Day 72

Emily is back on caffeine, which only means that when we do come home with her that she'll continue the caffeine doses and will be on an apnea monitor until she outgrows the need (usually 1-2 months). After a lengthy discussion, the doctor decided to do a trial dose of caffeine to see if it made a difference. It did. The number of spells she was having decreased and they weren't as bad. Because she wasn't putting as much energy into fighting the need to breathe, she has been able to put her energy into doing something else important, eating! Over the past 36 hours Emily has taken most of her feedings on her own and only occasionally tires out and has to be fed through her tube.

Day 71

Emily's oxygen desaturation spells are getting worse and becoming more frequent. The doctor ordered that her rates be recorded for two hours this morning to see if there is a pattern to it all. Could be that Emily goes back on caffeine which means that when we do go home she would go home on a monitor and stay on the caffeine until she outgrew the need for it. It could also be the acid reflux is just getting worse because she's getting fed so much more and there hasn't been enough days for the medicine to be fully effective. Still waiting for the verdict from the doctor.

Day 70

The only change from today is that they will be switching her over from zantac to prilosec to see if it reduces the acid reflux any. She weighed 4 pounds and 14 ounces today.

Day 69

Nothing new planned for today. Just hoping the frequency of the oxygen dips decrease, or we're not going home anytime soon. Still working on feeding. And yesterday we were an ounce away from 5 pounds, but she lost weight overnight so now she's 4 pounds 13 ounces.

Day 68

Not a lot changed today. They did stop the caffeine this morning and took her PICC line out this afternoon. Still working on sucking, swallowing, and breathing!

Day 67

The nurse practitioner actually mentioned the home word today - as early as next week!
Today they took her off of caffeine, hoping that she is mature enough to breathe on her own and that without it, it will reduce the acid reflux and decrease the oxygen dips. On Monday, she took 20% of her feeds by bottle, yesterday she took 40%. It will take 5 days for the caffeine to be completely out of her system, if everything goes perfectly and Emily can start eating 100% of her feeds by bottle (still having to measure the exact amount she eats), then it will be time to start thinking about a car seat stress test, taking the feeding tube out of her nose (she has to go two days without it and gain weight), and rooming in. Rooming in is where Emily will spend the night with Aaron and I in a hospital room, still being monitored, but with us doing all of her cares, etc. There's still A LOT that Emily has to accomplish, but the fact that they even mentioned the home word is exciting.

Day 66

The only expected change for today is to put Emily back on Zantac. Now that we are almost back to full feedings the acid reflux is back and she's starting to have more spells where she holds her breath and her oxygen levels dip. Otherwise, we're still working on bottle feeding and the suck, swallow, breathe sequence.

Day 65

Not a lot of changes today. She continues to completely digest her food, so they will continue to increase the amount that she gets. Right now she's eating about half of a full feeding. So hopefully she'll go off of the IV fluids tomorrow and they will be able to take the PICC line out of her arm.

Day 64

The feedings are going okay. She's digesting it all, which is great. The bottle feeding is so so, it really depends on how awake she is. So far she hasn't shown any signs of the NEC causing any issues. However, I think the acid reflux is returning now that she's eating more.

Day 63

Emily took her entire feeding from a bottle this morning (meaning one third of an ounce), but was too sleepy for the next two feedings to even attempt bottle feeding. For now, she'll only eat from a bottle so that they can measure exactly how much food she is getting. So far so good on digesting it. Every twelve hours the amount gets increased three more ounces and she went off the formula and is back on breast milk.

Day 62

The big change today was from the isolette to the crib. I ran out of excuses and the doctor actually wrote it in her orders, so...
But Emily is doing well. I've been working with the occupational therapist in getting her to suck from the bottle, the doctor increased her feedings to 8 mL every three hours, and Emily had another bath today. She's all worn out from the excitement! She now weighs 4 pounds, 7 ounces.

Day 61

We're off to a slow start on the feedings. The doctor did increase the amount that Emily is getting to 5 mL in hopes that the extra amount will help her digest the food quicker and easier. At each feeding we begin by offering her a bottle, which at this point she is not very excited about and the majority of her food is feed to her through the tube in her nose.

Day 60

Emily had her first meal, 2 mL of formula that is easy to digest, at 1:00 this afternoon. She ate again at 4. It's a small amount, but so far, so good.

Day 59

Emily is 4 pounds, 4 ounces today. A new baby came into the NICU, so we gave up the giraffe bed and got moved into an isolette which still has a top and four sides to help block out noise. She will get to eat for the first time tomorrow, so it was a group decision to not put her into the crib until after her feeds get established. Too many changes at once is a big deal to a preemie. The quieter it is for her when she starts to eat the better. Otherwise, Emily has had a very stable week so far. The NICU staff is pretty excited about how good she looks compared to a week ago. Everyone is enjoying the fact that her head is free of tubes and wires... that ends tomorrow when she'll have the feeding tube again. I think Emily is getting a little hungry, which is a good sign.

Tub Bath

Day 57

Emily almost got moved into a crib today for a trial run, but we decided on a bath instead. It's easy to get her out of the giraffe and hold her without any help, so she's been in my arms a lot over the past three days. Little did I know that's a good indication that she could handle the openness of a crib. My guess is in the next couple of days she'll be moved again, especially if someone smaller comes along.

Day 56

A quiet day in the NICU. Emily continues to do well without oxygen support, a few dips overnight but she was able to bring her oxygen levels back up without help. She is now almost 17 inches long and weighing a little over 4 pounds.

Breathing like a big girl

The respiratory therapist took Emily off the nasal cannula at one o'clock today, and since then she has been breathing all on her own!

Day 54

Emily is down to minimal support from the nasal cannula. The next step is to take her off of oxygen support altogether. She is also off the temperature probe, so it's up to her to maintain her own temp. That means that they will soon be moving her out of the giraffe and into a crib. Her antibiotics ended today, but it will be a few more days before Emily can try eating again. It was a great day for her, no spells once again. And we were finally able to put clothes on her! Believe it or not, the preemie clothes are a perfect fit, and I don't think it will be for long. She's an even 4 pounds at this point.

On a side note, we were moved to a different room last night after Emily's roommate was diagnosed and later passed away from NEC. It's frightening to think that was our same diagnosis a week ago, and in 48 hours the little girl came down with it, went through surgery, and still didn't survive it. Just a reminder that there is no easy road in the NICU.

Day 53

Emily is doing really well on the nasal cannula. She hasn't had any spells in the last 24 hours, so they are now attempting to turn down the support she gets from the cannula. Her X rays continue to look good. She lost 14 grams overnight, but nothing to worry about.

Day 52

Busy day for Emily. Started off with a bath. which she hadn't had in a week, followed by being taken off the vent at noon. She has had a really great afternoon on the cannula, and she was quite pleased to be reunited with her pacifier. She lost a little weight overnight, which is actually a good thing considering she had been puffy over the last few days. She weighed 3 pounds and 15 ounces this morning.

Day 51

Still on the vent. The goal is to go straight from the vent to the nasal cannula to avoid the cpap since it would pump more air into her stomach. The Xrays show improvement, so today is counted as day 1 of normal intestines. So, that means 7 more days of antibiotics and no feedings. She has been stable enough that Aaron was able to hold her yesterday. The transition from bed to holding was a little rocky, but Emily settled in quickly and was quiet for over an hour.

We had our care conference with Emily's team yesterday. Overall, the report was good and it isn't unreasonable to think that we may be out of here in a month. She has to eat without a feeding tube for two straight days and show weight gain, easier said than done because preemies burn so many calories sucking and swallowing that they don't always gain weight. Emily will have to have fortified food just to meet her calorie requirements. She also has to go 5 straight days without any apnea spells. Lastly, she has to maintain her temperatures. She did cross the 4 pound mark yesterday, but we're not really counting it since it's more than likely fluid.

She's due for an eye exam, which had to be postponed due to the NEC issue last week, and she will have a hearing test before we are discharged. Her lungs will have some damage due to the ventilator, possibly asthma, and it is to be expected that Emily will use a nebulizer for breathing treatments. This will probably be a temporary thing. Liver and kidneys look good. She'll more than likely go home on oxygen because of the altitude difference between Boise and Hailey. And we will qualify for some in home care which will be helpful since it will save us a trip or two back to Boise. We talked more about meeting with a development team that will follow Emily until she is two to make sure she is meeting milestones correctly. and they'll go longer if it is decided that there are some complications. So far, there is no evidence that any of Emily's issues will be long term.

7 weeks old

The question of the day is whether Emily is upset because of the pain caused by the NEC issue or if it comes from being on the ventilator. She has been on the vent for almost a week, more than the doctors wanted her to be on it. The decision was made this morning to start reducing her pain meds and decreasing vent support to slowly wean her off of it, even if it causes her to have some spells where the oxygen dips. The nurses were able to move her back into a giraffe bed last night, which seems to make Emily a little happier with her environment.

She weighed 3 pounds, 15 ounces this morning, so she's close to the 4 pound mark. However, some of that is extra fluid, so maybe by the end of next week she'll cross another milestone.

Day 48

Emily is still extremely sensitive to noise and light. Maybe just the warmer that she is in, but there are no giraffes available right now (giraffe being the bed that is enclosed to protect her from noise and light). She's also getting more blood today and the doctor ordered an ultrasound to see if there's something that is being overlooked. Emily is puffy, especially in the eyes, and she's not giving much effort into breathing over the vent settings. The respiratory therapist just gave her a drug to see if it will open her airways a little more to make things easier. They had given her a different variety yesterday that shot her heart rate over 200 for a few hours. Since she's having another tough day, the doctor increased her her pain meds again, but she did open her eyes a few minutes ago.

Day 47

Emily was extremely sensitive to light and noise today. Most of the time she slept peacefully, but whenever nurses or doctors disturbed her she dropped her oxygen levels rapidly. They increased the amount of morphine she was receiving and think that her pain was the cause of the sensitivity. However, even with the increased dose, she still didn't tolerate her cares (diaper changes, position changes, suctioning, etc.). Taking her off the vent was delayed a day or two. The Xrays are looking good, but still aren't normal yet.

Day 46

It seems like we are sideways stepping. Emily appears to be feeling better regarding the NEC, and is becoming more active. Therefore the nurses are keeping her lightly sedated so that the ventilator tube doesn't aggravate her as much. At this point she isn't consistently breathing over the ventilator, she's just letting it do the breathing for her. They'll try to wean her off of it, but can only lower it so much before she starts having spells (meaning her oxygen levels dip too low). She is also retaining a lot of fluid, since she's getting some through her IV and all of her nutrition is coming from fluids. Her morning Xrays showed that some of this fluid is in her lungs, so they are giving her medication to help her get rid of it. Makes it hard to breathe with the fluid and the sedation. Almost like a vicious circle, really. Sounds like in the next couple days she will need another blood transfusion since she probably used up the blood cells from the one she received on Sunday to fight the NEC and her bone marrow isn't mature enough to keep up with making it. Bottom line, even though it sounds worse, she is getting better.

Day 45

An okay day...

The x rays show that the NEC is resolving, looks like we'll avoid surgery. Hopefully her intestines will heal with little scarring, which could create other issues. TIme will tell.

During her morning Xray, Emily pulled her ventilator out again. She's got the hang of it, I guess. The doctors waited an hour and a half to see if she could make it, but Emily had three spells where her oxygen percentage dropped too low so they put her back on the ventilator. Ideally, they'd like her off of it in the next couple days, so they are trying to lower the support that she is receiving from it. She's still pretty wiped out, hasn't been awake at all today, so at least she's not having to work at breathing.

Day 44

Another bump in the road...
Didn't post yesterday because we were waiting to see what happened. Emily had a pretty fussy weekend. Initially, it was blamed on her acid reflux, and the doctors did everything they could to help her out. Then it seemed like she was congested, so she was given nasal drops to see if that helped. Throughout the weekend, she was having increasingly frequent spells where her oxygen levels in her blood were dropping. Yesterday around 6, she started vomiting and her abdomen became distended. At this point it was determined that Emily has NEC (Necrotizing Enterocolitis). NEC is an infection of the intestines that causes inflammation, interior abdominal damage, and tissue death. Lucky for Emily, the doctors caught this at the beginning and so far she hasn't shown any symptoms of her having a severe case. They put an IV in her scalp of all places and started administering 3 varieties of antibiotics. She's also getting repetitive Xrays of her abdomen to make sure it isn't getting worse (so far Xrays have showed that she's stable, if not showing slight, improvement). She'll have to continue the antibiotics for about a week after her first normal Xray, so we're just waiting for a normal Xray. The surgeon is also keeping an eye on her now, if this does get worse it will mean another surgery, but one on her intestines this time. But, being sick has made her tired, too tired to continue breathing on her own, so she was put back on the ventilator this morning. Disappointing, yes, but the doctors want to wean her off of it as soon as possible. Last time it was a week, let's hope this time doesn't take as long. You can tell she's not feeling well, she hasn't been awake all morning. Hopefully the antibiotics will kick in, she'll start feeling more like herself, and within days she's back on the cpap then back to the cannula. FIngers crossed.

Day 42

She gained an ounce. Still having problems with reflux and keeping her oxygen levels up. Despite that, they did lower her oxygen support and she's doing okay with less. The oxygen drops when she holds her breath due to the reflux and she is having some congestion problems so her doctor today prescribed her some nasal drops to help open her up.