Monday, August 31, 2009
Charlie’s nurse Andrew told Brooke that she could try Charlie with his bottle if he was awake when his 9:00 feeding time came. And sure enough, he was awake, so Brooke sat down with him, bottle in hand. She expected to have the same result that the nurses had on previous occasions, but was surprised when Charlie started sucking away. He would take some milk, swallow it with a little full-body spasm, and then take some more. In all, he ate 12 of his 30 mls with the bottle. It doesn’t sound like much, but this was a big milestone for our little chunk!
As for Miss Lily, she had a big weight gain and jumped from 1700 grams yesterday to 1755 today (3 lbs, 14 oz). And because of all the care Brooke gave her the last two days, Lily was able to have a nice sponge bath courtesy of her loving mommy, who flew solo the entire time. Having Nurse Amelia push us those two days to do more with Lily has really paid off because we’re so much more comfortable now when we get to do things with her. After her sponge bath, Brooke picked her up for no reason other than to hug her and then she dressed The Bug in her little cupcake onesie. And after her evening cuddle, I put her back into her isolette all by myself and even turned her onto her belly. Thanks for making us do all that Nurse Amelia!
Thus ends my final post of the “summer.” Tomorrow, I go back to school. This means that I won’t be able to spend all my time with Lily and Charlie, and that is going to take some getting used to. I’m also worried about having to face people who aren’t going to know what to say to me about Annaleigh. Hell, I don’t know what to say to me! It’s going to be especially awkward when the kids start asking me about the babies because every kid in school knows me as “the guy who’s having triplets.” I’m not really sure how I’m going to handle this. I have a feeling that the only thing that will get me through each day is knowing that I’ll get to see my beautiful wife, my gorgeous daughter, and my cute-as-can-be son at the end of every day.
Sunday, August 30, 2009
And the shock of all shocks: he didn’t hate it! We were told that most boys hate their first bathtub experience but Charlie’s reaction was more shocked than anything else. Carolyn lowered him into the tub and by the time his legs and his butt were submerged he had his arms out to his sides and a confused look in his eyes—and he stayed just like that without moving for about three full minutes! He had no idea what was happening!
Carolyn added an extra touch to the bath. She filled the tub with warm water and then added a little soap. She then ran a tube from the oxygen pump into the water so the bath got very bubbly, just like a hot tub! I don’t know how Charlie felt, but we both thought it looked very relaxing.
Just like with Lily, Brooke got to help soap Charlie up and rinse him off. We each got the chance to prop him up and rub his back and give him lots of kisses. I can’t put into words how nice it is to feel our babies flesh like that and be able to do these “normal” parental things with them. It makes us almost able to forget how tiny they still are.
Not to be outdone, Lily’s nurse Amelia decided that we would handle her bath time tonight. Since she just had a full bath yesterday, today was more of a sponge bath, which is more normal. This sort of bath is usually done while still in the isolette, but Amelia brought Lily out and put her on a normal bed under a heating lamp. This enabled us to more freely access The Bug.
And once again, Lil’ put on a show for us. This time I got to pat her down with the wash cloths and rub lotion all over her body. My parents got to see her performance and were quite excited to see tonight’s Lily Show.
What’s been extra nice for us these last two days has been how much we’ve handled Lily and Charlie ourselves. Amelia showed us where to hold Lily and how to pick her up and cuddle her and then we did it ourselves. And we lifted and moved Charlie during his bath time and while cuddling him. We’re by no means independent, but we’re slowly learning how to do more of their care on our own. This is something that’s especially important for us to do because I’ve realized lately how timid we’ve been about lifting them and handling them without supervision.
Dr. Hiatt talked to us briefly today both a couple big steps for Charlie. First, he’s going to be starting a course of diuretics tomorrow. The idea is that, for whatever reason, diuretics can help lung development and help a baby ween off the nasal cannula. He’ll either be able to take the next step in his breathing by changing from the high-humidity nasal cannula or he’ll be able to breathe without the help of a nasal cannula at all. Annaleigh went right from the HHNC to room air so there’s a chance Charlie can do the same.
The second big step for Charlie is his bottle-feeding. Charlie’s nurse Sue (she’s sort of the tough big sister of the nursing staff) decided to try him on the bottle a few nights back. He took a mouthful of milk and then sat there with it in his mouth until Sue rubbed his throat and he swallowed it, thus showing that he wasn’t ready. Dr. Hiatt decided that he can start trying the bottle more regularly sometime this week. It will be a slow process once it starts though; they will give him one feeding each day with the bottle until he gets the hang of it, which could take a while. But the thought of Charlie taking a bottle is really, really exciting for us. We can’t wait to be able to feed one of our babies!
Tomorrow will be a bittersweet day at the NICU. I’ve been very fortunate in that the babies were born two days after school let out, so I’ve had the last two months to spend all my time with them. (Let me add an addendum to this and note that I would obviously rather the babies still be happily in the womb right now—they’d be 35 weeks tomorrow—but since that didn’t happen, at least I’ve been off from work for all this time.) School starts up again for me on Tuesday, so tomorrow will be the last time I’ll be able to visit in the morning and again at night. I’m going to enjoy the day and get in some extra cuddling. With a little bit of luck, this reduced visitation schedule will only last for a few weeks because the babies will be home!
Charlie and his girlfriend Carolyn as she brings him to his bath tub
This is how Charlie sat for about three full minutes as he was trying to figure out what was happening. We all spent that time laughing uncontrollably.
Seriously, could he look any happier? He's got two women giving him a bath. 'Nuff said.
After his bath, Brooke dressed Charlie in his "I'm Bananas Over Mommy" outfit. She just loves it and I think he does too.
Lily doesn't know why we keep bothering her.
My dad took this picture and I nearly cried when I saw it. It was so nice to be able to hold her and feel her warm baby skin against mine, but when I saw this pic and saw that she seemed happy... well, I like it.
Lily seems somewhat board with all of us admiring her. We stare at her lovingly and are fascinating by every movement she makes; she yawns at us.
Saturday, August 29, 2009
Lily got a bath! Not a gentle sponge bath while still in her isolette, but a legit in a tub bath! What an absolutely perfect cure for sadness! Her nurse Amelia, who was actually Lily's first nurse on the night she was born, decided it was time to give her a real bath. She got a small tub and filled it with warm water and slowly lowered the Bug into it. We had no inkling that she would like it, but she actually seemed to enjoy it.
Amelia held Lily's head up and lowered her body into the water up to her waist. Brooke soaped up Lily and gently washed her down. Lily splashed around and looked confused. I took pictures and laughed with glee. It was the most adorably thing I've ever seen! After a few minutes, Amelia lifted her out of the water and Brooke shampooed her hair. After a gentle towel drying, Brooke spread lotion all over Lily's back, arms, and legs.
Both of us got to hold Lily while she was completely naked. Getting the chance to feel that close with her was just beyond words great. And not only was she without any clothes but she was also without her feeding tube and her breathing tubes. She was breathing completely on her own for about 10 minutes during the whole bath. And when she was hooked back up to the monitors, the numbers showed that she was doing great!
Charlie had a milestone of his own today too. While he was out for a snuggle in my arms, he was fussing around with his hands and managed to put his thumb in his mouth. After a brief bit of confusion, he started sucking away like a champ! Charlie sucked his thumb! And after a few minutes, he accidentally took it out of his month and got very upset. He started to silently cry and he thrust his arms around. He didn't calm down until I gave him his pacifier, which he happily sucked for the whole time he was out.
It was just a fantastic visit. We both just laughed so hard watching Lily's bath and Charlie's thumb-sucking. Once again, the babies were able to give us a much-needed break from our sadness.
In another note, we haven't yet posted about the memorial service that the NICU staff held for Annaleigh. Sister Mary Jane, the St. Peters chaplain, organized everything. It was held at 7 am between nurse shifts so both the day and night nurses could attend. Sister Mary Jane made up little memory cards for her out of scrap booking materials; they had typed out quotes about love and loss on them. Plus, each card had a little purple butterfly and some colorful gems glued on them. She gave a very nice eulogy and a few of the nurses read some Bible verses. We watched the tribute video I made and said a few prayers and then everyone hugged us. It was perfect. We would have loved Sister Mary Jane to preside over her funeral services but unfortunately she was away and couldn't be there. But it was a very nice service and we were touched by all the nurses who showed up. Once again, the staff of the NICU showed us just how amazing they are. We really, truly are blessed to have found such an amazing place to take care of our babies.
Charlie loves his thumb!
My two best girls, happy as can be.
I cannot even begin to tell you how great this felt. I want to do it every day!!!
Lily got a grip on Brooke's hair and just wouldn't let go!
She looks like she was actually enjoying herself. We were told to expect them to fuss and be scared during their first bath, but the Bug seemed content to be messaged and pampered. It was her own spa treatment!
When it was all over, she was just so stunned by everything that she laid there and looked up at us as if to ask "what just happened to Lily?"
Afterwards, we had to make sure Lily was nice and warm, so I held her in my arms for body heat and we covered her in a couple blankets. We were so, so happy from the bath time fun!
Friday, August 28, 2009
Charlie had some major gas that night. While I was holding him, my hand was on his butt to keep him propped up, so I could feel every little burst. So when he took his hand and covered his nose, it was as though he was trying to mask the smells!
Lily just after her bath. Her nurse wrapped her up to keep her warm while she was being moved to the scale for weighing. How beautiful is the Bug???
Dad gum he's a cutie. When did he get so handsome???
Charlie was wide awake that night and he couldn't have been more curious about things. He looked at me like an old man who recognizes a face but couldn't place it.
Lily out of the scale getting weighed. She grabbed a finger on each of my hands and pulled me down towards her-- that felt great! And then Brooke came over and the instant Lil' heard her mommy's voice she let go of me and started searching around for Brooke. Quite possibly the most adorable thing this cynic has ever seen.
My brother John's better half Rebecca took this one of us with Charlie. It came out really well because we were so happy to be there and Charlie was being so great that night.
Thursday, August 27, 2009
Charlie kicked off his birthday early this morning with his first attempt at bottle feeding. According to his nurse, Charlie got in two good sucks before he realized that there was actually something coming out of the nipple. He held the milk in his mouth with big wide eyes and sputtered in confusion. He swallowed after his nurse massaged his throat, but he let the second sip dribble out of his mouth. That was the end of Charlie’s foray into feeding. This is pretty much normal behavior for a preemie’s first bottle feeding attempt, though, and the nurses will keep trying him with the bottle until he catches on. It’s exciting that he even got to try, and we’re confident he’ll catch on soon.
Lily began her day with some progress in the breathing department. The doctors declared that she was ready to begin weaning off the CPAP, so she will now be alternating between the CPAP and nasal cannula for four hours at a time. This method worked well for Charlie in helping him get off the CPAP so we’re hoping it does the same for Lily. Lily’s day ended with a bath from mommy! Lily’s wonderful nurse Alicia supervised me as I sponge-bathed the Bug. Oh how mad baths make Lily! But I had a fantastic time scrubbing her down. After her bath she came out to get weighed and amused us by rolling around on the scale and punching Daddy in the eye when he leaned down for a kiss. She gets her right hook from Mommy and Billy Blanks. Alicia then instructed Joe to pick up Lily and carry her back to the isolette. Joe got a fantastic quick snuggle with Lily sans blankets and breathing apparatus. She was even wearing her “Daddy Loves Me” onesie – so appropriate!
So Charlie and Lily had a nice 2 month birthday! Being with them makes Joe and me so happy and just makes us feel better – we would spend all our time in the NICU if we could!
Tomorrow will a slightly more difficult day. We’ll begin up at the NICU for a memorial service being held for Annaleigh. We are honored that the NICU staff is choosing to celebrate our little girl like that and we know it will be a nice way to remember her. After that we need to sign some papers at the cemetery and choose a headstone for our baby. Not pleasant tasks, but all we can do now to continue to take care of our precious Annaleigh. We take comfort in the fact that Charlie and Lily will be there waiting for us when we’re done, ready to make us smile again.
Charlie has the "sucking" thing down (note the pacifier) but the whole "suck/swallow/breathe" thing is a bit much for him.
Brooke was pretty thrilled to give Lily her bath today. Lily... not so much.
This shirt is not just for show. It states the complete and utter truth.Lily's birthday sign is so pretty (just like her). Her nurse Julia did a great job on it!
Wednesday, August 26, 2009
We buried her with:
-her monkey (we called her "the monkey" and it had sentimental value to us)
-a copy of Personal Penguin by Sandra Boynton
-photos of each of us holding her
-photos of Lily and Charlie
-100+ pages of printed out comments from this blog
-her "Princess Annaleigh" blanket
Her tiny pink casket was stuffed full of things that would make her happy. We wanted to make sure that she had everything she would need to know she was loved.
The services were exactly what we hoped for. We were touched by the turnout, especially by the fact that so many nurses from the NICU came. What was so amazing was that some of the nurses never even took care of Annaleigh but rather Charlie or Lily; they still felt compelled to be there for us.
Our memorial lasted about 45 minutes. First, my sweet cousin Kim read a poem that she wrote, which you can read here. Then I gave a eulogy, which I somewhat read and somewhat improvised. Then we watched a brief video tribute we made, which you can watch here. In all, it was a fitting ceremony.
Brooke and I went up to St. Peters immediately after leaving the cemetery so we could spend the rest of the day and evening with Lily and Charlie. In my thirty years on this planet, I'm 100% sure that this was the smartest thing I've ever done.
Both babies were perfect. They were cuddly and active and happy. Lily put on another fine performance of "The Lily Show" while she was getting her bath and being weighed, and Charlie was wide awake and active, more so than I think I've ever seen him. It was the only possible remedy for our sadness.
We also had many NICU visitors today as well. Brooke's mom, Nana, Aunt Jill, Uncle John, Uncle John's much better half Rebecca, my mom and my dad all came to see Charlie and Lily. It was important for them to come, I think, because we wanted everyone to see that Annaleigh's funeral was not the end of the babies. There are still two beautiful, sweet babies that will need them and love them. The funeral was hard on everyone but these visits helped us all be happy.
Brooke and I both feel very at peace tonight. Our hearts ache as I'm sure they will for a long time. But the utter sickness we've been consumed by has passed. Today gave us both closure and perspective. We know that Annaleigh will always be there with us and our memories of our time with her will give us both joy and sadness. But we also know that Charlie and Lily need us to be their mommy and daddy; they will need us to be loving and caring and dependable and strong, and we know that we have to push aside our grief to be all of these things for them. We will grieve, in our own time and our own way, but we will also celebrate every single second that we have with them.
Thank you all for being here with us through this roller coaster journey.
Eight weeks is too short a time to live a complete life. That goes without saying. Eight weeks isn’t long enough to do much more than sleep, eat, poop, cry, and occasionally cuddle. Eight weeks of life isn’t long enough to do much else. Except one thing: in eight weeks, you can fall hopelessly, completely, and eternally in love.
We went to the Rainforest Café a few weeks back and Brooke and I sat at a big round family-sized table. We spent most of the dinner talking about how great it will be when we can take our three babies there to see the tropical fish and the animatronic monkeys and the fake thunderstorms. We even had a seating chart made up to decide who would sit where. The picture we created had Lily throwing food at Charlie, Charlie getting mad and crying on his mommy’s lap, and Annaleigh trying to be the peace-maker between the two. It made us so excited to think of that simple family dinner and about how fun it will be to see them experience something like that.
In our visions of their futures, Charlie is the mama’s boy. He is cute and cuddly but a bit on the lazy side. He gets picked on a lot by Lily, who is the boss and rules with an iron fist. She is demanding and spoiled rotten, but in a cute and lovable way. Annaleigh is the logical one, the strong one who manages to tolerate her sister’s abuse and her brother’s timidity. We’re not sure how they developed these personalities but Brooke and I talk about it like it’s a done deal, as though we already know the people they will become.
Obviously we don’t know everything about their futures.
I know that I’ve always wanted my very own Annaleigh. When I was in high school, one of my favorite CDs was from an obscure band called Sonia Dada, and the best song on that CD was called “Annalee.” I listened to it a lot and made the determination that someday I would have a daughter and I would name her Annalee. I just thought it was so pretty, a perfect name for a cute little daddy’s girl. Brooke was never too keen on the name until she realized that she could spell it ANNALEIGH and the suddenly she loved it. Of course, it didn’t hurt that we were blessed with three babies of our own to give names to. But I have always wanted her, my own little Annaleigh.
And I had her, but just for eight weeks. Eight weeks was not enough time to know someone so special. That’s crazy, you’ll think (but never say, because who would contradict a grieving father?). A baby that young doesn’t have a personality so how could she be so special? You couldn’t be more wrong to think that. She was special.
First, she came out crying, despite the fact that her lungs should have been tiny and undeveloped. And her lungs apparently were so strong that she could breathe without a respirator, which is almost unheard of for a baby born 15 week too early weighing only a pound-and-a-half.
Second, she was strong. How could you know that she was strong? You ask. She was strong because that little fighter had surgery when she was four weeks old and a week later there was hardly a scar to show for it. Plus, in the days before she was diagnosed with NEC, she was breathing nothing but room air like you and me. By comparison, Charlie and Lily will be on their breathing help in one form or another for another month at least.
Third, she was beautiful. I know that every parent thinks his kid is beautiful and I know that I’ve seen some ugly kids so the math doesn’t work quite right. But Annaleigh was beautiful. She didn’t open her eyes until she was three weeks old, but when she did—that was it: she was gorgeous. There are two moments between Brooke and Annaleigh that I will never forget as long as I live. The first was how Annaleigh looked like she smiled on the night she was born when Brooke went to see her for the first time. The second was right after their one-month birthday. Annaleigh was a few days out of her first surgery and was acting like a completely renewed spirit. She was energetic and happy and obviously feeling better than she had before. We arrived at the NICU and Brooke greeted Lily first and I went to Annaleigh first. I saw that she was awake so I grabbed Brooke, who had not seen the babies in a couple of days because she had been sick. She took one look at Annaleigh and half-laughed half-cried “Oh my god she’s so beautiful!” She was so shocked by Annaleigh’s beauty because it was the first time she was really, truly alert for us. But Brooke stood there and gazed at our daughter with tears running down her face—if you know Brooke, you know she is not a crier, so this was particularly striking for me.
But that was the effect that Annaleigh had on people. She could open her eyes and look directly at your face and it was as though she could see past all the masks we put up and the get right into your heart. I don’t know how she did it and I logically know she couldn’t even see more than a few inches from her face with any clarity, but she managed to look at me and know me completely.
And that is a comfort to us right now, to know that she knew us. Of the many things that I find so terribly tragic and sad about this is that there are only a small handful of you in this room that could see her and know her personally. That was simply a consequence of being in Intensive Care—limited visitors. If she were a normal baby, she would have been home and had many adoring visitors and all of you in this room would have met her before she passed. But as it stands, I can count her visitors on my fingers. I know that people loved her—you all and the readers of our unbelievably read blog have shown us that—but we wish you could have let her look into your faces to see you the way she saw us.
One great comfort to us has been that we know how much she was loved by the people around her in the NICU. Nurse Marissa loved her so much that she came to the hospital as soon as she found out that Annaleigh was sick, and then she came back the next night right after she died. Marissa had taken time off to be with her own daughter but she still felt compelled to be with us and with Annaleigh during those final hours. Nurse Tina knew Annaleigh so well that she was able to see that something was wrong by just looking at her as soon as her shift started on that Friday morning. Within minutes, Tina had started the process that led to her diagnosis. Nurse Alicia had only recently started caring for Annaleigh and had just the night before taught Brooke how to give our babies their baths, and she had promised to teach a lesson on nose-cleaning the next night. Alicia stood with us on the night that she died and just sobbed with us. Nurse Cathy was the most protective of the staff, always making sure that we handled Annaleigh carefully and gently, just like any good mother would do. And poor, poor Nurse Jane had only cared for our babies a handful of times because of scheduling conflicts, but she was the one who cared for Annaleigh on that last day. She was calm and helpful and clearly affected by what was happening in a way that was more than just a job.
These women and many others cared for our sweet Annaleigh as though she were theirs. These women were her family at a time when we couldn’t be with her around the clock. These women loved our daughter and gave her a home. It is hard to lose a child, but it is made slightly less hard knowing that our baby did not spend her eight weeks of life in a cold, sterile hospital room, but rather a place where she was so clearly a part of a family.
Eight weeks of life is just too short. It makes me think about what the point of life is at all. That’s a hard question to think about when you’re of clear and sound mind, but to think about it at a time like this is just unfair. But I think I’ve come up with an answer to that question anyway. The way I see it, there are three points to life:
1. To love and be loved.
2. To prove you can make it on your own.
3. To have babies of your own.
The first two are clear. Annaleigh was loved, perhaps more than even I know. Judging by the people here and at the hospital and the following on our blog, Annaleigh was more loved than anyone else I’ve ever met.
I also think that in a small way she proved that she could make it on her own. She was dealt an unfair hand, to say the least. But if you look at her medically and take away the disease that took her life, you can see that she was breathing on her own with no help from anyone but herself. She was about to start eating on her own (within days, actually). So for as much as any baby born so small could possibly do it, she was able to do some things on her own that most others in her situation could not.
And I think in a very important way, Annaleigh does have babies of her own in Lily and Charlie. None of us will be able to look at them, perhaps for the rest of their lives, without seeing a piece of her in them. I’m not sure I believe in guardian angels or spirits or any of that, but as hypocritical as it sounds I believe that she is watching out for them and helping them as they go on with their lives. The night she died, Brooke and I held Lily and Charlie and told them what had happened, and told them to make sure that they listened to that little voice in their heads that wasn’t there before. That voice will take care of them, we said, and make sure that they’re on the right path. That voice, we told them, was their sister, who loved them very very much and would always be with them.
So in her own way, Annaleigh managed to live a full and successful life. It may have been only eight weeks long and it may have been full of struggle and confusion, but it was also full of love. And that love does not end with her death, it does not die with her.
Baby girl, you will always be with us.
June twenty-seventh two thousand nine,
Mommy and Daddy’s anniversary was chugging along just fine.
Suddenly there wasn’t a dry eye to be found,
Three beautiful babies joined us, one making a sound.
The first tiny girl defied every odd,
The middle princess of the tripod.
Her lungs couldn’t be developed, it’s impossible they said,
But everyone heard her enter the world, even Grandpa Fred.
“Baby B” was breathtaking from the beginning, turning every head,
Annaleigh Lucy, an angel name for the baby in the NICU bed.
Soon there were visitors to see these three miracle gifts,
From Uncle John and Aunt Jill, to adoring nurses with long shifts!
Then the clever idea of capturing stunning photos started,
Everything was documented, especially when the babies pooped and farted!
The teeny tiny gifts were clearly receiving presents of their own,
From excellent care, to a family who expelled only graciousness as their tone.
Soon a few scares came about,
But there was never, ever a love drought!
From great aunts and cousins,
To grandparents and friends by the dozens!
At first the strongest, Annaleigh
Found herself in minor tummy surgery!
Then big brother Charlie got sick and had to stay away,
But it was best for him, he got even more sleep all day!
Little sister Lily, glamorous indeed,
Soon began to pack on the pounds, and enjoy every feed!
No matter what, she always put on a show,
Mommy and Daddy laughed, and Annaleigh enjoyed it too you know.
Eight weeks of an immeasurable roller coaster ride,
Sometimes scary, but on love, faith and hope is what we relied.
The baby girl we all grew to adore,
Was soon called back up to heaven once more.
She was too perfect, too precious, it was fate;
Her great-grandfathers were waiting for our angel at the gate.
That rainy August night, as God cried,
Pain was felt everywhere, it was worldwide.
The outpouring of support and prayers was so great,
For some the comfort was enough to sedate.
As the most beautiful angels lead her in,
Mommy and Daddy kissed her perfect porcelain skin.
In those last minutes a special picture was taken,
But that moment of all five together can only be felt within, don’t be mistaken.
A love too powerful for words to emit,
Your entire family will forever treasure you, down to every last bit.
Even if our gorgeous angel baby is out of sight,
She will always, always be here with us, our guiding light.
So if you feel sad, alone, confused, or teary eyed,
Look up to the sky, and Annaleigh Lucy will be by your side.
Brooke wrote this. I think it's beautiful.
Tuesday, August 25, 2009
We go back and forth about Charlie's hair color. His eyebrows are completely blonde-- so much so that you can't see them unless you're looking for them. But his hair is darker on top of his head. I guess it's still up in the air about which way he'll go.
Charlie and I had such a great cuddle this evening. His head is so soft and baby-smelly. It's good stuff.
Charlie can suck on his pacifier for a few minutes at a time. He still gets a little to distracted by it and forgets to breathe, so we have to limit his binky time. Both his nurses today told us that he has a "good suck." I'm so proud.
Lily was quite interested in watching her mommy today, and sometimes she even likes to look at me. But we're quite sure that once she discovers mirrors she'll be most fascinated watching herself. She's very pretty!
Lily was being Lily today but she wan't cooperative at all when it came time to take out the camera. She would open her eyes nice and big and make smily faces, but then as soon as I pointed the camera she would close her eyes and stick out her tongue. Just like a bratty twelve-year-old!
Monday, August 24, 2009
Lily has been really puffy lately due to low sodium levels. She's getting extra sodium and has actually looked better today then the last two days. Her cheeks were really big but today they are almost back to their normal size (which is still quite thick). Her eyes remained a bit big today and we've been telling her she looks like a frog. She does NOT like that at all. Hopefully she'll be back to normal soon.
Charlie and Lily both seem to know that we need them right now. They've been extra good for us when we've held them (which is a lot). Today we held them more on our chests and nestled under our necks-- that's really nice. The feeling of their tiny heads under our chins is wonderful.
It's easier to be with them than not. We can focus on them and love them and take care of them. When we're not there, we're sad and missing Annaleigh. We've been working on finishing up funeral plans and we went to the cemetery today and saw her plot. It was quiet and pretty and we're sure she would like it. A number of Brooke's relatives will be with her and my grandfather isn't too far away and that's a comforting thought.
Two days down. We're going day by day, trying not to look farther into the future than today. It's easier to focus on what we're doing right now, today, than to worry about what's going to happen when.... Thinking too far ahead is too hard, too sad, too heart-breaking. We can control today so that is all we're trying to do.
Lots of wonderful blog comments, facebook messages, emails, texts, etc. We try to draw strength from all of you. So thank you (again). You have made a difference.
This new baby-holding position is quite wonderful. It's definitely Bug Approved.
This may just be my favorite picture. Both Charlie and Brooke look like they could happily snuggle with each other forever.
Sunday, August 23, 2009
Sometime around the middle of the spring, we realized we had more readers than just the few expected family and friends. I guess it was the drama of all the hospital visits, surgeries, and scary moments that drew people in. Around that time, Brooke started sending me links to various multiples blogs, which I read with great interest (especially The Hughes Triplets blog, which I poured over every day during our pregnancy and am still fascinated by). But I started to notice that the difference between those blogs and ours was that we were getting comments from total strangers. I know that’s such a silly thing, but in the world of blogs, getting a comment is very exciting (trust me: I kept a poetry blog for the better part of a year and if I got one comment for every ten posts I was beyond thrilled).
Brooke and I have been overwhelmed by the outpouring of love and support that we’ve gotten from readers of this blog. We really didn’t know that our little family’s story had spread across the country and even abroad (Germany? Australia? Really???). I honestly don’t know why so many people care. Let’s face it: we live in a cruel world where every day we see that most people just don’t give a damn about anyone but themselves. But this blog seems to be an example of just the opposite. People care. People care about complete strangers that they’ve never met and never will meet. That you’ve chosen to become a part of our story is something Brooke and I will be grateful for for the rest of our lives. We’ll never be able to repay the kindness we’ve been shown, so instead we will do our best to make sure our children feel all of the love that you have all shown to us.
On that note, we are trying our best to make arrangements for a fitting farewell to our beautiful little Annaleigh. We’re going to have a small, private funeral for her on Wednesday. We both feel that something private is more appropriate for her, and we don’t think that we can emotionally handle a large crowd right now. But we also want her to feel the love that has been given to her from all of you, and so we are going to be printing out every single one of the comments from the last few posts to place with her in her tiny pink and white casket. We want her to take that love with her to wherever she has gone to.
We’re asking that anyone who feels so inclined to make a donation to the St. Peter’s charity. Anyone who has been following our story since before the babies were born knows that we 100% credit the doctors and nurses at St. Peters University Hospital for saving their lives. When Brooke was 21 weeks pregnant, we were about to lose all three babies but they operated and were able to give them another four weeks, without which they would have all been lost. And when they were born 15 weeks early, the staff in the St. Peters NICU saved their lives again. The nurses cared for Annaleigh (and continue to care for Lily and Charlie) as though she were their own child. They cried right with us in her final moments. And Dr. Hiatt and his staff of nurse practitioners (especially Jodi, Diane, and Marilyn) have made sure that anything and everything is done that can be done for our children, and they do it with patience and love and never make us feel like just another family. Our babies and so many others are given nothing but the best possible care by all these people. If you are so inclined, you can make a donation in honor of our beautiful Annaleigh to:
St. Peter’s Foundation
For the NICU
254 Easton Avenue
New Brunswick, NJ 08901
We spent a lot of time at the NICU today, finding comfort being with Lily and Charlie and among the doctors and nurses who knew Annaleigh best. Being there is really what we need right now, and both Lily and Charlie seemed to know that. We held both multiple times today and they were great for us. Both are gaining weight and eating a ton. Charlie has been consistently getting his oxygen from the nasal cannula and doing quite well on it. Lily goes on the cannula when she comes out for visits and is much happier without the bulky CPAP tubes. She’s also started enjoying the pacifier a great deal. She’s even taken to holding it herself, which is just about the cutest thing to see ever.
We find peace when we’re with Charlie and Lily and we know that they will be our comfort in the rough days ahead. We aren’t sure how well we cope during the trying tasks we’ve got in front of us (viewing burial plots, seeing an obituary, etc.) so forgive us if we don’t post an update every night. But stay with us, because Charlie and Lily will need your love and support to help them grow big and strong so they can make their sister proud.
Lily's "Daddy Loves Me" outfit. Oh, how true that is.
Lily is loving the pacifier lately, especially when she gets to enjoy it while her mommy is holding her.
Brooke had absolutely no idea that Lily was looking at her when I was taking this picture. It was very cute.
Charlie is just loving life right now with his nasal cannula. He was never quite comfy on the CPAP or BiPAP because the tubes were so big and were irritating his tiny nose. This is much more to his liking.
Charlie is up to 28 ml of fortified breast milk for his feedings. That's almost an ounce, which will be a big milestone for him.
Saturday, August 22, 2009
She fought to make it through last night, and she fought to get through the morning, but by early afternoon she had a serious case of acidosis, which resulted from the dead bowls sending acid into her blood. The doctors knew then that it was only a matter of time for her.
We spent her final hours holding her, telling her stories, singing her songs, and reassuring her that we loved her more than anything and that we always would. Brooke told her fairy tales of princesses and about how we met, and I told her about Romeo and Juliet (I changed the ending to make it a bit nicer) and Shakespeare and falling in love. We tried to make sure she knew all the things we were never going to get the chance to tell her.
When the time came, she was comfortably resting in Brooke's arms. Her heart rate dropped pretty quickly, and it was over in a matter of a minute. She was in no pain.
We've said all along how great the people at the St. Peter's NICU are and today was no exception. Besides going out of their way to comfort us and ease our sadness, they arranged it so that we could have a family portrait. They brought Charlie out of isolation and Lily out of her isolette and carried both over on portable oxygen tanks. They closed down the entire NICU so we could have some privacy and gave us a chance to be together as a family for the first time. It was brief but it was the best thing that we could possible do. We will cherish this photo for the rest of our lives, I'm sure.
Annaleigh was loved. I said that yesterday and judging by the amazing number of comments I was not wrong at all. We can't express how grateful we are to all of you who have stayed with us through all of this and have offered your love and support. Her eight weeks in this life were way too short but in that time she touched a lot of lives.
We've got to make funeral arrangements now, something I honestly never thought about before. We're probably going to have a small private service for our immediate family-- we're not sure we could emotionally handle anything bigger.
Again, thank you all. We love you baby.
Friday, August 21, 2009
Dr. Gallucci (the surgeon) came for us less than an hour and a half after he started the surgery, which we knew was way too quick and we knew it was a bad sign. What he found was not good. Her entire bowel system is dead, a victim of this sudden and terrible digestive disease. A person cannot live without a bowel.
They outlined everything for us and basically said that she will most likely not make it through the weekend. Even surviving the night would be a bit of a surprise.
The best case scenario would be that she makes it another 48 hours, stabilizes, has another surgery to remove all the dead bowel before it manages to spread to the rest of her organs, survives for a year on iv feedings, finds a bowel donor, and has successful organ transplant surgery. The odds of that happening are effectively zero. She's too far gone and too small for her body to survive all of this.
Thus, Annaleigh is dying.
Now, we are waiting for her heart to give out. She's already shown signs that it is weakening and so it is just a matter of time before it stops. We know it is coming. We just don't know if it will happen in the next few hours or not until tomorrow. But it is going to happen.
We've been with her for the last several hours, holding her and loving her. Our parents all came up to say goodbye. My brother John is currently driving back from Connecticut with his girlfriend to see her. All the nurses have been with us, even the ones who are not our nurses. Marissa, Annaleigh's primary night nurse, is off today but she's coming in to see her and take care of her. There were 89 comments on the "Annaleigh is having surgery" post that I made late in the afternoon, despite the fact that people usually check this site only before bed or in the morning.
Annaleigh is loved. By a lot of people. Some of those people are perfect strangers and so I felt that we owed it to all of you to post right now, to keep you all informed about what is happening. Thank you all for the thoughts and prayers tonight and every day for the past two months.
Annaleigh has brought us such joy and happiness in her short time. We love her more than we can express.
We will post again when it is all over.
We were on our way out of the house to visit this morning and Dr. Hiatt called to tell us that she was not doing well. She had thrown up multiple times and her belly was looking swollen. By the time we got to the hospital, they had had a surgical consult and an x-ray and numerous tests, all of which pointed to NEC. About 10% of babies who weigh under 1500 grams at birth get NEC and it is extremely dangerous.
Basically, NEC is caused by bacteria in the bowel that eats away at the bowel tissue. In its best form, it goes away and does relatively little damage. In its worst form, it can destroy the bowels and kill the baby. Most cases are treated with medicine, but unfortunately Annaleigh needed immediate surgery. Dr. Gallucci, the same surgeon who did her previous surgery, only needed to look at her very briefly before he started arranging the surgery. He's going to open her up and see what the exact situation is and do what he needs to do to keep her healthy.
Before the last surgery, Dr. Gallucci looked at me and Brooke and said "I've never lost a baby because of something like this." That made us feel better, more confident that she was going to be okay. This time, he looked at us and said "all bets are off. This is very serious." On the consent form, he outlined the procedure and wrote "the baby may not live through this." That was not easy to read. When I saw that I near lost it.
The irony of the whole situation is that she still looks really good. Her eyes have been open and curious and her breathing was great. They only put her on the respirator because she would need it for the surgery. Up until 11 am, she was still only breathing room air.
Dr. Hiatt said that this is something for which there are no warning signs and that it is not related to her previous digestive issues.
So we're waiting. We're are in the "parent's room" where we're planning to stay the night (at least) and we're waiting to hear from someone (anyone) with any news at all. They told us that it would probably take a few hours at least. We'll post again when we hear. In the meantime, please keep our beautiful Annaleigh in your thoughts and prayers.
Thursday, August 20, 2009
We knew Annaleigh's time on the breathing aids was limited and when we arrived for our morning visit, her nurse told us that Dr. Hiatt wanted to try her with nothing but room air tomorrow. But while I was holding her, he came over for a chat and decided to give her a try right then. So the nurse unhooked everything, and as of 10:00 this evening she's still breathing perfectly with no help whatsoever! This is great that her lungs are strong enough to do the work on their own, but Brooke and I are even happier because we get to see her beautiful face all the time now. (The picture here was taken before the cannula came off.)
But the pooping... oh, the pooping! Annaleigh has managed to create a stink that has (until just yesterday) gone undiscovered by human olfactory senses. And the frequency with which she poops would make even the most regular of us look backed up. But the most amazing thing about Annaleigh's raunchy stink is the fact that today she managed to teach that stink to Lily! Brooke opened up the Bug's isolette to change her and BAM! she was punched in the face by the stink. It was like the opening of Pandora's Box-- the world now knows the meaning of evil smells. Who would have guessed the the boy was the least stinky of the bunch?
On a more serious note, Annanleigh actually lost weight today, which is somewhat worrisome. If Charlie or Lily had lost, it wouldn't have been such a big deal because they're much bigger and more consistently gaining; Annaleigh has had issues even maintaining her weight so now losing isn't a good thing. We were told that breathing independent of help is a lot of work for a baby so they burn a lot of calories, so we're hoping it's nothing more than that.
Lily, however, is up another 45 grams (to 1565, or 3 lb 7oz). She goes on the nasal cannula when she's out for visits but will be on the CPAP regularly for a few more days at least. She was wide awake during her time in Brooke's arms this morning and we were marveling about just how different she looks now then she did a month or so ago. I have been carrying Lily's first tiny purple hat from her first few weeks in my pocket with me since she outgrew it and we were looking at it this morning. She was all skin and bones for the first month or so and this last month she's put on so much weight that she looks like a different baby. If you go back and look at her pictures from early on and then look at her pictures now you would never guess she was the same baby. We couldn't be more proud of how she's fattening up!
And when it comes to being chubby, Charlie is no slouch. While he hasn't been weighed yet today as of this post, just looking at his face reveals how big he's getting. And since he's been doing so well with his four-hour rotation on/off the nasal cannula, Dr. Hiatt decided to let him try it more permanently... and so far, he's doing great! It's been since mid-afternoon that he last was on CPAP and since then he hasn't had a single episode. If this keeps up, he's going to challenge his sisters to be the first home.
During her evening visit (with her mom and Nana), Brooke learned how to give the babies their sponge baths! She practiced her first bath on Annaleigh, who was a fairly willing test subject. Tomorrow, the nurse promised to teach Brooke how to suction the babies noses-- the fun never stops at the NICU!
Outside the NICU it was another busy day. We spent some time test-driving some more cars and we may have found a surprise winner: the Honda Pilot! We had just driven a Town and Country and it was nice but not blowing us away. As we were leaving, the salesmen mentioned that they had an older Pilot that was in our price range. We had previously thought that it would be too small and not fit the three car seats, but after a careful re-examining, we think we may be wrong. We're planning on bringing the car seats to the dealer tomorrow and trying it out, and if it fits, we may have found our car.
After the car shopping, we rushed home and then right back out to Delaware Valley Pediatrics where we took a tour to see if we wanted to use them as our baby doctors. We've gotten some good recommendations about them and we liked what we saw at the office (and they're pretty close to home), so I think we'll be seeing a lot of them.
And that is that. It looks like another busy day tomorrow, but if it's as good as today was we won't have any complaints.
Just for kicks, I took a picture of our freezer today. These two-ounce bottles of breast milk have taken over our freezer. We now keep our meats salted and cured and hanging from a tether in the back yard.
Wednesday, August 19, 2009
That's the bad part. The good part is that the babies are still doing well. A few changes were made today, but nothing major. Annaleigh had a few episodes yesterday of dropping her heart rate, which is rare for her. In order to correct this she will be receiving a higher dose of caffeine from now on (she most likely needs more since her weight has gone up) and will also be tested to see if she needs blood. There is no cause for concern though, and Annaleigh was her usual happy self today. She gained 25 grams tonight to reach 1315, or 2 lbs 14 oz. She's slowly creeping towards 3 lbs! Both times we held her she pooped - wow is that little girl stinky!! I changed her diaper tonight after I held her and she rewarded me by pooping even more while I had her diaper off. Thanks, baby!
Charlie had his feedings increased to 26 ml today and of course he is happy about this! He put on another 20 grams to make him 3 lbs 10 oz. He's still doing well alternating between the CPAP and nasal canula and had a nice snuggle with me this afternoon.
No changes for Lily today, other than a weight gain of 40 grams to total 3 lbs 6 oz. She was asleep both times we were there, but she did very well when Joe held her this afternoon and didn't have on desat while she was out - a big accomplishment for her!
Joe and I kept busy today when we weren't at the NICU. This afternoon we went to two different Honda dealerships on our minivan search. The first one did nothing but make us angry. We sat there for an hour and a half before we even SAW a van! The sales guy had to run our numbers. Then the van we wanted to see supposedly needed power steering fluid and was taken over to the repair shop from which it never returned. Another van we wanted to see wasn't on the lot. He finally showed us something but it had just come in and had yet to be detailed. I could not get past the stained seats and scratched, dirty dashboard. So we left.
On a whim we stopped at a dealer near the hospital and had a much better experience. The sales guy there led us immediately out to see two different vans and simply took our information to work up some numbers for us while we were gone. We plan to go back tomorrow to review the numbers and test drive the cars. One of them is a 2007 Dodge Grand Caravan. Does anyone own a Grand Caravan? Do you like it? Anyway, the second visit was at least productive and we also have some other things in the works. Our good friend Ryan hooked us up with a friend of his who owns several dealerships, and his friend is trying to get us a good deal on something nice. So our fingers are crossed that something comes of that. Thanks Ryan!
Then this evening Joe and I attended a baby care class that the NICU was running. It covered basics like bathing, swaddling, tummy time, vaccines, etc. and we both found it very, very useful. There is a LOT to know about babies! Good thing I took notes!
Tuesday, August 18, 2009
We were happy about the breathing progress today. Our only disappointment was that Annaleigh did not gain any weight. She did not lose any, which is good, but we were so hoping that she would have a decent gain tonight. Her feedings were increased to 26 ml and she’s on 26 calorie supplement, so our fingers are crossed for a gain tomorrow. The nurses assured us that her slow weight gain is not abnormal, but as Charlie nears 4 lbs and Annaleigh is stalled at 2 lbs 11 oz we can’t help but worry a tad!
Dr. Hiatt returned today after a 2 week vacation and it was very nice to see him. It was especially nice because he was thrilled with how the babies are doing! The first thing he said to me was, “Congratulations!! They are doing great! I am so pleased!” Go babies!
Tomorrow Joe and I are off on our minivan hunt. The dealership where we purchased our cars has about 20 used Honda Odysseys on their lot so we are hoping to get lucky there. In the evening we are taking a baby care class at the NICU that we are looking forward to. It will be a busy day, but there will still be plenty of time for baby snuggling!
Charlie looked adorable in his little paw print onesie. For some reason Joe thinks it makes him look like Fred Flintstone. Can’t say I agree… [Joe's Contribution: Yabba Dabba Doo!!!]
Lily takes a break from her nap to give us a little peek at her eyes. She’s been snoozing a lot the last few days so it was nice to see her awake for a little bit!
Annaleigh just gets more beautiful every day. And she's always smiling lately, which doesn't hurt!
This picture is actually a week old, but I just scanned it today (the nurses took it) and I LOVE IT!!! Charlie is so frickin' cute! Look at those giant cheeks!
Monday, August 17, 2009
On that note, both girls gained weight today. Lily gained 25 grams after her feedings were increased to 26 ml. She is now eating the most among the three. Annaleigh gained another 20 grams which makes us happy – our little peanut needs to catch up to her siblings. Charlie had not yet been weighed as of our nighttime visit, but judging by the way he seemed to enjoy his 9:00 feeding we expect to see a nice increase from him as well.
All the babies had nice snuggles with us today, and Annaleigh tormented her nurse this morning by pooping all over during her diaper change and forcing the nurse to remake her entire bed. It was pretty funny, since I wasn’t the one who had to clean it up. But something tells me when they are home and I am the one cleaning up after them constantly things like that won’t be so amusing…
Annaleigh shows off her naked noggin. It’s starting to reshape itself nicely since she’s been off the CPAP.
Lily gets in a cuddle with Daddy before it’s time to eat. The babies are starting to know when it’s mealtime and tend to get fussy right beforehand.