Monday, October 31, 2005
The good news kept on coming. She gained weight again -she's 3 pounds, 6 ounces! She's obviously turned a corner and it's so thrilling. Her day nurse, Tara, said that she's so on-target developmentally that it's scary.
I'm a little brokenhearted that I wasn't there for her first bottle. There's no set schedule for when the speech therapist comes to the NICU, so the nurses couldn't tell me when she'd be evaluating Aerin. She checked Aerin's mouth to be sure that everything was structurally sound and it was. You can bet that I'm going to be there for the bottle tomorrow. She only gets 1 per day for a while.
The next step is moving out of her isolette to an open-air crib.
Sunday, October 30, 2005
Aerin had another big weight gain - she's up to 3 pounds, 4.38 ounces. Some of that may be water retention from the sodium supplements, but who knows? She does seem to be outgrowing her clothes.
Saturday, October 29, 2005
Aerin is doing well on the cannula. She's hovering between 40% and 50% oxygen, which is great for her first full day on 0.5 liter. Her weight is holding steady at 3 pounds, 1 ounce. She had a blood gas yesterday and everything was perfect. Her sodium has been a little low for the past couple of days, so they're giving her a supplement. It's making her a little puffy, which is great - she almost looks chubby. Her eyes are turning newborn blue and they're beautiful. We won't know her true eye color until she's at least term.
My friend Tracy asked what are the target weights/conditions we need to take her home and I know a lot of people are wondering the same thing. She has to be at least 4 pounds, but that is the most basic condition. She has to be breathing on her own without any supplemental oxygen and no apnea or brady episodes for at least 2 weeks. Her blood gases and electrolytes have to be perfect. She has to be eating on her own - bottle or breast (hopefully breast). Basically, she has to be completely stable.
However, there is a step-up nursery she'll go to before coming home. It's call the PCN - Progressive Care Nursery. It's the nursery for babies who no longer need intensive care, but aren't ready to go home. We're hoping she'll get there in the next month.
Aerin gained another 50 grams, clearing the 3 pound mark for the first time. As of last night, she weights 3 lbs, 1.4 oz. At this rate, she is projected to reach this size by 2006.
Congratulations to our cousin Hallie, who has her Bat-Mitzvah in New York today! We're so sorry we couldn't make it.
Friday, October 28, 2005
She could still need to go back on the Vapotherm, so we're being cautiously optimistic.
Thursday, October 27, 2005
Aerin did well today. Her oxygen was the same and her feeds are the same. She's still having some reflux and they're still treating it. Andrew kangarooed her and I cradle-held. It's so nice that we both can hold her in the same day - she's big enough that being taken out of the isolette doesn't stress her out.
Aerin's new clothes from the Preemie Store came and she looks adorable. They're still a bit big,but she'll grow into them. The NICU administrative assistant, Nola, gave Aerin very sweet some hats that her daughter grew out of, which was extraordinarily nice of her.
The big news for today is that Aerin had another big weight gain and now weighs 2 pounds, 15.7 ounces. That's just .3 ounces away from 3 pounds! Now this is a very big weight gain, so it won't be surprising if she loses some weight tomorrow. Andrew is hoping she'll get to 3 pounds by the end of the month and she just might.
In other news, a giant Mazel Tov to my friend Nicole who gave birth to a beautiful baby boy, Samuel, on Friday, September 21st. Mother and baby are both happy and healthy.
Wednesday, October 26, 2005
She is finally gaining weight again - she's at 2 pounds, 13.2 ounces! She's so close to 3 pounds. We just cannot wait.
Aerin has a pediatrician! Andrew and I met Dr. Al-Mateen today and we couldn't be more pleased. We were referred to him by Lisa, one of our NICU nurses, and every other nurse I've mentioned him to raves. He used to work at the Henrico Doctors' NICU before opening a pediatrics practice. He is extremely familiar with all of the issues that Aerin will be facing when she comes home and his credentials are second-to-none. It feels great to know that Aerin will continue to have the best care after she leaves the NICU.
Tuesday, October 25, 2005
Today Aerin had her first eye exam. I think it was worse for me than it was for her. The eye doctor, Dr. Carruthers, put numbing eye drops in her eyes before conducting the exam so she wouldn't feel any pain. She was, however, very annoyed by the light he had to shine in her eyes and she let the world know it. Frankly, it was a struggle not to pull the doctor away from her and beat him to the ground.
Aerin has Stage I Retinopathy of Prematurity (ROP), which is what you'd expect in a preemie of her gestational age. The doctor viewed it as good news and told me that there's no chance she'll be blind and almost zero chance she'll need surgery. It will probably resolve itself. Our NICU has had almost no cases of ROP, so I'm not too worried.
Aerin also had her bath today and she loved it. She was so worn out from all the crying she did during the eye exam that she was happy to relax in the tub. Actually, it's more like a small bucket. She went right to sleep after I tucked her into her freshly-made bed.
Andrew and I are interviewing a pediatrician tomorrow. The NICU nurses recommended him - he used to work in the NICU. He left to open his own pediatrics practice. I really think I'll feel more comfortable with a pediatrician who used to be a neonatologist. I think he'll understand her special issues more than a regular pediatrician. The nurses haven't steered me wrong yet.
Lastly, Aerin regained all the weight she lost and is back up to 2 pounds, 12 ounces.
Monday, October 24, 2005
Aerin is 6 weeks old today. The time has just flown by, but I can't wait until she's ready to come home. She's still doing well with her oxygen and feedings. She's still refluxing, but the Reglan and longer feedings are taking care of it.
One issue we're dealing with is her slow weight gain. She's such a high-energy baby that she burns more calories than she's getting. She loves to be awake and to move all around her isolette. All of the nurses comment on how active she is. That is truly a mixed blessing. On the one hand, it's great that she has the energy and muscle tone to move so much. On the other hand, it burns calories. Dr. Rose is upping her feeds to 36 cc's and adding fat to her diet in the form of an oil she gets twice a day.
Dr. Rose told us today that if Aerin continues to be as stable as she is now, we'll try dry nursing on Friday. I'll empty my breasts by pumping, then I'll offer Aerin a breast to see if she can latch on. If she can, it'll be very soothing for her. Since the breast is never truly empty, she might get a few drops of milk, which will give her a taste. She has a very strong suck, so we're optimistic about her ability to latch on. This will all be done under the supervision of the NICU lactation consultant and nurse, Beth.
Sunday, October 23, 2005
Aerin is 32 weeks gestational today and her progress is remarkable. She's now strong enough that she'll pull out any of her tubes, no matter how well they're taped. She's also finding her voice and crying more often. The nurses love it, because it means she's got plenty of energy and lung power. I'm not as happy, because I hate the idea of her having anything to cry about. She doesn't cry very often, really. She has a new way to torment me - she'll give one cry and by the time I get to her, she's either smiling or sleeping.
Her breathing is great - she's still at 21% and 2 liters. She does get bumped up to 25% when she's eating, because of the reflux. She's eating 25 cc's and digesting all of it. I can't believe she's eating 200 cc's per day! She had another very messy diaper and needed another one right when I was changing her. I thought it was adorable, but I think everything she does is adorable. She's getting more beautiful every day. Her eyelashes are finally turning from white to brown.
One product that is a lifesaver is her WubbaNub. The nurses were all atwitter when I brought hers in and they're considering buying them for the NICU. Aerin loves hers (she has the froggy).
Aerin had a good day. Her weight is holding steady at 2 pounds, 12 ounces. She's getting 25 cc's with her feeds now, so she'll be packing on the ounces soon. She's still at 2 liters on the Vapotherm and 21% oxygen (room air). She had a blood transfusion yesterday, but Dr. Weisberg felt that her hematocrit still wasn't high enough, so he gave her more blood this evening. I can tell that she's already feeling better.
We introduced her to our good friends, Brandon and Amy, who agreed that she's just adorable. We're so blessed with how supportive and loving our friends have been towards Aerin (and, of course, our families).
Aerin's Social Security card came today, which was kind of exciting. She's got all of her official documents now.
Friday, October 21, 2005
Aerin is continuing to do well. She's getting a blood transfusion this evening, which always makes her feel better. She'll get her bath afterward and I think she'll enjoy it much more. Her oxygen is still in the 20s and they might try her on the cannula again this weekend. She might do better with it after the transfusion. She hasn't had any bradys since they started treating her reflux, thank G-d. She'll get an eye test next week and she might try a bottle.
Thursday, October 20, 2005
Would you care to learn some fascinating Henrico Doctor's Hospital NICU history? NICU B used to be the Progressive Care Nursery (PCN). This was before NICU A, formerly known as the NICU, burst at the seams. The PCN moved to the third floor, leaving room for NICU expansion. So the PCN is one step ahead of Aerin, for now, but not for long.
Sadly, Uncle Daniel departs for home in NYC tomorrow. It's always great having him here.
Wednesday, October 19, 2005
As if that weren't enough good news - she's now getting 24 cc's at each feed. She hasn't had any reflux issues since they spaced out her feedings and started her on the Reglan, so they're confident in bumping her up. She's digesting everything beautifully - no residuals (leftover milk in her stomach) at all.
Aerin's Uncle Daniel (Andrew's brother) came to see her from New York City and she put on a show for him that was beyond adorable - smiling and sticking out her tongue and waving her arms all around.
Tuesday, October 18, 2005
Her reflux is much better with the longer feeds. They starting her on Reglan for the reflux because they are going to increase her to 22 cc's by tomorrow! Coincidentally, I am also taking Reglan to increase lactation.
Today is bath day - the best day of the week.
Monday, October 17, 2005
Otherwise, she slept for most of the day. She woke up briefly when Andrew kangarooed her, but fell right back to sleep. She also woke up when I changed a very messy diaper.
She had a mostly good day. She did have one brief brady, but came right out of it. Otherwise, she's still in the 20's with her oxygen.
I got to cradle her today for the first time. I have to take a break from kangarooing because of some possible breastfeeding issues, but they still wanted me to be able to hold her. She's big enough now that she can be swaddled and taken out of her isolette for short periods of time. I held her for 30 minutes and I couldn't take my eyes off her. It was the first time I got to examine her face up close. I've only been able to look at her through the isolette and you can't get that close. Plus, you can't see her at all during kangaroo care. I really love being able to do "normal" things with her and I've dreamed of cradling her for so long. She was pretty happy and looked around before falling asleep. I hated to put her back.
Saturday, October 15, 2005
So far, so good. There aren't any real changes with her oxygen and she's tolerating her feeds beautifully. They're going to hold her at 18 cc's and add 2 calories per ounce of breast milk. It's working really well - Aerin's up to 2 pounds, 10 ounces!
Tonight Aerin had a nurse she's never had before - Shannon. We talked about Aerin for quite a while and Shannon remarked that she's just flying through her development. Andrew and I are just so eager for her to come home that we forget how remarkable her progress has been. Most preemies born at 26 weeks and weighing what Aerin did are still intubated at her age, have had at least 1 surgery, have apnea and/or brady episodes once a day or more, and are struggling to put on weight. Aerin has had a very benign course, thank G-d. We want her to sprint to the finish line, so it's hard to keep in mind that she's jogging where most crawl (so to speak).
Yesterday Andrew and I walked into the NICU to find a wonderful surprise - Aerin was wearing clothes! She's big enough to be off the temperature probe, so she can wear clothing. We have a micropreemie ensemble for her that was a gift from our dear friends, Jim, Amy, and Emily Anne. It so exciting to see her in clothing - it's a tangible sign of how well she's doing.
Friday, October 14, 2005
Aerin still hasn't gone over 30% oxygen! She's getting good sleep, which is essential to her growth. Her bilirubin is slowly creeping back up, so she may have to go under the lamp again. No one is surprised and I'm not upset about it. She's comfortable under the lamp, especially now that she's big enough that the eye shades fit her properly (they were much too big when she was born).
Some of you may have noticed that Aerin is in a different isolette. She has "graduated" from the Giraffe, which is bigger than the one she's in. She isn't intubated and only has one line and her g-tube, which is much less equipment than the less stable babies. The g-tube has been switched from her mouth to her nose. She kept spitting and pulling it out of her mouth and she hates having it put back in. She won't be able to pull it out of her nose, which will mean less stress for her. Also, some people have asked why her cannula is so tight across her face. That is partly because her cheeks have filled out, but mostly because it has to be tight to keep the prongs in her nose. It's not painful or uncomfortable for her and it keeps the prongs in.
Today is bath day again. Tuesdays and Fridays are my favorite days of the week.
Aerin now weighs in at 2 pounds, 9 ounces! Her feeds are up to 16 cc's. She'll go back up to 20 by the end of this week, but not farther than that. Once she's tolerating 20, they'll just add calories to the breast milk so she'll continue to gain weight.
Wednesday, October 12, 2005
Incredibly, Aerin didn't go higher than the 20's in her oxygen percentage all day today. Even when we took her out of her isolette for kangarooing, she didn't need to go higher. That's amazing, considering that the transfer can be a bit stressful. She gets hiccups for the first minute or so of kangarooing, which is just adorable. It's completely normal and helps to strengthen her diaphram.
We did kangaroo care a bit differently today. Aerin's nurse, Lisa, put the chair in a reclining position and I laid down with her. It was extra nice for me because I felt her weight and movements so much more. Aerin was very unhappy to be put back in her isolette when I had to pump and cried a little. Lisa was thrilled that she has the energy and lung power to cry the way she did. It is still upsetting for me when she cries, but it no longer sends me to the verge of hysteria.
Dr. Dhande stopped by briefly to tell me how pleased he is with Aerin's progress. She'll go up to 14 cc's with her feeds this evening.
Tuesday, October 11, 2005
Bath time was great - I felt more confident this time. Aerin's nurse, Jennifer, showed me a new way to wash her hair. We swaddled her in a blanket and took her out of the isolette. Then I held her in a football hold and washed her hair with a baby brush. She loved it and I loved holding her like that. I really liked having Andrew there and he did a great job of capturing everything on film (we're still trying to figure out how to get video footage online). After her bath, I got to kangaroo her, which is always sublime. Jennifer told me that a mother's body will adjust to whatever temperature will benefit the baby - if the baby is cold, the mother will warm up and if the baby is warm, the mother will cool down. I know that there are some who will say that this is biology, but they're wrong - it's mothers' love.
Aerin is up to 2 pounds, 5 and 1/3 ounces!
Andrew and I often talk quietly while I kangaroo Aerin, as we did this evening. The things that most new parents are starting to find tedious by the time their babies are one month old are fantastic for us. Giving Aerin a bath is the highlight of our week and we're thrilled when she has poopy diapers (it means that her digestive system is working like it should). We know how special these things really are. And in some ways, it'll be easier for us when we bring Aerin home. We'll know what we're doing, because the NICU nurses are such good teachers and they really encourage us to be involved in her care.
Today we said good-bye to Aerin's New York City grandma, Rita Marx. We had a great visit and can't wait to see her next month!
I am going to give her another bath this evening and Andrew is planning to watch for the first time.
Monday, October 10, 2005
I just got back from the hospital - I just wanted to spend some more time with my baby girl. It's so hard being separated from her. Leaving the hospital is awful - it's like that old song, "Every time we say good-bye, I die a little..." I always thought that song was overly sentimental, but now it describes exactly how I feel.
Aerin is doing so well. She slept the entire time I was there, except when Jennifer, her night nurse, and I did her care (diaper change, temperature check, eye drops, etc.). I did the diaper change and temp, which I always do when I am there. I have mastered the art of making a regular preemie diaper fit my micro-preemie (lots of intricate folding). She was pretty happy to get the eye drops and opened her eyes wide and smiled - it was so adorable. She's back up to 2 pounds, 4 ounces and is taking 8 cc's per feeding.
Aerin celebrated her 4-week birthday by having her best respiratory day, ever. Her Vapotherm was turned down to 2 liters and she went all the way down to 21% oxygen at one point. That's room air! This is a very good sign - it means that she's closer to being off any supplemental oxygen.
Her feedings are up to 8 cc's with no problems.
She's still under the bililight, but she'll get another blood gas tomorrow morning and they'll check her bilirubin level.
I kangarooed her for about an hour today and she was mad when she had to go back in her isolette. She didn't cry, but she made a face like, "I am not happy with this turn of events." Then she fell asleep.
Sunday, October 09, 2005
I got to hold her for about 2 hours today! It was bliss. She had a brief bradycardia while I was holding her. It was so fast that her alarm didn't even have a chance to ring off and she brought herself right out of it. One of the nurses, Chris, said that she was just so relaxed being kangarooed that she forgot to breathe for a second. Aerin's day nurse, Debbie, showed me a new kangaroo technique. The old method is me sitting in a chair and the nurse taking her out of the isolette and handing her to me. With the new method, I lift her out of the isolette and put her to my chest and sit down with her. It's a new method that the nurses just learned in their latest clinic. The idea is that it takes less time for the babies to settle down and I can tell you that it works. Aerin didn't even open her eyes when I picked her up and put her to my chest. She snuggled right down and her stats stayed exactly the same. I love this method because it gives me the most hands-on time with her and because it's such a normal thing for a mother to do with her baby - pick her up out of her bed and hold her.
Saturday, October 08, 2005
Aerin is even better today. Her feedings resumed at 3 cc's. So far, so good. She'll go up to 4 cc's tomorrow morning if things continue to go well. Her cultures from Thursday are still negative, which means that there is definitely no infection! Her bilirubin is up again, so she's back on phototherapy. I asked Dr. Falterman to put her under the bililight, rather than the biliblanket. It was funny - he told me that he thought he was going to have to talk me into the bililight. Aerin doesn't mind the eye mask, but she just can't get comfortable on the biliblanket. She's much happier on a soft mattress, with her sheepskin and blanket, than on the hard, plastic light panel. Also, the bililight works much faster. I'd rather her be on the bililight for a couple of days than be on the blanket for a week.
Today was a big day - Aerin's paternal grandmother, Rita Marx, came to visit from New York City, it was the first time Andrew got to hold her, and the first time she wore her own hat. It was just wonderful for me to see Aerin being held by her Daddy. She settled right down and seemed to really enjoy it. She looked so cute in her hat, which is still a little big on her. The hat was a gift from our dear friends: Jim, Amy, and Emily Anne.
Friday, October 07, 2005
The transfusion really made Aerin feel better. She's breathing much easier and her oxygen percentage is back in the 20's and 30's. She looks a lot better, too.
Despite being off feedings, she didn't lose any weight. She's still at 2 pounds, 3 ounces. She will probably start back on feeds tomorrow morning, after the doctors get together to make their report.
Aerin has graduated from peewee diapers to preemie diapers. They're huge on her, but the peewees just weren't doing the job. She might be allowed to start wearing hats, too. It'll be a while before we can dress her, though.
I got to give Aerin a bath for the first time. We both loved it! I was a bit nervous, but Aerin's nurse, Natalie, was beside me the entire time. She assured me that I did great. It was just a sponge bath, but I did use real infant soap. Aerin was awake and alert the entire time and she didn't get stressed out at all. She frowned a bit when I washed her back, but she cheered up when I washed her hair. She was so happy to be shampooed that I swear she smiled. She has never looked more adorable and that's saying something. It was such a joy to be able to bathe her that I'm still walking on air.
She's also getting a blood transfusion because she's anemic, which is very common in young preemies. Other than that, she's fine. In fact, her breathing is actually much better than it was. She's on a lower percentage of oxygen and she hasn't had any apnea episodes.
We're disappointed, but not overly upset. Dr. Fraker assured us that the PIC line will come out once she's back on full feeds, which will hopefully be later this week. They're going to start them back much more slowly than they did before.
This is prophylactic medicine - they're not treating anything that's acute, they're just taking preventative measures. I'm glad about that - it will keep Aerin on a benign course.
Thursday, October 06, 2005
She had a good day. She had one very brief apnea episode, which the nurse thinks was from reflux. It's a big change for a tiny baby to go from no food to 10 cc's, so some reflux is to be expected. She was a little warm in the afternoon, so the nurse turned her isolette temperature down. That ended up making her too cool to be held today. Andrew is going to try tomorrow and I'm looking forward to seeing Aerin being held by her Daddy for the first time.
They monitor Aerin's temperature so closely that even a tenth of a degree change is noticed. When I say that she was warm, I mean that she was about .1 of a degree warm. She didn't have a fever or anything like that. She was about .2 of a degree cool, but they don't want to take any chances. Preemies are extremely sensitive to temperature changes.
We'll know the results of the latest stomach x-ray later today. The doctors haven't said anything to the nurse yet, which is a good sign. If it was bad, they'd have read it in-depth immediately and issue new orders. As usual, no news is good news.
Andrew and I will be going to a support group meeting that they hold in the hospital every first and third Thursday of every month. We went to one last month (it was on the day I was discharged and I was a wreck) and found it very helpful.
Wednesday, October 05, 2005
Aerin had an uneven day today. We got a heart-stopping call from the hospital informing us that they were stopping her feedings because her stomach x-ray showed that there was some dilation in one of the loops of her bowel. Her stomach had looked a bit distended, which is why the x-ray had been ordered. The doctor thought it might be NEC, even though she didn't have any other symptoms and her CBC was fine. However, between the phone call and the time Andrew and I got to the hospital, Aerin had made an epically huge poop. She filled up 2 diapers in under a minute. Even the nurse described it as "disgusting." Afterward, her stomach was much less distended and her x-ray was almost completely normal and her bowel sounds were vastly improved. The doctors and nurses are almost certain that it's not NEC and her feedings will resume tomorrow if her morning x-ray is normal.
As if that weren't enough, Aerin had 2 quick A&B (apnea and bradycardia) episodes while we were there. They were over so fast that we didn't even have time to get scared. The nurses weren't worried - it's normal for small preemies to have As and Bs (as they refer to them). If she was having 3 an hour, that might be cause for alarm. Aerin has had 3 total in her life, which is pretty remarkable. She's been fine since the episodes and is sleeping peacefully. She's finally off the biliblanket, so she's much more comfortable.
Aerin's grandmother (my mother), Elizabeth Gardner, went home today. She came up the week before Aerin was born, when they thought I was going to deliver. She has been a wonderful source of loving support, both before and after Aerin's birth. I don't know what I would have done if she hadn't been here, taking care of the house and fixing all of our meals and running all of our errands and doing everything else we needed so that Andrew and I could concentrate all our energy on Aerin. She hasn't even been gone for one day and we already miss her so much.
Tuesday, October 04, 2005
Aerin had a great Rosh Hashanah. She's getting 24 extra calories with her feedings. The doctors don't want to give her any more than 20 cc's of milk because she's so small, but they want her to gain even more weight. She was 2 pounds, 3 ounces as of yesterday (she hasn't been weighed yet today). Her sodium is low again, so they're giving her another supplement. She got a head ultrasound yesterday and it was completely normal. She'll get them every two weeks or so, which is routine for preemies.
Monday, October 03, 2005
She was loving her binky today - she sucked on it for about an hour during a feeding. She'll be ready when it's time to nurse in about 5 weeks.
Her nurse today was Sarah, who was at her birth and hasn't seen her since. She was amazed at how well Aerin is doing - it's truly wondrous that she's only on a Vapotherm and that she's eating 20 cc's.
Sunday, October 02, 2005
I don't think I've mentioned this before, but every day Aerin receives Theophylline or Aminophylline (the difference is delivery - one goes through her PIV and the other goes through her Vapotherm). She's gotten it since the day she was born. It keeps her from having apnea episodes (i.e. helps her remember to breathe). I'm just so glad that they have this medication available - our family owes so much to medical technology.
I want to thank everyone who has been reading and commenting on this blog. Your comments are very special to Andrew and me and we plan to save them to show Aerin some day. It encourages us to think of all the people who love our baby girl. I am sorry that we can't respond to everyone individually, but we just don't have the time. Special thanks to Anne (kq), Alan A., Jenna, Anna, Tracy (Farmgirl), Kwea and JenniK, Breyerchic, shelly, Amy, Jim & Emily Anne, Jim Lamb, Wendybird, Rabbi Shapiro, and Big Momma.
On another note - happy birthday to Aunt Cara (aka Cara Phillips), who has been my best friend since high school. We can't wait until she gets to meet Aerin.
Saturday, October 01, 2005
I got to hold Aerin for a full 30 minutes today. She settled down immediately and it was fantastic. Dr. Seguira said she's "doing great." She's up to 19 cc's with her feedings. They're being given over 2 hours because it's such a lot of food for such a little baby.
I thought I might be coming down with a cold, so I wore a mask today. You're allowed in the NICU if you have a cold, as long as you don't have a fever (which I did not). Obviously, I asked the doctors before I went to the hospital.