Amazing, awesome day….Emily came home!!!!! She had a great night, gained weight, ate like a champ and docs were ready to discharge her this morning. Bryan had to work today, so I went to the hospital to handle all the discharge stuff (lots of paperwork, oxygen company came out to teach me how to use her oxygen tanks, cleaning out all her stuff, goodbyes to our favorite nurses, etc.). After all that, her awesome nurse Theresa helped me get all her stuff to the car, and we were off!
Emily did great on the car ride home- slept the whole time 😉 And once we got home, we quickly relaxed into a sleep, change diaper, eat schedule, minus all the machines/wires/beeps /people/etc. of the NICU. Bryan got home in the early evening, and we promptly experienced our first real diaper blowout…and Emily’s first bath at home! The rest of the day has been spent napping, eating, and exploring Emily’s new surroundings.
We feel so incredibly blessed to have so much support– the last few weeks have been the most difficult, scary, anxiety-filled of our lives, and we know we wouldn’t have been able to do it without all the love and encouragement from our friends and family.
Rooming in with Emily last night was awesome! It was the closest to a “normal” night we’ve had since she was born- we woke up with her when she woke up to eat/be changed, didn’t have a nurse coming in to check on her every couple minutes, etc. We still had to call the nurse and check in throughout the night, and keep an eye on Emily’s monitors, but just being able to be with her all night was amazing 🙂
Big news from today is that we’re still on track to go home tomorrow, Sunday the 1st!! As long as nothing crazy unexpected happens, and she doesn’t lose weight (needs to stay the same or gain), we should be ok to go home. She still needed to pass her hearing re screen and her car seat challenge, and she passed both no problem when we tried them this afternoon! And, after calling the night nurse (who checks Emily’s weight each day), we found out she gained weight! She was 2525 grams on Friday night, and 2590 grams tonight! Go Emily!
We’re trying to be happy and excited, but also keep in mind that something may happen and she may not be able to go home tomorrow. Having a baby in the NICU is a crazy, emotional experience, full of tons of ups and downs, and it is really hard to navigate the stress, anxiety, and emotions that come along with the experience. So we’re going with being cautiously optimistic about her coming home tomorrow, and hoping for the best.
Another busy day today! Emily was evaluated by physical therapy this morning, and all looks good. We were shown some massages to do to help her belly keep things moving along 🙂
Emily continues to do well eating, and is on a full ad lib/on demand eating schedule (so she can eat whenever she wants, and as much as she wants). As long as she continues to gain weight, and nothing drastic changes over the next two days, she will hopefully be able to come home on Sunday or Monday! We are so excited to finally be seeing a light at the end of the tunnel 🙂
Emily also had her hearing screen today, but unfortunately, didn’t pass. They will come back tomorrow to re screen her. If she doesn’t pass, we will have to follow up with an audiologist in a few weeks. Hopefully she’ll pass though! We also tried to do her car seat challenge, which she did not pass. She made it about an hour of the required 90 minutes, then her oxygen levels started to drop, and she had to be taken out of her seat. Like the hearing screen, we’ll try again tomorrow and see how she does. Fingers crossed for 2 passes tomorrow!!!
Also, we get to stay in the “rooming in room” with her tonight (a private room, with a bed for us, and all the hookups for Emily’s monitors and medical equipment). We’re very excited to be able to spend what is the closest to a normal night with our daughter since she was born, where we provide all her care throughout the night, rather than a nurse coming in and out constantly. We’ll see how it goes, but again, we’re really excited!
Busy day today! When we got in to the NICU in the morning, Emily’s nurse talked to us about moving her to an ad lib feeding schedule (basically, letting her eat when she wants to), which is really exciting as it’s more of what a typical term baby would do. We talked to the doctors during rounds about it, and they approved! She did great feeding all day, some feeds by bottle and some nursing, and we’re excited to see how she continues to do.
Our nurse also had me bring Emily’s car seat upstairs for her car seat challenge, and make an appointment with Em’s pediatrician for Tuesday, in anticipation of discharge some point before then. Things may still change, nothing is ever certain in the NICU, but it looks like we’re getting really close to having our daughter home with us!!
The doctors seem to be happy with how Emily is doing overall, and she’s gotten back on track nicely after the drama of this past weekend. We still don’t know exactly what caused her belly to get so big, but think she may have eaten too much 🙂
I also went and got Emily’s birth certificate today…makes her being here much more real and “official.” We needed to get that done to get her added to our insurance- and thank goodness for insurance, as NICU stays are not cheap by any means!!
I’ll keep updating as things progress, but hopefully we’ll be taking our little girl home here shortly!
Yay for another good day!! Emily continues to eat all her milk by bottle or nursing, which means her feeding tube gets to stay out (it was due to be changed today, so they are just leaving it out as long as she keeps taking her feeds). We are so happy that she’s doing so well with her feedings!
We’re hoping that we can start checking more things off the list to go home soon…it takes a lot of time to make sure Emily is totally ready to be home, but we’re feeling more and more like it’s almost time for her to be home 🙂
We stayed at home last night, which was weird, but also kind of nice. Sleeping in our own bed and getting dressed without digging for clothes in a suitcase was really nice. A little sad seeing all of Emily’s stuff not being used, but we know it’ll only be a matter of time before she’s home with us!
Another good day! Emily is continuing to take her feeds by bottle, and happily gulps them all down 🙂 Her belly is remaining small and soft, which is exactly what we want to see. She is SO much happier to be able to eat again…poor girl missed her food!
All of her IV fluids have been stopped and antibiotics stopped. The IV is still in just in case she needs it again soon, but will hopefully be taken out tomorrow.
And…Emily passed her room air challenge!!! She needed to go 45 minutes breathing room air only (no oxygen), and she went hours. She went long enough that she was able to have the nasal cannula taken out 🙂 It was so nice seeing her with one less tube! She may need the cannula again, especially as she gets closer to eating her whole feed (she’s at 20/50mls), because her belly gets so full it pushes on her lungs and she can’t breath as well, but, it’s still one more thing crossed off her going home list!
Bryan and I are going back to the house tonight for the first time since Emily was born. This is something we’ve gone back and forth on…in some ways, it sounds like a good idea, and could be really nice to sleep in our bed and get dressed from drawers/the closet instead of a suitcase. But at the same time, it’s really hard to be so far from Emily in case something were to happen. We’ll see how it goes though!
Today was a much better day for Emily 🙂
Her belly continued to soften and get smaller throughout the day, and at 6pm, we were allowed to start feeding her again (yay!!). We started with a really small amount- 12mls. of the 47mls. she was getting before, but it’s something. And for her, it was like heavens gates opened– she was SO happy to be able to eat!! Which, in turn, makes Bryan and I really happy. Emily was so frustrated and upset the last couple days, so it was great to see her happy and content again.
The plan now is to see how she does with food, increasing the amount every 12 hours or so, and watch her belly closely to make sure she doesn’t get distended again. We are also still waiting on the results of her blood and urine cultures, so we can completely rule out infection. We should have the results in the morning…really hoping it’s not an infection, and that she just got a little constipated 😉
Emily also got to meet some of her cousins today- Bob, Sue, Monica, Kyle, and Jonathan. I’ll have to add some of those photos later though. She was a bit cranky when they were here, as she hadn’t started eating at that point, but still nice for her to meet some more family. She also got some time with Grandma Janet, who leaves to go back home on Tuesday morning.
The doctors are still trying to figure out what’s going on with Emily’s belly. While her belly is still distended, it’s starting to soften up as things move through, which is good. She’s on IV fluids and antibiotics to treat possible infections while we wait for the blood and urine culture results (they take 48 hours to get back). She’s had to have a few more blood draws today- luckily all were heel sticks which are much easier on her than drawing blood from a vein.
She is still NPO (can’t eat), and is starting to get really mad about it…she is fussing and crying much more than usual, and is going to town on her pacifier, trying desperately to get something out of it 😦
A positive note from today was that she was off her oxygen, and on room air, for about 2 hours successfully, which was exciting! Her little lungs are getting stronger each day 🙂
The plan is to keep monitoring her, checking her blood/labs, doing X-rays to check her belly, until we have a better idea of what’s going on. There are many things that can cause what she has going on with her belly, all the way from the not-so scary (needing to poop/pass gas) to the scarier (an infection). We’re hoping and praying for the not-so scary!
Not such a great day for little miss Emily today 😦
Emily gave us a bit of a scare when we got in this morning. The nurse on her case let us know that the night nurse was concerned about the size of Emily’s belly, and the doctor ordered an X-ray to check for NEC (Necrotizing Enterocolitis). Luckily, it looks like she’s in the clear for this, but she will continue to be monitored closely.
As the day went on, her belly continued to grow, and got harder. A few more X-rays were done, and showed a large build up of air throughout her intestines. We had to stop feeding her (so it wouldn’t add anything to her belly issues), do a heel stick for blood for labs, give her an IV for fluids (sweet girl is a trooper– it took 3 sticks and one blown vein before the nurse got success in her foot), put an OG (larger size) tube down her throat, into her stomach, to suck out air, etc., and give her a suppository. She was not a happy camper, but dealt with it all pretty well considering how uncomfortable she must have been feeling. The big concern is that she could develop an infection, which can be very dangerous for babies, and especially for preemies.
Later in the evening, a repeat X-ray was done, which showed more air build-up. The doctor decided to do a blood and urine culture. Blood had to be drawn in 2 places, and unfortunately, her little veins weren’t cooperating and they ended up having to draw from a vein in her scalp 😦 The urine culture was also an ordeal, as a catheter has to be placed for this (which is not a comfortable feeling!).
Bryan and I finally left the hospital late last night, and called every few hours to check in. Luckily, labs so far show no signs of infection. We’re hoping that she just needs to pass a lot of gas, and that there are no serious blockages or issues which would require more intervention. This said, we would really appreciate extra thoughts and prayers for Emily to move past this hurdle quickly!
Emily had a pretty good day today! She grew (up to 2455 grams, or 5 pounds, 6.5 ounces), and took 50% of her feedings by breast or bottle 🙂
We have started face timing with Bryan during the day, and it’s really adorable to see her look around to find his voice, and then look at the iPad at him talking to her. She really knows both Mom and Dad’s voices already, which is pretty amazing. She’s able to roll her head from side to side now, and also adjusts her neck on her own now, to open her airway, which is really good, as she wasn’t able to do that before, and her oxygen levels would dip down low unless one of us or a nurse adjusted her neck/head position for her.
The plan now is just to keep working on feeding! And growing more 🙂