Sunday, October 31, 2010

Happy Halloween 2

Stinger shot

Daddy got to go visit Lily today. She wore her Bee suit and took lots of pictures.
Her forehead IV went bad this morning, so they put one in her little hand. Then they decided the forehead one didn't look bad after all, so now she has two. Kind of a bummer; we were all looking forward to having that one out! Maybe tomorrow.

Happy Halloween!

Two suckers

Zar and I were last minute "Wisconsin Dairy Farmer" and witch. My cute kids were a darling butterfly and super cute ladybug. Lily had a bee costume made for her by Grandma--we are hoping to slip it on her today for a picture. Now that I'm a parent I think office trick-or-treats and trunk-or-treats are AWESOME--stay out the the horrible rainy cold and be safe and warm. Ella did her first trick-or-treating at Dad's office and quickly got the hang of it--saying "Thank you" and grabbing multiple candies while she's still little enough to get away with it. Ava's first Halloween was special too--she almost has the hang of traditional crawling with a few plank poses thrown in. She has enjoyed tormenting the cat.
Lily is doing well and has enjoyed resting up over the weekend before another busy week starts. We have been seen by cardiology, genetics, GI and surgery so far. Genetics noticed the problems Charlotte had with her kidneys in her chart and did a kidney ultrasound which looked good. We will still watch them--Charlotte had kidney reflux and was on antibiotics her whole life to keep her from getting infections--but so far her kidneys look healthy. Charlotte also had some weird little issues--constant low blood sugar--sometimes EXTREMELY low, which didn't seem to affect her much even when she should have been slipping into a coma. She also had low sodium which got her worked up for cystic fibrosis more than once but was always negative.
I'm feeling good. Of course it's easier with Lily doing well right now, but I'm feeling optimistic and enjoying my other kids and the small amount of time I am getting with Lily. She's been waking up more and is so wiggly which is fun to see. She has also been crying a little more as you can see above. She has a very tiny little cry right now. I love her big eyes with her heavy lids and her tiny nose and mouth. I love her dark hair and chubby fingers, and her funny huge feet which are totally unlike Charlotte's were. I am very lucky to have such beautiful special sweet daughters and am so blessed to know that they are all part of our family always, no matter what happens.

Friday, October 29, 2010

Primary Children's Medical Center

Lily made it safely to PCMC NICU yesterday.
Sorry for the lack of updates! I was just too tired to blog last night.
Right after my last post we got a call from the doctor telling us Lily had developed some complications. She had spiked a little fever which led them to do a work up, leading to the discovery of aspiration pneumonia. It appeared that she had been refluxing or "swallowing" some of her food into her lungs and her right lung wasn't looking good. She was moved back to the "little room" of the NICU--the most acute and sick babies--and they had to restart her IV and take her off feedings.
We sent the kids with grandma and went up there, where she looked surprisingly well and wasn't laboring to breath which was encouraging. The last picture above is from that night.
The only good thing about the pneumonia is it seemed to speed up the transfer to PCMC. She was picked up yesterday and I got to ride along with her (in the front) so we had our first ambulance ride together.
Once at PCMC things got started right away. She had a very long and detailed echocardiogram and afterwards Dr. Day came up to talk to me. He was encouraged by the results and felt like her pulmonary hypertension is not as bad as we originally thought and he pulled her off the medication they had started for it. (In case you are wondering, it's Viagra, but they call it "Revatio" when used for this purpose.) He felt like if the PDA closes on it's own we should be good to go, and if not, we can discussing closing it for her.
After our talk he walked me to down to Imaging and stayed to watch her Upper GI study. She wouldn't take a bottle at all so they were unable to see if she is aspirating directly into her lung, but they did shoot some dye into her tummy which came right back up. She hasn't ever really spit up which means whenever that happens it just goes into her lungs. Great. Surgery is coming up to consult on her today about a Nissen and G-Tube placement, which Charlotte had as well but at age 2.
In the end it was an encouraging day. We have gone from saying "no intubation" to discussing surgery and obviously intubation for those purposes. We will reevaluate at each step and make sure we are still doing what is best for Lily. Thus far the doctors think she could go home on oxygen and with a g-tube and live a happy life, and we would get the chance to get to know her. If that changes we will make other decisions, with her help of course.
This morning her oxygen need has gone down a little and she is resting after her wild day yesterday. I am spending time at home to let my other girls rest and enjoy some quiet time at home with mom. This afternoon they get to Trick or Treat at Dad's work and Aunt Alex's work, so that will be fun. We will get up to visit Lily after that and see what the doctors are saying today.
Thank you for all your thoughts and prayers. We feel so supported through this rough time and know we aren't alone!

Wednesday, October 27, 2010

Down again...

Cute Profile
Lily wasn't transferred today. I was bummed. It turns out it was because some doc up at Primary's didn't want to deal with a transfer patient on his last day on service. Great. So anyway, hopefully we will transfer to PCMC tomorrow afternoon.
The day didn't get any better. Lily wouldn't eat for me and ended up getting most of her food by tube today. She also got bumped up on her oxygen quite a bit, "graduating" to a whole different meter. Sigh. It was a rough day. Lily was very tired.
Dr. Day the cardiologist called me tonight which I thought was awesome. I have been so impressed by our great doctors and nurses; hopefully that continues. He was just calling to check on how I was doing, how Lily did today, and asked if she looked like Charlotte. (no.) It was comforting and gave me a little hope that once we get up to PCMC we will discover some miracle solution to her heart and lung issues and she'll be ready to come home as healthy and vigorous as any eight pounder would be. I know it's unlikely and I recognize that Lily has been sliding in the wrong direction for a couple days now, which is not encouraging. I'm not saying we are giving up hope but at the same time we are beginning to realize Lily is not doing as wonderfully as we had originally thought, and we have to accept that Lily's hold on life is tenuous.
If we don't get to bring Lily home it's going to be hard but we know she will always be our daughter and part of our family. We can't blame her for wanting to be with her big sister in a much easier and better place. If she's done all she needed to do here, who are we to demand she stay and suffer? Life is rough. Life is painful. If she leaves us soon we can know we did all we could for her and she made the decisions I was so terrified to make.
Be Still my Soul, the hour is hastening on
when we shall be forever with the Lord.
When disappointment, grief and fear are gone
Sorrow forgot, Love's purest joys restored
Be Still my Soul, when change and tears are past
All Safe and Blessed we shall meet at last.

Tuesday, October 26, 2010

Last Night at St. Marks

Lily is being transferred to Primary Children's Medical Center tomorrow. I have been very pleased with the care at St. Marks and have LOVED every doctor we have dealt with. They have been so proactive and encouraging about Lily's potential and future. Today the NICU attending was able to talk to Dr. Day our cardiologist at PCMC and they felt the best thing to do would be for Lily to make the trip up there and let Dr. Day evaluate and treat her PH right away. He may want to close her PDA depending on what happens. We also discussed placing a g-tube before she comes home. Best case scenario, we are able to get her PDA closed and it makes a significant difference in her PH and we are able to get a g-tube in and ensure we can get enough food into her, and that it doesn't take too long and she handles recovery well. That is a LOT to ask but I am hopeful. I am glad we are going. I feel like we are taking action and things are going to happen for Lily. I'm happy to be getting her the interventions she needs before she goes home and suffers for want of them. It's a bummer that she won't be coming home really soon, but hopefully once we GET home we can STAY home, and not rush to the ER every time she refuses a bottle and gets dehydrated and tired. And it's a little bit like going home'm a hospital mom AGAIN, and it's probably good we are going to the NICU where Charlotte never was, so we can ease our way back into the place without too many old memories.
So far Ella and Ava are doing well and I am hopeful we can work it out so I can spend time up at the NICU without neglecting them. Of course I'm getting a ton of help from grandparents which I am eternally grateful for. Hopefully in a few weeks we can reach our new normal with 3 happy girls at home. That would be so wonderful.
Morning update: Lily's oxygen is back down to LESS than what she was on yesterday and she ate well during the night. The ride continues...

Monday, October 25, 2010

Hard Monday

Kind of a strange day today. Lily didn't eat as well and her oxygen got turned up a little bit. When Zar called with this information around lunch time my dad took my girls to run some errands and my mom and I went to the hospital. Lily was awake when we got there and ready to eat, and ate pretty well for me, only needing 20 mls through her tube. She was snuggly and sweet and we were talking about how much bigger and stronger and more active she is than Charlotte was her age.
I also talked with the doctor and was very comforted by what she had to say. She wanted to know whether or not we were going to "treat" Lily, and I said we were. She said that her pulmonary hypertension did look a little worse than it had at birth. She wanted to start treating her pulmonary hypertension right away and was going to call Dr. Day, her cardiologist, and discuss with him initiating treatment. We talked about maybe transferring Lily to PCMC and having her seen by Dr. Day in their NICU and finishing her hospital stay there. We also discussed placing a G-tube sooner rather than later to help her be as healthy as she can be. She said she felt Lily was doing very well and seemed happy to provide her with any and all cares and treatments she might need to reach her fullest potential. I love it when doctors have that attitude and I really liked this doctor. After discussing it with Zar we are starting to feel like we should transfer to PCMC and get things done rather than coming home, struggling, getting colds, and then trying to go back over the holidays and catch up when we can do things now.
Anyway, I was feeling great about everything and excited, strangely, to start on this journey again and get Lily started on the best, healthiest life possible. When we got home there was this little butterfly on the brick wall of the house which has always been our little message from Boof since she's been gone, and I felt like things were going well.
When we got home tonight I had Zar call to check on Lils before I headed off to bed. The nurse said she was doing fine...but that she had turned up her oxygen a bit more. When she told us how much we felt like it was a LOT more, and maybe we should have been called if her oxygen needs had really increased that much over the last few hours. The funny thing was the nurse didn't seem to think it was a big deal at all. I don't know if Dr. Day suggested we turn up her oxygen to keep her at 100% saturation or if she was just doing poorly and the nurse turned it up at her discretion. I don't know if she really needs that much oxygen or if we just have a nurse tonight who always turns kids up. She is on more than double what she was when I was there earlier however.
Zar went to go see her and see what he can find out. I'm scared all over again. The roller coaster is the hardest thing about this--and the highs are so high and the lows are so incredibly low. A few hours ago I was bummed that Lily wasn't coming home in the next couple of days but happy that she was doing well and maybe was going to get the feeding tube that Charlotte waited years for, that made her life so much better. Now I'm sitting on the couch at 11:30pm wondering if I should get ready for bed or if I'm going to be rushing up to the hospital tonight to be with Lily.
Zar is having a hard time with the fact that Lily has spent her whole life in the hospital and has spent so little time in our arms. He worries that if we decide to pursue g-tube surgery and other treatments now she will spend weeks recovering in the hospital and may never spend any good time at home. I know that is a legitimate fear but I told him our goal is to get her healthy and home and keep her home, which is much easier with a g-tube and the right meds. Hopefully we could spend a wonderful holiday season with her making memories with our little family. At home. I was saying those words just two hours ago and now it all seems to have slipped away again.
I know it's unlikely anyone will read this until tomorrow when things could be totally different again, one way or the other. But regardless of which way they go, we could use your prayers.

Sunday, October 24, 2010


I'm over 8 lbs now!

Mom outside the NICU window.
Happy One Week Birthday Darling Lily-Pie! You should come home this week to celebrate!
I'm feeling much better today and Lily is doing fine. Sometimes you just have to sob it all out which I did for several hours yesterday. Zar went to visit Lily at 5 am this morning which was so sweet of him. I managed to sleep through his alarm and him getting up, stomping around, opening drawers and getting dressed, turning on lights and opening the garage. Guess I was sorta tired. Ava had a great night and slept all the way through in her new crib...or did she? Guess I'll never know.
I have a bit of a sore throat and Ella has just gotten over a cold so I stayed out of the NICU today. It's not cool just standing outside the window but I got to watch Zar feed her, and she did well. She is doing great with her newly maneuverable tongue. Aunt Allison and Uncle Ben came to visit as well. Ella loved visiting Baby Lily and remembered just where to go to see her, running down the hall and waiting under the window. When I said "Come back and wait for daddy" she burst into tears and yelled "LILLLYYYY!" and threw herself on the hospital floor. Sweet in a two year old way.
A few days ago we were thinking she would maybe coming home on Monday but I'm thinking we have at least a couple more days, just for her to get stronger and continue to learn to eat well. Not excited to have Zar going back to work tomorrow, it is so much easier having him home and I don't even have my baby home yet. I guess it's good for me and really I'm feeling a million times better than I was a few days ago when I was being strangled by fluid.

Saturday, October 23, 2010


Oh Lily Pie. I didn't get to see her at all yesterday but thank goodness I'm sending milk to her. At least I feel like I'm doing something for her when I can't be with her. Zar dropped me off for a few minutes with her this morning while he ran some errands with the other kids. She was wide awake waiting for her bottle. She came off IV fluids last night as well as the Bili-lites. I'm glad of course but it makes it a little harder now that she COULD be held a lot more but I'm not there to do it. My parents have been great to go up for one of her feeds and Zar went late last night but it's very hard. Plus I've got the whole hormonal aspect which doesn't help. It will be so good to have her home. Unfortunately Ella has a little cold and I keep feeling a tickle in my throat so now I'm terrified of getting her sick. Just can't win.
Yesterday an Oral Surgeon went to check out Lily's tongue tie. He called me and was very through, explaining the benefits and risks etc etc, which I thought was impressive as I figured they would just clip it and be done. I consented in the hopes it would help her eat better and maybe nurse. It went very well but now she has this brand new tongue and has to learn to eat all over. It took a long time to get half her bottle down this morning and it was such hard work for her. She got the rest through her tube and was exhausted. It was hard for me too. Again, hormones and everything else, but I got home and had another little cry fest. She's doing very very well but it's so hard to watch your baby have a hard time. I hope we get the chance to have her with us and she gets a little older and is happy, like her big sister was. She went through so much but was just full of joy and loved living life. It made the hard times worth it when she was well.
Zar and I pretty much trade off feeling sad and discouraged. At least one of us always seems to be "up" to comfort the other. Every once in awhile it hits me that here we are starting all over again, waiting for test results while holding our breath, staring at monitors, praying so hard for holes to close and sats to stay up and our baby to come home. I just shake my head and think "how did we get here again?" Lily is doing as well as we could have ever hoped and I'm still feeling such heartache at what she has to go through, what we have to go through.
We are working on selling our car so we can get a minivan for our huge brood of infant girls. I mentioned I was going to be sad to lose our Sube, such a great car. Zar just walked in and saw me sitting here bawling and said "Really, it's just a car, dear."

Friday, October 22, 2010

Mom is Home.

Just chillin'

Lily's first sunglasses tan
It's my first morning home without Lily who is still camped out in the NICU. I am SO happy to be home with Ella and Ava and Ella has chosen to be extra loving to me instead of punishing so that's been great. I need snuggles while Lily is still up at the hospital.
Luckily Lils is doing very well. She had another echo yesterday which was about the same, so she will be coming home on oxygen and we will get hooked up with Dr. Day at Primary's for her cardiology needs. Her PDA could still close but currently it's open. PDA closure is often delayed in trisomy kids. She is eating well and digesting well, currently taking about 50mls by bottle when she's not too tired. The nurse told me this morning that her goal is 63 mls which is being increased each feeding. So our goals are to get up to full feeds, get out from under bili-lites, make sure her sugars are stable and then she will be ready to come home! The NICU staff doesn't like to give you estimates on homecoming but sounds like maybe early next week (?). Tomorrow we get our car seat situation figured out and the 2nd crib set up. Lily will be in the cradle in our room. This morning Ava looked about ready to stand up and leap out of the cradle so perfect timing on that.
The most annoying thing right now is technically I'm not supposed to drive until HALLOWEEN. I am always amazed at how little I remember from this first week or so after c-section later on, and I say "how wise that they don't want you to drive" But I feel fine and totally with it, and much more capable of driving than I did last week when I couldn't reach the steering wheel and was having constant contractions. Oh well. It's hard to not be able to even deliver milk to her but I have lots of offers of help so we will get it figured out.
I have lost 22 lbs this week. As long as I stay on top of my incision pain I feel so great, better than I have for months. It makes such a difference to just get home to your own bed and clothes and family. I'm sure it will be the same for Lily Pie when she gets home.

Wednesday, October 20, 2010


That's a big Lily-Bili-Baby. Still 7 lbs 13 oz.

Lily started looking a bit pumpkin-like last night and today is under the Bili lights. She doesn't seem to mind it so far. She almost doubled her feeding amount over night as well although she is quite a messy eater, so it's hard to get exact amounts. This is partially probably due to her tongue tie so I'm going to discuss clipping it with her docs and whether they think that will help her breast feed as well, as pumping is not cool. Last night was definately the last night I can get away with sleeping through, both because Lily will need me and I will explode.
Speaking of exploding, today is the 20th, which was originally the day I had scheduled my c-section. How happy I am that I moved it up. How I love not being pregnant. I have just completed my third and final pregnancy. I tend to forget how much I do not like being pregnant. I have even been known to say "oh I miss being pregnant!" which you know is ridiculous if you have had to spend any time around me in late pregnancy. We recently took more permanent birth control measures, which still left the option for us to try IVF in the future if we chose to. Well that door is now closed as well. During my c-section my doctor found a very very weak spot that apparently was only one cell layer thick. He could see right through it. He said he didn't think it would've held for another few days. He also said that it was "about as close to tragedy as you can come without crossing over." They were telling me all this while I was still being sewn up and I offered to just let them take everything out as apparently it was ready to fall apart anyway, which he didn't feel was necessary. But it would definitely not be wise for me to carry another baby. So that's that! How I love having decisions made for me. I'm not gonna lie. Am I glad I got to experience pregnancy? Yes. Do I realize it's a blessing to experience pregnancy? Sure. Am I sad that my child bearing years are behind me? Nope. Zar has already mentioned adoption again--specifically throwing in the word "boy"--but we will just take one huge life experience at a time.
Hey to any of my co-workers who are reading this. I've gotten a few texts (that of course my phone won't let me respond to) that indicate that Lily and I are being followed at work. I was feeling all loving and gooey this morning under the influence of percocet and thinking how grateful I am for my great job and awesome co-workers. But really, I love everyone there. I have an awesome pair of maternity scrubs someone is welcome to. And clear your crap out of the pump room. See you all soon.

Tuesday, October 19, 2010

NICU Day 3 Recap

Visiting Lily through the NICU Window
Ava wonders how she became a Big Sister at 5 months

"Is there something in my hair?"
Today was good. Lily made it to the step down area (still in NICU) and her sisters were able to see her through the window. Ella kissed the glass. Lily continued to eat well and woke up a little more. I felt much better and had pretty decent blueberry pancakes for breakfast.
Zar is going back to work tomorrow and it's been so nice having him around for the last few days. He has been so great running back and forth between the NICU and my room, taking visitors, delivering milk and bringing back updates. I am feeling like I can spend a lot more time downstairs tomorrow which will be good without him here to keep me company. He also has been great taking the girls to grandmas for sitting and taking them home each night to sleep. I've started to complain about being bored and lonely but have been reminded that my days of lazing in bed and pain medication are severely numbered. Like down to One.
We don't know when Lily will be released but she is heading in the right direction. We weren't sure whether she would come home and we are aware of how difficult it's going to be. Yes, we are both scared of how we are going to handle it. But we are experienced (which leads to some of the fear) and we know how worth it all the struggles are. Our lives are nothing if not rich. And we love our girls so much, including our new Little Lily. They are our reason for living at all, and how lucky and blessed we are to call them our own. They are each a miracle in their own way and I remind myself of that everyday. All I ask is for the strength to endure our blessings and the occasional full night of sleep. Tonight is as good as any. See you all in the morning.

Visiting Hours

It gets a little crazy around here when ALL the baby girls show up. And Lily is still down in the NICU. The twins Evie and Rosemary are almost four months, Ava is 5 and a half months, and Ella just turned 2. Ella is punishing Zar and I a bit for being gone, and showing a lot of love and affection to grandma and aunts while spurning us. And then she used my tummy as a launching pad last night which almost killed me. I was writhing and gasping and bawling and screaming at Zar to check my incision as I was sure it had ripped open. It hadn't. Unfortunately that's the last I saw Ella. Something tells me I will continue to be punished.
We had a happy morning with Lily. I got to change her diaper and she pooped all over my hand. It was impressive. She drank more milk from a bottle and is on 50 ccs of oxygen which is a very small amount. We talked to the doctor who seemed confident that her PDA would close on it's own and that the biggest worry about it was how it affects her eating. Thus far she's doing well on that front and we are not opposed to feeding tubes after having such success with Charlotte's G-tube. After hearing that the doc wants to put us on a list of parents to call to comfort and educate new Feeding Tube parents. We sure fought the tube with Charlotte but it was a huge blessing. At this point Lily has an NG tube down (a tube from her nose into her tummy) to feed her through if she tires out, as it is a lot of work to eat and have holes in your heart and be on oxygen. I'm certainly not opposed to her getting some extra nutrition.
She is also moving into the step down area of the NICU! Strong work Lily Liz!

Monday, October 18, 2010

Sweet Lily-pie

Lily wasn't interested in the hard work of latching today, but she downed her bottle, so we are happy. I am working hard to meet her nutritional needs which are heightened due to the stress on her body and being on oxygen, so we will be supplementing with formula and hopefully we will be able to stick to bottles and not do a tube at this point.
Lily also had an echo cardiogram today. She does have an ASD, VSD and a PDA which hasn't closed at this point. Due to these findings we have stopped weaning her oxygen to help relax her vessels so perhaps the PDA will close on it's own. Currently it is causing pulmonary hypertension which was the health condition Charlotte had that we were so hopeful Lily would be able to avoid. However we have caught it very early and we can take measures to help keep it from progressing.
Thank you so much for continuing to follow us on this crazy journey. With Charlotte we planned the worst and had incredible joy when unexpectedly she did well and came home. This time, although we tried to deny it, we really expected Lily to be the picture of trisomy health and instead we are visiting her in the NICU. However we asked for another challenge, we asked for another hard gift, and I suppose we shouldn't be surprised we aren't being asked to repeat what we've already been through.
Day 2 after a c-section tends to be the worst pain-wise, so I'm looking forward to feeling even better--physically, mentally and spiritually tomorrow.

NICU Day 2

We had a good night. Lily's oxygen need came down a little bit more to 21%. She didn't eat anything overnight due to a lot of secretions but her blood sugars were fine and she is chubby and pink. Last night when we informed our nurse that we would probably have a long night ahead of us in the NICU, she elected to remove my catheter and IV so I would be more free to move around. Then Lily stabilized and I got to sleep without my tubes.

This morning we visited Lily and held her and were generally more upbeat and happy than yesterday--even some baby talk and comments on her fat cheeks. The plan today was to work on feeding, continuing to come off oxygen, and getting rid of the IV fluids. However after our visit with her I lost it and had a good cry in my hospital room. Anyone who knows me and my crying knows I will now be red and puffy for about a week, so watch for that in upcoming pictures.

Zar went back down to visit Lily while I had my break down, and when he returned he reported that her oxygen need is now even lower, and she drank from a bottle. Which is amazing news. She had the little drainage tube down her throat removed as well. In about 30 minutes we are going down where we will attempt breast feeding and maybe try low flow oxygen via nasal cannula as well.

I feel better after my sleep and my sob. Zar and I had some time to just be together and talk and we are feeling better equipped to handle the next few days. Lily's life is still tenuous and we are still very afraid of the unknown, but it feels more like Lily will call the shots as they come and we will be supported through it. We have been blessed with wonderful friends and family and nurses who have said the right things at the right time and followed through on promptings to provide us with just what we needed over the last 24 hours, even if we didn't realize what we needed ourselves. My angels definitely came through overnight including a tender email I woke up at 5 am to read just when I was feeling very alone. And yes, Lily is looking stronger but even if she didn't, I feel like I am stronger today. More later after we attempt the big BF.

Sunday, October 17, 2010

One more Birthday Post

Today was not the sweet sacred day we had hoped for and had shared with Charlotte years ago. Lily spent the day in the NICU with dad by her side, and I spent it itching in bed and decidedly out of it. In fact I am now blogging 20 minutes after taking a sleeping pill so I only have moments of lucidity left.
I was able to pump for her and get out of bed and take a wheelchair ride down to hold her for a few precious minutes. She doesn't look like Charlotte, but there are similar characteristics--I see mischievous pointed eyebrows coming in and although I haven't really seen them in person I hear her chubby little hands bring back sweet memories. Lily had a bath in the NICU and spent her day under the warmer. She is having oxygen forced through her nose via high flow nasal cannula and was still satting low for most of the day.
Our families came up and I was able to see my girls whom I am so grateful for. Ella gave us loves and kisses and ate most of dad's and grandpa's hamburgers. Ava demanded to be held and gave our fingers a squeeze. Zar spent time shuttling different friends and family members to the NICU for a visit.
After one visit this evening he reported that her oxygen had been increased from 34% to 38% and then after the following visit that it was now up to 50% and she still wasn't doing well. We quickly arranged for Zar's brother Weston and his wife Steph to take our girls home to our house where they sleep best so we could stay here and have a "discussion" in the next two hours with the staff about what to do next. We talked about wanting to let my sister Allison see Lily as she jumped in her car today and drove 7 hours with twin babies because she needed to be here. But we didn't want to prolong suffering for Lily or for ourselves. When it's time, it's time. We prayed and decided to get an hour or so of rest before the big decisions came. We are still saying No to intubation.
We woke up at 10:30 with still no word from the NICU team, so Zar went down to check on her. Lily was down to 24% on her oxygen need and was sucking happily on a binky. They have plenty of milk to feed her tonight thanks to my stellar skills and Ava, who provided the crying baby noises which kicked the milk makers into high gear before it was really time. So Zar went home to let Steph and West go home, and I was given an ambien and a chance to pee on my own.
It has been a discouraging day. We are scared and still don't know what to do, what the next step will be. We are trying hard to place it all in God's hands, but sometimes it feels like He is giving it right back saying "No, this one's all you." I am hoping that Joy cometh in the morning. I want to see her eyes, I want to look at her hands, I don't want to be in pain but I don't want to be so groggy. I'm scared, I want to go home, I really need angels standing by tonight. There are so many of you out there, throw me a prayer, not that Lily will be miraculously healed or taken quickly from us, but that we can endure what is right for Lily. This is her turn and I need to stop pushing and just let her be what she needs to be.

Welcome Lily Elizabeth

Lily was born this morning at 7:48 am via C-section. Before she was born the nurse had commented on what a good sized baby she appeared to be, and I had told her I just had a lot of fluid. Both turned out to be true. Lily is 7 lbs 13 oz and 20 inches long. As anticipated it was such a relief to have her born. She didn't cry immediately but soon made little mews and Zar went to be with her. Apparently her hair is ridiculously long in the back like a mullet but I haven't really seen for myself.
She was wiped down and weighed and brought to me, and I held her flat on my back with Zar's help for a few minutes. I kept sending her back to the nurses because she keep looking a bit blue or grunting a bit.
We took her to my room where we met with my parents and our girls, (and got a squeal and a kiss from Ella) my sister Alex and Doug, Zar's parents and my brother in law Weston and Stephanie. Lily was held and passed around and her size and sweet round face was commented on. Then while I was holding her she began grunting and struggling more, and the NICU staff was called. We decided to give her a name and a blessing right then instead of trying to wait to do it the same day as Ava in our ward, which would've been special but we felt it best to do it now. The NICU staff found her oxygen sats to be quite low and her blood sugar was only 28, so we elected to send her with them for an IV and some O's. We had decided not to intubate at this point.
Zar went with her and she was put on C-pap for a few minutes to open her lungs, and got some surfactant and an IV on the first stick, although her veins are tiny just like Charlotte's, darn it.
She is no longer on C-pap but is on high flow oxygen via nasal cannula. Zar is staying with her and coming up to see me periodically for updates and a hand squeeze. I'm supposed to be getting some rest but I can't seem to quite relax.
Neither of us at this point has any inclination on what is going to happen or what is the right thing to do. I would rather not intubate if at all possible. We are praying that the decisions are not difficult and Lily helps us make them without regrets or trauma. She looks so big and healthy it's hard to accept that she is not doing as well as we had hoped. Why does she have such a nice round head and big chubby limbs and a sweet little mouth and long strong fingers if this is it? I know these are unfair questions but she just looks so healthy. Robust even! She is also tongue-tied, has a short neck and low set ears, which are typical of the chromosomally enhanced.
Zar and I are praying and planning as best we know how. She could easily pick up and start doing better, but right now I'm discouraged for her long term health. We could use your prayers and thoughts, we are grateful for all the support and love, we are so, so grateful for our families and our little girls, all four of them.
It's hard for me to sit here all hooked up and groggy and do nothing. It's hard to be thinking these may be our only memories with Lily and I'm itching my eyes out from the drugs and my other girls are not here. It's hard and probably not wise to be blogging while under the influence of benadryl and nubain but I want to remember what I'm feeling, even if those feelings are not clear.
I'm still feeling peaceful and I know things will be okay, but I won't say there haven't been a lot of tears already.
Lily is having a hard time in the ICU. Lungs not looking great and blood sugar issues. We have some hard decisions to make. Prayers appreciated.
Lily Elizabeth was born at 7:48 am this morning. She is 7lbs 13 oz! Huge! She is 20 inches long and needs a haircut!

Saturday, October 16, 2010

Final Countdown

This is it.
Zar is home today which I am very grateful for. We took the girls to our favorite pumpkin patch this morning and now are taking care of last minute house things for when I'm gone--mowing the lawn, getting rid of the fruits and veggies that won't get eaten, final packing.
We went out last night and stopped by Bath and Body Works to pick out a "smell" for Lily. We did this with Charlotte and picked out Moonlit Path for her, which still brings back sweet Boofus memories when I smell it. The idea is to use the scent while you are in the hospital making memories with your baby so it becomes a part of those days, and it seems to work. We chose Cherry Blossom for Lily.
Lily was very active last night and couldn't keep still; maybe sensing that I'm finally starting to tune into what's less than a day away.
I'm still holding off on the anxiety, which is good. I keep remembering being dropped off at the entrance of the Women's Pavilion while Zar parked the car the night before Charlotte was born. I was going in to be induced that time and I stood waiting for my husband, clutching my pillow to my belly and just shaking, teeth chattering, staring at my feet. That moment will come but most likely will not last long. Probably in the car on the way to the hospital tomorrow at 5:45 am. I had it briefly immediately before Ella was born in the operating room, because after all we didn't know FOR SURE that she wasn't also affected by trisomy, and I could sense the nervousness of everyone around me that she would be born and clearly have something wrong with her. And then the shock was how BIG and red she was. With Ava I had no control and stood there helpless in my "dad suit" in the operating room waiting to see her lifted out, afraid she wouldn't be healthy either. What a relief to see her sweet little self! Anxiety is normal.
So here I am with a baby we know isn't your healthy typical robust baby girl. We know a few things--that she is chromosomally enhanced, that she has a lot of hair, that her head looks round, that her face is sweet, that her heart looks strong. But we don't know what will happen when it's time for her own little heart and lungs to take over. We don't know if the work will be too much for them. We don't know if she will cry. We don't know if she will even take that first breath. With Charlotte we just wanted one little cry, one little breath, but even when that didn't come right away it was okay. I just have to expect that if that is the case this time, and the cry doesn't come, I will know it's okay again. That I will feel God's arms around me and Charlotte holding my own heart and know it's what's right and that all is well.
That it was enough.
I will be updating my blog tomorrow via my cell phone. I will try to at least give a brief update soon after her arrival. I will also probably update my status on good ole' facebook, and pictures will follow soon after. My dad says the hospital has wi-fi, so once things calm down we will try and get some details up.
Thanks so much for following us on this journey and whatever happens tomorrow I know I will have a lot to ramble on about in the coming weeks.
Until Tomorrow!

Friday, October 15, 2010

Ava dishes it out

After months of being sat on, swatted at, rolled over, etc by her big sister, Ava went for it today. I don't support my girls beating on each other, but it's hard not to cheer for Ava getting her sweet revenge. She managed to inch her way over to her Ella and give her hair a good yank when I happened to have my camera in hand. She also grabbed sister's new plastic pumpkin bucket from her and broke the handle off. The kid is TOUGH. Ella is sleeping off her outrage and Ava is enjoying the victor's sweet peace.

And here is Ava trying on her Bee costume, which Grandma made for Charlotte four years ago. So Cute.

Having a good last Friday. We went to the grocery store, to the park and met dad for lunch. Then our adventures in sibling beat downs and now we nap.
Tomorrow I will try to dig a little deeper...I mean, major life event coming up...but for now I'm happy to not even skim the surface of what we're facing.

Thursday, October 14, 2010

Last Pregnant Thursday

I should have spread my activities out a bit more. It is Thursday and I deliver on Sunday morning. I'm pretty much out of things to do. Luckily I'm feeling somewhat energetic and peaceful. The girls are being cute and easy going. I'm letting Ella run in and out of the house bringing me one green tomato on each run. I can't bend over to get the ripe ones so I figure if she wants to pick them all that's fine. Plus I'm reminded that I dislike tomatoes. Ava is still in her jamies just waking up from her mid-morning nap, happy to swing next to me with a teething ring.


maybe I'll go get dressed.

Tuesday, October 12, 2010

Countdown to Sunday

Ella is working on not sitting on babies.
I "worked" my last day yesterday. I had my last pre-delivery appointment. And conveniently, my Nesting Urge kicked in this morning. I was hit with an irresistible need to clean off the the top of the refrigerator. Then I went around magic erasing all the grubby finger prints from the walls. Then I went through various piles of paper and threw most of them away. Turns out I'm very good and putting cards in envelopes and never sending them. I found a 2006 Christmas card to Kristen I never sent, pretty much all of our neighborhood Christmas cards from last year, a bunch of Ava's birth announcements and a thank you card to Bonnie. Then I had to sweep out the garage and throw away a few boxes of junk that have been sitting out there for three years. I let Ella run around the garage in her pajamas and fed Ava home-steamed and vita-mixed plums so our next step is to get upstairs and have a bath while every cleaning rag in the house is laundered. As soon as Elmo is done.

I had fantasies yesterday of going to the doctor and having him decide it would be best to deliver immediately--high blood pressure, protein in pee, broken ribs, but of course, everything looked normal and I haven't gained anymore weight or fluid the past two weeks, so no chance on that. Now that this nesting energy has kicked in I'm glad--I need to clean out the car, get my hair cut, get my nails done, finish packing and scrape the dried up food from under Ella's high chair.

I know these past few posts are just dull old pre-delivery ramblings. It is starting to hit me that at this time next week life will be totally different. We have no real idea what to expect. We could be spending our days at nights up at Primary Children's, we could be planning a little funeral, we could be home and learning to deal with two babies and a tot. We just don't know and I'm resigned to it. I have no real impression on what is going to happen, so I'm prepared for anything. My only impression is that whatever happens will be right, and will be a good, tender, sweet experience. So really there's no reason to be afraid.

Monday, October 11, 2010

Happy Birthday Ella!

Happy 2nd Birthday Ella-Roo!
A Little Birthday Dancing

Minnie Cake

Funfetti. Yum.

Tuesday, October 05, 2010

Just Being Gorgeous on the Grass

Ella watches General Conference.
(or might have been Elmo...)

Well I did it. I rescheduled my c-section for Sunday the 17th, and I'm still the first case of the day at 0730. I am pleased. For some reason that feels so much closer and more doable. I am verrry slowly packing my bag...pulling out a pair of socks here and a giant pair of underwear there and throwing them in the "hospital bag to be" corner. I had a ton of back pain at work yesterday and was thinking "What if this is LABOR!? I don't have my SLEEP BRA!" Don't worry, the sleep bra is now in the corner. (Labor...ha ha. As if.)
We also went to see Dr. Brownstein this morning, who was Charlotte's pediatrician. Right after Charlotte passed away we canceled my expensive, excellent health insurance and picked up Zar's less stellar health insurance, and so we had to change pediatricians. We loved Dr. Metcalf whom we saw for Ella and Ava for the past year or so but he just retired and although I am sure his new young replacement is a wonderful doctor, I just feel like Dr. Brownstein did a great job with Charlotte and she knows the ropes and because of Zar's new job, we were able to go back to her.
I didn't warn her we were coming. I'm sure seeing me dragging in screeching Ella by the wrist, carrying a bewildered baby in a car seat AND hefting a clearly nearly-ready-to-go fetus...was a very welcome sight. Ella knows she's almost 2 and immediately showed it off--smacking the nurse's hand when she tried to listen to her chest, refusing to be weighed, screaming "NO!" and shoving her thumb in her mouth. It was fun. Oh yes, Ella is in the 15th percentile for height and 10th for weight. Heh heh. She's just a little peanut allergic peanut.
Dr. Brownstein knew about Lily already. Oh it's hard to be so famous! She was fine (or so she said) about picking up another trisomy patient. And my two other kids, even the screamer.
Now we are home and (YAY!) Ella got shots and has been asleep for almost 3 hours. I lay on my side for awhile and now have the energy to make a giant pork chop dinner to consume while watching The Biggest Loser. Sweet. Ava is hard at work trying to learn to crawl three months early and is ignoring me completely.

And suddenly, we are getting awfully, awfully close.