One Year Later

On December 21st, 2013, I was fairly convinced I was dying of something. I hadn't felt well in a week. I confided to Brian that I thought I had cancer. He thought I was pregnant. And then he drove me to the grocery store and bought a test.

When I saw that second line appear almost instantly, my heart skipped a beat. I was in total disbelief. One year later, I still can't quite believe it. Elodie, you are the best Christmas present ever.

Four Months!

Yesterday Elodie turned four months old! It's been a slightly difficult month with her reflux issues and lack of interest in eating, but aside from that she really is one of the happiest babies I've ever met! It's a rare occasion when she gets upset and cries for any other reason than being overtired. This month started out with celebrating Thanksgiving with my dad. The last time he visited he got sick and didn't hold Elodie at all. This visit he got lots of snuggle time in. I dressed her up in a blue velveteen dress that my mom made for me as a baby (I was born August 6th so Elodie is wearing things around the same time as me). Who wore it better? ;)

We have enjoyed a break from lots of doctor appointments and have spent most of the month of December around the house. With her reflux though, this kind of peaked my anxiety by not getting out enough. I'm trying to make sure I get out at least once a week, but I hate messing up her nap schedule. It's hard living so far outside of the city. Running simple errands to any place other than the grocery store requires a 40 minute commute one way. Not ideal with an infant!

Heading to the mall one day

When at home we have developed a loose routine. Elodie wakes up between 8:00 and 9:00 most days. I give her her reflux meds, then wait 30 minutes before I feed her. Then I have to keep her elevated for another 15 minutes or so. I then try to play with her and practice tummy time if she isn't too tired. 

Without the boppy, she mostly face plants still.

After about 1.5-2 hours she is ready for a nap. She usually naps 2-3 hours, and then it's eat, play, and sleep again for another 1-2 hour nap. She takes one more 30-45 minute nap after dinner and then has one last bottle for the night. She usually goes to bed around 9:30. I have to say, life with two kids is WAY more hectic than I anticipated. I feel like I have so little downtime. When I'm not feeding or entertaining Elodie, I'm either entertaining Noah, eating, pumping, or washing bottles and pump parts. I usually get to enjoy one hour of quiet time in the afternoons. I cherish those moments!!

Elodie had her 4 month appointment yesterday and tipped the scales at 12lbs 5.5oz (13th %ile). She made it over the 10th percentile! I was so excited about that! She measured almost 23.75" (20th %ile), and her head circumference increased to 16.25" (71st %ile). I completed the Ages and Stages Questionnaire and Elodie was considered "Average" in the area of gross motor, and was a little behind in all other areas. The pediatrician said we will check again at 6 months, but based off of what she saw from her at the appointment, she felt that Elodie is doing really well and she wasn't too concerned. Elodie has seen her occupational therapist a couple of times this month and she is also happy with her progress. I know in my heart that she's showing some delays, and when I compare her to what Noah was doing at her age, it's pretty clear. BUT, I am so thankful that she is doing as well as she is, and at this point I believe that she will prove those original doctors wrong! She may take longer to meet her milestones, but I have faith that she will!

Now for the bullets:

• Elodie outgrew her newborn clothing. She is now wearing 0-3, 3, and 3-6 month clothing depending on the brand. As with Noah, her length determines this, and not her girth. I make skinny kids. She continues to wear size one diapers.
• She continues to eat 14-17 ounces of breast milk fortified with formula to 30 calories each day. She eats 5 bottles consistently. I have to wake her overnight around 4:00am to make sure she gets all five in. She almost never wants to eat more frequently than every 4 hours. I think the extra calories make her feel fuller longer. Because she continues to climb the percentiles, the pediatrician referred me to the nutritionist to discuss reducing her extra calories. Next week we will probably cut down to a 25-27 calorie recipe.
• Elodie is still very smiley and has started to giggle! It started just a few days after she turned three months. I was tickling her and then kissing her cheeks, and she let out a few squeals. In just the last week, she has started to do this more often. Sometimes all I need to do is giggle or smile really big and if she's in the right mood, she'll squeal and laugh in delight. No real belly laughs yet though.
• I feel like she doesn't coo as much, but she still uses her voice plenty. She grunts, squeals, purrs, and squawks a lot! If she's not getting enough attention, she lets us know with loud yells.
• She continues to suck on her hands like crazy. Sometimes she tries to shove them in her mouth as she's eating, which isn't very helpful. Elodie is starting to reach for toys held just above her tummy as well. She tries (and usually fails) to get them in her mouth, and then drops them fairly quickly. This is definitely a skill we are working on a lot with her. I truly feel her visual system has been slow to come online, so I am not surprised that she is showing some delay in her visual motor coordination.
• Her eyes are still blue and I see no sign of them changing yet. Could I have a blue eyed baby? I remain skeptical.

Goodbye, mohawk.

• Elodie got her first "haircut" this month. She was born with a lot of dark, long hair right on the top her head. When the majority of her hair fell out, this patch remained. I finally admitted to Brian one day that I thought it made her look like one of the pinheads from American Horror Story: Freak Show, and he was so glad I said so. It turns out he hated her hair too. So we cut it off. She still has some long hair on the back of her head, but that looks normal so we left it in tact.

I'm really looking forward to what this month has in store for us, and can't wait to celebrate her first Christmas! We are so blessed.

Reflux

Reflux is going to be the death of me. For whatever reason, eating has always been the biggest stressor for me when it comes to my kids. With Elodie I feel like it's magnified times a million because it triggers a lot of the yucky feelings and worries I had for her in the NICU. About two and half weeks ago, just before Thanksgiving, Elodie began refusing to eat her regular 3.5-4 ounces per bottle. She would suck down 2 ounces and then just stop. Nothing I did would get her to eat more. I talked with the pediatrician and she asked me to bring her in. The doctor was fairly certain that she is struggling with reflux, and I tend to agree. When Elodie had her feeding evaluation in early October, the SLP warned me that with silent reflux some babies will simply stop eating at 3 months or so. She explained that up until that age eating is kind of a reflex, but once that reflex goes away they will start to refuse to eat because it doesn't feel good. We started her on the generic version of Prilosec almost two weeks ago and I still see little improvement. Prior to her eating strike she was consuming between 17-19 ounces per day. Now it's a struggle to get 14 ounces in within 24 hours. It's making me completely crazy. I worry about her enough to begin with, but now I have fears of dehydration, constipation, brain growth, weight gain, and overall development related to her feeding. I also have a lingering fear that eventually people will talk about a gastronomy tube again. We were so happy and relieved that we avoided that in the NICU, and felt so hopeful that it was a good sign for her development. I really hate watching her regress. I think she was getting close to the 10th percentile in weight, and now she is just backsliding. It is so depressing.

Does anybody have encouraging stories to share about their experience with GERD? Or does anyone simply want to commiserate? Thanks for listening, as always!

On Bonding

From the moment I found out I was pregnant with Elodie, it was hard to let myself get excited. Everything about pregnancy was different for me after experiencing a loss. I was terrified of something going wrong, and I didn't want to get my hopes up too high. Losing Junebug was one of the hardest things I had gone through up until that point, and I felt like I had to be mentally prepared in case it happened again. Once I hit twenty weeks and our anatomy scan showed a healthy baby developing right on track, I started to feel a little less uneasy. We chose not to find out the baby's sex at that appointment. Although I was really excited about the idea of being surprised at delivery, in some ways I think it prevented me from feeling as connected to the baby growing inside of me. I didn't know what to call him or her, and I didn't want to shop or prepare much because I didn't know if I should buy boy things or girl things. So the second trimester was more relaxing, but I still wasn't feeling totally connected. Then I hit the third trimester, and even though I was now at the "viable" stage of pregnancy, a whole host of concerns hit me including frequent ocular migraines, constant and intense braxton hicks contractions (I think I probably could have been labeled with an irritable uterus), and symphysis pubis dysfunction (and if that's not what I actually had, then I'm glad I never did because whatever I was dealing with was bad enough!). I was constantly worried about preterm labor and the health of my baby should he or she be delivered early. For almost the entire third trimester I was too nervous to really feel excited for our baby. I felt like I was always waiting for the other shoe to drop. And then boy did it ever.

The day of the ultrasound that changed everything, the perinatologist and neonatologist sent us home believing that our baby was going to be either incredibly disabled or unable to survive. He or she may even have horrible facial deformities. The words "cyclopia," "proboscis" and "cleft palate" were all mentioned as possibilities. It was without a doubt the saddest, scariest day of my life. Brian and I were in complete shock and had no idea what to feel. On our drive home we actually admitted to each other that if things were truly so bad, we kind of hoped that mother nature would take over for better or worse and prevent us from having to make any difficult decisions. At this point, we still didn't know if we were having a boy or a girl, and with the new information we had about our baby, not knowing the sex made me feel like I was carrying some kind of alien or monster. I had to find out. I had to connect to this poor little baby in some small way so that I would stop feeling that way. The next day we called back and found out she was a girl! It really did help a lot. It was exciting to think we could use the name I had adored for years, and I really was shocked. But it was still incredibly scary and I spent the next two weeks wondering if we would actually be bringing home a baby, and even if we did, what that baby would be like.

The day Elodie was born, I was in such denial! Despite being almost certain that I was in active labor, I kept hoping that somehow I would make it to my scheduled c-section on the 18th. Something, anything, had to go according to plan damn it! And to be honest, I was also really scared. I had no idea what to expect. What would she look like? Would she even survive? Having a c-section was a very different experience than a vaginal birth. I didn't see her emerge from my body. I didn't get to hold her right away. My head was spinning so fast from everything that happened and I was still in quite a lot of shock. It was three hours from the time she was born that I really got to spend any time with her. And even that was chaotic and foreign. My baby was in the NICU. So much to wrap my head around. In the five weeks that followed, things were a total rollercoaster. The NICU is not for the faint of heart! It was hard spending so much time away from my baby, and in many ways she didn't even feel like my baby. Brian likened it to adopting a baby animal at the zoo. You can visit her, you can hold her, you even get to name her, but at the end of the day she isn't yours to bring home. It's a strange feeling and I think a hard one to understand unless you've been there.

I really wanted to breast feed. Despite the stress I experienced with Noah, I had mostly fond memories of it and hoped for a good nurser. Well, that didn't happen. With the strict three hour feeding schedule they had us on, and the fact that logistically I just couldn't be with her 24/7, it was inevitable that she needed bottle feeding. And with the need to bump up her intake with added calories through formula, it started to feel like nursing was not in the cards. The NICU staff tried their hardest to encourage me to nurse, and believe me, I did try. But Elodie would either fall fast asleep in my arms or would fuss and refuse to latch. She was making slow but steady progress with the bottle, and I didn't want to slow that process down. The sooner she ate well, the sooner she could come home. So I eventually gave up on any hopes of nursing. That was really unfortunate because I believe nursing really helps to solidify a bond with your baby. For us, feeding Elodie was usually the majority of the time we got to spend with her, and it was usually stressful and left me feeling a lot of pressure to get her to eat in their 30 minute window. This often resulted in me feeling frustrated by the time she was back to sleep. I hardly enjoyed the time I got to spend with her. I felt guilty, and still not very bonded. I also worried that she wasn't very bonded to me. She only got to spend about 7 hours a day with me, so I wondered if I was just like another nurse to her.

After Elodie came home, things started to get easier. She started to feel like my baby. Her eating continued to improve. I could actually enjoy a lot of the time I spent with her. And it finally started to happen. I started to fall deeply in love with this little baby. And now? Well, I think this picture says it all.

Bonding was definitely different this time around, and it's hard to admit some of the feelings I had along the way. However, it's all a part of our story, which had a drastically different beginning than I anticipated, so I think it's a little to be expected. And in case you ever read this yourself someday, Miss Elodie, there is no doubt that I love you fiercely. To the moon and back, my love. 


(For those of you with more than one baby, did you find the bonding process to be different with your second baby?)

Three Months!

It's been a busy and happy month for little Elodie! On November 3rd she had her IFSP evaluation. (An IFSP is a family service plan for children with developmental delays. It's essentially "special education" services prior to being school age, at which point you get an IEP.) Three interventionists came out for the evaluation and went over my concerns. Primarily I worry about her consuming enough fluids and calories, being able to turn her head in all directions, lifting her head, and tracking things visually. They seemed to agree that these were all valid concerns. She was rated with a 25-32% gross motor delay, a mild adaptive delay (due to feeding concerns), and no delays in the areas of cognition, social-emotional, and communication. Of course, there is not a lot to go on in those areas so far, but she is meeting some important milestones like social smiling and cooing. Her interactions with me and others are very reciprocal. The interventionists all fell in love with her (and our dog who was begging for some serious attention throughout the entire evaluation), and it turns out the OT who was there has been assigned as her service provider. Elodie qualified for OT twice a month. We're thrilled that so far she's falling within the mild/moderate range. Remember how the doctors originally told us there was only a 5% chance of such an outcome? I'm a proud mommy!

The next big thing was Elodie's overnight pulse ox test to see if she still needed the oxygen. She set off those dang alarms so many times that night, and when we got the report from Apria in the mail, I thought for sure she'd be on oxygen until her 18th birthday. She had 74 "events" meaning that her blood oxygen level dipped below 89%. However, the pediatrician emailed about a week later and said things looked great. So we're done with the oxygen! She really is finally tubeless!!

And finally, the absolute biggest and best news of this month! On November 5th Elodie had a sedated MRI to check her blood clot. I absentmindedly scheduled it for a day that Noah can't go to preschool, so I had to drag the poor kid with us to The Children's Hospital. It was pretty awful because Elodie was not allowed to eat for 4 hours prior to the MRI due to the anesthesia. Of course they were running late so it really turned into 6 hours of fasting. Do you know how awful you feel as a mother when your little baby is crying and looking at you with a pleading "why won't you just feed me" look in her eyes? Seriously, it was miserable. After the procedure I met her in recovery while a hospital volunteer took Noah to an arts and crafts activity (no children allowed in recovery apparently). It was so sad to see her so loopy. They let me try to feed her, but she had zero coordination. The second they said it was ok, I strapped her in her car seat and hurried us all home where she finally got to eat. Poor girl. Our follow up appointment was on the 11th. Traffic and weather were absolutely terrible, and it didn't help that my washer fluid line was frozen, so I had to pull over several times to clear my windshield. However, the 4.5 hour trip (seriously!) back and forth was totally worth it. We learned the Elodie's blood clot is basically completely dissolved! Our home health nurse had met us there to change her catheter for the Lovenox shots, but instead she took it out for good. No more blood thinners! That means that Elodie is officially off of all the medications she came home with! I can't even describe how grateful we are to hear such amazing news! 

And now for the usual monthly milestones.

• Elodie is wearing a combination of newborn and 3 month clothing. We graduated her to size one diapers about half way through her second month.
• She is currently weighing somewhere around 11 pounds according to our home scale. On average she's been gaining about 7-8oz per week. 

Look at her grow!

• She is still eating breastmilk fortified with formula to make it 30 calories. She eats five 3-4oz bottles per day.
• Elodie is a great sleeper. She sleeps through the night, going to bed around 9:00pm. I wake her for a feeding between 4:00-5:00am, and then she sleeps until about 8:00am. She takes excellent naps as well. Usually she goes down around 10:00-10:30 and sleeps for about 2 hours. Then she takes a late afternoon nap ranging from 1-2 hours. She takes one final short 30-45 minute nap in the evening around our dinner time.
• Elodie is a big smiler! She started somewhere around 8-9 weeks, but they really got convincing after the 9 week mark. Sometimes when I'm feeding her she gets distracted and wants to just look at me and smile. It's adorable, but usually I think, please just eat kid! She also loves to smile at daddy and big brother. She really is a pretty happy baby!
• She really started cooing and "talking" this month. I love when I'm holding her and she stares into my eyes and we start talking back and forth. It's heartmelting. At times it makes me really teary. The day we found out something might be wrong, just before we had the big ultrasound, we picked Noah up from my brother's place. When he saw me, he got a big smile and yelled out, "Mommy!" I got really emotional in that moment because I worried that maybe my baby was going to be extremely disabled and would never be able to share a moment like that with me. So the fact that Elodie coos at me really makes me happy. She definitely can show how much she loves me.
• Elodie discovered her hands this month. She doesn't look at them, but boy does she love to suck on them! Her ability to get them straight to her mouth without bonking herself in the face is improving, too. We have offered pacifiers on occasion, but she often spits them out right away and then seems frustrated that she can't get them back. I will be just fine without a pacifier addicted child!

Let me at those hands!

• I feel like I've seen some improvement in her vision. She is starting to notice things that I shake in front of her. She also will slowly track toys and faces. When she looks at me, I feel like she's making better eye contact. Her ability to turn her head to the right is improving as well, and I wonder if the two issues have been a bit related. At this point, her OT and neurologist are both aware of my lingering visual concerns, so at least I feel like people are staying on top of it and will help me to advocate with my pediatrician and ophthalmologist. 
• Speaking of her eyes, they remain a vivid blue. For now. We'll see what the future holds there.

Overall, I'm amazed at how "typical" she feels to me, and I am so grateful and thankful. We're truly blessed and take nothing for granted with her.

Oh how I love this sweet face!

Happy Halloween!

I can't help but think back to a year ago. I was in the middle of my last ever two week wait (didn't know that at the time though!), and I had a miserable cold. Brian took Noah trick or treating while I rested at home on the couch. My FET ended up being a bust.

Now, one year later, Halloween was a bit more fun! Noah was a very generic Spider-Man, and although I find the whole super hero phase to be predictable and boring, he was SUPER excited to be Spidey! Elodie was costumeless, but she did have some cute Halloween pajamas to wear for the big night!

We trick or treated in a friend's neighborhood since we live in an area where it's just not possible. Noah got tons of candy and had a blast with his friend Max. Their neighborhood is filled with mostly older retired couples, and I couldn't help but appreciate the effort some of them put into making cute handcrafted treats! 

The scarecrow has a packet of hot chocolate and the sack has several packets of candy. Adorable! We also carved our pumpkin the night before. It wasn't fancy since we rushed it during the short 30 minutes we had between dinner and bedtime while Elodie napped. 

With Halloween over, it's now onto my favorite time of year, Thanksgiving and Christmas! And I'm feeling particularly excited to celebrate the holidays as a family of four!

2 Months!

Miss Elodie turned two months old on Thursday last week. She had her two month appointment that very day, so the lucky girl got to celebrate by getting her vaccinations. Boo. Her appointment went well. Elodie weighed in at 8lbs 10.5oz which is at the 2nd percentile. Her height was 21.75" which is at the 18th percentile. Her head circumference was 38.5cm which is now at the 58th percentile. Her neurosurgeon told me a couple of weeks ago that her head would probably stay fairly stable for a while, but it's still amazing to me that her head is average sized now. We are so thankful for modern medicine and the skilled neurosurgeon who placed her shunt! There were a couple of highlights to her appointment, and one concern. The good news was that the pediatrician gave us permission to stop feeding her on a schedule. I was so happy to hear this, because I knew from experience (sleeping through my alarm) that she could sleep a lot longer than 3 hours at night. It hasn't been long enough to establish a pattern yet, but a couple of nights now she has eaten around 9:00pm and woken again around 3:00am. Then she'll sleep again until 8:00 or so. Love it! The other good news we got was that her "green jaundice" has cleared. We were instructed to reduce the vitamins we give her, and she was allowed to stop taking her liver medication. Her enzyme levels are still off, but I guess they are getting better. Yay! The big concern at the moment is with her vision. I had noticed that she doesn't make direct eye contact. She looks at people, but she looks just above the eyes. She also doesn't notice something that you shake right in front of her, nor will she turn to look at something in her peripheral vision. And she doesn't track moving objects at all. The pediatrician confirmed this with her own brief exam and made a referral back to the ophthalmologist. However, she doesn't want to see her until 6 months which is unacceptable to me. I have a friend whose son has visual impairment, so she suggested I contact The Anchor Center for Blind Children to request a functional visual assessment. I will be doing that soon. 

Now for the bullets. At 2 Months, Elodie is:

• wearing newborn diapers and outfits
• eating 40-110 milliliters per bottle, and taking 6-7 bottles per day
• eating expressed breast milk fortified with formula to make it 30 calories per ounce
• starting to suck on her hands
• smiling! Faint smiles emerged during the 7th week, and really picked up in frequency at 8 weeks. She now smiles at people.

• starting to make sweet little cooing noises. She also makes the occasional excited squeal when she's really happy.
• hating tummy time

Like her brother, Elodie was born with blue eyes. At this point, they are still a very vivid blue. One of the NICU nurses was convinced they will stay that way and wanted to put money on it, but I'm not convinced. I am guessing they will turn brown in the future. We shall see!

Love that little face!

It's Not About Me

When we first found out about Elodie's hydrocephalus, and what they thought was holoprosencephaly, I went into some pretty heavy grief really fast. I had what are probably fairly common thoughts of "why me?" and "what did we do to deserve this?" I even asked my mom this question one day. I considered that maybe we joked about our friend's kids too much, or maybe I was being punished for gossiping with my coworkers about some of the kids we work with. Obviously I was just a bad person and this was my sentence.

After Elodie was born, and as time has gone on, I have realized these thoughts were incredibly flawed for two big reasons. First and foremost, Elodie is not a punishment. At all. In fact, she is the greatest gift I have ever received. I look at her and thank my lucky stars every day that I get to be her mother. If you have followed the story of Baby Shane at all, who was born and passed away yesterday from anencephaly, then you too are probably inspired by his parents who carried him to term knowing he wouldn't survive. I definitely counted my blessings a few times yesterday. Will we have some challenging moments? Yes, of course. But that's just part of life. We are never guaranteed our health, and God forbid, I would never love Noah any less if something were to happen to him.

But the second big reason my thinking was so flawed is the thing I can't stop thinking about. Elodie's hydrocephalus and other issues aren't happening to me. They are happening to her. She does not deserve any of this, and it's incredibly unfair to her that she is going to have to live with this condition her whole life. She is the one who had to have brain surgery at two days old, and will most likely have several additional surgeries in the future. She is the one who suffers the pain of having her catheter changed every 5 days. She is the one who has twice daily Lovenox injections which sting her poor little thighs. She is the one who screamed in pain after she had to have three veins poked on Monday in order to get one vial of blood to check her Lovenox level. Yes, these things are hard on me too, but it's she who really suffers. It's not fair, for her. And my sweet baby definitely hasn't done anything to deserve this.

The lump in the back of her head is her shunt.

The evil catheter that makes her scream, and what we inject the Lovenox through.

Closing a Chapter

I saw this quote somewhere in the last trimester of my pregnancy with Elodie, before we learned about her medical condition. It really resonated with me. Trying to conceive and fertility problems ruled our lives for several years, and it definitely had a significant impact on my happiness and sanity. I am so grateful that we have completed our family on our own terms. Last November I wasn't really sure that was going to happen. It still blows my mind that Elodie is here, and that somehow we were able to create her without any medical intervention whatsoever. It feels absolutely amazing to close the TTC chapter of our lives. It was so painful.

Brian and I have considered three children from time to time. Noah has been one of the easiest kids to raise so far, and he brings a lot of joy to our lives. So why not have more? But the reality is, TTC was and is fairly traumatic, and now I have definitely experienced what I would consider a traumatic end to a pregnancy and birth of a child. So yeah, we are done. There is no way we will ever actively attempt to get pregnant again, and that is so amazingly refreshing! It's like a huge, horrid weight has been lifted off of our shoulders. There is no better feeling than kicking infertility's ass!

At my 6 week follow up, I had to address the topic of birth control. Truth is, I seriously hate the pill, and I have zero interest in implanting anything anywhere inside of me. My answer then was condoms. Will we religiously attempt to prevent? I have no idea. We don't know just how much Elodie's conception was miracle and how much was the possibility that somehow we're actually fertile people suddenly (which would still be pretty miraculous), but I'm pretty sure it's still super difficult for us to conceive. So I guess we're leaving it up to the universe. And the universe seems to know what is best, because it gifted me my daughter, which alleviates the possibility that I might have had those nagging "maybe we should try for a girl" thoughts. But this is definitely the end of trying. We are complete. Thank you Universe.

I just want to say to any of you still stuck in the trenches, try not to give up. In the end, it is all so worth it. But if you must, know that I hope you are able to find peace and joy in all of your life's other endeavors. And know that I am deeply sorry for the grief and bitterness of not having the ending you hoped for. It is so unfair.

Appointments

When you have a child with a variety of medical needs, you have a lot of doctor appointments. Tuesday we went to see our pediatrician for Elodie's "two week well baby check." Had she not been in the NICU, we would have actually gone at two weeks. Well, at just over a month, Elodie finally broke the 7 pound barrier and weighed in at exactly one pound over her birth weight, 7lbs 1oz (1st percentile, she's on the chart!). Her length increased to 20.78 inches (20th percentile) and her head grew a little bit to 38.1cm (84th percentile). I shared the feeding issues (gulping, reflux, poor suck/swallow coordination) and we've now been referred for feeding therapy through Rocky Mountain Hospital for Children. I am excited about this because feeding Elodie is crazy stressful at times (although sometimes she does beautifully and it leaves us scratching our heads), and I'm also hoping that maybe eventually someone can help the two of us figure out breastfeeding. She absolutely hates the feeling of my nipple in her mouth. This is the biggest thing I'm sad about in regards to her challenges. Breastfeeding is so special to me and I was really looking forward to it again. When I start to feel down about it though, I remind myself that 6 weeks ago I would've been thrilled just to have a living, breathing (adorable) baby, so if we don't figure out nursing, so be it. Pumping is kind of crazy and it's hard washing so many bottles and pump parts all the time, but luckily I am kicking butt and producing well over twice what she needs/eats (about 50 ounces a day). Our freezer is full to the brim, so after I finish posting this, I am going to fill out the form I was sent to be a donor. If I can't nurse my baby, I'm at least proud to help someone else give their baby breastmilk!
Also at this appointment I found out that her Alpha 1 Antitrypsin level dropped to 76, so it sounds like that will be something to discuss with the gastroenterologist.

7 pounds of pure perfection!

On Wednesday we had an eye exam for Elodie. They dilated her eyes and then using an eye speculum, pried her beautiful blue eyes open and used a couple of tools to look inside. I left the room since Noah was with me, and honestly I don't know if I could have handled watching her being tortured like that. It was all good news though. Her optic nerve, retina, and cornea all look fine. Whatever it was specifically that the gastroenterologist was looking for (another symptom of Alagille Syndrome) wasn't a concern. At this point I think we've ruled it out since her eyes, spine, and heart have none of the associated defects. Thank God! I spoke with the ophthalmologist about Elodie's blood clot and since it's in the occipital lobe, she recommended that Elodie be followed every 6 months to evaluate her vision. If there is damage to parts of her occipital lobe, it could impact her field of vision. So add ophthalmology to our growing list of specialists!

Speaking of, next Thursday we have three appointments at The Children's Hospital to follow up with the neurosurgeon, gastroenterologist, and hematologist. The first is at 10:40am and the last is at 3:00pm. Talk about a crazy, long day. I asked Brian to please take the day off. I don't know how I would do it by myself, especially since I will need to find some time to sneak away and pump. (Again, oh how I wish we could just breastfeed. It's so much easier and convenient!)

Under One Roof

The NICU days are over! I can't tell you how excited we were to arrive on Friday and see the "HOME TODAY!" added to her daily update. She left the hospital at 34 days old weighing what Noah did at birth. :)

Last day!

Her NICU crib, empty!

Going home!

It has been a total whirlwind so far, and at times it feels a little overwhelming. We have several medications and vitamins that must be administered at different times of day, and it's hard to remember them all and the appropriate methods of administration. I also have no idea how to balance pumping, feeding, and cleaning pump parts and bottles while also making sure I get some sleep. Last night I ended up only getting to sleep between 1:30am-5:00am, although I woke up at 2:00 to make sure Brian would feed her at 2:30. Yup, I'm already exhausted, and yup, it's totally worth it! I know from experience that it doesn't last forever, and these days will be gone in the blink of an eye. Our family is now complete (more on that later), and I know that I need to cherish these days of having an infant no matter how hard they feel.

Noah has been a very good big brother. He really adores his little sister! Every once in a while he will walk over to the Rock 'n' Play and rock her or pat her head. He insists that she "wants her big brother" and has asked to hold her a couple of times. I really look forward to watching their relationship evolve over time. 

 

She came home on oxygen because we live at 8900 feet. It's common here, but after a month of her constantly being attached to cords and wires, I was really hoping she wouldn't need it!

When we found out Elodie was coming home, I told Brian that I would spend the whole weekend just staring at her and playing dress up with all of her new clothes. So far I am making good on that statement. We are so blessed!

One Month!

Sweet little Elodie turned one month old yesterday! I really wish we didn't have to celebrate in the NICU, but it is what it is. I'm just grateful she's here and doing as well as she is! A month ago we had no idea what to expect, and she is definitely making us proud! Little miss is currently tipping the scales at a whopping 6 pounds 11 ounces, which is only 10 ounces over her birth weight. Slowly but surely! Her head circumference is currently at 37.5cm, and the plates of her skull are overlapping like crazy. I really hope her head starts growing again so they shift back to a more normal appearance. If they should fuse too early, she will need surgery to fix it, and that's the last thing this mommy wants to experience right now! Elodie's hairline is also receding, so between her overlapping plates and bald forehead, I think she'll be wearing a lot of hats for a while. :)

Developmentally, I think she's mostly on track for now. She is able to hold eye contact with me, and can kind of track right to left. She has minimal head control and can kind of turn her head from side to side when on her tummy. Since most of her time is spent either feeding or sleeping, we haven't done much tummy time yet. I noticed yesterday that she is watching the mobile they have over her crib, and she likes to look at a light-up fish toy attached to her crib. The nurses frequently comment on how strong she is, which sadly makes all of the pokes she needs to endure fairly difficult. Brian and I will be responsible for changing her subcutaneous catheter for injecting her Lovenox shots. The catheter is placed into her thigh and needs to be changed every 5 days. It's so sad having to inflict pain like that into your baby! The nurse tried to comfort me by reminding me that I'm doing it for her own good and "you've got to be cruel to be kind." But I still hate it! Elodie is starting to make those adorable cooing newborn sounds, but with her limited awake time I haven't heard them a whole lot. When she is awake, she is often very content and kicks and flails her arms around. I remember watching Noah do the same. It makes me laugh because it looks like she is shadow boxing. Her feeding is going incredibly well. She almost always eats her required amount, and often eats more. If it weren't for a few labs that need to be drawn on Thursday, I'd probably be waking her right now to feed her a bottle in her own room! That's right friends, her tentative discharge date is Friday! Please send positive vibes in our direction that we get to stick to that plan! 

Day 20

Updating here is so much harder than I expected. My days are so insane that it's not easy to find the time. I wake up between 6-8 depending on when I last pumped and immediately pump again. Then I eat breakfast and maybe take a shower. Most mornings I leave the house between 10-11, then get to the NICU around 11-12. If I get there by 11:30 I do her feeding then pump again, and if I'm late then I immediately pump. I have lunch right after that, come back to wash pump parts, then cuddle my little girl til her next feeding at 2:30. I go through the same routine: pump, wash, snuggle, and then feed at 5:30. Then I either pump and leave, or just leave and pump the second I get home, usually around 7:30. Then I eat dinner and try to spend some time with Noah. I'm pretty sure he barely remembers I exist right now. Most nights he calls me grandma, and then I feel like I'm failing him for a good hour before I pump again and go to sleep. So yeah, finding time to write here is not always a priority.
Elodie is fairly status quo right now. A gastroenterologist saw her Tuesday and discussed all of the possible causes for her "green jaundice." He explained that 40% of the time they run a ton of tests, find nothing, and it just goes away with time. The other 60% of the time they find a problem. There is a liver disease that runs in my mom's family so they tested her for that. Her result was just barely in the abnormal range, which can occur in anyone whose body is currently stressed. They will run another test in a couple of weeks to look deeper, but the GI doc was not overly worried. He also mentioned a syndrome called Alagille Syndrome. It is often associated with bleeding disorders, vision issues, heart defects, spinal problems, and liver dysfunction. In order to rule in or out, they have done many tests. Her heart and spine look normal, and next week we will check her eyes. However, vision issues are extremely common with hydrocephalus, and the area where her blood clot is could impact her vision, so even if they find something it may not indicate this syndrome. So really no answers on the liver yet. She is having an MRI with contrast today to look at the blood clot. I hope we get good news there! She will also have blood drawn to check her direct bilirubin and GGT (liver enzyme) levels, and I hope we see a drop! Her poop has turned more yellow this week after having been a pale green color, so that indicates that her liver is passing more bile. Fingers crossed!
Eating is still a slow and painful process. She is getting better at nippling more of her bottles, but each time they need to use her NG tube, it starts her over again. The goal is that she takes 8 feedings in a row without needing any through the tube (called gavage), and then they will pull the NG and she will have to continue to eat well and show weight gain. The hard thing for her is that she's easily exhausted. For instance, yesterday she hadn't had the gavage all day, and then before her 5:30 feeding we bathed her and changed her port where the blood thinning meds get administered. Poor baby girl got completely tuckered out by all of that and promptly passed out after eating only 1/6th of her bottle. The rest was gavaged. So the clock starts over. I'm encouraged that she is more consistently eating entire bottles, but it's hard not to get completely discouraged at times. Every single nurse, doctor, and specialist we have seen continues to stress that this is the HARDEST part of many babies graduating from the NICU, but everyone is confident she will get there. We have discussed the possibility of a G-tube, but I really hope to avoid it. She's had enough medical procedures in her short little life and the fewer the better.

2 Weeks

I wish I could be writing these updates like I did with Noah, capturing all of the fun and exciting things my baby is doing. Instead, I have to document all of the concerning issues going on with my baby girl. Today's concern is with her liver. When she was first born, things looked ok. Then she started looking jaundiced so she got the bili light. I wasn't worried because Noah had jaundice too, and it's common when a mom has Rh- and a baby has Rh+ blood. About a week ago one of our doctors told us that her direct bilirubin level was climbing again, along with a liver enzyme called GGT. He guessed it was most likely because she hadn't gotten to eat a lot of breast milk following her surgery, and expected the levels to drop again. And they did. But today they drew her blood again and now the levels of both direct bilirubin and GGT are even higher. They did an ultrasound of her liver and saw nothing obviously wrong. This means that a pediatric gastroenterologist will be seeing her early next week, and they may need to biopsy her liver to get a better understanding of what is going on. The diagnosis for now is cholestasis. Excuse me as I go Google that and then cringe in fear. Can't this poor girl ever win? Oh, and don't even ask me about how she's eating. Words can't express how sick I am of talking about that.

NICU Day 11

Another cut and paste from our CaringBridge site.

Yup, still here, and no real end in sight. Brian and I went home last night. We could've continued to stay in a NICU boarding room, but being at the hospital 24/7 for 10 straight days makes you a little stir crazy. Plus we really needed some Noah therapy. Have I ever mentioned what an absolutely awesome kid he is? So grateful for all of the heartache that little boy has gotten us through!

Elodie continues to struggle with eating. That's about the only thing holding her back from being able to join us at home. It's really frustrating because there is nothing to do about it other than give her the time she needs to figure it out, and it's anybody's guess as to how long that will take. She had one good day on Sunday where she ate the majority of her bottles, and then her super eager beaver type-A nurse got it in her head that she was ready to lose both her IV and feeding tube. Well, she wasn't, so the tube got put back. The bottles they give her are 63-66mLs, and she eats 20-30 at best most days and the rest goes through her tube, although many feedings all go through the tube. An OT evaluated her today and thinks she might have some tongue coordination issues, but there isn't much to be done about that except to be patient and keep letting her practice. The good news we got today though was that she finally gained some weight. She had been losing for several days straight and weighed 5lbs9oz two nights ago, but last night she finally increased back to 5lbs13.5oz. It was a relief to finally see a jump because poor baby girl was starting to look sickly. They're supplementing my milk with a high calorie formula so hopefully that is helping also. In addition to her difficulty eating, she also seems to be struggling with reflux and often throws up much of her meals. It's so hard to be patient as we figure this all out, but that's what we have to be. She runs the show, and isn't that what having a daughter is all about?

Looking at the big picture, had we known 2 weeks ago that the biggest issue we were going to be facing was eating and gaining weight, we would have been thrilled. She's doing remarkably well in all other facets of her health, and for that we are so thankful. But it doesn't make this easy.

Elodie's Progress

I set up a CaringBridge site this week, so I'm just cutting and pasting my last two updates to make it easy on myself. Enjoy!

8/20/14:

Elodie had her first ultrasound shortly after birth. That night one of her doctors came to explain to us what they found. Her ventricles were indeed filled with quite a bit of cerebrospinal fluid. Another concern mentioned prior to her birth was that the corpus callosum and septum pellucidum were not present in her prosencephalon (the front portion of her brain). That led them to believe she could have a condition called holoprosencephaly, a very scary diagnosis. However, the new ultrasound showed that both of those structures were present, just thinned from the excess fluid. So, she does not have holoprosencephaly. Such a relief! They also found a clot in the sinuses of the occipital horns (I think that's what they said), which is in the back of the brain. This is not related to the hydrocephaly, but is another issue that must be addressed. In order to treat the hydrocephaly, Elodie needed to have a shunt placed into her brain which drains into her belly. You can read more about shunts here:  http://www.healthline.com/health/ventriculoperitoneal-shunt#Overview1
The next day she had an MRI and CT scan performed to get a better look at everything. Again we got good news. Elodie actually has a great amount of "cerebral mantle" or brain tissue present in all areas of her brain. As the fluid drains out, her brain matter should "fluff up" and re-expand, although there are no guarantees as to how much. There are also no guarantees about damage that may have been done to the existing brain tissue. They determined the cause of the hydrocephalus is a condition called Aqueductal Stenosis, and of all of the conditions that could be causing it, this is one of the best of the best. Prior to her birth, they gave us the following prognosis: less than less than 1% chance of typical development, 5% chance of mild disabilities, 95% chance of moderate to severe disabilities. Now with her new diagnosis the prognosis is as high as a 40% chance of typical development. WE WILL TAKE IT!
On Monday, August 18th Elodie had her shunt placed into her brain and belly. It went flawlessly, and we can already see the changes beginning in both her head size and shape. Modern medicine is so amazing! Prior to surgery her head circumference was somewhere around 40cm, and last night (2 days post shunt) it was measuring 38.3cm! I've attached some of her MRI photos, and a before and current head shot. 

Cross section view

View from top down. The black spot in the back is a blood clot.

Pre-surgery

Post-surgery, and "caving in"

8/22/14:

Elodie continues to do pretty well. Her head continues to decrease in size each day. She started somewhere around 40cm, which is not even on the charts (beyond the 100th percentile). As of yesterday evening she was down to 37.1cm, which is now on the charts around the 90th percentile. It's amazing and a little bizarre to watch your infant's head change size and shape so drastically from day to day. Her weight is remaining pretty stable since birth, which is due in part to the amount of fluids that were pumped into her prior to her surgery.

Today the word "home" was brought up several times. As far as Elodie's hydrocephalus is concerned, that is being well controlled by her VP shunt. Another issue we're working through is a blood clot that is present in the back of her brain. On Wednesday she began IV Heparin therapy to thin her blood and prevent her clot from growing. As of tonight, she has been switched over to a different drug, Lovenox, which is being administered through subcutaneous shots. The placed a port into her right leg to administer those shots, and when she goes home Brian and I will administer them ourselves. We're not really strangers to this stuff as I have taken Heparin many a time when we were going through infertility treatments. The crummy thing about Lovenox is that it stings and bruises, and even with the port eliminating all of the needle sticks, the nurse said it probably still won't be too comfortable for her. :( Once they determine that she is getting a therapeutic level of the drug, then that situation is also fairly well controlled. So her last hurdle to going home is her feeding. Currently they want her at 36mL every three hours. The goal for discharge is 45mL. Right now we're lucky to get her to take 20, although she has taken up to 33. Her ability to nurse has been demonstrated a couple of times, but usually once she's in my arms or lap it's a quick trip to lala land. Brian is having more success with the bottle, but she is slow and they put her on a clock. Whatever she doesn't eat by mouth in 30 minutes gets put into her NG tube. I feel like this is going to be her biggest hurdle to face before coming home. Babies with hydrocephalus frequently have difficulty with feeding, so if this is the tough thing she has to go through, I will take it. We hope that she starts to get the hang of eating, because if she does, she could be home by next week! Cross your fingers with us!

My sweet little peanut

Elodie's Birth Story

I guess it began Thursday evening. I noticed that I was getting pains that more closely resembled menstrual cramps than Braxton Hicks contractions. They felt painful low in my pelvis, and burned and ached quite a bit. Friday morning I woke up and they were gone. However, throughout the day they showed up off and on. When I went to bed Friday night they were kind of bothering me more regularly, but I didn't think too much of it. I tracked them on an online contraction timer, but they were pretty irregular. Brian noticed that I was timing and told me to let him know if anything serious was happening. Saturday morning I woke up very early, around 1:30am, to a more painful contraction, and then they continued. They were still primarily located low in my pelvis, and not really radiating upward or downward, so I wasn't too sure what to make of them. But they were getting more frequent. Around 3:00 I decided to head downstairs and pre-register for the hospital, just in case. I also began timing my contractions. They were coming pretty erratically, anywhere from every 4 minutes to every 12 minutes. But again, they were really starting to get uncomfortable. I considered calling our nurse advice line, but then things started spacing out further, from 18 minutes to 32 minutes. At that point, it was 5:00am and I decided to go back to bed. I woke up around a quarter to 9:00am to another painful contraction. I got up and joined Brian, Noah, and my mom who were all watching TV. (Ok, my mom was actually cleaning, and should get credit for that.) I made the conscious decision not to eat or drink anything because I was really starting to suspect that this might be it. By 10:00am the contractions were back on a more regular schedule. After a while I headed upstairs thinking it would be smart to shower, but once I got into the bathroom I was concerned that maybe it was actually a really bad idea. Instead I finally decided it was time to call a nurse. Since it was a Saturday, our clinic system was on after-hours mode and it took 15 minutes just to get through to a receptionist. I explained that I thought I could be in labor, so she flagged me as "high priority" and patched me through to OB nursing. "High priority" my ass! I sat on hold for another 15 minutes, and by this time contractions were consistently 3 minutes apart and required concentrated breathing to get through. I should have trusted my instincts and just hung up at this point, because the nurse didn't even question me. She asked if I could head to a different hospital as the one I was going to was getting very busy, but when I explained that I was scheduled for a c-section there for the 18th, she told me to go and they would be expecting me. Brian and I threw some things into a suitcase (we were planning to pack later that day), kissed Noah goodbye (he clung to me and cried and cried), and headed out. 

The road we live on connects to a major highway that leads to the mountains. Well, this was a Saturday morning which is a popular time for people to be heading west. We were about the 5th car in line waiting to turn left to head east, and a steady stream of cars were slowly heading west. It didn't help that about 100 yards down the road to the west, a police car was pulled over with lights on. It took what felt like forever to finally get onto the highway. Once we made it, we had about a 45 minute drive ahead of us. About 10 minutes into the drive, I started to become concerned. The contractions were consistently 2-3 minutes apart, and lasting a little over a minute each. And they HURT. I really had to focus on my breathing. Keep in mind this is a bit of a twisty, windy road, so there is a lot of shifting from side to side. Not comfortable when you are in active labor! After about 30 minutes we were getting close to downtown Denver. I was starting to feel panicky. Things were really feeling intense and I went from just breathing through contractions to moaning loudly. Brian was clearly getting more and more nervous about me. He was so irritated by any little thing people in front of us did. If they didn't immediately floor it after a light turned green, expletives flowed. As we neared the hospital, I finally admitted that I wasn't sure I would make it. I think that really freaked Brian out. We finally made it to the parking lot for L&D, and of course the one open spot was somewhat blocked by some idiot who illegally parked their giant SUV. Brian had to make several maneuvers to get my car in, and the whole time I felt like I was dying. He ran to my side of the car and opened the door, but I was in the middle of a contraction and had to wait. We walked as fast as I could, and Brian ran ahead to get a wheelchair. I waddled into the triage room just as someone was coming for me, so they brought me into the back and got me into a room. I could barely talk and my whole body was shaking uncontrollably. In my head I thought, "C'mon people. Just look at me. I clearly need to be admitted STAT!!!" A nurse helped me lie down and did a quick cervical check. I could tell by how far she was reaching that I was extremely dilated and baby was low. I got another contraction and felt like I needed to push. She told me that whatever I did, do NOT push. Then she ran out of the room and asked them to get me a room immediately. "She's 9cm and her bag of water is bulging." This comment didn't surprise me, but it still scared the shit out of me. The nurse came back and talked me through another intense contraction. My body wanted to push so bad, and the only thing that truly helped me not to was the fear of what could happen to baby if I did. She began wheeling me up as another nurse was calling up to L&D to explain the situation. I overheard her say, "History of hydrocephalus, history of c-section." I was having another contraction, so I began shaking my head and pointing at my stomach to say, "NO, THIS baby has hydrocephalus and I need a c-section NOW!" They did not pick up on this, so I was wheeled to a regular delivery room. I was so out of it, but I knew things were not right. Luckily a doctor came immediately and she was able to clear everything up and got me into a triage room. There they hooked me up onto the monitors, got my IV in, and began tracking everything. Initially they couldn't pick up Elodie's heartbeat, and I was so scared, but Brian directed them to the spot where our OB nurse had picked it up earlier that week and immediately we heard it. However, with each contraction she was having major decels which dipped into the 60s. They explained that we needed to get to OR immediately and rushed me out while they took Brian to change into scrubs. As they wheeled me into the OR, the anesthesiologist asked how much time he had to prep. The doctor replied, "2 minutes!" I had to scoot off the bed they wheeled me in on and onto the one I would deliver on. Oh my god that was so hard with the pain I was in. As soon as they got me onto the bed, they sat me up and bent me over. The anesthesiologist told me I would feel two quick stings, and then the spinal would go in. As he worked they tried to get my shirt off, but it was hung up on my IV so they had to leave it hanging off the IV line. It was like a total circus. They laid me down and stretched my arms out. I think someone made a joke that I was being crucified. I felt someone holding my left arm and finally turned hoping to see a kind face. It was Brian! I had no idea he had even come in. He must have been too in shock to say hi. The anesthesiologist began brushing something cold on my legs and abdomen and asked if I could feel. I could, so he waited another minute or two and then I wasn't able to feel it in all the right places, so he gave them the green light. And just like that, they began the incision. From the time they wheeled me into the OR to that point had to have been no more than 7 minutes. I felt quite a bit of pressure as they worked to get her out. I think she was feet first, so they really had to dig to get to her head which was way up by my ribs. It was fairly uncomfortable, but not painful. And then, she was out. She didn't cry right away, but Brian assured me that she was looking around and alert. Then she cried, and it was the sweetest sound I have ever heard! It was such a relief, because a good cry meant that we did not need to have the "resuscitate or not" talk. Thank GOD! Brian got a good look at her and came back to tell me that she was cute and her head didn't look any weirder than his. (Brian has a giant noggin.) They cleaned her up and she earned Apgar scores of 8 and 9. That's even better than Noah! Nobody had ever said boy or girl, so I asked Brian to please confirm that she was really a girl. Never having seen an ultrasound image with my own eyes, I was still in quite a bit of disbelief that she could be a girl! And yes, they did confirm it, and in that moment I thought, "Oh my God, I have my Elodie!" Sweet, sweet relief! 

In all of her "fresh out of the womb" glory!

After they got her cleaned up they handed her to Brian and began sewing me up. At some point they took her off to NICU and Brian decided to stay with me. I was wheeled to recovery and after two hours we finally got to go to NICU to see her. As they wheeled me over we saw my mom, step-dad Ed, and Noah waiting for us. We all went in together, and then I got to hold my girl!

They encouraged me to attempt to nurse her which I was so excited about! I really didn't expect that. She was definitely interested, but as I expected, I remembered nothing about how to breastfeed. We struggled together to get a latch, but with plenty of persistence we finally succeeded. She suckled and nursed on and off for about 20 minutes, stopped, and then tried again for 5-10 minutes more. By then it was about 6:00pm and they wanted to take me into my own room. I kissed Elodie goodbye and off I went.

When I found out I was going to have a c-section, the one silver lining was that I wouldn't have to drive down the mountain in labor for an hour. Well, so much for that! In some respects, I love that my baby and my body made the decision of her birthday, and not a doctor. But wow, it was one intense experience! From the time we arrived at the hospital to the time Elodie was born was maybe 40 minutes. Talk about cutting it close. And I have to say, although I wasn't allowed to have a vaginal birth, I am pretty impressed with and proud of myself for making it all the way to 10 with no pain relief. I never experienced natural labor with Noah because I was induced, so I'm kind of glad I got as much of the experience as I could with Elodie. But would I like to do it again? Um, no! 

It's getting late, so tomorrow I'll try to bring you all up to speed on our first 4 days living the NICU life. Although I should probably at least tell you that her surgery went flawlessly, so THANK YOU to everyone who prayed for her or kept her in their thoughts. It worked!