NICU Day 20

Wednesday, September 30, 2009

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Our Maya, as lovely as ever... up to approx 2lb 8oz. Hopefully, she will gain a tad more and be in clothes by the weekend! Which means...


She'll be like her brother and able to be dressed, swaddled, and HELD TWICE A DAY! In addition to our nightly kangarooing, Bobby now gets to be held in the morning when I visit! It was so hard to only be able to hold him and not her this morning, but we know that she will gain the extra weight to hit 1200 grams so that she can be swaddled, dressed, and held, too.

Bobby was wide awake this morning when I held him. He looked at me and was captivated by the world around him (a world he doesnt usually see in daylight). After about 20 minutes, his eyes started to get heavy and you could tell he was ready for "night nights" but it was wonderful to be able to hold him. It will be just wonderful to have them both back to back.

I've dropped 20 pounds with the birth of the twins. I have two bellies: above my belly button and below it. There is a significant ravine. Not to mention the scar from the section. Please let this motivate me to work out better at the gym (no worries, folks, not until Dr Bailey clears me; at this point it is just light housework and, if I can manage, a walk around the neighborhood).

We just came home from our nightly hospital visit. Both babies were bathed (this nurse bathed them in a blanket) and then held. Maya has some reflux when she eats, so about half an hour into her eating/holding, she starts to desat. For some nurses, this isnt that big a deal, since it is the reflux that leads to it; other nurses like to put her back in her isolette and adjust the incline. She was held for about 40 minutes before going back to her bed. Bobby was held for almost a full hour and was so sound asleep that he didnt even stir as the nurse got him dressed and swaddled.

I sympathize with the babies right now. I have hiccups and they suck. :( These poor kids get them at least once a day. Poor little guys!

***

Missed the babies a lot today. Had a good cry as we left the NICU. I wish we had all of them here... I'd do this running back and forth to the hospital every day for the rest of my life if that is the only way that I could have them all here.

NICU Day 19

Tuesday, September 29, 2009

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Today just isnt my day... After being uber productive yesterday, I decided to start today by going to the hospital without my pumping equipment (and, of course, not realizing it until I sat down and was ready to hook up... Never have I felt like a worse mother than having to miss Bobby's care time for my own dumb mistake... This is why I usually prepare my bag at night, but last night when we got home from the hospital, we were just so busy.

Maya was wide awake when I arrived. She got her bath after we left last night (at her 8pm care time, her temp was 0.2 degrees too low, so she was spared, LOL). She dropped a little weight but otherwise was fine last night. This morning, very awake and loving on her snuggly. I have to admit, I smiled inside when I saw her pressing her face against it. I hope she was thinking that it smelled like mommy and she wanted to be a little closer to it. She was also sucking her thumb, which was absolutely adorable. She sucked her pacifier a bit too. But she was just so wide awake! Very uncommon for our princess, who likes her beauty rest. I sat with her for 20 minutes, stroking her golden hair, talking to her, and just being with her, and when she fell asleep, I went to the lactation room.

And found myself unprepared. To say I was miffed was an understatement, especially since my tatas were not feeling so happy being told they'd have to wait an hour for the ride home.

So, I went back to the NICU and explained to the nurse my error and that I wouldnt be able to stay for Bobby's care time, that I would just spend some time with him and then go. So, I sat by his isolette but he was just so sound asleep that I didnt want to bother him. Just opening one frame of his cover brought in light and even my hand gently resting on his head caused him to stir. I ended up only spending five minutes. I just didnt want to wake him up when he was going to be woken for his assessment in an hour.

I drove home on the verge of tears. Today is the first time that I havent done both of the "little" things of their assessments when I visit (temperature and diapers). I also didnt spend nearly as much time as normal. Half an hour ago, when his assessment was started, did he look around and wonder where his mommy, who is always with him at noon, was? Ugh.. Rips my heart out!

Last night, he got his bath and was slightly calmer than last time. Still not happy about it, but better than the first time. And he topped 3 pounds!

I'm hooked up to the moochine now... Once I'm finished, it's more laundry for me! And I have to write thank you notes at some point...

NICU Day 18

Monday, September 28, 2009

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I saw the babies this morning; they are doing great. They get bigger each time I see them! Bobby is just a tiny bit shy of 3 pounds and Maya is 2 and a half pounds. They think they may be dressing and swaddling them by the end of this week or next! I'm not sure how the babies will feel about clothes... They seem to love being naked and wearing their diapers are challenges!

Both are eating and returning very little residuals. They are holding their body temperatures well during kangarooing. The one thing we are noticing with Maya is that she is having some issue with breathing while eating. While her respiratory rate stays fine, her oxygenation rate tends to drop into the 70s (it should stay above 82) when she is eating. They thought that it might be because her feeding tube was in her nose (this started when she got the canula in her nose, so the idea is that she may be having issues with two things in there at once), so today they moved her feeding tube back to her mouth. When I arrived, she was having a desat, but the nurse chuckled and said she was fine all morning and must have heard me coming so she wanted to give me a show. Bobby seems to be the same way. He will have no alarm for hours, but then have us visiting his sister's isolette and he will have a bradycardia spell that lasts just long enough for us to look up at his monitor. (Seriously, just 2-3 seconds...)

Both babies are really doing so well. I cant complain.

I'm trying to get my milk production higher. I am in the normal range but because they add the fortifier to a higher amount, I'm feeling a little like an underachiever (this ticks Peter off since, as I said before, I'm producing the low end of normal). Last night, they thought they might have to thaw some milk. Peter sees this as fine, I see it as a problem. So, I'm hoping to boost production with MotherLove, a supplement to help increase breastmilk. They have a special PCOS formula, but Whole Foods didnt have that one in, so I'll be ordering it online. And even funnier, I may try the traditional Irish remedy of a few ounces of Guinness every other day. As I'm telling Peter the benefits of this groovy little beverage (iron, how the brew helps increase production, etc), the smart aleck yells downstairs "Dont forget the Omega 3 fatty acids." Yeah. You're just jealous that your ancestors didnt come up with drinking 6 ounces of stout every 2 days to increase breastmilk... We shall see... I need something to obsess over, so this gets to be it, I guess!

I was a busy girl today. This morning, I left early and went to the bank, BBB for a scale and some rubbermaid totes, and Whole Foods for the MotherLove. All before the hospital! I did Maya's care, pumped, then Bobby's care, and, on the way home, went to BRU to return 2 things from the shower that somehow were over purchased, even with them showing up on the registry (it showed that I registered for 2 but received 3... not sure how this happened). So, I returned them and got some preemie clothes, since the nurses asked that we bring in some button up outfits. I didnt buy too much; I mean, they wont be under 5 pounds forever! (At least, I hope not!) Then, as I continued home, I went by the jewelry store to pick up Peter's watch (to which we had Bobby and Maya's names added) and my mother's ring (recently set with sapphires). I also dropped my anniversary band off. I've needed it sized down for the longest time and just never got around to it. So, I figured, why not! No kidding, as I'm picking up stuff, the girl behind the counter says "You're the woman who just had the twins, arent you! How are you feeling? How are the babies?" (We live in a small town. This store is in the next town over, but is where we get our jewelry work done and where we recommended my mother-in-law go to have her work done.) It was cute. They wished us well, oohed over pictures, and asked that we remember to bring the babies in when they come home.

I did all of this before 2pm! I got home in time for my 2 o'clock pumping (well, I was 15 minutes late once I got into my 'pumping chair' and got started). Afterwards, I started a load of baby laundry (my hope is to get the preemie stuff to the hospital tonight) and then took a nap. The nurse last night and one of the nurses today stressed that I need to sleep during the day to keep my milk production high since I'm pumping at night (for example, I pumped and then went to bed at 1am, then back up at 5am... I normally pump every 3 hours except at night, so today has been pumping at 5am, 8am, 11am, 2pm, 5pm- yep, right now! I do it for 30 minutes then do clean up). So, I took an hour long nap. When I got up, I tossed the laundry in the dryer and cleaned breast pump materials (since I didnt do my hospital pieces when I got home because I needed to pump again). I kid you not when I say my life is pumping, babies, and sleeping. It really is.

I've got to get back into nutrition. It was easy to eat well when pregnant. I need to remind myself that eating well results in good breast milk nutrition. It's too damn easy to skip breakfast because I need to leave for the hospital (never mind I've been awake for at least 2 hours beforehand) or to skip lunch because of XY and Z and eat a snack (like peanut butter and crackers) instead. At least dinners tend to be somewhat balanced, but I've got to make sure the rest of my meals are too. It's part of my goal for this week.

Well, Peter should be leaving work around now... We'll have a little time together over dinner and then it is off to see the little ones! He is holding Maya tonight and I have Bobby. I cant wait. 8pm-10pm are my favorite two hours of the day...

Special Stork Delivery

Sunday, September 27, 2009

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For everyone following Devon's journey through pregnancy after the loss of her twins, which has included bedrest and preterm labor just to name a few challenges, her sweet daughter has arrived at 31 weeks! Stop by and send her good wishes.

Baby Shower and NICU Days 15&16

Saturday, September 26, 2009

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NICU Day 15: Bath Time!
They screamed bloody murder. Oh how they cried. It was so heart breaking that I wanted to cry with them! We planned on taking pictures of them in their "tubbies" but just couldnt. We were just trying to comfort them during their tears. We stroked their heads and talked to them. Both looked at us with sad eyes that begged us to stop the "torture". It was heartbreaking! However, when the hair washing started, oh how they changed! They were much more calm for that.

Clean (and very unhappy!) Babies! They were both trying to roll over. He almost made it before we caught him.
Bobby

Maya

We held them afterwards and they were both just wiped out. I dont think either of them even tried to move. And when it was time to put them back to bed, they didnt even stir. They had cried themselves out.

***

NICU Day 16
By request... The babies with their snugglies...
Our sleeping Princess Maya...

Our sweet (and very awake!) Bobby

The babies were still wiped out by bath time. They apparently slept very well last night and didnt even stir during their assessments every three hours. Maya was still wiped out although she was awake for part of our morning visit. Tonight, when Peter was holding her, she had a few desats in a row, so she went back to bed early. She was sneezing and the nurse thinks she may have gotten some mucus in her airway. She suctioned her and elevated her head slightly and things went back to normal. Bobby was awake this morning after his assessment but after about 15 minutes was ready for night-nights again. When I held him tonight, he was awake for about 45 minutes. He played with my finger, sucked his thumb, watched Peter and I, and then, finally, began to doze. He was pretty much out like a light when he went back into bed.

***

Baby Shower:
O. My. Goodness. There were so many people! When we walked in, the room was almost full. It took us almost an hour to meet and greet (and we actually didnt get to chat with a lot of folks). There were family and friends who drove in from out of town. But the craziest part was that it took us over an hour to go through the gifts. People were so generous. Our kitchen is full of bags and packages. Bobby and Maya will not be cold, dirty, or unable to ride in a car anytime soon. There were also beautiful handmade blankets, bonnets, booties... You name it. Everything was just beautiful. I will be spending the next week writing thank you notes. We set up a slideshow of baby pictures which was a hit. Everyone was just so kind. It was really sweet. So many people worked to pull it together and make it a success. My MIL got a lot of help to make the day work and I know people put so much into making it special. And it was.

***

We drove to the hospital this morning, then the shower, then back to the hospital, and now, we are back home and I'm on the moo-chine. We are both just wiped out. We arent sure when we will go to Mass tomorrow, but we are planning on it. That will be nice...

My c-section. Yuck. The drainage started last night (which is apparently quasi-normal once the steristrips come off. Oh for joy. I have a pad against it. It's not a lot, but I dont want it on my panties. It's a clear-yellow, which is apparently fat! Yummy! (As Peter said, "You dont mind that fat is leaking out, right?" Actually, smartypants, I do mind that anything is leaking out of my (closed) incision. It's gross!) And, in even more gross news, my belly is so dry that it is flaking almost like a sunburn. The lotion bottle and I are now good friends. It helps with the itching too. (OMG, how it itches!!! Again, I'm told this is "great news" because it means it is healing.) I tried holding my incision pad in place with an ace bandage, which worked great, but because of the pressure, it made the area red. :( Since I'm supposed to be looking out for redness, I've decided this is a bad thing and perhaps I will just let my panties hold the pad in place (even though the ace worked soooo well...) On a positive note, the healing ridge is, well, healing. The hard-as-a-rock area is shrinking. It has left the upper part of my belly flabby (the lower part is still hard). I'm getting around better each day and find that I can walk and stand more frequently. I even did a quick grocery trip and made dinner last night. I was pretty proud of myself.

As a close, a follow-up from yesterday's post. Peter is such a sweetheart and romantic. When we initially exchanged vows, we found these beautiful rings, made out of some sort of metal (I think they were $8 a piece- we arent talking anything major here). They had infinity symbols alternating with starbursts. We wore them until our wedding 15 months later when we exchanged them for simple, gold bands. But we kept those rings and decided that one day, we'd have them recreated. Last year, for our 10th (June) anniversary, we decided to have them made. We priced them, etc, but so much was going on that we never got around to it. Well... For this 10th anniversary, Peter somehow found the time to have our local jeweler make the rings.
The picture doesnt do it justice. Suffice it to say, they are beautiful. We exchanged them last night, at our kitchen table, over a simple dinner (before leaving for "tubbie time" at the hospital). I love my husband. He is such a wonderful man.

And, on an unrelated note, I just got a text message from my dad. My brother called him. Apparently he's worried I'm going to be mad at him. His son's middle name is Nicholas... I dont know that he named him in memory of our Nicholas. But I think I will go with that and think that it is sweet. I love my little brother. I know that some people might think "of all the names in the world, why would he choose the 2 names that they chose for 2 of their sons". I'd prefer to think that our family is so close that we share the beauty of these strong names and that my son is being remembered in J's son's middle name, just as we chose to remember 2 very loved relatives- a brother and a cousin- in naming Bobby. And, speaking of my nephew, little Benjamin Nicholas is doing great. Thank you for thinking of him and keeping he and his parents in your prayers.

10 years, my sweet

Friday, September 25, 2009

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You may remember that we celebrated our 11th anniversary in June. Today, we celebrate the public wedding we had 15 months later, after Peter graduated from college. It was ten years ago today that I put on that handmade dress and my dad walked me down the isle in the proverbial white wedding. That friends and family joined with us to reaffirm the vows we made to each other, to love one another forever, come what may. And those "what may"s have come. And our love is still just as beautiful as it was the first day we met.

Here are just a few of my favorite pictures from Sept 25, 2009.





NICU Day 14 part 2

Thursday, September 24, 2009

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We had a nice visit tonight. We took them both at the same time and sat next to each other. Peter held Maya.
And I held Bobby, who decided he was up for nursing again.

He was quite the champ (even though my breast is bigger than his head!). We'll do Maya tomorrow (if she's up for it!).

Tomorrow night will be a big deal because it is their first baths! And our favorite nurse, Carrie, will be there, so that makes it even better. She was there tonight and told us that the consensus was that the babies should be taken off the canulas. (I got there late because I was parking, so Peter was already talking to her when I came in, but I just heard that she wouldnt have done it and that they will begin weaning them off the pressure tomorrow.)

***
So many people talk about a lack of kindness in the world, but I am just so overwhelmed by the love and compassion of people I've never met. I've made a dear friend in a woman whose twins are with Nicholas, Sophia, and Alexander. She is an IC and cerclage mommy too, and is currently expecting (with a cerclage in place). We met online due to our similar circumstances and email regularly. A package just arrived from her with two beautiful outfits and blankets and four burp clothes (which my pics didnt come out well of).





If the babies are too small for the outfits at Christmas time, we hope to put them in them for Easter. The pictures dont do them justice. They are really breathtaking. Delicate and perfect, just like Bobby and Maya. Maya's dress has the most adorable little pink bloomers that match. Both Peter and I were overwhelmed by the package. She had them sent from Puerto Rico, which makes them extra special (since Peter's maternal heritage is Puerto Rican). Thank you, A. You are too kind.

Happy 2w Birthday! (NICU Day 14)

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I know that I was caught off guard by their first week on earth but I think I'm still in shock! 2 weeks... Surely it hasnt been that long... Yet it has. And they were more beautiful today than yesterday and the day before and the day...

I liked their nurse this morning. She was a chatty cathy but was really sweet and gentle with the babies. She actually brought up the canula issue and asked if it had been discussed with us. I said yes and that it seemed to be an issue where nurses didnt agree. She knodded and said that she wouldnt have put it in but that the a.m. nurse yesterday was uncomfortable working with the twins without it. They had an episode a piece while I was there, which was their pre-canula normal. We'll see where this continues to go... I wish we'd seen one of our standard nurses or NPs. I'd feel better talking to someone that we see on a regular basis.

I had a good care session with them this morning. Bobby will actually hit full feed tonight/tomorrow early morning and 1 calorie fortifier will be added to his milk. Maya will be moving to 2 calorie fortifier. Both had lightly dirty diapers but the nurse moved them to the next preemie size diaper! Yay! It was a little hard to get used to the new size because these are now biggish on them (but the others werent closing well anymore, so this is a good change). I did Maya's and recognized how bad it was. The nurse was really sweet and adjusted it and gave me some tips. Bobby's was a much better diaper.

Some questions from comments and emails... You guys are so sweet to worry about me. I received about half a dozen emails and a comment or two inquiring on my driving 2w after my c-section. Most were from buddies across the pond, in one sense or another. It looks like in parts of Europe and in Australia, you ladies get between 4 and 6 weeks off of driving. Here, it is 2 weeks. (Most people I know are also out of the hospital in 2 days; I got funny looks when I said that I was there for 4 days post surgery. Insane, I know.) And a cute comment from Sophie about Peter's chest hair. Yes, he is my little gorilla! The babies seem to love it. Maya grabs on to it as soon as she is on his chest and wont let go (to the extreme that sometimes she pulls hair out when she is being placed back in her isolette). Bobby seems to get a kick out of taking his hand and bringing hair towards his face, especially his mouth. He will watch me, watch him, and I will move the hair, and then he'll wait a second and do it again!

Well, I'm finishing up at the moo-station so that we can get on the road... Time to hold our sweet ones! (updated pics)

NICU Day 13 part 2

Wednesday, September 23, 2009

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We held them together! Peter won the toss and held them first, then I got to hold them. He did Maya's care, then she was placed on one side of his chest. Then, the nurse took Bobby out and placed him on the other side of Peter's chest. The babies would open their eyes and look at each other, but the cutest was when they reached out for each other's hands. Just how sweet. Peter struggled a bit to hold them both comfortably in the beginning because he wanted his hands under the blankets that were around them. He held them for half an hour.


And then it was my turn. If holding them separately is a place in heaven, then I have no words for what holding them together can be. It was indescribable. Just to have them both in my arms... They were reunited after 13 days apart. It was beautiful to be a part of that (but we forgot to get a picture of all of us together!)


The nurse was nice; she's had them once before and I see her when I'm there frequently. Bobby was also on a canula when we got there. Peter asked her about both and she confirmed that she felt it was overkill, that she wouldnt have done it. Yes, she said, they have had fewer/shorter apnea/bradycardia spells but that what they were having before is normal for their age and they were fine without the canulas. They arent on any oxygen, there is just flow so that, when they forget to breathe, it gives them a nudge and says "hey, breathe!" It felt better to have a nurse agree and say that the babies dont need them, even if this isnt considered a "set back". You can tell they dont like them and Maya pulls at the tape at her face and will cry. She said that they usually keep them on for a week and then ween them back from the flow until it is 0 (they are at a pressure of 1). Peter wants them taken off now because he thinks it is pointless and would prefer that they were learning their responses, since they were doing so well without it. We both agreed that we would discuss it with one of our favorite nurses or nurse practitioners and see what would be best for the babies. Peter's primary concern is that the a.m. nurse from yesterday basically put them on the canulas because she didnt like that they went from CPAP to nothing. It has shortened the duration of the drifts, but hasnt taken them away, which is what the nurse had argued it would do. Bobby had more than yesterday and Maya, although she had more yesterday, had one with us there last night without hiccups, all while she was pulling on the canula. So, neither of us are really sure how this is helping. But, as I said, we will talk to them more. If it isnt helping or hurting, there is no reason to keep it. If it is helping, that is another story, and sometimes you have to have the babies uncomfortable so that they get better.

Bobby gave Daddy a very stinky diaper. VERY STINKY. It was kind of funny... By the time I was finished holding them, I was leaking all over the place. The front of my wrap had huge spots on it. Once Bobby was back in his isolette, Peter handled his care while I pumped.

I drove to and from the hospital. Peter wanted me to have my first driving with him since I will be going alone on Thursday morning. It was no problem at all. In fact, today has been the first day I've felt somewhat normal. Still sore, still in pain, but I've gotten around better as the day has worn on.

Well, it is time to pump before bed, so nighty night to me!

NICU Day 13

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Okay, so today wasnt a great morning visit. It wasnt bad, but it wasnt ideal. The nurse was okay. On a scale from 1-10, I'd give her a 7. Our favorites are 10s. Most are 9s. (The one I didnt like at all: a 4- maybe?). She wasnt a bad nurse. But she wasnt cozy to the babies. She was slightly rough when she turned them over and when she took the tape off of a lead she was changing. Both babies cried in that "that hurt" sort of way, which isnt normal for either of them. They will cry a "leave me alone" cry when they dont like being assessed, but it's been rare that we've heard a real cry. Like when IVs are going in, that sort of thing. So, anyway, she was a little rough with turning them and when removing tape, which irritated me. But, she wasnt terrible and it wasnt enough to say something. However, what I did talk to her about was feeding them and putting them on their backs. Both of them. All of the nurses we've had have said that belly time is best for their digestion right now. It is the only way they can keep up with the higher feeds. So when I come in, I see they are on their backs and she says "I wanted to try them on their backs even though I see they normally eat on their bellies." So, they both went from no residuals to 5cc's (Bobby) and 7 cc's (Maya). "Oh," she says. "For this feed, I guess I'll put them back on their tummies." Perhaps next time we can do what the NPs and the nurses have been doing and continue to do to help the babies. We've discussed back time with the NPs and how they will be weened from their belly time as they progress and get closer to the transitional nursery. They arent there yet. I wasnt rude, I just reiterated that all of the NPs and nurses we've spoken to have recommended they stay on their bellies to help aid with digestion. She agreed (hence the rough flipping over comment from earlier).

The other thing that was a little disconcerting was that she put Maya on a canula. Now, if either baby needs support, we want that for them. What we dont want is someone jumping the gun on something and delaying their progress. Last night while I was holding her, Maya got hiccups and her oxygen saturation dropped into the high 70s-low 80s (the alarm is set for below 82). When the hiccups went away, back to normal (high 90s). Now, we had talked to one of our favorite nurses the night before and she said they were doing great and that having apnea spells are normal, etc. and that, due to their normal breathing and oxygen saturation, they dont foresee putting them on canulas or back on CPAP. So, this morning, Maya has a canula. When I asked why, the nurse says "Oh I didnt like that her oxygen saturation was in the lower 80s and sometimes the 70s. She was lower than average for almost half an hour." Did she have hiccups? "I dont know. I didnt check." Please explain to me how the other nurses know this. How they have checked her and said 'Hmm... This is normal for her..." So, I asked if this was temporary and she explained that Maya isnt on oxygen, just that she has the canula in and that she has been better. (Part of me wanted to say that 99% of her day without the canula is normal! She only drops when she gets hiccups! Which she gets mostly when she lays on her back and gets air in her belly!) I think that this woman jumped the gun (or maybe got tired of the monitor) and put her on the canula. It seemed obvious that she was "concerned" that "these babies went from CPAP to nothing" because she "would have put them both on a canula for at least 2 weeks after the CPAP". Her words. I plan on asking the nurses we know about this. I know there is no harm in having her on there. And if it gives her less stress, fine. But she hates it. She cries and is pulls at the tape holding it in, which makes her cry more. She looked at me today with these eyes that said "Get this off me, Mommy" and all I could do was stroke her perfect little blonde head and tell her how much I love her.

The other thing and, yes, I know I'm sensitive, was a comment she made to my MIL. She asked if Maya and Bobby were her first grandchildren. MIL says "No, we have three older ones, but they passed away because they were very premature." And the nurse says "So these are your..." (struggling for a word: insert my thought as she is struggling "real") "first live grandchildren". It rattled my MIL and the comment stung. Our other nurses have read our file and many have asked details about Nicholas, Sophia, and Alexander. They have mentioned Bobby and Maya's brothers and sister. This nurse seemed very uncomfortable by the whole thing, even though she brought it up.

Now, since I've bitched, let me give the nicer update too. She was very competent. She moved the babies from the giraffe isolettes (the hardcore, baby-may-have-serious-issues bed) to the next level isolettes! And she was very excited to share that they moved very comfortably and were doing really well with their body temps and with the transition. She explained about the new isolettes and how they will be ready to be dressed and swaddled by next week. She also said that the hospital strongly urges the preemie onesies that snap up the front and only those. The other ones are a real pain with the leads. So, I'll go through the items we've been given and see what we have and need to get. She said that they are "happy" and "beautiful" babies (which I must say never gets old and endears the nurses who say it). She said that Maya had the most lovely golden hair she's seen on a baby. (It's nice to know I'm not the only one who admires those locks!) and that Bobby is very aware for a baby of his age, that whenever she did his care, he would wake and watch her and was very responsive. And she commented that I am an awesome cow (okay, she her words were that I have an "excellent response to milk production and pumping" but to me, I keep hearing Sarah's "Moooo-chele" on the "Moo-chine" comments and cant help but want to laugh).

Probably the best part of the visit and the talk with the nurse, though, was her suggestion that I hold the babies together! She said that since their IVs are out, she thinks that moving to the center of the pod and holding them together should be manageable now! Her suggestion was that one of us holds Maya for 30 minutes, then Bobby is added for 30 minutes, then they are moved to the other parent for 30 minutes, then Maya is put away and Bobby stays for another 30 minutes. It ups the holding from an hour to an hour and a half per baby, which she said is pushing it at this age (because you dont want them to get chilly) but that it could really benefit them to be together and for us to hold them together. She said that a lot of times, the twins reach for one another and hold hands and things. She said she would mention it to the night crew so that they can assess whether today would be a good time to try or if we should wait until Maya's canula is gone. But she seemed to be positive with this idea. She also said that it is paramount that I hold at least one of them once a day. That it will help with my pumping and that she often recommends moms hold more than dads (I think Peter might take issue with that one!)

The babies are doing well. They are eating well, growing, and going to the potty well. They are beautiful and wonderful. But my visit today left me wanting my visit tonight even more. I trusted the nurse to go home; she did seem a competent nurse. I just didnt care for her as much as some others. And that, I think, is to be expected. There are a few that have just really taken a place in our hearts and when we see them on duty in our pod, we get so excited. I cant expect to have that feeling for every single nurse. But you want it nonetheless.

We took their snugglies to them last night. The snugglie is a simply head only doll (fabric draped over a fabric circle and sewed off; it looks almost like a ghost but the fabric is well colored. Moms wear them for 3 days in their bras then they are put in the babies' isolettes or cribs so they can smell me. Peter wore the snugglies yesterday for a while too, so they can smell us both.

Well, my pumping is done for now and I am so tired, I think I'll take a brief nap... We'll be going back tonight for our holdings. I'll make sure to try and upload pictures tonight when we get home since I wont post an update tonight (unless there is something huge to post).

Happy 10m Birthday, Alexander

10 comments
Oh my little Cuddlebug... How is it that 10 months have passed since you were born? 10 months ago I was in the hospital, holding you in my arms, hoping that I would stay asleep forever so I'd never have to let you go. It felt so right holding you... As if nothing else in the world possibly mattered. If I stayed in that room and didnt move, perhaps I'd never have to give you up...

Your Daddy and I miss you every day but we know you are safe with your big brother and big sister. But we still miss you; we miss all of you so much. You are always on our minds and in our hearts. Waking or sleeping... Always...

Yours will be the first "real" meal I'll prepare since coming home. I've heated up things others have made, but I'm glad that my first real cooking will be your special dinner and dessert.

I love you so much. Happy 10 month birthday, Alexander!

NICU Day 12

Tuesday, September 22, 2009

10 comments
Once again, a great day. Maya had a few drifts while I held her (and wasnt at all interested in the boobs until after I had moved her up onto my chest... of course...) and Bobby tried to eat chest hair, but otherwise, all was well. :) They both are IV free and sooo much happier. That was the biggest change. They are currently in "growing" mode, just being fed (yay breastmilk!) and putting on weight. Last night, the nurse said "That is their only job right now. To grow and to feed."

Bobby is getting more and more alert on our visits. He opens his eyes and looks around; he looks right at you when you are talking. Maya will do this also, but she tends to love her beauty rest. When it is time for "night nights" she is more than happy to oblige. Bobby will watch you until his eyelids are heavy and he falls to sleep. They are both so adorable in their own ways.

I find it hard to believe that things are going this well. Thank you all for your comments on "Guilt". It's been something I'm struggling with and one of my comments called it "survivor's guilt". That is it. I feel like I've survived something harrowing and I feel guilty for those that havent been so lucky. That is exactly how I feel. And then someone else put it in perspective when they shared their feelings on being pregnant after adoption and feeling that guilt and noted that I would tell her not to feel guilty. And she is right. I would. And I would mean it. I owe it to myself to say the same thing when I look in the mirror.

Once again, all is well at the Haytko house. My steristrips are starting to peel. Dr B said that after a week that might happen and it's okay and that if they arent gone by 2 weeks, I can remove them (dont think I'll have that problem). Today is day 5. Anyone had a c-section or ab surgery and had their steristrips come off prior to day 7? My belly is still tender and sore, and the ridge is still very pronounced and hard, but each day seems to get a little easier. I just am so tired by nightfall. I could sleep forever.

Well, I have half an hour to finish cleaning up from dinner before I have to pump and then fall asleep so we can start our day again tomorrow, so I'll close for now...

*** Please visit Catherine who is remembering her sweet Travis today. The blog post isn't open to comments right now, but send her prayers.***

*** My nephew, Benjamin Noah (I think Noah is his middle name, it was the last time I talked to my brother several weeks ago when he asked if I was okay that he liked the name Benjamin too), was born at 12:37am today! He weighed 8 pounds 5.7 ounces and was 21 inches long. As of my last update, he was doing well. Please say a prayer that his health continues and that his parents embrace their parenthood. ***

Pictures

Photos through 9/21 have been uploaded here

Guilt

22 comments
There's been so much floating around in my head in recent days. So many things I've wanted to say but havent been able to because there hasnt been time to sit and just let things out.

I feel... I dont even know how to express how I feel. It may sound crazy. I dont know...

Am I a success story? In the IF and loss community, what makes that? Is it the BFP? Getting out of the 1st Trimester? Passing the milestones of when your previous babies were miscarried or died? Is it bringing home a baby from the hospital or celebrating the babies 2nd birthday, when the risk of SIDS is so far gone that you stop worrying? Is it when they graduate high school? Get married? Is there a safe time that we are considered "successful" in pregnancy and childbearing?

I dont feel like a success story. I tell myself that maybe had I gone full term I might be able to consider everything a success, even with the bedrest, etc. But did I succeed? I dont feel that way. I feel like I was several weeks shy of it. Which makes no sense, since we all know that full term doesnt equal happy ending. Hell, bringing baby home doesnt equal it either.

So, is this a success story because Bobby and Maya are alive and doing well, in spite of their prematurity?

And that brings me to the guilt... And not the guilt of not holding them in long enough but the guilt I feel in the Community. This may make no sense at all, but I cant help but look at other "just shy of 28w" twin mommies who lost one of their babies... And I am so heartbroken. This is true of all of the blogs I follow where I passed by the time that babies were delivered. I remember feeling the pang of sadness when blog and IRL friends passed by 16w... 17w... 18w... There was joy that they were beyond that but it also hurt. And so I wonder: when I marked each day off the calendar and passed by each week, who was reading who felt joy that we were another day closer but felt that stab in their chest because I was farther along in pregnancy than they were when their baby/babies were born? Who reads the NICU updates and, once a certain day passes, is both happy because Bobby and Maya are doing well, but said because their baby died in the NICU on day X?

I feel guilty for bringing pain. I know there is so much more joy in how Bobby and Maya are doing, but I also feel a stab when I write, wondering who is reading and if it hurts. I know that we read the blogs of others who have lost and that it rekindles our hurts, but in that, we support one another and help each other through the rough times. But our pain in still there and, especially when rekindled, burns brighter... Hurts a little more... Let's us know it will always be there with us...

***

Last night was a bad belly night. In the morning, I did some very light housekeeping. (VERY light, I swear. I made the bed and sorted mail. Nothing major. I did walk back and forth quite a bit but that is "good" for me.) I was tired when I got back from the hospital and lunch, so after pumping, I broke my new afternoon rule of no sleeping and took a nap. It was lovely. I know that I need to get my days and nights back on track, but man, I miss those afternoon naps. Given, my day was pretty funny: pump, shower, hospital, Maya's care, pump, Bobby's care, lunch, home, pump, nap, pump, dinner, hospital, Maya's care/holding, Bobby's care/holding, home, pump, sleep. (and then wake this morning and start with pumping!). Not a whole lot else going on! But that is A-OK with me. They are growing and that is so important. But, last night, I started to feel it. I was aching a little when we got to the hospital. I sat down during Maya's care and, since Peter was holding her, I sat next to them. Then, I went and helped with Bobby's care, but needed to sit down afterwards and have his nurse bring him to me. (We are now allowed to pick them up ourselves but because i need both hands to sit down, I have been asking the nurses to continue bringing them to me). Peter sat next to me, and we had a wonderful hour of holdings, even though I really started to ache at the end. By the time we were leaving the NICU, I was really feeling it. I hadnt taken anything all day and was really hoping I was pretty much weaned off the drugs. But, I was in serious pain by the time I got in the car. Eventually, I fell asleep and Peter helped get me inside once we got home. After pumping, he gave me some pain meds and helped get me situated in bed, where I very quickly fell asleep.

I feel better this morning. There is still just so much healing to do. It's hard to be gentle on yourself when you feel like you should be healed already. Peter and Sarah both tell me that it's abdominal surgery and I cant expect to just go back to normal in 2 weeks. Online, it talks about months to heal fully. I think that once the "ridge" has healed and I dont feel like I have the Grand Canyon around my incision mark, I will feel better. Until then, the ice packs and I are practically married...

The NICU nurses think I'm healing faster than average and that I am more mobile because of my history of yoga. I told them that I was not in great shape prior to this pregnancy, but they say that there is a difference. So perhaps they are right. I'll blame this "fast" recovery on yoga.

The babies... No post would be complete without mentioning them. There is no pain in my belly that cant disappear when holding them close. Peter asked last night if I wanted to put him away early because I was uncomfortable. Never! It's well worth it.

Oct 5th is the NICU fundraising dinner. We bought tickets to go. There is a golf thing (which we arent going to since neither of us golf) and then dinner and a silent auction. It will rearrange when we see the babies but we felt it was important to donate and to go.

I guess that is all for now. I plan on updating pics to the photo blog soon. I know I'm a tad behind...

Bobby, 9/18, watching Grandma and Grandpa

Maya, 9/18, my favorite of her thus far

NICU Day 11

Monday, September 21, 2009

5 comments
The babies are quite the growers! They are now at or over their birthweights. Maya hit 2lb 6 oz but went down to 2lb 5oz when they took her off the IVs, which they said was normal (that the wires weigh something). Once they move down a notch in isolettes, they said to expect some weight loss too, since the giraffe beds tend to add a few ounces here and there. Bobby is now 2lb 13.1 oz and is due to come off his IVs today.

One of our favorite nurses was on duty last night and she said that the next week is going to be a big one for them. She anticipates that they will move isolettes and get their first baths in the next week! Also, once they hit 1500 grams, they will be wrapped and dressed. I cant wait to help dress them. (Although, I think a certain little boy likes his nakedness!) And we are both so excited to give them their first baths! They are both eating so well. She is now at her "full feeding" of 22ml and he will soon be at his full of 32ml (it's based off weight).

They continue to progress daily. It's amazing to watch them grow and develop. Thank you for the prayers; they are most appreciated. I cant believe the babies are almost 2 weeks old.

Please say a prayer for my nephew, Benjamin, who is currently in the process of being born. My stepdad emailed me; as of 8:30pm, my brother's girlfriend was 4cm dilated. So, we may have another baby in the family as of tomorrow morning.

NICU Day 10

Sunday, September 20, 2009

14 comments
Double digits. Bobby and Maya are 10 days old. They are growing like weeds and are doing great. Nothing really new to report from last night. Every day is just a new blessing.

Tonight, Maya not only went to the breast, she took it! She latched and suckled like a champ. The nurse was blown away. She leaned over my shoulder and said, "Wow! Look at her suck!" We only held her that way for about 15 minutes because she got wiggly and was messing with her lines, so I took her to my chest to finish her feeding and relax. She dozed and held my finger. So sweet... Peter held Bobby and after we put Maya away, I spent some time with them until my breasts began soaking my sweater, signaling pump time.

It was a long day. We took my dad to the NICU this morning, then dropped him off and went to a Christening (just lovely!) and then back to the hospital. Home now and having some dinner before bed. We are both wiped out.

At some time, I will check and respond to email. Just cant right now. It's all I can do to post entries and read blogs as I pump (like now). Once I'm caught up (almost!) I will get back into my email for more than just the daily NICU notices. I promise!

NICU Day 9

Saturday, September 19, 2009

18 comments
I just had to log on for an update, even though I am about to fall over I am so tired. (Today, we decided no nap in the afternoon and to try and have a full day to mimic getting back into a routine.)

So... If last night was the worst of times, today was the best of times. We loved, no LOVED, all three of our nurses. This morning, there were 2 working in tandem and they were both just wonderful. Then tonight, another wonderful nurse. All of them were marvelous with the babies, whether they were intervening with them or just talking to them. You could see how much they cared for them during their monitoring and care. And they all were more than happy to include us in the things that we could do. It was great. Just great. And, as one commenter said, the nurses you dont particularly care for are the exception not the rule. I would say the majority of those we've encountered have been wonderful and that seems to be the rule. Last night, I think we just ran into someone who wasnt on the ball or was just overwhelmed. Which isnt an excuse in my book, but at least, if that was the case, hopefully she wont be reassigned to any children that need excessive care and they can keep her with healthier babies, for whom she might do better. We shall see. (Of course, deep down, I'm hoping she isnt our nurse again!)

Someone mentioned the pumping room for gossip... I've got to say- I've never run into another mom in there! Once, as I was going in, a mom and dad were leaving, but otherwise... It's a ghost town! There are two rooms and I've always been either alone or it's just been Peter and I in our little covered area...

So... On to tonight! Well, as of this morning, Maya has hit her birth weight (2lb5oz) and Bobby is only 3oz shy of his at 2lb10oz! Her feedings are now up to 12ml each and his are at 9ml each. She is doing better with her diapers but they think that once he goes to his tummy, he will do much better. (She's dirtying just about every one, whereas he is good to do 2 poo's a day). She is now completely off the lights! And they think they may take her IV/PICC out soon! They said they most likely will stop the lipids and electrolytes tomorrow and leave the IV in just to make sure they dont need it and then take it out in 2-3 days. WOO HOO!!! He is due to have his tummy line out by Thursday (which will mean some belly time!)

But the best news... Tonight when I held Bobby (Peter held Maya), we did non-nutrative nursing. For those that dont know what this is (and I confess, I didnt know until after they were born), this is where you give your baby your breast without the goal of feeding them. You express a little milk then bring them to your breast and go from there. It was just wonderful. I expressed while he was feeding and he licked, then began to suckle! It took him a bit to get his mouth around the nipple, but once he had, he wasnt letting go! After he fell asleep, I tried to move my breast (because, let's face it- it's bigger than his head!) and he opened his eyes, relatched, and then relaxed again, one little hand resting by his head. I held him in a cradle position like this for 45 minutes, then for the last 15 minutes moved him to the center of my chest, before we put him back in his isolette. I'll try this with Maya tomorrow.

It was just wonderful. I'm still on a high from it, even though I am so tired I know I will fall asleep as soon as I close the computer and take off the pumping apparatus.

Thank you for all the emails. I'm so far behind in answering them. I havent even opened most of them. Save opening the NICU emails each morning, I've been trying to catch up with blogs during the morning pumping before the hospital and then logging in at night after the hospital to give an update. I promise- I will get around to emails! And, for those IRL folks, I will, at some point, return phone calls. My phone is perpetually on no sound because of the NICU rules and I forget to turn it on, so it is late when I get messages. So sorry! I'm usually a much better responder!

NICU Day 8 (yesterday)

15 comments
You would think that I would have so much time. I mean, there are 24 hours in a day and if you think I visit with the kids for 5, pump/clean up for about 6, drive at least 4, and sleep for 8 (broken up in pieces, of course), that leaves me an hour to blog... Not to mention the 1/2 hour of the pumping sessions where I am hands free... But alas... That is not meant to be. I had a post for last night but by the time we came home it was after midnight.

The babies... Perfection. Sheer, heavenly perfection. I have no words. I am blessed beyond words. I feel so guilty because I wanted to hold them inside for so many more weeks (today would be 29 weeks...) but at the same time, I am so overwhelmed by their strength and health. They are increasing on their feedings. They are both making beautifully messy diapers. They trace with their eyes as we talk to them and, when they are frustrated and we talk to them, they calm. They hold us when we hold them. Their hearts sound great and their little lungs are functioning so well on their own. They are doing well with their temperature control. They may be moved into the next level down of isolettes. Maya is on her way to joining Bobby off the lights. I know the road is so long and I wait to go in and have bad news delivered, but it hasnt yet come. Will it come once I feel we are safe?

Yesterday morning was a lovely visit. We only really spend about 20 minutes with each baby during their care time. We take their temps, change diapers, hold feedings, and then get to cuddle feet and the tops of their heads through the doors of the isolette. Then, it is time to close it up and cover them with the blanket so they can go back to sleep. In between babies (Maya is done one hour, say 11am, then Bobby the following, noon), I go to the pumping room and do my half hour and clean up. Afterwards, we've been grabbing lunch and then heading home, where I pump again (an hour ride plus lunch... I usually get home around the 3 hour time frame). Then I take a nap. I am usually just so worn out (I think some of it is getting up to pump in the middle of the night but part of it was being awake with the babies inside during the night and being used to sleeping in patches of a few hours... I have to retrain my body...). After a few hours, I'm up to pump again, then it is time for dinner, and back to the hospital for our kangarooing.

And this, dear friends, is where our story picks up for last night (day 8).

For kangarooing, we are to arrive at 15 minutes before the scheduled care time (so that care can be completed and the baby's feeding schedule not thrown off). So, at 7:45 last night, I walked into the pod where Bobby and Maya are kept. Dropping off breastmilk, one of the nurses introduced herself as Bobby's nurse but said that he and Maya had been seperated for the night. (I dont like this, by the way; I prefer the same nurse for each of them. But, they have gotten some really sick babies, including their pod mate, and the nurses seem to be dividing the easy babies so that one gets an easy and a hard. As much as I dont love this arrangement, I do love that my babies are considered healthy enough to be easy. But the squeaky wheel gets the grease, too, and I worry that they arent going to get attention that they need... But let me get back to my story). I liked Bobby's nurse. She was very outgoing, talked to the babies, and was very involved. At this point, I still havent seen Maya's nurse. I make conversation, that, yes, we are kangarooing tonight. That we do Maya first and then Bobby, etc. Still waiting. By now, it is 8pm. The nice nurse offers to go find our nurse, who makes a brief appearance and says she's busy and will back to get us started. Long story short, her temp and diaper were done at around 8:10 and then the nurse was gone (given, she was helping another nurse get an IV in- very important but are you the only nurse on the floor???). 8:40 rolls around, Maya still hasnt eaten and is getting frustrated, even as we are holding her feet and head (which is uncommon, both babies usually relax when we touch them and talk to them). Finally, she comes back and takes Maya from her bed, to which her depositing of my sweet daughter on my chest could use some work. She didnt give her a hat. She laid one blanket over her. And then she was gone. I was wearing a thick open front sweater, which I wrapped around her head and body and she was warm against me. Peter fed her (thank goodness before she left, the nurse gave him the syringe of breastmilk) and we talked to her and loved her. She was wide awake, which was good and bad. We love to see her alert, but her sleep cycle usually has her asleep by 8:40. Not last night.

And then the fun really began. Remember how I said that their pod mate needs a lot of attention? No sooner had Maya been wrapped in my arms, than the alarms sounded. And loud. And often. And he was screaming bloody murder because the nurse, who was interceding, was also in the midst of changing his bedding and feeding him, neither of which he was digging. It was the loudest night we've ever had. As Maya was dosing off, an alarm would sound and she would open her little eyes wide. I kept a hand over her exposed ear, which helped some I hope, but at some point, Peter and I were discussing limiting her holding and putting her back, just so it would be quiet. Of course, our nurse was gone, so that wasnt too much of an option! At 9pm, it was time to start Bobby's care, so Peter really got jipped on Maya-time (I was holding her but we sit together and spend time with the babies). So, he did our son's care and even postponed holding him for a few minutes, but we didnt want to screw up his schedule so we asked Bobby's nurse, amid the loudness, if she would put Maya back. It was the hardest thing. I'd only held her for 40 minutes and, in NICU life, that extra 20 minutes means the world. But more than anything, we wanted her comfortable and the loudness and the lights... She wasnt going to be able to really rest. Not to mention, her care would start again at 11pm, which would mean maybe 90 minutes of rest if I put her back early before she was bothered again instead of 75 minutes.

So... the nurse comes back, announces she doesnt know how to use the isolette to weigh the baby (REALLY???) so Bobby's nurse, who was kind enough to change Maya's bedding before saying that she'd be happy to put her back, says that she will do it. Peter has helped with this before (these beds weigh the baby by weighing the bed with the baby then you lift the baby and it weighs again and subtracts appropriately). Well, Maya's nurse looks upset when Bobby announces that Peter will be helping her weigh. I wanted to reach out and smack her. Handing my tiny daughter, who was reaching for me and crying back to the nurse I couldnt stand was horrible. She put her back in her bed just fine and Maya settled down and fell back to sleep quickly, but still... It was horrible. The only saving grace was that Bobby's nurse told us that Maya's nurse was only an 8 hour and was leaving at 11pm. Otherwise, I dont think we would have functioned leaving. As Peter said, we would have slept in shifts and just stayed all night. I dont think she was incompetent (although maybe) but she wasnt the caliber of nurse we have been used to in the NICU.

Peter went to do Bobby's holding and, because it was so late, I went to pump at the beginning rather than the end of his kangarooing. When I was finished and came back, we spent some time together before it was time for Bobby to go back into his isolette.

Both of us were quite verbal on the way home about the nurse we didnt care for. We'd never seen her before and are hoping she was just a per diem (which makes some sense since when we were there for the afternoon, I heard some of the nurses say that several nurses had called out for the evening). On our way out, we saw one of our favorite nurses coming in and told her we hoped she had Maya for the evening. She is sooo good with the babies. So good. Unfortunately, you cant choose the nurses for the babies. You can say you dont care for them but unless they are negligent, you cant say "I dont want X caring for my child." Thank goodness the other nurses step up and the nurse practitioners are always near by in the event of an emergency. All that being said, if either of the kids is assigned this nurse again, I plan on saying something to the nurse practitioner on duty, along the lines of I'm not comfortable with this particular nurse. Perhaps it was all the stress of last night. They seemed very harried with the babies who needed a lot of help and perhaps that set the mood, but it was a rough night.

Well, my pumping is over, which means it is time to close up. We leave for the hospital in 25 minutes. I am way behind on blog reading, but am doing it as I am pumping to try and catch up. I'm still here! It's just taking me a bit!

Happy 1w Birthday! (NICU Day 7)

Thursday, September 17, 2009

25 comments
Our sweet babies were one full week old around 7:20pm tonight. Wow. 7 whole days on the outside. It doesnt seem like it has been that long. A week sounds like a long time, right? I mean, I used to flip the calendar over every day to get to that "one more day" in the week and now... So fast. Happy One Week Birthday, Bobby and Maya!

A short update because I am so tired. Pictures will have to wait until I upload them. I have another post I want to write, too, but I am too tired to do it tonight. It is much busier than I anticipated with driving to and from the hospital twice a day, but it gives me the time in the afternoon to nap, which I need, so we both agree that this is still the best thing for us right now. But it is rough. The morning is so quick with pumping, showering, and breakfast, then leaving. Then, I get home and it's nap time and pumping and dinner and pumping and leaving. Then we get home after 11pm. But it is so worth it. There is nothing better than ending the day holding them. So wonderful...

They are doing great. Just great. Bobby is now off his lights as of today. He was 0.8 and they said that is low enough to remove the lights. YAY! And they expect Maya to soon follow. They are discussing moving them from the preemie isolettes into the next level of incubators. Woo Hoo! They both gained about 40 grams today. They havent had any issues being off the CPAP and on room air without pressure. Maya had her last dose of the baby advil and, as of this morning, they could no longer hear the murmur so it looks like it worked. She's been dirtying her diapers consistently, but he is still working on that.

When they open their eyes and look at you with those beautiful stares... It just melts your heart. Bobby has dark hair and his eyes look to be dark also. Maya has light hair and her eyes look like they may stay the hazel-blue color. We shall see. But, regardless, they watch you when you talk to them and, when Peter and I both are with them, they will trace back and forth between who is talking. It's amazing.

I had my staples removed and do feel better. Still sore. Still hurting. But no percocet today. 3 doses of ibuprophen, but that is keeping things at bay.

Well, it's time to turn the pump off and go to bed... I'll try to get pics up tomorrow.

NICU Day 6

Wednesday, September 16, 2009

17 comments
Today was our first trial run of our "hoped for" NICU schedule. Peter's mom came and picked me up a little before 10am. I had pumped and showered and was ready by 9:30, which I'm happy about, because even though I am a little slower, I am able to do things in the time frame we set up to try. We made it to the hospital a little before 10:45am and she dropped me at the door to save me the walk from the parking lot. I went ahead up to the NICU while she parked and scrubbed in. Our favorite nurse, Barbara, was on duty. (It's amazing how quickly you fall in love with people... All of the nurses are great, but she just cares for the kids in such a way...) The first thing I noticed when I walked in was that Bobby's light was off and his isolette was covered (which means no lifting it up to peak in because the light would wake him up). So, I looked in a crack in the covering and confirmed it was still my son. (Barbara was on a call, so I couldnt ask at this point what was up). So, I walked to Maya's isolette (where the light was still shining) and peaked in and was taken aback: no CPAP. No canula either. Just a happy baby, sleeping (and breathing) peacefully, just like her brother. I took my pumped stash to the fridge and got that squared away and Barbara soon joined me.

Both babies are doing excellent. Bobby's bilirubin dropped into the 3's and now he is on a 12 hours on/12 hours off schedule. Since we kangaroo him at 9pm, his schedule on is 10pm-10am, which means he will be off 10am-10pm. When he is on, he is on low intensity. He has done outstanding off his CPAP so there is no plan to use the canula. He's had several bowel movements (although not an "explosion" as they would like to see since he had struggled for a few days without), but he is digesting better since. He still isnt digesting his entire feeding, so they are hopeful that soon that will change. He will be moved to his belly next week and they anticipate that helping in both the pooing and the eating departments. He has gained weight. He's up 30 grams! So, this is great news.

Maya's bilirubin was up yesterday but then dropped this morning to the point that she is now on low intensity lights (still all the time). They had dropped her CPAP to 4 yesterday but decided to give her a go without it and she's done wonderfully. They no longer hear the murmur and believe the neoprophen has done it's job (she gets her last dose tomorrow). This has probably helped with her breathing since the valve that hadnt closed completely impacts the lungs also. So, great news on that front. She is pooing regularly (I got to clean a dirty, dirty diaper this morning!) and digesting all of her food. She too has gained 30 grams.

Both babies are eating only breast milk. I am able to pump between 3/4-full preemie bottle at a 1/2 hour sitting (a full bottle is about 60cc's). I'm pumping every 3h except at night when I split the difference and do around 4.5-5h from my last nightly, and then get back on the 3h when I wake up. And, while we are talking about boobs, I have to say that the hands free pumping bra is the best darn invention I've seen in a while. I love it. It came yesterday and I am so sad that I didnt think of it earlier. If you pump and dont have one, GET ONE. It's great. I'm quite chesty and was concerned it wouldnt work well, but you stick it on, plug those bad boys in place, and then go about your business. Because it doesnt get tired and the bottles stay in place, it really increases your milk discharge because it is consistent. Not to mention it decreases your wrist pain and allows you to do a double pumping by yourself. One of the hardest things was that I had to wake Peter up in the middle of the night not just to fill the transport bottle and clean the bottles, but to help hold them on, etc, because I couldnt get them situated all the time. Now, no problem. It's great. I even fell asleep with them on this afternoon. Awesome investment.

A cute story... I held Maya tonight (Peter held Bobby) and as Peter was leaving to go to Bobby to do his nighttime care prior to holding, he let go of Maya's finger and she let out such a cry! We both laughed and she settled the second he put his finger back. Already spoiled... And got Daddy wrapped around her little finger...

And the dreaded c-section. Well... It still hurts. But, I've decided I'm not a martyr and I'm taking the pain meds, in spite of how they make me feel. I have a plan that I use that makes them work for me and that makes a difference. Instead of the "cocktail" of the ibuprophen and the percaset together, I take the ibu before I leave for the hospital in the morning, then on the way home from the hospital the perc, which knocks me out. I get home and pump, then to bed for a nap. Up for dinner and then take the ibu before leaving for the hospital. Visit the kids and pump. Take the perc before leaving. I took it an hour ago and I'm surprised I can still see straight to type. I feel so tired, so this is good. In the event I wake up to pump and am in pain, I will take something, but not sure what. As it is, I wait until I feel the pain and then take the meds. I dont like drugs at all, especially narcotics, so this is as much as I feel comfortable giving into the meds. And today, while I've hurt, I've stayed above the curve of intense pain. I use ice packs at home and that helps ALOT. Dr B called me today and said that he reviewed the radiology strips and feels like the z-pack will take care of the infection, and to come in tomorrow after seeing the kids to have my staples removed. I'm hoping that the staples out will help with some of the pain, too.

I am overwhelmed by how much people love the babies. We've gotten so many cards and gifts from blog friends (and real friends and family members, too). I had so many emails asking for our address and if it is okay to send stuff. You guys are so sweet. The support we've received emotionally has been touching; but this is over the top. I dont even know what to say. Thank you seems too small. Our kitchen is full of boxes of handmade baby clothes, knitted preemie hats, blankets... Each one made with love. I am tearing up just writing this. Thank you. Thank you for the prayers and thoughts, which have brought us this far and have given us great days in our NICU journey. Thank you for these gifts which our children are grateful for and which we cherish. I dont know how to ever begin to repay you all for everything you've done for us, except to say that I hold you all in my heart, hold your babies in my heart, and pray prayers of thanksgiving for you. One day, I hope that I can somehow return your generosity in some way.

I'm really late in posting pics... I know. I'm sorry. :( I'm going to post them to the photo blog as soon as I post this. But I'll leave you with some pictures from today. (And yes, Maya's hair is strawberry blond... It is insane. But so beautiful.)

Bobby, sleeping and loving the lack of a mask and CPAP (and the ability to kick his legs over his boundaries!)

Maya, laying gently against Mommy's chest

A special thank you to ML, a friend I met right after losing Nicholas and Sophia, who joined her sweet Julia in heaven. In addition to some beautiful preemie knits she made with love (and which will be going to the hospital with me this week!), she sent these gorgeous name cards that I hung in their isolettes this morning.



Happy 19m Birthday, Sophia

3 comments
Happy Birthday, my sweet Sophia! My little princess... My oldest daughter.

Tonight, after your daddy made your special meal which we shared with Aunt Sarah, we went to the NICU to see your baby brother and sister. As I held your sister and looked into her eyes, I saw you there, a part of her, staring back... And, in the reflection of me, I saw you... And in that of your father, I saw you... You were there with us and we were able to celebrate you in a new way, with your siblings on the outside. Your daddy and I talked quite a bit about you today and how special you are, how you are our sweet girl. How much we love you.

Your grandma picked out lockets for a new necklace. She had one with your daddy and Uncle Robert and one for her and your grandpa. She had a necklace designed that had those two lockets plus three others: one for daddy and I, one for you guys, and one for Bobby and Maya. Your locket is so special. On the cover, she had 3 sets of footprints engraved, one for each of your miscarried siblings. Inside, there are 4 tabs: the first has a photo of Nicholas, the second a photo of you, the fourth a photo of Alexander. On the third tab, it lists your names and birthdays. I love the pictures she selected. You are all so beautiful. Today, Barbara, the NICU nurse, asked her about them, and she proudly opened each locket and explained the images. Opening yours, she told your birth story in the special way that only a grandmother can express, and Barbara commented on how beautiful you all were. It was a wonderful thing for a mother to overhear... Especially on her beautiful daughter's birthday.

Happy Birthday, my beautiful girl, my precious Sophia. Daddy and I love you so very much.

NICU Day 5

Tuesday, September 15, 2009

19 comments
The babies were once again beautiful and wonderful today... Some new details...

Bobby: The echo showed no issues with his heart. The valve that normally closes upon birth allows for a brief spurt every now and then, but the cardiologist felt this wasnt a huge deal and, after consulting with the docs, etc, they have decided no meds. It will fix itself. His brain scan showed no brain bleeds. He has been removed from CPAP. This may not last and they may give him a canula, but they wanted to see how he handles no pressure. Today, he did well. When we kangarooed, he was free and loved it! He is so much more relaxed in his isolette without the mask. His bilirubin has dropped, so his light has been changed to low intensity. However, he needs to have a bowel movement. His feedings arent going well, as he isnt digesting as he should. They tried a suppository but, as of today, this hasnt worked.

Maya: The echo showed no significant issues with the heart. The patant ductus arteriosis is open minimally. The doctor recommended treatment with neoprophen. A brain scan was conducted to make sure this is safe (since you cant do it with brain bleeds). The found one, very, very minor bleed. The CRNP told us that it was so minor that it isnt considered a problem and that babies with this type of low issue are considered on par with babies for whom no bleed is detected. So, she had her first dose today. Her CPAP has been dropped to 4, the lowest level. Her bilirubin came up just slightly so she is still under the high intensity light. She is tolerating her feedings very well and digesting most, if not all, of her food. They upped her to 6ml of breastmilk per feeding.

I am a pumping fiend... I feel like pumping is my life now. But it means that they are breastmilk only right now with food to spare! So that makes it all worth while.

The kangarooing was wonderful. I promise to post pictures. We just didnt get home until late and I dont feel well (see my post about my great c-section fun) and I just wasnt up for uploading yesterday or today's pics. Hopefully, tomorrow will be a better day for that!

Home-24 hours

18 comments
I am so frustrated... Well, it looks like I may have a mild infection from the c-section. While I realize this happens often and I should just take it as par for the course. I am just so tired. All I wanted was something normal and that just isnt meant to be. It is very upsetting.

I dont remember if I posted about this or not, and I'm too tired to check, so to recap... I've been sore since the section (which I assume everyone is). Last night, I sat down on the bed, preparing to get in, and, as I moved a pillow (or, better yet, when I touched the pillow... I never actually got a round to moving it), I felt a quick pain in my belly near the staples. Then, instantly, swelling. I freaked. Peter called APU and they said that swelling, etc can be completely normal. To make sure it wasnt changing colors and to follow up with the doctor. So, Peter checked and it wasnt red or bruised, so he got me some ice and, although I was now in a fair amount of pain, I fell asleep thanks to pain killers and ice. I woke up and pumped during the night and hurt, but nothing I felt I couldnt handle. Still swollen.

We went to the NICU and then down to APU, where I asked one of my favorite nurses who was on duty if she would mind looking at my staples. She looked and felt and said that it felt like there was something going on. She said possibly a hematoma or cellulitis. She recommended going over to see Dr Bailey, just to check. So, since we had time in between seeing Bobby and Maya, we went. Peter actually pushed me in a wheelchair because, by this time, I was starting to really hurt. The office was practically empty and the nurses all freaked when they saw us. They were super excited and we spent the first 15 minutes just sharing pictures and talking about the babies. I told our nurse about the pain and issue and she said that Dr B was in (in between surgeries) and could see me. So, into an exam room I went. I sent Peter back to the NICU because I didnt want us to miss baby time (diaper changing, feeding, that sort of thing). Dr B came in and felt around and looked and agreed with the APU nurse and said he wanted to do an ultrasound. So, I was moved there. He saw what he feels is the start of an infection. He prescribed a z-pack of azithromycin to knock it out. He also saw something he couldnt identify and was concerned about because it was so large and misshapen. So, he asked me to go over to radiology to have a radiologist look at it. The nurse made an appointment for me, so after Peter came back, we ended up there. I had to drink until my bladder was full (which is fun post pregnancy when you arent really sure when that is!) and then to the scan room. They had to push so hard that I was on the verge of tears. I used to consider myself a tough cookie, but my goodness... The tech apologized but it was excrutiating. The swelling got worse during the exam. The radiologist said that she couldnt tell exactly what it was and that a CAT scan would be the best way to see. She also said that she could see edema, cellulitis, and what Dr B had thought was the start of inflamed tissue. As she was scanning the unknown mass, Peter saw the telltale signs of cysts. It was my right ovary... Which has a nasty habit of getting huge (in this case 8x5x5) after pregnancy. We both remembered this after Nick & Sophia and Alex. The radiologist said that it was awfully large to be an ovary but after looking at it, conceded that since she found another large mass on the other side (with cysts) and couldnt see ovaries elsewhere. When she called Dr B, Dr M happened to be there too, and she confirmed with him that, when she was closing me up, my ovaries were huge. So, crisis averted and issue solved.

By the time that was said and done, we went back to the NICU so that I could pump, then we kangarooed, Peter with Maya and Bobby with me. I was in so much pain that I could barely walk. Peter got the car and brought it to me and, thank God, I fell asleep on the way home. He got me inside, doped up, and with ice, and that has made all the difference.

Sweet heaven... This cannot possibly be the dream experience people sign up for! Here's to hoping that the antibiotics clear up whatever this is and that we have no additional complications. This is definitely slowing down the recovery process.

Home...

16 comments
I will post a NICU update once I've been to the hospital.

I'm home. I cant believe that I am sitting in bed right now. I pumped around 4am and havent been able to go back to bed.

My belly still hurts but only mildly. I iced 3 times between last night and this morning. The swelling has decreased and it isnt red. But I'm still ticked that I "irritated" the staples when I'd been home less than a few hours. Ugh...

I'm home. Really. It's so painful to be here. I just want to be there.

NICU Day 4/ Day 54

Monday, September 14, 2009

12 comments
Two posts in one... I'll start with "my" post then move on to the NICU post...

Day 54

54 days in the hospital... 50 days in the hospital pre-birth and 4 after. I cant believe that I am now at home, sitting in my own bed... That I left the hospital again without my babies... That, instead of in the morgue, my children are resting comfortably in their NICU isolettes... (And I know that they are because we called and checked on them; I dont think I could do anything without knowing they were okay at night before bed).

Last night, as we left for the NICU, I noticed I had a new neighbor in the room that had been empty for several days. She was younger than me, black, pretty. She smiled at me as I looked in and walked by, and I smiled back as I waddled down the hall. A friend of hers (or possibly a sister, cousin, someone close in age) was sitting with her and they were joking together. She laughed. Peter and I talked about seeing the babies again and continued our walk towards the elevator.

As we walked back down, 2 hours later, the door was closed. I pumped about an hour later and then we went back for our next visit. The door was still closed. Perhaps she was in L&D? I'm not sure... It was quiet on our hall.

We came back down, after a relatively short visit. The babies were resting comfortably. We helped with their care (changing diapers, etc) and then walked back, on the high of touching them, singing to them, talking to them. We talked about their eyes opening and how they looked at us... How they would grab our fingers and not let go... How Maya loves her belly time and Bobby will struggle to get his feet out of his "boundaries"...

The door was closed. And there was a note. "Please see Nurse before entering. Thank you."

I know that note. Where we delivered Sophia and held Nicholas after he had died, there were no words, just a letter sized rose that said it all. But Lankenau is where we delivered Alexander. And that note was placed on our door. "Please see Nurse before entering." This woman's baby has died. I remember stopping and saying "Oh my God" and Peter looking at me with anguish in his eyes. He had told me about the note taped to our door after Alex; I'd never actually seen one. "That note looks like the one we had," he said. There werent really any other words.

Back in the safety of our room, I cried. I'd spent part of my day trying to convince myself that I hadnt failed the babies by delivering them early. That 28w was a good place... That they were fine and thriving... Reminding myself that there were worse things than premature babies; that I would have given anything to carry our older children to 28w. Hell, to 24w. I would have been thrilled. And now, all I could think of was the woman next to me, grieving. Destroyed. How her day had been fine before and now... Gone. All that gone. This is the second family that, in 7 weeks, I know delivered and buried their babies. That doesnt account for the ones I dont know... I'm sure there have been more in the hospital; it isnt as though they play a special song when a baby dies like they do when a baby is born. There is no announcement of "the club".

I woke in the middle of the night to screaming. In my dream, it was Bobby and Maya crying and I found myself instantly awake before realizing I was laying in my hospital bed and the screaming wasnt in my room. It was next door. My headboard is against hers, with only the wall between us. She was screaming. It died down into a wail... And then, into a sob... And finally, whimpering. The realization that your baby has died. That this isnt a nightmare you can wake up from. That your life is now the nightmare. I just laid there and cried with her until I fell back to sleep.

Peter decided to tell our favorite nurse to feel free to pass our info onto our neighbor, but by the time we came back from the pumping/NICU visit (where Peter held for the first time), the door was open and the bed was stripped. That note remained, but our neighbor was gone... Nurse K said that she would pass the message along to the patient... This woman left the hospital without her baby and she cant go back tomorrow to see them. I know that feeling. And because I know it, there is no news that can possibly be that bad. It mitigates the NICU rollercoaster in a lot of ways. There are worst things than CPAPs and bradycardia episodes and fetal echocardiograms... Your baby could be dead.

Dr Bailey came by this morning and saw us. We went over the birth story and he was just as lost for words as everyone else. He said that he'd certainly review the pathology report when it came in, but that, outwardly, I had no signs of infection and he would have expected something... a rise in temp, pain, anything. But the 0-60 labor in an hour... That wasnt something he would have forseen either. And, because he is so sweet, he said that he wouldnt discharge us until the evening. "Enjoy your babies without having to worry about leaving and coming back tonight," he'd said. We both really appreciated that. With still trying to deal with the drugs and pumping, etc., having that extra day with a room to come back to and rest in was wonderful. In fact, after our 11am/12pm visit, I came back and pumped at 1pm, then took a nap from 2pm-5pm because I felt so bad. I missed the 2pm/3pm visit (Maya is now an hour ahead of Bobby instead of behind) and was late in pumping. (My pumping is getting so much better! There is now enough that they dont need my immediate pumping for feeds. They have some surplus. YAY! I'm now in the largest syringes!)

Dr. B. returned while I was pumping. He was going to go up and see the twins afterwards, but was coming to discuss discharge. Showering, walking, no sex, no driving... The standard. He told me to pop by the office on Wednesday or Thursday after I've been to the NICU and he will remove my staples, no appointment needed. To make my postnatal for 6 weeks from Sept 10th. That the nurses are all excited to see me and to remember to bring pictures because they are excited to see the babies. He answered our questions about what to look for, in terms of c-section issues and what to do with a subsequent pregnancy. He doesnt recommend the TAC, especially if we cant figure out why I went into labor this time. He said that he's seen women look have a "textbook uterus" but really have something that causes preterm deliveries. That it could simply be I cant carry a twin pregnancy beyond 28w but would be fine with a singleton up to around 34w, but that, at this point, we dont know. That a Shirodkar with a singleton wouldnt require the bedrest I was on so early and that he estimates the more 2 hours up/1 hour off that we had discussed previously when we thought we may only be pregnant with one baby. He recommended that, when we do decide to try again, that we only trigger one follicle. It would take a lot longer to plan out, but he would like to see us not have multiples again. He is afraid that I would never get farther along. These are all things to consider, but right now, seeing Dr Lee for pregnancy isnt on our radar. We have to figure everything else out first... Like getting our babies home from the NICU and relaxing into life with them at home... Then we can discuss another pregnancy... If that is even in our future. Perhaps we will adopt our next child. We arent sure yet. These things will present themselves when they do. But I digress... We were given our discharge paperwork at 6pm. I finished pumping and Peter took the milk upstairs. We finished packing up and he stocked the car. We said good-bye to our nurses. We took the final look around "our" room, which now looked empty... Like a stock hospital room... And then we took our last walk as patients up to the NICU.

We went by our local pharmacy when we got home and then, once I was in bed, I pumped. Afterwards, as I was getting ready for bed, I turned to move a pillow and PAIN. Of course. This doesnt happen in the hospital, but it happens at home. Instantly, I felt the area around my staples swell. The pain was like turning an ankle: sharp at the moment of impact but dull after. Peter helped me lay down and he looked at the scar. Yep... Swelling... Especially around a couple of stitches. I freaked out. He called APU and explained what happened, and the nurse told him it was normal. To ice the swelling and to give me ibuprophen... That it happened when the staples were irritated and turning probably did that, but to not worry about ripping my uterus stitches. Of course, I was such a mess that poor Peter also had to consult Dr Google (twice) before I could calm down enough to sleep. So, we iced and that made some of it feel better. Then I went to the bathroom (with help and man, did it hurt to sit up) and I'm on ice now. I'm going to bed soon. We will see what tomorrow shows...



NICU Day 4

The babies are 4 days old... I cant believe it. Today, Peter told me numerous times that it was "his turn". He's been so excited to kangaroo the babies. We went upstairs and they were both perfectly resting. We made it up at 11am, where their nurse was already working with Maya, cleaning her, checking IVs, changing her diaper. Peter changed from his shirt into the open robe and sat in the recliner that the nurse already had ready by Maya's isolette. He waited patiently (well, as patiently as he could) for the nurse to put his daughter in his arms. I will update this post with pics tomorrow, but for now, my phone is out of reach and those are where my pics are. Also, you can check out the baby blog later tomorrow and see the full pictures. Maya cried slightly when the nurse removed her and placed her safely on Daddy's chest. She settled into him and whined a little until her fingers found his chest hair. She wrapped her little hands up in the thick pillow and wouldnt let go. I couldnt even get a finger grab! She was perfectly content. He sang to her and talked to her. She would play with the hair from time to time, but mostly just napped against her daddy, fingers entertwined... I watched in awe at the beautiful image they presented. Clearly on the inside, but clearly on the outside... It was beautiful.

I went to Bobby when it was time for his care, while Peter continued holding Maya. I changed his diaper and he just watched me. His CPAP was off for the entire time the nurse and I did his care. He held onto part of his diaper so that I had to struggle to close one side. :) That's my boy... Wants his nakedness! I held his sweet little head with that soft, dark hair between my fingers. It was beautiful... I loved it. I heard the NICU doctor talking to Peter and, once Maya was returned to her isolette, he came over and we chatted while he waited to hold Bobby. (More on that momentarily). When Bobby was placed in his arms (with his CPAP returned, just to be safe), again... Such a beautiful image... Again, a lover of chest hair. Bobby watched him for a while before falling asleep, safe in his father's arms. I just watched... It was such a quick hour (as was Maya's). I loved watching, almost as much as holding. I had to leave before Bobby was returned to his isolette so that I could pump.

The doctor spoke with Peter after listening to the babies' hearts. He heard what he thought was a small murmur on Maya. A neonatal cardiologist was coming from Dupont (where Dr Bott came from) to do echo's on both babies. The doctor didnt feel it was a huge issue because the murmur was barely detectable, but better safe than sorry. They also wanted to evaluate if there was a reason why Bobby was having momentary issues with his heart dropping them returning to normal.

The echo was done during the time I was asleep. Peter had asked the NICU to call before hand so that he could be present. He loved Dr A, the cardiologist. He brought back a detailed description of what happened and was impressed with the doctor's interactions with both our children. He also was happy with the way the doctor treated him.

Bobby: He said that his heart looked perfect. There was a very, very minor issue with a duct sort-of closing but not completely. I forget the name of this, but is the duct that connects the two portions of the heart that normally closes upon birth. Bobby's looks mostly closed. He said that it is such a mild issue that treatment doesnt "need" to occur, however, since we are in the 2 week window when some neoprophen (baby advil basically) can help, there is no harm in doing so. But, overall, an outstanding report.

Maya: He said that her heart looked perfect. Again, she had a very minor issue with a different duct, this one that is by the heart-lung connection and was what the doctor heard. He said that there are three classifications: minor, moderate, and serious. Minor is something they can barely see but not hear, moderate covers hearing and seeing, and serious is, well, a real problem. Technically, Maya's is classified as moderate because the NICU doctor heard it and he could see it, but he said it measures the lowest they can measure and that he would consider it minor. Again, as with Bobby, he said he'd treat it with the neoprophen and that it should cause no issues. Overall, a great report.

They will be doing brain ultrasounds to check for bleeding on the brain since that would impact being able to give the baby advil. It was supposed to happen today but as of our evening phone call, it hadnt, so perhaps tomorrow. They also checked their platelets. Maya's looked good but Bobby's are a tad low. So, they will treat that before giving him the advil.

The nurses and doctors tell us the babies are doing well. We couldnt be happier. If these are the downs of the rollercoaster right now, then, in comparison to the downs we've experienced, these are much better than the alternative.

Our last visit today was heartbreaking. The babies were doing so well. They were sleeping and peaceful. We couldnt reach in to touch them to say goodbye. We just watched them and said our "I love you"s through the plastic. It hurt... So much... To walk down that hallway and to know that I wouldnt be an elevator ride away. Oh God... I had no idea it would be so painful. I hadnt been able to think about it. I made it to the elevator before crying. We got to the car and I was okay for most of the ride home. We talked about them and that helped. But it still hurt. It hurts now as I am at home. It hurt when Peter called the NICU to check on them and I wanted to be there to kiss them goodnight.

But they are safe. They are 4 days old and safe. That is all that I can ask for right now...