The Emma Report

I had a lovely long visit with Emma this evening. Timing was right, and I finally had the chance to feed her (by giving her a syringe containing 7cc of breastmilk through a gavage tube – a small flexible tube inserted through her nose and into her stomach). Even better, though, was when Emma finally opened her eyes! (a baby’s eyelids are typically fused closed until sometime between the 24th and 26th week, so she was right on schedule at 25 weeks and 3 days). Maybe the nurse was just humouring me, but she said that Emma had not opened her eyes all day, so must have been waiting for my visit. I am ridiculously thrilled by these small advances!

In other news, Emma is scheduled to have an echocardiogram tomorrow to check on the PDA, but barring any significant change/improvement, will likely have surgery (ligation of the blood vessel), possibly some time later this week. Her hemoglobin has dropped since the weekend, indicating that she will probably need to have another blood transfusion by mid-week. She also had an apnea episode today (a brief period in which she does not breathe on her own). While the NICU nurse assured me that this very common, she also noted that it could be the first sign of an infection, so the team will be watching her closely for any other indicators of one.

Finally, in the light of the NICU tonight, I was able to see for the first time that Emma is actually quite fair-haired. On most of our earlier visits, she’s been wearing a hat/bonnet to help maintain her body temperature, so we haven’t been able to see her hair. Tonight, though, the nurse was adjusting her leads/tubes and so had the bonnet removed. It looks like Emma is going to be blond like her big sister

I spent some time at the hospital tonight with Emma, and had a good chat with her nurse and one of the residents. Overall, Emma’s doing well, and they’re about to start feeding her every three hours. Unfortunately the on-again off-again heart murmur is on again, and I learned that my previous post was somewhat incorrect. Her major problem is PDA, PFO is secondary. In short, there’s a small blood vessel that connects the aorta to the pulmonary artery. Before the baby is born the lungs aren’t used, and some of the output from right ventrical is fed back into the aorta. In a large number of premature babies, including Emma, the vessel remains open. They’re going to try a third round of medication to close it, and if that fails she’ll require surgery. Fortunately the surgery is relatively straight forward, and involves simply tying off the blood vessel responsible. The staff at the NICU also started bringing me up to speed on many of the other challenges that Emma will face and they lent me a good book on the subject. So on one hand I know she’s doing well, but I’m also being warned that we have a rollercoaster ride ahead.

Emma had a somewhat difficult day today. They replaced her ET tube, and while adjusting it, it slipped out, and they had to intubate her a second time. In the end, the tube is now entering through her nose, which one would expect is more comfortable than through the mouth. She has needed a few percent more oxygen and an increased vent rate, but we’re told that is to be expected from time to time given her age. So far no heart murmur, hopefully it’s gone to stay. Emma is tolerating food again, and is up to 5cc of breast milk every 4 hours. Overall she’s doing well given the circumstances, but the little things that pop up on a daily basis are a constant reminder of how fragile she is.

Emma is now a week-old and she had a busy day. Her heart murmur was detected again today, so she was given another dose of medication. Our hope is that this will resolve the condition over the weekend. If not, one more dose of medication can be given. If all else fails, she may need to have surgery to repair the heart valve/blood vessel mid-next week. Hopefully that will not be necessary!

Emma also had a PICC line inserted today (basically a central catheter that will stay in place longer than a tradition I.V. line to allow medications to be given without the need for frequent poking with needles) and reportedly tolerated the procedure well.

Although she had not tolerated the breastmilk feeds yesterday, she did so today, so the team is planning on increasing the amount she receives to 4 cc’s every 4 hours tomorrow.

Finally, the umbilical lines (catheters that were placed into blood vessels within her umbilical cord) were removed and she was finally able to be placed on her tummy (important in the prevention of sores/skin break-down). As I left the NICU tonight, she was sleeping peacefully with her legs curled under her and her little bum in the air

Eric has wanted me to post an update for days now, but I have been reluctant to do so. The reasons for my hesitancy are hard to put into words. The past 6 weeks have been so very difficult, both emotionally and physically draining. Mostly, though, I think my resistance to blogging about Emma has been due to anxiety and fear.

I still find it hard to talk about Emma without crying. I’m so very scared for her. I wonder how long it will take before my heart doesn’t leap into my throat whenever our phone rings, fearing it is the NICU calling. Going to visit her at the hospital is especially stressful for me. It is hard to see her, so tiny and frail, hooked up to the various monitors and leads and wires. My arms ache to hold her close, but we can’t even really touch her due to her fragile state. Although she has been doing relatively well, with only the ‘expected-for-her-very-premature-state’ complications, I’m still afraid to be hopeful and optimistic. We had so much bad news during my hospital stay and every time we hoped/prayed for something positive, our hopes were dashed. Now, each time we speak to the staff at the NICU, we’re reminded of how precarious Emma’s health is. Even a report of a positive development/stable night is prefaced by “these are still early days and she has a long, hard road ahead of her…” It constantly feels as though I am waiting for the other shoe to drop and to be confronted by more devastating news…

Having said that, it is getting somewhat easier as days go by. Emma is a week old today and, thankfully, is holding her own. While we still can’t be confident about her future/survival, I hope that as she gets stronger I will be more comfortable reporting on her condition here.

I also wanted to take this opportunity to thank everyone for their good wishes, support, and prayers. I can’t begin to tell you how much they have meant to us.

Thank you all,

Nothing major to report. Emma didn’t tolerate the milk, but they’re starting to try some more.

Laurie went to the hospital to see Emma by herself today and drop off a load of milk. She reports that the medication given to address the PFO seems to be working, and that they’re no longer hearing a heart murmur. Emma also has developed a sore on her back, primarily due to how fragile her skin is at this point. Her vitals are stable, and she continues to do well.

Laurie, Michaela, and I dropped in to see Emma for a while and she’s doing well. Some of today’s developments sound scary, but we understand that they are to be expected in the normal course of events. She has a patent foramen ovale resulting in a heart murmur, and her hemoglobin levels were a bit low due primarily to blood drawn for required tests. She was receiving a blood transfusion when we arrived, and may be given medication to help address the PFO tonight. She had a cranial ultrasound this morning and it was completely normal. She’s now up to 2ml of breast milk every 4 hours and is tolerating it well. Oxygen saturation, heart rate, and blood pressure all look good.

Overall, she looked more colourful than yesterday (the blood transfusion definately helped) and was sleeping peacefully on her side with her tiny hand in front of her face. Michaela seems to enjoy visiting her sister, and is completely unphased by the NICU, isollet, tubes, and wires.

These photos were taken using very high speed black and white film and no flash, resulting in Emma’s skin appearing somewhat darker than it is. Today she’s looking more pale, but more about that later. Clicking on the images will take to you a larger version.

Doing fine – more later

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