Thursday, December 25, 2008 (Christmas Day)

Merry Christmas! Emma is getting bigger and stronger every day. On Tuesday Cynthia met with the cardiologist who said Emma's heart is basically fine. There was a tiny bit of fluid around the outside of the heart, but he wasn't concerned about that and said they'd check it in a few days to see if it had changed. So now the big question is what is making her heart rate high. They are thinking it could just be the caffeine, so they took her off that. It takes up to 5 days to get out of her system. To cover all bases, they are going to do a 24-hour heart monitor (probably on Friday). And speaking of heart monitors, we found out that when Emma comes home, she'll be coming with a monitor. We are very relieved to hear that. The doctor said she could be coming home as early as Monday or Tuesday.

Dad's so proud his little girl was already on caffeine! There's a Starbucks in the lobby of the hospital, but he keeps whispering in her tiny ear that Dunkin is SO much better! Product placement? On another product placement note, it's very difficult to find hats small enough for Emma right now - anyone out there with a tiny Jack Daniels baby do-rag, please call.

On Christmas Eve Emma had a big surprise for us... she decided she no longer needed the feeding tube and pulled it out all by herself! The doctor decided not to put it back in because she is eating so well. They've switched her to an on-demand schedule, and she has been eating 40-70ml (over 1 to 2 ounces) about every 4 hours. Cynthia hopes she stays on this schedule, because it might mean she'll only wake up for feeding once overnight (yeah, wishful thinking). Emma now weighs in at 4 LB 3.9 OZ.  Oh, also, when we arrived at the hospital we found her in a little "Baby's First Christmas" santa hat and there was also a huge red stocking that could be used as a sleeping bag for her. There was also a little tiny stocking with her name on it with a little bit of candy in it. The elves (aka nurses) were very busy! They've been so nice. Emma also now has a roommate. The special care nursery had been packed when she was born and slowly the others have been leaving and there were few arrivals. She had the place to herself for one night (and 3 nurses to dote over her) until this little boy arrived.

We all had a good day together on Christmas. Emma wasn't fussy and stayed pretty alert during feeding and afterwards. She's getting more expressive and makes the cutest and sometimes strangest faces, but we love to watch them all. The nurse said she'd had a minor episode (Brady and desat) overnight. But they have started noticing that most if not all of the episodes have been either during or soon after feedings, and she sometimes spits up some of the milk. So they think that she may have a reflux problem which could then be leading to these episodes. So on Saturday she'll have a 12-hour test that monitors her usual stats along with her stomach acid and reflux (poor thing, it involves another tube down her nose). If she has a reflux problem, it may be as simple as some medication. This probably means, though, that she won't be ready to go home Monday or Tuesday, because either they find out it isn't reflux and still need to investigate or they find out it is, put her on meds and have to monitor her for several days to see if  the meds solve it.


Monday, December 22, 2008

Emma is doing well now, but we had a bit of a scare. It started last Wednesday when she was just fussy all day. Then on Thursday she seemed very tired. Then Friday evening we went to see her before going out to dinner for Cynthia's birthday. She appeared to be sleeping, but looked tense and was moving her jaw (as if grinding her teeth if she had them) and kind of grunting or groaning. At first we thought she might have just been dreaming, but it continued. The nurse didn't seem concerned. Cynthia held her for a bit and then Laz. Her oxygen level (SPO2) seemed to be on the low side. We noticed that the alarm threshold had been lowered to 85 (which doesn't make sense). Her temperature was also a bit low. Soon after putting her back in the crib her stats got really low and the nurses were concerned. Then the rest of her stats dropped and the doctor rushed in. She had stopped breathing and started turning blue. They bagged her and did CPR. It was a long and scary few minutes, but she came back. They weren't sure why that had happened, but immediately they started doing a bunch of tests including a spinal. They suggested we leave during this time, so we went down the street for a very quick bite and immediately went back to see what was going on.  She had another "episode" as they call them while they were doing the swab for the RSV test. She was put back under the heat lamp, IV back in, and put back on oxygen. They started antibiotics and caffeine to keep her heart rate up.

Saturday she was doing much better. Her stats improved significantly. They lowered the oxygen level and decided they weren't going to give her the IV drip she'd had originally (not sure what it was, but had lots of nutrients). But she wasn't allowed to eat (by mouth or tube) yet. Their best guess is that she had an infection that was caught early, but they still aren't sure, so they are planning more tests.

By Sunday she was getting back to normal. She was taken off the oxygen completely in the morning. She was much more alert. She was also allowed to start eating and she went straight to all bottle, although the amount was cut back to 20ml. She had an EEG (test of brainwaves) to see if there was any damage and also to see if the jaw grinding could have been a form of a seizure. She also had more blood drawn for additional tests. So far everything has been negative. The physical therapist worked with her in the afternoon and other than getting a little fussy and her heart rate going a little high (partly due to the caffeine), that went well. The only test that has come back questionable was a slightly elevated ammonia level.

Cynthia spent a lot of time with Emma on Monday. Other than having the IV, you wouldn't know she'd been near death a couple of days earlier. She was very alert and not fussy, even when taking her temperature and getting her diaper changed. She even ate both feedings (25ml) by bottle for Cynthia (a first). In the morning she had an EKG, but we didn't get the results yet. And she was scheduled for an "echo" (ultrasound of the heart), but by 4:30 it hadn't happened yet. The ammonia could be high as a result of stress or damage to an organ (which could be brought on by infection). So that is why they are testing the heart.

The last several days were so scary and stressful. We are relieved she is doing so well now, but it's frustrating that they don't know what caused it. Which also means we don't know if it could happen again. The doctors seem to be being very thorough, but even they admit that they might not be able to determine the cause. So we'll try to spend as much time with her as we can, not just because our presence should make her feel better and thus heal faster, but also so we can keep an eye on the subtle changes that might happen that a shift nurse might not notice.

On Friday night before all this happened, we had been asking the nurse about when she might go home. She said they usually wait until 5 days after her last apnea episode. She had just had a minor one, so she said if all went well she could be home by Christmas Eve. Obviously now that isn't going to happen. Our new target is New Year's Eve, but we don't want to rush it. We feel much better about having her in the hospital with the nurses and machines to monitor her constantly. So we'd rather her stay longer and be more stable when she does come home.


Tuesday, December 16, 2008

So much to update! Emma had the IV removed last Thursday. On Friday, she went up to 35ml feedings, which will be the max for a while until she gets bigger and needs more. She has gained a little (1/10 ounce). Friday she also began physical therapy, which tired her out so much she didn't get very far on the bottle feedings for the rest of the day.

Saturday was a huge milestone, because she was upgraded from the incubator to an open crib! That means she is able to regulate her temperature, which is one of the criteria for going home. So now the feedings are the most important. Once she consistently takes all feedings by bottle and is on on-demand feedings (i.e., she "asks" for food by waking and crying instead of being on a fixed schedule), she can go home. Right now she is pretty good about waking up around feeding time. She doesn't cry a whole lot, and when she does, it is just for brief spurts and she's easy to calm down. (We hope she stays this way!)  But it is hit or miss whether she'll take the whole feeding by bottle, so that's what we need to work on.

Mom and Dad are doing well. Sunday we had the baby shower and got lots of useful stuff, including preemie clothes, which we really needed. Cynthia had her follow-up doctor's appointment on Monday and the surgi-strips were removed. The incision is healing very nicely, and she has minimal pain and some numbness above the scar. Her blood pressure is still a bit higher than before the pregnancy, but it has started to go down. The gestational diabetes appears to have gone away now. She was also given permission to use the stairs! yeah! No more breakfast in bed... :-(


Wednesday, December 10, 2008

Adjusting to being back home is a bit of a challenge. Cynthia was told she could only make 2 trips on stairs a day. But being in a split level doesn't make this easy! She can stay on the bedroom level where there is also a bathroom. But the kitchen is down a half flight. So Laz will bring breakfast in bed and have bedside dinners, and Cynthia's one trip up and down will be to the kitchen to get her lunch if Laz is out on jobs. Since that's really half a flight, she gets one more trip, and that's for the evening visit to the hospital.

Laz saw Emma in the morning when dropping off some breast milk and the nurses said they hoped to have her off the IV by evening. But during the evening visit, they said while they did disconnect the IV drip, they didn't want to take out the IV until probably the next morning.

When we arrived for the evening visit she was wide awake, waiting for a feeding. It took a while for the nurse to get everything ready for us, and by the time Cynthia had Emma in her arms, Emma was getting sleepy again. She tried breast feeding for the first time, and Emma got a little bit, but she got too sleepy. They gave her a feeding by the feeding tube at the same time (so she could associate the breast feeding with the feeling of feeling full). She's going up to 28ml a feeding (she was only at 12ml 24 hours ago). The last couple of feeding she got about 2/3 through by bottle before getting tired, so she got the rest through the tube.


Tuesday, December 9, 2008

Mama gets to go home today, with mixed emotions! Cynthia isn't allowed to drive for 2 weeks, so visits to the hospital will be somewhat limited. Once she is feeling better, Laz should be able to drop her off for extended stays while he goes on jobs, but right now Cynthia needs to rest and recooperate more.

Before leaving the hospital we made one more trip to the nursery. Emma has had a couple of meals now all by bottle. She must take after her mom with her appetite! Cynthia insisted that Laz try holding her. They wrapped her up in the burrito roll to make it easier for him.


Monday, December 8, 2008

Emma is amazing everyone. Off of oxygen and now she even fed a little from a bottle (versus the feeding tube she has through her nose).

Cynthia is doing well, but her BP is going back up a bit, so they are keeping her another day. This is actually a relief because then it's easier to visit Emma. Cynthia got to take her first shower and it felt wonderful to be clean again!! She was able to walk to the nursery and back twice.


Sunday, December 7, 2008

Cynthia is feeling a lot better and is finally able to sit up without the room spinning. She was given the go-ahead to have a short visit with Emma. Dad wheeled her down to the nursery and she got to see Emma for the first time. It was a very emotional experience for us both. It was scary being handed the baby because she just seemed so tiny and fragile. Laz is too afraid to hold her yet.

By evening, Emma is taken off of the oxygen. This is a really good sign. Laz calls her the miracle baby!


Saturday, December 6, 2008

Emma is doing extremely well. She was on pressurized oxygen overnight and has an IV, but everything looks good. She was taken off the pressurized oxygen and now just has a small amount of oxygen through the nasal tube.

Cynthia is having a tougher time. She has to be on the magnesium IV for 24 hours after the C-section. It is making her very groggy and dizzy. The room is constantly spinning for her and she's nauseous. The nurses are constantly checking on her stats. We are told later on Monday that she wasn't doing that great, but the nurses didn't want to worry us.

Cynthia also insisted that she did not want to take any narcotics for pain, so she's alternating Motrin and Tylenol. Everyone thinks she's nuts, but she is handling the pain well.

Laz got to go visit Emma in the nursery. It's hard seeing her hooked up to all of the tubes and wires. And she's so tiny! It is so hard to imagine a baby that small so perfectly intact with tiny little fingers and fingernails etc.

By late evening, Cynthia was able to get off of the magnesium and she gradually felt much better. But she was still too sick to go visit Emma, which was really disappointing.

Friday, December 5, 2008

We finally met with a high-risk obstetrician who said Cynthia had developed HELLP syndrome. While they would have liked to induce labor to try for a natural birth, they said it could take 2-3 days before the baby might be born and we didn't have that kind of time. They immediately gave Cynthia a steroid injection to help develop the baby's lungs. They normally would like to give two injections 12 hours apart, but they decided they didn't even want to wait that long. If they waited too long, Cynthia could develop eclampsia, which is life-threatening. So, they scheduled the C-section for 3:30 that afternoon.

Waiting was the hardest part. We were worried about Cynthia's health and the health of the baby being born this early. We also realized how we really weren't prepared for the baby this early. Heck, we didn't even have a camera! We had just ordered one online and it was due to arrive Saturday, of course. The nurses were really nice and got us a disposable camera we could use.

We did what we could to keep our spirits up during the wait. The 3:30 schedule came and went, however, as a couple of other emergency surgeries bumped ours. (On the positive side, we figured it was good that we weren't the highest priority case.) In the meantime, Cynthia was hooked up to an IV of magnesium to help lower her blood pressure and help prevent seizures.

Just before 6pm we were told we were up. Cynthia was extremely nervous about getting the spinal and the drugs because of potential after-effects. Things moved very quickly. Laz joined Cynthia in the OR and before we knew it, we heard a crying baby. We really didn't think that was going to happen, because we thought her lungs wouldn't have been that well developed. We took that as a really good sign. Laz was able to go over to see the baby immediately as the nurses were evaluating her, and he got a couple of pictures. Cynthia only got a little glimpse from a distance as they wheeled Emma away to the special care nursery.

For those who know and care about these things, her APGAR scores were 8 and 9 - excellent.

[Laz will add more here soon...]

Thursday, December 4, 2008

Cynthia had developed high blood pressure and gestational diabetes around week 28 and had been told to restrict activity. The doctors were worried about preeclampsia, and she was visiting the doctor's office twice a week. On Tuesday she began having some upper abdominal pain which she thought was just nausea, but when it persisted, she called the doctor. The doctor told her to go to the hospital. We arrived at the hospital around 7pm. They ran some tests and said they wanted to keep her overnight, but we really didn't know what was going on until the next morning. They did tell us, though, that Cynthia would not be going home until the baby was born, induced or not. That news was unexpected and a bit frightening, but we were hopeful they'd just be keeping her there for close observation for a few weeks before the baby would come.