The Emma Report

First it was “the Diva.” Now, it’s “the Wild Woman.” This is what Emma’s nurses are affectionately calling her. As I said yesterday, since she’s been feeling better, Emma has been much more active. She managed to pull her NG tube out today and her ET tube became quite loose again from all of her wriggling around (despite retaping it twice more), so the docs decided it was time to remove the tube entirely (the chest xray showed that the tube was no longer placed correctly and they didn’t want to put her through the proceduce to insert another one). Rather than putting her directly onto CPAP, the docs decided to “test” Emma on a nasal canula. To everyone’s surprise, she was able to breathe on her own for 2 hours before getting tired!!

It’s not the most flattering picture (it’s hard to take photos through the plastic sides of the incubator), and her nose is still a bit puffy, but at least it shows Emma’s face without tape on it…

She’s back on CPAP now but, if she remains stable, the team will start gradually weaning her off by putting her on the nasal prongs for an hour a couple of times each day. Unlike the CPAP, which forces a stream of air into her nose, the canula only provides a regular flow of oxygen-enriched air. This requires Emma to be motivated to inhale on her own. Breathing is therefore harder work, and Emma will likely get tired pretty quickly. She was paler than usual after being on the canula this afternoon, so the docs will monitor this carefully. They’ve also ordered another xray of her abdomen tomorrow (today’s xray was better than the previous ones have been) to monitor her recovery from NEC. If she continues to improve, they will likely restart her feeds on the weekend.

Emma was extubated earlier today and cruised along with just a nasal cannula for about two hours. They’re currently in the process of putting her on CPAP before she gets too exhausted. She’s still on antibiotics and it’ll be another few days before they start feeds again, but she’s definitely moving in the right direction!

After spending the last few days sleeping and recuperating, Emma is clearly feeling much better today! As her nurse said this afternoon, “our fiesty little girl is back”

Emma was much more active and alert today. She was squirming around her isolette and just about pulled her NG tube out. She seems to be hungry (a good sign!) and has been giving her pacifier a good work out. The respiratory techs had to retape her endotracheal tube twice today as Emma has been moving so much and pulling on it, it has become loose. She’s on the lowest possible settings of the ventilator (10 bpm at 21% oxygen), so she’s ready to be extubated very soon (the docs wanted to give her stomach another day to heal, so decided not to put her back on CPAP yet). She’s scheduled to have xrays of her chest and abdomen tomorrow… here’s hoping the results will be good!

Emma is doing much better today. From a respiration point of view, she’s very stable… cruising along on room air (21% oxygen) with very few desaturations. They’ve turned down her ventilation rate to 15 and she will likely be able to go back on CPAP tomorrow or the next day.

In terms of the NEC, Emma still has a lot of air/old blood in her belly, but the docs don’t seem to be as concerned now. They haven’t ordered another xray (as Emma is clinically doing better) and are simply giving her stomach time to heal on its own (continuing with the antibiotics and IV fluids and withholding her feeds).

As Emma was much improved today, we were able to resume Kangaroo care. Not being able to hold her since last Friday has been really hard…

That pretty much sums up today.

The good news is that Emma’s condition is not any worse than it was over the weekend. While the results of her blood tests came back negative (indicating she does not have a blood infection), the docs have decided to keep Emma on antibiotics for another 5 days because she is still showing signs of being sick. They’ll withhold her feeds for another 5-7 days to give her gastrointestinal system a break (she’ll receive IV fluids/nutrients instead). Being back on the ventilator will also reduce the amount of air in her tummy, helping it to heal even more. The CPAP blows a constant stream of air into Emma’s nose, some of which goes into her lungs, but some also ends up in her stomach. Too much air in her belly causes extra pressure and can lead to problems (in the worse case scenario, a perforated bowel/hole in her intestine).

When I left the hospital late this afternoon, Emma was looking a bit better and was sleeping peacefully. I checked in with the NICU again tonight and her nurse said she was more active and alert than she had been all day. Let’s hope that means Emma is starting to feel better.

This morning Emma started to act “sick.” She was requiring more oxygen and have more frequent bradycardia spells (in which her heart rate slows down) and periods of apnea (in which she stops breathing), so the team felt she needed a break in order to conserve her energy. After some discussion, they made the decision to re-intubate her and she is now back on a ventilator. She’s still exhausted and very sleepy…

Today’s repeat abdominal xray didn’t show any big changes from yesterday — not worse, but not better either. Emma still has a lot of air in her belly (along with some blood), so until proven otherwise, they are treating her as if she does have NEC and are withholding her feeds and giving her antibiotics. In addition to the IV fluids (to prevent dehydration), she’s also being restarted on TPN (total parenteral nutrition) – the intravenous solution of sugar, minerals, vitamins and proteins which is given along with another mixture of lipids). Hopefully she will regain her strength and won’t lose too much weight. Then she might be better able to fight this infection. For now, as the docs say, it’s just wait and see….

Emma’s 50th day in the NICU has not been one of her best. Early this morning, she began to have problems tolerating her feeds. This, combined with some other signs (including more frequent periods of apnea and bradycardia, evidence of blood in her stomach, and fluctuating body temperature) had the team worried. They ordered an abdominal xray this morning and while the docs haven’t officially given a diagnosis, they feel the results are “highly suspicious” of NEC (nectrotizing enterocolitis). NEC is a serious gastrointestinal disease which causes infection and inflammation of the bowel and intestines.

For now, they have stopped Emma’s feedings and have started her on IV fluids. She’s also receiving additional antibiotics (we have to wait 48 hours for the blood cultures to come back to know for sure if she has a bacterial infection). She’ll have another xray tomorrow, so we should know more then. If she does have NEC, Emma’s feeds will likely be withheld and antibiotics continued for 7 to 10 days. If her bowel perforates or her condition worsens, she may need surgery. Let’s hope and pray that won’t be necessary and that tomorrow’s update brings more positive news…..

Both Eric and I were able to visit Emma at the same time today (I usually visit during the day, while Eric does the evening shift after he gets home from work). When we arrived, we found a lovely gift waiting for Emma — this beautiful pink preemie quilt made especially for her by the mom of a dear friend (THANK YOU Judy S. !!!)

Emma is 7 weeks old today and weighs in at 2 pounds, 6 ounces. She’s added almost 6.5 cm to her birth length and is now measuring near 14.5 inches. She’s now the biggest/oldest baby in her room in the NICU!

The team hasn’t yet started weaning her from the CPAP to a nasal cannula as Emma tends to desaturate quickly whenever they even briefly take the CPAP off. She’s had several big spells over the last 2 days (often just after she’s been fed), so she’s been re-started on caffeine. Hopefully this will stimulate her to keep breathing, something her immature nervous system occasionally forgets to do. Emma also tends to sleep with her mouth open, so it is hard to get a proper seal on her CPAP mask. When it’s not sealed properly, air leaks out, and her oxygen saturation levels drop. She often enjoys sucking on her soother, though, so now we’ve learned to pop it in her mouth to try and keep her O2 sats. within the proper range.

Soon, we’ll start to introduce a pacifier during her feedings so she can begin to associate sucking with the feeling of having food in her stomach. This will be the first step in a long process of getting her used to coordinating the sucking, swallowing, and breathing that must occur for real breastfeeding, so it’s a big step forward.

As I walked in tonight, the nurse was gently rubbing Emma’s back. A quick look at the CPAP machine and monitor told me that Emma was having a major “spell”. I don’t think I’ve ever seen her oxygen saturation hit 27% before, and I’ll be happy if I never see it that low again, although in reality it probably wasn’t as bad as some of the spells that cause her heart rate to drop. About ten minutes later she stopped breathing again, so I gently rubbed her back and she immediately started breathing again (she usually comes out of it on her own, but I didn’t want to wait and see given the major spell a few minutes prior.)

Emma has been having about one spell per day, but she had four today, so they’ll be discussing putting her on caffeine at rounds tomorrow. Remember to breathe Emma!

Emma had her first eye exam today. It’s still very early — too early to tell for sure — but so far there is no evidence of ROP. She has another exam scheduled in 2 weeks.

She hasn’t been gaining much weight, so they are increasing the fortification of the milk.

She continues to require supplemental oxygen, but overall is doing well.