I just stopped my hour long pump and got 80ml per breast/160ml total. This is from my nightime stretch of 5 hours of sleep. I was so tired; I thought I'd actually be waking to alarm at 5am, which would have been only 4 hours in between pumping, but the arm wasnt set. So my body didnt wake up until 6:25. :( Not good. I'll do some power pumping this morning, since we wont leave until 9:30-9:45 to make the 11am/12pm care times, since we missed 8am/9am. Damn.)

Is it too much to ask that my breasts just work the way they are supposed to? I mean, really? Can I not even manage that? (While I know it is true, I'm not in the mood for hearing that it isnt my fault and that I cant control what the PCOS and Hashimoto's does, etc. I'm really just pissed off at the situation, saddened that exclusive breastfeeding up to a year and continued bf'ing through 2 years is most likely not going to be possible and that I will be really lucky if I can produce enough to breastfeed them through 6 months before introducing some solids. I feel like so much has happened and that I cant even give them this. I've already given them less-than-the-best start in life by not being able to carry them longer and now the idea that I will have to give them less-than-the-best to eat is killing me inside. Please just say a prayer that my diligent pumping at the hospital and the galactogogues will help. Please oh please oh please.)

***

Okay, so I've whined enough this morning. Time to do laundry so that we have clean clothes to wear to the hospital...

***

(Oh and some stats on the little ones... As of yesterday, 10/24, at 6w2d old...

Bobby weighed 4lb 9.2oz and nipple fed 39% of his daily intake

Maya weighed 4lb 2.1oz and nipple fed 30% of her daily intake.

Go babies!!!)

NICU Day 44 (TCN 12)

Babies are perfect, as always. They are taking a lot of their feeds orally today.

Peter and I, not so perfect. We had an argument today... The first in a long time. I know we are both under stress but still... It hurts that we fought. A lot.

I just want to go back to the hospital right now...

NICU Day 43 (TCN 11)

I feel like my posts all begin with "the babies are well" but could we really want them to start any other way (except, maybe, "the babies are going home"... sorry but that isnt today's post...)

The babies are doing well. :) My dad went with me today for his weekly visit and held them for the first time (pics are posted). It was really cute. In the car, when I told him (because, even though I told him the babies had a surprise for him and that he couldnt smoke after taking his shower, he still had no clue), he looked at me wide eyed and said "They are so small! What if I drop them? I'm scared!" It was cute. I never expected to have to tell him that if he was uncomfortable, we could end the holding earlier than the 10 minutes. It was really cute. And, not only did he not smoke, he hasnt smoked since yesterday morning! And he was so proud when he told me that he didnt even have cigarettes on him. He just beamed. I'm really proud of him.

Maya tolerated her holding better than Bobby. Both were on the verge of sleep. I think that she was cuddled and calm, so being given to Dad, she stayed that way. She opened her eyes and looked at him (and smiled a number of times- Dad was convinced he was somehow tickling her). Bobby was cuddled but perhaps not as long (although he seemed calm when I gave him to Dad). He looked at Dad for a bit but after 3 or 4 minutes started getting ancy and then he started to cry and reach for me. Now, as sad as I was a) that Bobby was agitated and b) that Dad's holding was getting short, I have to admit that there is nothing like seeing your child reach for you because YOU and only you can fix what is wrong. He snuggled into my arms and immediately fell asleep. Cant beat that. Dad opted to sit and watch them sleep while I pumped, which I also found endearing.

I admit it. I cried. When he was holding Maya and I went to get a picture, the thought of "my dad is holding my daughter the way he held me" crossed my mind and then it struck me that she is the first grandchild he has ever held. There are 6 born babies, our five plus my nephew. Over two years. And Maya is the first he has held. And that really struck me like a ton of bricks. The second thought was that I could take it back even more years and add 3 more babies, and I gulped back a sob as tears flowed. I was able to keep it together but it still chokes me up right now.

While pictures are posted and up to date (as of right this second), here are two of my recent faves.

This is the picture of a little boy who, instead of nursing, decide that, yes the "ninny" was his, no he didnt want to eat but yes, he was comforted so dont move it!

And this is the face of a little girl who was "milk drunk" after taking in half of her feed via breastfeeding in only 15 minutes.

Are they cute or what?

Happy 11m Birthday, Alexander

Surely, my sweet cuddlebug, the date must be wrong. It cant be October. It cant be 11 months since you were born. That is too long without feeling you in my belly... in my arms... I knew that this day would come, when I would could down to your first birthday in days instead of months. And here were are. A month away.

Your daddy told me with a smile "I'll be having fruit loops for breakfast". I'll have them too... And dont forget tuna fish salad sandwiches and tomato soup for dinner! I'll make it special when I come home from visiting your baby brother and sister. I'll even put the soup in the special mugs your grandma bought to celebrate one of your monthly birthdays when I was in the hospital.

I miss you so much, Alexander. I remember everything about you from your little nose and tiny fingers to the way you felt kicking your way into the world. I'll never forget.

Happy 11 month Birthday, sweet cuddlebug... Sweet Alexander. We love you so much.

NICU Day 42 (TCN 10)

Once again, a great day. While Bobby wasnt interested in nippling this morning, Maya took in half of her feeding by breast and then I fed her again with a bottle and she took in half her feeding. Tonight, for Peter, she took in a full bottle, as did Bobby (well, almost a full one for him). Every day they are maturing more and more.

This afternoon, I held the two of them together and it was so peaceful and beautiful. It hurt, too, and I found myself using my shoulder to wipe away gentle tears that fell. They were so warm and soft and I could feel their breaths. They smelled so sweet... like... baby smell. My baby smell... I could have stayed that way forever. I hated leaving but it was shift change.

I'll post pictures again soon. I'm just wiped out and it is too much trouble to hunt down my cell phone when I forget to bring it upstairs. But soon... When there is time...

*** For those in real life who view my blog and have emailed/called/asked about visiting the babies in the NICU*** The hospital no longer allows any visitors under 16 due to the flu epidemic. If you want to visit, please give us several days notice; with breastfeeding, etc, we need to coordinate. Also, we dont do visits with others in the evenings because that is the special time that Peter has with the babies, and the grandparents have visiting days during 3 of the 5 weekday mornings. Right now, the only possible visiting times (because you would need to be with Peter or I) would be Tuesday or Thursday at approx 1pm. We alternate between having visitors on Saturday or Sunday (same time). Again, with breastfeeding and only being allowed 2 people at the bedside (I'm sure you see where this can be a problem with Peter and I both there since we equal 2 people!), we have to organize any visitors around the babies' schedule. Also, if you are exposed to anyone who is sick, please do not ask to visit for at least 5 days after your last interaction with the sick person (or if you are sick, until you are symptom free for one week). With the flu (and just illness in general), we cannot be too careful. The average visit lasts approximately 5 minutes. (outside of our visits, of course) The babies still get overstimulated very easily (and since they are my babes and are nosy as all get out, they work themselves up quickly.)

C-Section Regret

I've been asked IRL and via email if I have regrets that our labor experience wasnt what we wanted or planned. The short of it is... NO. The long of it... Well, we all know I can talk... :)

I think that preterm labor teaches you one huge thing: nothing is as important as getting the baby (or babies) here safely, be that by following your birth plan or not. With Nicholas and Sophia, I was really hung up on the "plan". We spent quite a few hours going over what we wanted, didnt want, etc, and I put together a nice little form thanks to an online software. Like all the books said, I carried it with me and planned on making several copies to give to L&D, etc. I'd even asked Dr B if he would look over it and sign off on it, which he agreed to do, after explaining that we should be prepared for emergencies where the plan wouldnt safely be able to be adhered to. But I was still loss-dumb so I couldnt even imagine that possibility. I mean, yesssss, I'd probably go into PTL (which I thought would be that beautiful 36 week mark) but otherwise, my pregnancy had been perfect, "textbook" was the word that often was thrown around, so what was to worry about!

And then I delivered Nicholas and birthplan be damned. Now, in retrospect, his labor was perfect, beautiful, natural, and at home. He gave me the birthplan we had thought of prior to knowing we were carrying twins and decided we wouldnt attempt a home birth. When I talk to him, I still thank him for such an experience. With Sophia, the last thing on my mind was a "plan"; I just wanted to carry her to that line-in-the-sand of 24w. That was my only "birth plan".

When we got pregnant with Alexander, I wasnt even thinking of a plan. We kept it simple: natural birth. That was it. No drugs and vaginal. Who cares about music and dim lights when you are just trying desperately to save your baby? I decided I could deal with the people and the hospital nonsense if it meant that we could save Alexander's little life. When I went into the hospital at 16w3d, I mentally dropped the plan in the wastebasket; I'd never even bothered to write one down let alone print one out. From that day on, the plan was simply "get another day".

We decided from the start with Bobby and Maya's pregnancy that we still wanted a natural birth, but we made no mention of a plan. The only plan was to try and stay pregnant, no matter the cost. Cerclage- no problem. Bedrest- no problem. Hospital Bedrest- no problem. Constant Monitoring- no problem. After losing our children, what was inconvenience? As the pregnancy wore on in the hospital, the nurses and I joked that the Universe "owed" us a natural birth after the hand we'd been dealt. When Maya turned from transverse to vertex, we cheered and told her to stay that way for the 36 week vaginal birth that was touted as our big goal. (Not a plan, mind you, a goal... See how the verbiage changes...)

When the doctors explained that a c-section would be THE way to go prior to 28w and their suggestion prior to 32w for the safety of the babies, again, we said 'no problem' because, in light of risks, there is no greater one than the health of the babies. At the time, the reasons why they wanted the c-section washed over me. I didnt want a cesarean. I didnt want a drugged out birth. I wanted to be able to hold my infants on my chest after a lovely quasi-full term delivery and nurse them. But more than that, I needed to know that everything possible had been done to keep Bobby and Maya safe, and that became the plan. Birth them safely, no matter what.

When I went into labor at 27w5d and our nurse gently explained that it couldnt be stopped and that we were delivering that Thursday evening, I knew that there wasnt going to be a vaginal birth. Knowing how much we wanted that, I appreciate that Dr M agreed to try if I dilated to 10 right away, judging that the babies would be small enough that *possibly* they wouldnt get hurt in labor if I was completely open. But I also knew that she, like we, werent willing to take any chances (she told me later that she knew Dr B would "kill her" if she let anything happen to the babies or us). She had told me when she came in that she believed 100% that a c-section would be the safest option to get the babies here quickly and as healthy as possible. And I trusted her. I knew that Dr B would say the same thing. And, at some point, you know that these people who have been with you every step of the way, who have mourned your losses and celebrated your triumphs and milestones, want nothing more than to give your babies the best chance possible. I knew that the second I heard that Dr M was in the parking garage, when the on-call doctor told me that he wouldnt do the section because she had driven back to the hospital. Any doctor who will cancel an event with their own child to come back for mine has more than just a paycheck in mind.

As the nurse who had admitted us and had been with the babies from the start of their hospital journey followed me from antepartum and held me during the spinal/epi told me that she wouldnt leave, I knew that we had yet another person who cared just as much for these babies as they could. That they werent just "another section delivery" but that they were Bobby and Maya. Whenever a question came up, she rattled off my medical history, what the babies had done that day and weeks before, what drugs I'd taken and when. I didnt feel like a clipboard or a patient; I felt like a friend who had a friend who cared so deeply for them that they knew the ins and outs of their life. Because she did. For those 50 days, she had taken in everything about me and the twins.

The plan was simple: birth safely. And while abdominal surgery wasnt what I'd hoped for, and while I loved my Bradley classes & books, and while I will always, always, ALWAYS advocate for natural pregnancies and births, the primary plan has to be safety for the baby/babies. It just has to be. Everything else is just a preference.

When I've been asked if I regret the cesarean, I can honestly say no. How could I? My babies are doing wonderfully. Was the c-section partially responsible? We will never know. Would a vaginal birth have given us the same outcome? Maybe. If they were doing poorly, would I blame the c-section? I'd like to think not, but I dont know. But I know that I cant waste the precious energy I have lamenting a birth experience that gave me two beautiful, safe, healthy babies. Not when I know so painfully what the other side could have been.

I feel fortunate that I was able to experience 5 very unique deliveries for 5 special babies. Nicholas gave us our natural home birth; Sophia gave us hard labor; Alexander gave us peaceful breech labor; Bobby was born with his bag intact via cesarean; Maya was born into this world when her breech legs kicked out of her water bag right as the cesarean started (and before her brother was removed). These are memories that I have of each of the children and I am glad they are all different so that it is something they have just for themselves.

If we are ever graced with another pregnancy, I hope to attempt a VBAC, but it will just be my preference and what we prepare for mentally and physically. But our primary goal will still be a healthy pregnancy and safe delivery, no matter the method. I think that thought is what saved me from the regret of not having the birth that I wanted and allowed me to see that the only thing I really wanted was safety for Bobby and Maya, a safety I couldnt give their siblings. The cerclage brought us a lot of safety and we choose to see the cesarean as an extension of that.

NICU Day 41 (TCN 9)

Babies are porking up! Yay for chubs!!! Maya has developed a little double chin that is absolutely adorable. Just priceless! She is now up to 3lb 14.4oz (who ever would have thought you could be chubby at that weight, LOL, but she is just perfect). Bobby looks thinner although his face is filling out and he's got a little bum; he's 4lb 4.8oz. He nursed tonight without the breast shield and took in 10 before he was weighed, then we gavaged the rest of his feeding while he was on the breast suckling; he also took a full bottle today. Maya took in 4, although she worked so hard and I really feel like, based on my let down, that she had to get more, but so says the scale. I'm just not thinking about it anymore. They can nurse to their hearts' contents and scale be damned.

I talked to the nurse tonight, who is a ICBLC, about should we continue to breastfeed them or just bottle them until they go home. Here is the quandry: they are judged on how much they take in orally. If they take in a full bottle, that increases their percentage for the day; conversely, if they take in only 1 or 2 cc's, that lowers their percentage for the day. With nursing, while some days have been superstars with 22cc's from the breast, other days (with what seems like just as much effort) results in the scale reading 0cc's transferred. This lowers their overall total percentage, of course, and I cant help but wonder "would they have done better with the bottle?" So, I was wondering if we should just bottle them and then work on breast once we get home.

D said no. In addition to saying that most babies dont nipple anything until 34+ weeks, she said that they are really doing great at both breast and bottle and to try not to worry or stress the percentages. She watched me nurse tonight and said that both babies have the right idea and are latching well. Sometimes, even though they suck well, she said that it is possible they arent getting as much suction as they need, but that they will. I noticed an improvement with Bobby tonight sans breast shield. Even though he could only take in my nipple and a tiny bit of areola, he was still able to transfer over a quarter of his feeding. She said this was outstanding and that the practice of actually nursing was the best part. He also continued to nurse once his remainder was tubed. (I tried Maya with no shield, but she couldnt get my entire nipple in her mouth, so I went to the shield and she immediately started sucking and sucking well.) D also recommended not pumping prior to coming to the hospital, so that I could have a more forceful let down. Overall, her opinion was that they are far beyond where they should be and that, while she can understand my fear that they are being held back because they nipple less at the breast than with the bottle, that I shouldnt be frustrated and should just enjoy their breast time and understand that they will get better. So that is what I am attempting to do. I am concerned with the scale numbers and I just have to let that go. It isnt about the number, it's about them having breast time and bonding and feeling safe and loved.

(10/22/09 @ 7am update: Maya took in 22% of her feeds by mouth (breast and bottle) and Bobby took in 52%, for 10/21. Great News for both!!!)

We interviewed our first of two pediatric practices. They seemed okay and we both would feel comfortable using them. They have experience with preemies and twins, will see the babies together, will get them in within 12-24 hours if they are sick, and have an hour each day, every day, when you can call and ask questions with the docs (you can always leave messages and they can return calls any time). The doctors rotate on call and there is always a practice doctor on in the off hours. We liked the personality of the doctor we spoke to. Our second interview is next Tuesday and we will make a choice after that.

As soon as the pumping goes off, I am going to bed. I am so wiped out...

NICU Day 40 (TCN 8)

Another short one... I'm just so tired. The last few days havent been big sleep days.

Peter took the day off work and we went to the hospital for the 8am/9am care times, where I nursed and then Peter cuddled Bobby and Maya. Tonight, I bottled Maya and Peter bottled Bobby. They are still doing great! Maya is 3lb 13oz and Bobby is 4lb 3oz. They are both taking their bottles. Maya is averaging interest in about every other feed; Bobby seems to take some at every feed. We opted not to give them the Hep B vaccine so I signed that form this morning and the NP discussed their carseat test with us (once they are feeding without a tube at all). We are hoping they might be NG free within a week! Once that happens, I will be at the hospital all day so that I can nurse during their feeds. At least that is the plan! I want to try Bobby without the nipple guard tomorrow; Maya still does well with it, but I think he is getting to the point where he may be able to breastfeed without it.

Why did Peter take the day off you ask? We drove to Jersey City and upgraded by Volvo V70 to a Volvo XC90. Inga (my V70) is in need of some serious repairs to her engine and A/C (yes, I name my cars) so we decided to investigate newer Volvos, since Peter wanted to get one that had the new carseat harnesses. So... We looked around and I called about a few. This one won and we drove 2 hours to look at it. We got there around 1pm and once the test drive, paperwork, etc, was done, we left at 5pm. So much for a quick afternoon! We drove straight back to the hospital and I went to the pumping room. (I hadnt pumped since 10:30am! I thought I was going to explode!) We had initially thought we'd be able to get home by 3:30pm or so (yep... I guess we werent really thinking...) and that I'd be able to pump and only miss 1 session with my moochine, but no... I went about 9 hours! And I was hurting. I pumped then went back after being with the babies and pumped again and I'm finishing up another session now. Oh, how I missed the machine! (I never thought I'd say that!)

So,this is Sven, my new XC90. Currently, he is at our mechanic for an inspection, but by this weekend, he'll have carseats loaded in him and the stroller squared away in the back.

It's a 7 passenger and I have to admit, both Peter and I have thought that it was meant for our five children... It's heartbreaking to think that there will only be 2 carseats... I wonder if, whenever I look in the rear view mirror, if I will see what could have been instead of what is...

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Please think of Barbara and Ray today as they celebrate and remember George on his first birthday. Happy Birthday, George... Watch over Mommy and Daddy and let them feel your love.

NICU Day 39 (TCN 7)

A quick one! I've got some house stuff to catch up on!

Both babies nursed soooo well this morning! They both took 22cc's of their feeds by breast, Maya in 20 minutes and Bobby over 30 (honestly, I think he got more than that and the scale was wrong; he seemed like he was going to town a lot more than she was, but what do I know!). Her feeds are at 34 and his are at 36, so this was over half! Yay! They are getting better and better with the sucking and swallowing. Soon, I think I may just stay at the hospital so that I can be there for most of their feedings. Perhaps next week... Today is the last 1 breast feed day and tomorrow, we will try breast feeding twice a day. So, it's definitely progress and we dont want to rush it, not when they are doing so well!

I ended up not going to the car dealer today (they sold the SUV) but I have an appt for tomorrow at another dealer. I was able to spend a long, wonderful morning at the hospital (I may have to adjust my days so I can go every day like this, although that would cut into the little bit of sleep I do have... Maybe not... A mommy who falls asleep in the rocking chair wouldnt be good!) In my spare time, since rounds were this morning, I called and scheduled 2 pediatrician consults, both local. One doctor goes to church with us and the other was recommended by the hospital, so we will see who we like more. I'll be sure to post our questions and why we choose whomever we choose. We see one on Wednesday and the other next Tuesday.

Well, off to house stuff!

Weekend Update (NICU Days 37-38 (TCN 5-6))

Updating from the weekend... (It's been a busy weekend; we werent even home yesterday at all.)

Friday night, we gave the babies their baths completely unassisted. Peter bathed Maya, who did really well and, although she gave a few false starts, didnt cry a bit. I bathed Bobby. We started off with a cry (we think because the water may have been too warm, so Peter added some cold to it and things were much better) and he let out a cry during the leed removal, but he, too, was a trooper. I dried them both off, which was wonderful. Clean babies!

Bobby and Maya started bottle feeding on Saturday! They had an AWESOME dayshift nurse on Saturday and Sunday who challenged them just enough. It was tiring for them (after all, that all sucking-swallowing-breathing thing is still a challenge!) but they both did a great job! Bobby took in 17% of his feedings for the day and Maya took in 11% of her feedings- not shabby considering they dont start most babies for another week! Bobby topped 4 pounds and Maya is over 3 and a half pounds and catching up. Both are more than happy to fill their diapers (no complaints- it means everything is working).

Sunday, Peter's parents came for a visit in the late afternoon and his dad held the babies for the first time. We fed Maya before they came and she was held second, since I was finishing her bottle. Bobby did a nice job tolerating his hold. He was still fairly asleep but woke up periodically. We traded off when it was Bobby's turn to have to his bottle. He didnt take so well. We all agree he was just too stimulated to eat well, which was a minor setback. In the future, we wont do visits prior to both of them eating. It's just too much. After the visit and while we were having dinner (we had to leave because of shift change), he had a bradycardia spell and she had an apnea spell. :( It was a busy time for them. We came back for the 8pm/9pm visit and they were both out cold. We opted not to breast or bottle feed and the nurse gave them their meal though gavage. We actually left at 8 and I pumped, just because we didnt want to disturb them. We came back at 8:30 and did their care time together, which was nice. They were still tired but once we were finished with the temps and diapers they were more awake. We held them for a little while, until they went back to sleep and were finished with their milk (delivered over half an hour through the pump), and then put them to bed. Bobby had a second outfit change, since he peed all over his outfit while Daddy was changing him. This is funny because he was out of short sleeved onesies due to peeing through his diaper a couple of times, so we dressed him in one of Maya's pink ones! His sleeper is still 100% guy but he's sporting hot pink underneath. I have a bag of laundry to take back and 2 bags of dirty at home. These kids go through it! And they arent even home yet!

Yesterday, Maya's weight was 3lb 11.9 oz and she took in 20% of her feed total by bottle! To quote the email I received this morning, she is doing so well that she will be "busting out of here soon!" From your mouth to God's ear! Bobby's weight was 4lb 2oz and he also took in 20% of his feed total by bottle. Woo Hoo Babies! Keep up the good work!

(more pics)

Today, I am doing the early visit (8am/9am) instead of my normal (11am/12pm) so that I can, possibly, investigate upgrading the Volvo... We shall see. I will probably need a hardcore nap in the middle of the day. I also have 2 pediatricians to call and make consults with. Both are within walking distance of the house... Nice. :)

Share the Love

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NICU Day 36 (TCN 4)

The babies continue to thrive and we are just so thankful for your continued prayers, love, and support.

Yesterday, Peter's mom held the babies for the first time. Maya tolerated the holding much better than Bobby, who nursed better than Maya. She had her physical therapy just prior to our visit, so we think she may have been too overstimulated to nurse and somewhat desensitized to touch, which is why she handled being held and rocked better. Bobby had his PT at 9am, so by the time noon rolled around, he was quite hungry (he took 8cc's at the breast) but when I gave him to Peter's mom, he began displaying signs of overstimulation. She held him only a few moments before I took him back and calmed him, which happened immediately. It was strange, being THE person that could calm him. Strange but oh so nice. (for pics click here)

Today, both nursed and did well (especially considering the "standard" for putting babies to breast is 34 weeks since that is when the suck-swallow-breathe reflex is said to develop and our babies started doing nutrative nursing at 32w3d!). Maya took in 4cc's over 10 minutes (until she lost interest and fell asleep) and Bobby took in 15cc's over 20 minutes. We are so proud of them! They will most likely start the bottle for some feedings on Monday and then come Tuesday, I can try nursing twice a day instead of just once a day.

Today must have been circumcision day in the NICU. We made the decision long ago to not circumcise our sons. A little boy today was screaming and crying and I overheard the nurses say that he'd just had his "circ" done and had gone to the bathroom and was in pain. It broke my heart. I was holding Maya at the time and she would look around whenever he would let loose. I just held her close to me, grateful that both she and Bobby werent having a knife come anywhere near their genitals (or elsewhere!). Well, that baby wasnt the only one. The nurses were sedating a baby who was going for his and I heard them discussing the risks with his parents and told them he'd be very upset when he returned. When he did come back, he was crying and obviously in distress. At this point, I was holding Bobby and I just brought him as close to my heart as possible, hoping that he wouldnt hear the distressed cry and wake from his peaceful slumber. The parents tried comforting their son but he was so upset. The nurse offered to give him something to help him sleep and I think they took her up on the offer because within a few minutes, their corner was quiet.

I wont debate the "to do" or "not to do" of the whole thing, but suffice it to say that it was distressing for someone with the feelings we have on elective circumcision to sit in the room. When the nurse asked if we were having Bobby done, my "hell no" might have been a little stronger than I normally would have said because of the atmosphere. Thankfully, our nurse wasnt pro elective's so that was a breath of fresh air.

All in all, the babies are still doing really well. Gestationally, they hit 33 weeks tomorrow. Wow... Cant believe so much time has gone by! We are getting the house ready for their impending arrival, along with (gulp) discussing upgrading from my Volvo stationwagon to the (double gulp) 7 seat SUV. We're going to see one on Sunday (most likely)... We shall see... We're taking the car seats and stroller so that I can see how I would navigate the SUV versus the wagon.

I'll end on a high note. In moo-cow news, I have now upgraded to the big bottles for my nighttime pump! Yay 200ml's!

Sweet Sophia...

It has been so long since I held you in my arms, Sophia... So long... You were born so many long months ago. As we near the end of your 2nd year, it strikes me that I will never be able to kiss your forehead or hold your hand or watch you grow up. It pains my heart to a degree that I will never be able to express. When someone looks at your little sister and thinks of her as the first daughter, it will bring tears to my eyes and crush my heart. When she grips my finger and smiles at me, I will always see a piece of your spark in her gaze and your precious hand held within hers.

Sweet Big Sister... Sweet Daughter... We love you so much. Today and every day.

Happy 20 month birthday, my Sophia.

Remembering...

Growing up, I always knew that my grandmother had lost children. It wasnt a secret but at the same time, it wasnt really talked about either. Every now and again, someone would mention something.

I've always been close to my maternal grandmother. Part of it was that I never felt "different" as an adopted child; she loved me just the same. We were close enough that we could joke about her having X and a half grandkids (with me the half). It was our private joke. And I think it is probably one of the things that shows, to me, how we felt (and still feel) about each other.

After Nicholas was born, Mamaw called me at least every other day to see how we were. She'd share something from the Bible that she'd read (she's read through it, completely, near 20 times and reads it every single day) or would give us citations to look up to help with our grief and our stress and fear for Sophia. But, it wasnt until then, until I'd lost a son too, that she shared with me the details of when she lost her son.

My mom has 2 younger sisters. She has 5 other siblings, though. Two babies were miscarried early, but her brother was born around 6 months gestation, on October 16th. In the mid-late 1960s. I dont know the year, only that he was inbetween my mom and my (oldest) aunt. They lived "in the country" near my grandfather's family. I wont share all the details but when my uncle was delivered early, he was never given to my grandmother but was whisked away and buried. She was told that he was dead, that it was better she never see him or hold him, and, in her grief, that she should try to get pregnant again and forget. But you never forget. Not a day goes by that you forget.

I remember being on the phone with her, as she shared with me how she felt back then as though it were that day. Those memories were clear and vivid. How she begged to see and hold her son. How she questioned "Are you sure?" over and over again. I remember questioning well after we knew our children had passed and had medical staff confirm it; I cant imagine being at home and never seeing the babies and having to take someone else's word for it. She was always told that yes, they were sure... But you still wonder.

There is no grave that marks where my uncle was laid to rest. No flowers bloom in his absence. There is no stone that lists his name or that he was so loved and is very missed. He is buried on the land that my great grandfather owned. And sometimes, when the wind hits the trees just right, you may be able to hear him whisper a cry that tells us he is okay and will see us again one day.

So today, as you remember your babies and mine, please remember hers. All three of them. But especially Christopher Michael on his birthday. She wont know you are remembering them in her conscience state, but her heart will know and, as she goes through today with a silent grief, that will be her comfort.

October 15th

Around the world, today is Infant and Pregnancy Loss Awareness Day. I guarantee you that, if you havent been personally touched by a loss, you know someone who has. Maybe they've never felt like they can talk to anyone about their baby... Let them know, perhaps with a card or a sweet word, that you are remembering their child today... That you are remembering them.

For the named and the nameless... The remembered and the forgotten... The loved and the forever missed... Tonight, at 7pm your local time, light a candle and let it burn for all those whose flame no longer burns in this world, but rather lights up the evening sky forever.

For Nicholas, Sophia, and Alexander...

For P, D, and Z...

And, for your babies...

NICU Day 34 (TCN 2)

I'm sure you remember stories of "canula nurse". In our month plus in the NICU, I have always seen her in the main section, never in TCN. So, who is the nurse when I walk in this morning? You guessed it! Really? Is this some sort of NICU joke? I have to say, she was more laid back today but part of it is just the not-so-awesome interactions of the past that had me feeling less than thrilled. (But she is a 12 hour which means that a 12 hour picks them up for bath night tonight!) I dont think she weighed Maya correctly pre and post breastfeeding. She had a blanket on the scale for the pre weight but not for the post, so it showed that Maya didnt gain anything. Since the nipple shield had milk in it and she had milk on her chin and in her mouth, I find that hard to believe. Maybe only 1% of her feeding or so, but still... Bobby once again took in 6cc's before falling asleep at the breast. (Approx 2% of his feeding). He is now 1 and a half inches longer than he was at birth and she is 2 inches longer than at birth! Their repeat head ultrasounds showed perfectly normal brains! Yay! Cant ask for better than that!

I put together their cradle/bassinet this afternoon. We bought it to have something downstairs for them to lay in. It is a glider; we looked and looked for a rocking one and just couldnt find one... It also has wheels, so we can take it from room to room. Now... To figure out where it will go... I thought it would take me about an hour to assemble. It took 2 and a half. Now, given... I am not savvy in the art of putting furniture together by I swear, part of the instructions are backwards! I followed them and managed to put the glider section backwards. So, half an hour was spent unhooking and rehooking. Always fun... But now it is done! Yay! In other fun news, I'm ordering "my first Halloween" onesies for the twins. I know they arent trick-or-treating but they can at least celebrate their first Halloween in style (if not in costume)!

Once I'm finished pumping, we'll grab a quick dinner and then get on our way to the hospital for bath night! Peter is giving Maya her bath and I have Bobby. Cant wait!

NICU Day 33 (TCN 1)

(TCN: Transitional Care Nursery)

Another short post because I am so tired and it is late...

Babies are great in their new home. TCN is so much quieter than the main section of the NICU. And the twins are in such a nice little spot, at the very end. TCN holds a max of 9 babies, so it is a small space, relatively speaking. But with the nursing screen up and the lights low, it feels almost like we are walking out the door!

This morning, we did our first nutritive nursing! It is possible that the babies were taking in breastmilk when we were nursing before, but they werent being weighed before and after to make sure, and it is relatively unlikely that they got a lot, since my nipple is the size of their mouth, so they couldnt really pull in enough nipple and areola to really suck for nutrition. The nurse and I were chatting while the physical therapist was working with Maya. After PT, the therapist said that, in addition to being perfect, Maya was really sucking on her pacifier, so the nurse suggested weighing her pre/post the breast so that we could see how she was doing. The nurse was really sweet and helpful. She noticed that Maya was basically playing with the nipple, even when suckling, because of its size and the size of her mouth, so she offered a nipple shield (a piece of silicone that molds over the nipple and gives the nipple a little thinner of a length so that preemies can get enough of the nipple in their mouth to breastfeed well. She also helped me get Maya in the football hold, which, the first time can make you feel like the baby is going to end up sliding behind you! I nursed for 15 minutes, then she was weighed. She took in 2cc's! (Her feeding right now is 30, so that meant that she was given 28cc's by tube.)

After holding Maya for a bit, I started Bobby's care and then we repeated the nursing scenario with him. He was more than happy to stay asleep so the nurse gave him a little underarm massage to wake him up. It looked like he was having a slower start, but when he was weighed, he showed us that wasnt the case. He took in 6cc's! (His feeding is 34, so that mean he was given 28cc's by tube also.)

At this point, because of the calories that are burned as they are learning to feed, she suggested nursing them once a day for a few days and seeing how their weight gain is. If it continues to be good, then up it to twice a day for a few days (morning/night), then if that is good, add a third. By that point, gulp, she thinks they could be ready to go home!!!

This morning also brought one less cord and monitor! No more pulse ox! (This was the monitor that kept up with their blood oxygenation.) The nurse said that they are both stable enough that they no longer need that monitoring! So, after an exciting morning, we came back in the evening and changed out Maya's bed! She is now in a crib!

They say that moving to TCN makes things go a lot faster and that, once they are "nippling" (taking their food by breast and/or bottle instead of tube), it moves VERY fast. The day nurse said that she expects them to go home soon. They are gaining weight, maintaining a good temperature, breathing well, weaning off their monitors, and are nippling well before the age they are normally even started (they start around 33 1/2 weeks... putting today as the first day that gives them a week's advantage).

We are so proud of them. They continue to amaze us every single day!

NICU Day 32

I've been at the hospital all day and am exhausted, so this is a short one.

The babies had their first eye exam today, hence me staying at the hospital. I wanted to be there (and Peter planned on leaving work early to try and get there). The nurses told us how horrible it was to watch, but we wanted to be the ones that comforted our babies afterwards, not to mention we wanted to know what they were going through.

The best part of being there all day was being able to hold them multiple times. That was just wonderful and totally unexpected. I went for the 11am/12pm care time like normal. At 1pm, I pumped and grabbed a quick bite to eat before being back for the 2pm care time for Maya, during which time I got to hold her again! 2:45 was shift change, so I went to the parent lounge, where I chatted with another mom, then back at 3:30 and held Bobby. At 4pm, the eye doctor called and told the nurse to dilate their eyes in preparation for the exam, so I put him back and she gave them the two rounds of eye drops. They didnt even cry. Such strong little ones...

Peter arrived prior to the doctor getting there, which was nice. The doctor came and did Bobby first, then Maya. It was a short procedure. They take these clamps and clamp the baby's eyes open (one at a time) and then shine a bright light in the eye to see the development of the retina and blood vessels. You are ranked 1-5 for how the blood vessels look, with one being normal and five being detached, then you are ranked 1-3 for development with 1 being underdeveloped and 3 being completely developed. At 3 months old, the perfect score is 1/3. At 1 month old, our babies scored 1/2, which is really good. Both are exactly where the doctor said they should be in their development. They will get checked every 2 weeks until they are 3 months old, score the 1/3, or show signs that they need intervention.

When the clamp went on, Bobby cried. Oh, it broke my heart. As soon as the procedure was done (about 30 seconds per eye), we were at his side. I put my hand on the top of his head and the other on his chest, where he grabbed my finger. And, amazingly, he stopped crying. And went back to sleep! In seconds! (Mind you, we'd been warned that babies usually cry and cry and have to be given sugar water to practically sedate them after this procedure.) I anticipated one of us going to Maya because one would stay with Maya, but we were both able to watch her procedure. She cried as well and, when it was over, the nurse picked her up, then gave her to me. She just held on and I gently swayed back and forth and told her it was okay and, again, no more tears. We were both really shocked at how well they did, compared to what we'd been told. Little champs. I know they were uncomfortable. After the exam, we did her diaper and temp, I pumped again, then we did his diaper and temp, and went to dinner. We came back for bath time and holdings, and their little eyes were still slightly puffy.

We got to give our first baths! I will post video of it, but our phones are downstairs right now. I bathed Maya and Peter bathed Bobby. Since I held them both quite a bit, Peter got to hold them both last night. Our first baths were successes! They didnt even cry, which was wonderful because, had they cried, I would have been right there with them! Maya was so upset at her bath on Friday that I was convinced she was going to be miserable, but nope! She did great! And Bobby also!

And, in even bigger news, guess what two gorgeous babies moved into the Transitional Care Nursery!!! That would be Bobby and Maya! They now have the "best" corner in the nursery (thanks to all the nurses who love them so much). It's the most private are of TCN and, with a screen put up during nursing, will be like their own little private room. As we were leaving, their nurse was "decorating" their space with their items. So, when I go in next, I wont take the long walk to Critical Care (which is how the majority of the NICU is referred to) but will go to the area just inside the NICU doors. A step closer to Bobby and Maya going home!

What To Say...

Molly left a comment on my previous post asking what I would like to hear people say about our children who have passed, as she has a friend dealing with this grief. I also invite others to comment on this post with words they wish they'd heard or would like to hear.

First, let me say that I am sure I made comments that were inadvertently hurtful to people who miscarried little ones or had their babies die. I think that, unless you have either been through that loss or gone through it with someone (because I have several friends that come to mind who havent dealt with the loss of their own child but went through the loss of ours as though they were their own), it is damn near impossible to know what to say. And, honestly, no matter what you say, you cant say the one thing that those parents need to hear. "This was all a mistake. Your baby is fine. Here you go!"

With my miscarriages, I would have liked to have heard acknowledgement of those babies. I would have liked people to have realized that, regardless of whether or not they were the size of speck of sand, that they were our children. That they were perfect. That we loved them even before we knew they were conceived and that, once we felt their perfect little presences, it just made our hearts love them more. I wish that people would have realized, even though they were so tiny, we were grieving the lives that they had (even in those short weeks) and the lives we saw for them. That we were grieving their futures, and ours. Comments that I hated more than anything else included "There must have been something wrong with "it"", "This was all for the better", "Better you miscarry than have a sick child", "Miscarriages happen- it is better to just move on", "You'll feel better once you are pregnant again". That baby wasnt an IT. It was my son or my daughter. I wouldnt have loved them less had they been born looking like the creature from "Alien". I didnt think it was better than my baby died and I sure as hell didnt feel better about losing my children once I was pregnant again. Words that I would have liked to have heard, "I dont understand what it is like to lose a baby, but I am grieving with you", "I know it hurts and that I cant make it better with whatever I say, but we are thinking of your baby", "No other baby can replace this one and it is okay to miss them and grieve for them", and, as saccharine as it sounds, "I'm sorry."

With Nicholas, Sophia, and Alexander, I think that because people had become invested with our pregnancies, people grieved with us, which helped. After they died, they made mention of their lives with their actions. They came to the memorial services. They looked at their photos, even though (I admit) it was probably really hard for them at times. They said their names. That was probably one of the most important things. Simply remembering them... Friends called on their monthly birthdays or to say that they heard/saw something that reminded them of a particular baby and they wanted to check in. They reminded us of our parenthood. They cried with us. They cried on their own and called us to help them through their own grief. One friend came over and sat on the couch with me after the twins died and, as we sat in silence, she reached out and said, simply, "This sucks". And that summed it up. She doesnt have kids and has no desire to have them, but she understood that there was nothing she could say, no glib words to make it better. That she could acknowledge that this was the worst and just be there. Another friend has constantly called or emailed on their special days, not with a "how are you doing" type thing, but to just remember... She doesnt even have to mention why she does this, but she does it and, even when the kids arent mentioned, I know she remembers. She's called me in tears because something triggered thoughts of the kids and her grief overwhelmed her. I could go on and on of stories of a multitude of friends, some parents and some not, who have not been afraid to embrace the short lives of our children and share them with us.

Things that I hated hearing "This was God's will", "I guess it just wasnt meant to be", "Maybe they would have had problems and this was nature's way of "taking care" of the problem", "Your next pregnancy will be better", "It's all for the best", "One day you will really be parents", "Just move on". I dont think that God wills for babies to die. I think that, yes, they have a life beyond this one and that we all have a destiny, but to give the simple "God's will" comment makes God out to be a real jerk who just takes people's children at random. And I dont believe that. I also dont believe it was simply bad luck. I try to believe that life, no matter how long, is a drop in the bucket compared to eternity and that, whether we live a hundred years or only a hundred miliseconds in the womb, our lives are equally short and equally long. It just so happens that my children are living elsewhere while I am living here. As to not being meant to be, I've always wanted to respond, "Maybe your common sense wasnt meant to be" because, really, who ever thinks that is a good response. I dont think my babies were problems, no matter what issues they could have had. Another pregnancy wont replace my children. Who is it best for that they died? Surely not me, their father, or them... And, what am I now, if not their parent? Just because you dont see them doesnt mean they arent children.

And, my personal favorite, "Just move on..." I could write an entire post about that one. What exactly should I be moving on to? You dont move on. You dont get over it. You reinvent yourself as the parent of a dead child. You pick up the pieces of your shattered existence and you try to glue them back together in some semblance of a picture that society can deal with. You look at your family portraits and forever see someone (or several someones) missing. You breathe only because it is the only way that a piece of your child still lives. And you take one step at a time. But never, ever do you move on and forget. Never are you the same person again. And for someone to expect that of you- it's ignorant.

Things I appreciated hearing: "Congratulations", "They are beautiful", "I miss them too" (because, even if you never saw them in life, the fact that you recognize the life they have and didnt have and that you cant be a part of it, is huge). Their names. For people to not dance around the fact that they were a part of our world and always will be. For people to count them.

The hardest thing, right now, is when people say things along the lines of "Finally, you are parents" or "You are a family of four". We've been parents for a long time. Perhaps not to living children, but parents nonetheless. And our family isnt a family of four. There will always be faces missing in the pictures... Faces we see. Faces we hope others see too... Even if they are only in the shadows of our own or in the faces of Bobby and Maya.

One of the most wonderful things I ever heard was from my mom. When I called her to tell her that we were pregnant with Alexander, it was on the cusp of a miscarriage and 6 months after Nicholas and Sophia died. She was excited and made her little happy noise. I actually said "I'm surprised you are so happy". We had been greeted with cautious optimism by Peter's parents (who were happy dont get me wrong but very nervous) and outright upsetness by my dad who couldnt handle the news. My mom's response was "I will be happy every single time you are pregnant. No matter how long the baby is with us. A new grandbaby is wonderful news." I played that comment throughout Alexander's pregnancy and the pregnancies that followed. Sometimes, with Bobby and Maya, it was that comment that helped me breathe when the fear gripped me so tightly.

We have been blessed by people who make our babies a part of their lives. We have friends whose children talk openly about ours. Who draw us family portraits with them included, name characters in their stories after our babies, who talk about them to us and what they think they are doing in heaven. The little girl of a couple we know went up to the pictures one day when they visited and pointed and said "babies", and her mom said, "That's right. Those are babies." This is what I ask of you, those who grieve your own children and those who grieve the children of others. Say their names. Remember their birthdays. Dont wait for their mourning parents to bring them up. Given, some parents may not be ready to talk about their babies with you because their grief is too overwhelming. But knowing that you are there, that you arent afraid of their memories, that will help them when the day comes that they ARE ready. And one day, they will be, and maybe, you will be the person they come to because you have been a part of their healing.

The greatest gift that has come out of my grief is being able to grieve with others. Hearing "I never was able to talk about my baby" or "I was told to just have another and I still remember my first/second/X baby and it hurts", and knowing that those people now have been able to talk and remember... Having people who attended the memorial services that we didnt know come up to us and say "I lost a son/daughter and was never able to have a service; this service was for them to me." There are so many people who have been left orphans by their losses and that we, as a worldly society, have orphaned in their grief because it isnt pretty... Because it doesnt fit into our belief that babies just dont die. But they do die. Every single day. And a parent misses them and grieves them and, most of all, loves them. And without support from those around them, they do so silently and alone and, perhaps one day, they feel they have to put those feelings aside to coexist as a "normal" person.

I'm not sure if this answers exactly what was asked of me, but I hope that it is a start. And I hope that others are able to add to this and continue teaching all of us how to better cope with all of this.

The Weight of Grief

Last night, although she is fine now, my daughter stopped breathing. I realize that, for many of the parents of preemies, an apnea spell isnt considered a big deal. But it's a big deal for me. You see, I've never seen that respiratory rate hit "0" and the word "APNEA" flash across the screen, while the oxygenation drops and flashes and the heartrate begins a descent towards that horrible zero.

During Maya's care time, Bobby would set his oxygenation alarm off but would bring himself back. We joke that it is sibling rivalry. He's saying "Folks, the show is over here" while we are busy focused on his twin sister. We did her bath (she cried, I got to dry her off and she just clung to me as if I were all there was in the world) and then Peter held her. She just collapsed on him. Her respiratory rate was high, well over 100 breaths per minute for the entire half hour (it would go back and forth between normal and high). She was so wiped out from her bath, which she looked completely miserable in. She went back into her isolette and we began Bobby's care, complete with a bath (he wined but didnt really cry, Peter dried him off) and then his holding. As Bobby was being weighed, pre-bath, Maya's monitor went off and, when I looked up, I saw that glaring zero, blazing in a red background. APNEA is flashing across the monitor. The nurse seemed unfazed. "It's okay," she said. "She'll bring herself back."

But for those seconds (which, in retrospect, I am sure was all it was even though it felt like a lifetime to me), my daughter wasnt breathing. My beautiful, precious girl... I looked in on her and she looked so peaceful, so... alive. Yet, the monitor continued to tell us she wasnt taking in air. That she wasnt breathing.

The nurse was right. She did bring herself back without stimulation or intervention and she was fine the rest of the night. But I wasnt. I silently cried the entire time Peter held Bobby. And once we hit outside, to where we call "Sophia's garden", I broke like the Hoover Dam. Peter just held me while I sobbed. The weight of all the grief finally spilled over and I couldnt control it.

I am so tired of being told how grateful I should be that Bobby and Maya are alive. That we should count our blessings that they "at least" made it through their 27th week. Do these people not think that I know that? That every single damn day is a miracle and a blessing? That I thank God every second for the fact that they seem to be healthy and doing so well? Can they not fathom why I am grieving a pregnancy that ended too soon- not because I wanted to grow bigger or feel more pregnant but because babies NEED 38-40 weeks to fully develop?

Even though they died, I am grateful for every second with Nicholas, Sophia, and Alexander. While some people acknowledge them and say things like or "God had a plan for them and they just needed to make sure their brother and sister got here" or "they paved the way for Bobby and Maya to be born safely" and think they are being kind, (and, again, I know our little saints were watching over their brother and sister), can they not understand that the price was high? That our children are dead; they arent coming back. I cant go and tell them "thank you" and give them a hug or kiss. I hold a marble box to my breast instead of their mouths. I clutch a blanket instead of their hands. I listen to rain falling against their nursery window instead of their cries. I will never be able to see them face to face until I leave this world. They paved the way? Is that some sort of consolation prize?

Mothers, regardless of whether or not they have lost a child or had a baby born preterm, have an instinct, an innate need to protect their children. We kiss the booboos. We stroke their hair to mend their broken hearts. We laugh with them. We cry with them. One of the earliest ways we do that is by getting them here safely. We dont smoke or drink while they are inside of us; we nourish them with good food and positive words.

We give them those 38-40 weeks.

And, when we fail (which preterm mommies believe they have done, regardless of the kind words of "but you got them this far..."), we have failed that our 2nd task (the first being to love them unconditionally) as a parent. We have failed to protect them. To give them the best first start that we could.

And for that, I wept. For those missing 12 weeks. For the cervix that wasnt strong enough to hold Nicholas, Sophia, and Alexander inside. For the body that couldnt support our miscarried babies. For the uterus that just couldnt expand anymore to grow Bobby and Maya. For the IV sticks and the bright lights and the overstimulation and pain that their little bodies have had to endure and continue to endure, all because "I got them this far...". Because I couldnt do more. Because my body couldnt. Because it failed. Because I did.

And, to Peter's credit, he just held me while I cried. There were no comments of "You didnt fail them" or "You got them this far" or "You should be grateful." There was just understanding because he knows well that no matter what he says, the guilt will always be there. That no matter how old they get or how well they do or how right the world seems to be, that under the surface, I will always want to tell them how sorry I am. How sorry that they cant grow up with their siblings. How sorry I am that their first moments- weeks, months- were not with their father and I, but in a sterile NICU, where nurses and doctors spent more time with them than we were able to do.

When the crying ended and the kisses from heaven began, we walked to the car, quietly. There werent words for what we had shared or for the what are going through. Just silent prayers. God, please, please, just let them be okay. In spite of everything else. Please. Let them be okay.

***

This morning, I got up and after pumping, I went for that walk. It is a dreary day. It rained last night and the world outside is in a fall Technicolor that only rain can provide. I walked through the park and, as I came through the housing development to walk home, I passed an elderly couple. Drizzle had started to fall. Kisses from heaven. I smiled and the gentleman said, "It's not a great day for a walk."

But to that, I replied, "No, it's a perfect day. I love the rain."

NICU Day 29

Today has actually been the "worst" day for the babies and, even writing that, I feel pretty horrible since their worst day is so mild compared to some. Both had some serious desating due to reflux. (I know, it doesnt even sound that bad). Bobby was setting his monitors off when I arrived and J, his nurse (whom we love) said that he was having some desats/bradys and she held him and burped him (funny, I know!) and he did better, so why didnt I pick him up and just hold him upright for a bit to see if that helped. You dont have to ask me twice! It did help and then I went to Maya for her holding. When she went to breast, she was chomping away- until she got a good squirt of breastmilk when my milk let down. And then she was choking. She coughed and I moved her upright while she sputtered and desatted. She gave me this look of "Mommy, what happened????" I held her upright on my chest and she just grabbed on and wouldnt let go. I held them each for about half an hour before they told us (via their monitors) that they were overstimulated and wanted to go to "the land of night nights" (as we call their beds when they go back to go to sleep). (When they start having desats even when they look fine, we feel like overstimulation has gotten to them and they are ready for bed. When they go back, they usually calm back into the 90s and are fine.)

My dad went with me today. He's so cute around them. He says that seeing them and seeing their pictures makes it "Christmas every day". He has full blown conversations with them when he visits, telling them how he's going to teach them to draw and how he'll get on the floor and play with them. Dad is also stopping smoking, because, in his words, he doesnt want to be thought of as a "stinky grandpa" and, like he told me today (which brought tears to my eyes): "I want to give them something I wasnt able to give you or Jimmy; a hug without them smelling smoke." Knowing just how severe smoke- even smoke that is lingering on clothing- can be to preemies, it really means a lot that he is stopping (all 3 grandpas smoke to different degrees). He is currently down from one pack a day to 3 cigs a day. He smokes them in pieces. Today, I picked him up at 9:45 and he hadnt smoked all morning. (The rule is no smoking before coming to the NICU because Peter and I dont want the babies to have a whiff of that even when they arent being held by anyone other than us.) I dropped him off at 2:30. For a smoker, that is a long day. Yet, he was doing great. He's working really hard at it. He's been teased at work (where a lot of people are smokers) and he told me that he just tells them "It's for my grandchildren."

There is nothing that happens in my day that isnt mitigated by seeing those two beautiful babies. As several bloggers have commented, it is easy to see Nicholas, Sophia, and Alexander in their faces. We know they are never alone. That when we arent able to be with them, their older siblings are...

That is so comforting...