Erwin September 8 – Sept 29

This morning was a hard morning for Sylvain and I. The skies were grey with rain on the way and I woke up thinking of Tavish. We spent the morning grieving in each other's arms, then had a quick lunch and went into town to see Erwin. She too was feeling tired, maybe because she also was thinking of her brother as we were, and the nurses had decided to give her a break from the oxygen trials for 24 hours so that she could rest up and do some growing.

Spending time with Erwin is wonderful. She is so alive and quick at times, and then so peaceful and relaxed at others. She warms our hearts and makes us smile. After doing her care she was a little cranky and even when we had started feeding her, she was still crying, so I put her pacifier in her mouth. At first she wouldn't open up, but when she did, her eyes went wide and her lips closed over the pacifier and she began to suck. She would suck five or six times, then rest, then start again, all the while looking around at us and at her little warm home, all the while clutching at the pacifier. Later in the day I held her for a full hour while her Dad fed her and I felt so at peace that I almost fell asleep with her little warm body against mine. These are the moments that will me to do everything possible to ensure that this wonderful, tiny human has all the love and support that is in my power to give.

 

Erwin is getting a break from the nasal prong trial. I got to hold her for 50 minutes. The room was fairly noisy because the staff was changing the respirator of another baby, and even if she was very calm her breathing was fairly irregular. I think she did not like the noise very much. However, we both enjoyed the contact and she settled in for a good nap after being held. The room we are in is rather cramped and Erwin is getting moved to the next room over tonight.

Erwin just got moved back to her previous spot in room A, not because she is not doing well, but because they had to do a little bit of "musical babies" to accomodate for new arrivals. We feel right at home here and it seems that Erwin does too. There is more space and it makes is easier to create our little bubble with Erwin. - Sylvain

 

Erwin is still tired from all the hard work on the nasal prong trial and looks pale. We did not hold her today so as not to wear her out. We did spend a lot of time with her though, and I read to her for a while so that she could hear my voice. She likes to hear me reading, but what she likes the best of all is to hear Sylvain and I talking quietly together with low, relaxed voices. Whenever we do, she always settles right down to listen. The good news is that Erwin now weighs over a kilogram (2.2 lbs)! Her nurse gave us a certificate for the "Kilogram Club". We are very proud of our little Erwin.

 

When we arrived at the NICU, Erwin was looking paler than usual and she was very lethargic. After getting the results from her blood test which showed that she was quite anemic, they decided to go ahead with a blood transfusion. Also, she kept on forgetting to breathe and had two spells where she needed to be tickled to start breathing again. It was rather difficult to watch her not breathe for a while then start up again.

Because she did not seem to be doing as well, they started her on antibiotics. It was very stressful to be beside Erwin and not be able to help her breathe or to give her some of our strength. We stayed by her side all afternoon though, and her colour started getting better after she got the transfusion. Her breathing, on the other hand remained somewhat irregular, so they changed her from CPAP to a BiPAP, where instead of getting only positive air pressure she also gets a minimum of 20 breaths per minute. Right away her breathing evened out and by the time we were getting ready to go home, she was doing much better and we left knowing that she would have a restful night.

 

Erwin is back to her old self again, full of energy, kicking the blankets off, sucking on her soother when she is being fed and getting in her Dad's way when he changes her diaper. She is still on antibiotics until the results from the blood and the urine cultures come back tomorrow. The latest heart ultrasound shows that her PDA is still large, and she may need to be operated on next week if she still needs to be on the BiPAP for breathing. She will let us know if she needs the surgery. We knew ever since she was born that her PDA might need to be treated eventually, so this is not new for us. Every day she can get by without the surgery she gets stronger for when it needs to be done. She is still getting her morning caffeine every day as do all very premature babies.

 

We drove Erwin's paternal grandmother to the airport today, drove back, had a nap, caught up on chores around the farm, then headed into town to see our precious little girl. We also noticed that her cheeks are getting quite plump (at least compared to before!) and she is starting to have a bit of a double chin when she is lying on her back. Today turned out to be a very special day as we got to help give Erwin a bath for the first time. Since all of her has to be wiped clean, we got to see her without her hat on for the first time in a long time. First her eyes are wiped, then her face and mouth. Next, her hair is cleaned and dried (no soap yet, just warm water), then her arms, back, chest, legs and bottom are "scrubbed". With all the stimulation, Erwin was able to manage breathing on her own for short periods. Her Dad would hold her respirator over her nose to give her a break between each part of her body being washed. After her bath I held her for about 50 minutes while she was fed, then we tucked her into bed and went home to do the same.

 

Today we spent the morning packing the freezer full of food from the garden and doing laundry, then we went to see Erwin. She has been on CPAP again since the morning, and has been doing very well, which means that she will probably not have to go for surgery any time too soon, especially if she continues to improve and grow. Her test results also came back negative for infection, as we had suspected, considering her quick recovery, and we are celebrating. After doing her care and settling her in for a nap, we went to a friend's house for dinner (which was excellent, food and company), and then came back to the hospital to do Erwin's care again before heading home. As tonight was the time to change her isolette, Sylvain got to hold her for 40 minutes while her new home was warming and getting set up. She settled right down on his chest and peacefully sucked away at her pacifier while she was fed. We tucked her back in after her cuddle and left once she settled into a nice deep sleep with her knees tucked under her tummy.

Erwin has started a growth spurt and weighs 1180g or 2lb 10oz as of the 21st. Lots has been going on and much of it is new to us and to Erwin. She has had her first eye exam and the eye specialist is pleased with her. He says that her eyes are perfect right now, which does not mean that she won't develop problems in the future, but it is a good start, as premature babies are prone to improper blood vessel growth in their eyes. She is going to have a follow-up exam in a week to make sure that she continues to do such a good job.

Erwin has spent the week on antibiotics due to a minor infection which has now cleared up and she is IV free! In regards to her heart murmur, each day that goes by diminishes the likelihood of her needing surgery. The murmur is still there, but it is not bothering her. She seems to be able to cope well with it and even get into trouble with the nurses! She does not stop worming her way down to the end of her bed, until she is all crunched up in a ball at the bottom with her knees tucked up under her tummy and her hands near her face. We are constantly shifting her back up, but I think she thinks it is all a good game.

This week Erwin also got her first real bath, in a real "tub" (or tray). After the initial surprise when she found herself with her bum in warm water, she started to enjoy herself and look around with her big eyes while Dad bathed her. She had her bath while on nasal prongs (oxygen) instead of CPAP which made everything easier, and made it possible for us to see her whole face again. The next day Erwin got her own special cot which has a heated waterbed matress in it to help keep her warm, and since she is no longer in her incubator, she is wearing her first clothes. We are still amazed at how small her onesies are. They look like dolls' clothes.

Erwin is now getting 22 cc's of milk every three hours, fortified with extra calories and vitamins. She is digesting very well since her stomach is always empty when it's time to eat again (just like her Mom). We continue to go back and forth between home and the hospital every day, and even though we spend hours by her cot, just looking at her or talking between the two of us between feedings, time seems to fly by and it is always time to go home too soon. We have been cuddling Erwin every day and the more we get to know this tiny human being that is our daughter, the more we fall in love.

This week Erwin had her second eye exam and all's clear! No glasses... yet. She is not due for another exam for two weeks. We are quite relieved that her eyes are developing so well. Over the week Erwin has spent more time on nasal prongs with a very low rate of oxygen. Half way through the week she started to get quite puffy, especially around her eyes, so she got a dose of diuretic. She "unpuffed" very quickly and started doing much better with her nasal prong trials which meant that I got to bathe her in a real bathtub (basin). For the first time since she was born she got to float in water again, and she loved it! She wiggled her hands and arms in the water and kicked out with her feet. She hasn't figured out how to splash yet, but I am sure that it will not take her long. She kept on trying to turn her face toward my hand that was supporting her head, thinking that she might be able to get some milk there, but no luck. Once she was all clean and bundled up in a warm towel, she settled down to look around at Mom and the rest of her NICU world. She fell asleep back in bed with her tummy filling while she lazily sucked on her pacifier, which is starting to look about the right size for her.

One of the nurses says that Erwin has quite a voice and lets them know when she is unhappy about something, like a full diaper. Her way of getting around this particularly uncomfortable situation is to wait for diaper changing time to let loose. Then she gets a clean bum right away, and sometimes new sheets too. When she is on her tummy she can lift her head and turn it from one side to the other, even with the CPAP mask on, which means that it is getting harder to give her equal amounts of time on each side. She also has more distinct sleep and wakefuleness patterns, and when she is awake, which is more and more often, she looks around with eyes open wide.

 

Erwin has been a busy girl and is growing fast. The first little onesies supplied by the NICU are already getting a little too small. We can almost see her growing from day to day. The best part, of course, is holding her while she makes little baby noises of contentment just before dropping off to sleep.