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.