Friday, December 30, 2005
We took Aerin to Dr. Al-Mateen this morning. She still has a cough and some congestion, so we wanted to make sure everything is okay. Aerin is fine - her lungs are clear, her breathing is nice and slow, her pulse ox was 95%, and she's gained 12 ounces in the last 8 days. She now weighs 7 pounds, 4.5 ounces! Obviously, she's eating extremely well.
Tuesday, December 27, 2005
She's been home for almost 2 weeks now and we haven't had any alarms at all, which is awesome. As Aerin gets healthier and bigger, she gets more amazing. She can almost turn herself over from her tummy to her side. She's figured out how to suck her thumb, but it's too tiny to be satisfying, so she prefers her WubbaNub.
Monday, December 26, 2005
We are constantly amazed at how strong and alert she is. She will look for the source of noises like keys jingling or Momma's voice and she can push herself up with her arms and legs.
I am so happy to have her home this Hanukkah. I prayed for this the entire time she was in the NICU - it was my secret hope. I hope that y'all's Hanukkah is as happy as ours is.
Saturday, December 24, 2005
Friday, December 23, 2005
Aerin is sleeping peacefully in her bassinet, so I'm taking advantage. She's going down much more, which is a great help to me. Not that I don't love holding her and cuddling her, but sometimes I have to do things like eat and use the bathroom. Every day she does something new and adorable. Yesterday she grabbed hold of my shirt when I was feeding her and held on until she was done. Her grasp reflex is very strong - I've had to stop wearing necklaces.
Aerin is feeling better. Dr. Al-Mateen adjusted her medication and it's made a huge difference. She now gets Zantac every other feed for her reflux, instead of twice a day. She's also on Reglan, Mylicon, iron, and multivitamins. We give her the meds with syringes and she takes them easily, except for the vitamins. I don't blame her - they probably taste as bad as they smell. I mix them with a little bit of milk to make them go down easier. Dr. Al-Mateen's nurse, Tammy, could not get over how big and beautiful Aerin's gotten.
Yesterday I had to run some errands at Henrico Doctor's Hospital and I visited the NICU. Everyone was happy to see me and thrilled to hear that Aerin is home again. I was talking to Dr. Sequira, who was at Aerin's delivery, and he was amazed at how advanced she is. It was weird being back there, but it was good, too. It reminds me of how far Aerin has come and how remarkably well she has done.
Thursday, December 22, 2005
While Kira ran some errands this morning, Aerin and her dad were left to fend for themselves.
Tuesday, December 20, 2005
She did not want to stay in her bassinet today, so Momma and Daddy held her. She's in her sling right now.
Yesterday Aerin got to meet her Aunt Cara for the first time, which was very exciting.
We're going to see Dr. Al-Mateen tomorrow morning and Aerin will get her second RSV vaccine.
Sunday, December 18, 2005
Aerin is very advanced for a newborn - she can hold her head up and makes great eye contact. She focuses on objects for significant periods of time. She's also a Momma's Girl and will look around for me when she hears my voice.
It's a bittersweet day for me. It's wonderful to have our baby home with us, but I can't help thinking about what it would have been like if I had carried Aerin to term. The important thing is that she's healthy and thriving.
Saturday, December 17, 2005
Aerin had a good day at home. She spent most of it in her Maya wrap, which is a godsend. We're trying to get her used to sleeping in her bassinet or Pack n' Play, but she'll only go down if she's extra tired. She slept in the bassinet for 3 hours last night and about 1 hour today, which is progress. I also gave her a bath today, which she didn't like at all. However, it's much quicker and easier to bathe her at home - I have a great infant bathtub and much more room than in the hospital.
I also put my infant scale to use. Aerin is now 6 pounds and 2 ounces.
Friday, December 16, 2005
Aerin is doing wonderfully at home. She is eating and sleeping well and even slept in her Pack n' Play for a couple of hours. Mostly she likes to be held and snuggled and we are happy to oblige. She has gotten so big that we had to remove the preemie headrest from her car seat and readjust the straps. She is a whopping 6 pounds!
We have two wonderful nurses her, helping us out with Aerin - Anais and Rennie. We want to make sure that Aerin remains healthy. We're all hospitaled out.
Thursday, December 15, 2005
Wednesday, December 14, 2005
Tuesday, December 13, 2005
Monday, December 12, 2005
Sunday, December 11, 2005
She's 39 weeks gestational today and we had a milestone - Aerin went in her sling for the first time. My friend, Jenna, gave me a Maya Wrap, but I couldn't use it until Aerin was over 5 pounds. Well, she fell asleep in it and woke up when I got up and walked around (although I couldn't go far because of her leads and the oxygen). Now I can hold her and have both hands free, which is especially nice because Aerin doesn't like to be put down.
Saturday, December 10, 2005
Friday, December 09, 2005
Thursday, December 08, 2005
Wednesday, December 07, 2005
Tuesday, December 06, 2005
Monday, December 05, 2005
Sunday, December 04, 2005
Friday, December 02, 2005
Thursday, December 01, 2005
We so appreciate all of the prayers and good thoughts that so many people have been sending to Aerin. Please keep it up and hopefully we'll have our baby home again soon.
Wednesday, November 30, 2005
Tuesday, November 29, 2005
Kira rode along in the ambulance (which was used just to be on the safe side), and I met them there. After being admitted, she required a lot of suction, and the doctors decided to intubate her. The prognosis is very good. She most likely has a viral infection, probably RSV. That means that antibiotics won't help her. The course for her is help with breathing until she can beat this on her own. We have no doubt that she will, but good, and make it home by her due date after all. We just weren't expecting her to make it home before then for a second time.
Monday, November 28, 2005
Aerin is the nicest baby I know. She's very mellow and easygoing - most of the time. She's pretty much content sleeping between feedings and diaper changes.
Sunday, November 27, 2005
Saturday, November 26, 2005
Friday, November 25, 2005
This morning we took Aerin for her first check-up at the pediatrician's office. We met with Dr. Cantor, who filled in for Dr. Al-Mateen's. Aerin weighed in there at 4 lbs., 14 oz.; that's a considerable gain since she left the hospital, and a very good sign. As usual, the doctor was very impressed with all of the progress Aerin has made.
Wednesday, November 23, 2005
Tuesday, November 22, 2005
Aerin gained 2 ounces last night. I'm so glad that she did - I was worried because she didn't gain the last time we roomed in. We had a much better night that the first one. Aerin got her new apnea monitor (the one we'll be taking home) and it didn't ring off once. It's not attached to her with sticky leads. The leads are velcroed to a band, which is wrapped around her chest. It's much more comfortable for her and it obviously works better, too. I got about 2 hours of sleep.
Our travel system finally arrived today. We put it together and it's ready to go. We brought it to the hospital and they did a seat check. They put Aerin in the infant carrier/car seat for 30 minutes to make sure the position didn't make her desat. She did just fine, although she wasn't sure that she liked it. Seeing her in the seat reminded me how small she is - we pulled the straps as tight as they will go and they just fit her.
Our pediatrician, Dr. Al-Mateen, stopped by to say hello. I was nursing, so he didn't get a close look at Aerin, but he'll be seeing plenty of her soon enough.
Grandma Rita went back to New York City today. We loved having her here and she helped us so much with preparing the house for Aerin's arrival. Grandma Elizabeth is coming up on Thanksgiving Day to help us with the transition.
I feel nervous, but calm. This is the end of a long, long wait. I've been waiting my whole life to be a mother and I've waited 71 days for my baby to be home where she belongs.
Monday, November 21, 2005
Tomorrow will be the 100th, and hopefully the last, day in a row I've been to the hospital, but there's no comparison to what Kira and Aerin have been through.
Sunday, November 20, 2005
I have to admit to feeling a bit nervous. I had a long talk with Dr. Rose, who assured me that they would never discharge her if she wasn't ready. Dr. Rose pointed out that Aerin is mature. She can regulate her body temperature and eat - both of which are impossible to do if one's brain is immature. She hasn't had any bradys or apneas in over a month. In fact, she's no longer wearing a pulse ox probe. It makes diaper changes a lot easier.
Andrew and I went shopping with Grandma Rita today and got almost all the things that Aerin will need when she comes home - bassinet, diaper genie, scale, Pack n' Play, etc. I feel much better having all of those things ready to go. It seems so surreal that there's a bassinet next to my bed and a Pack n' Play in my dining room.
I'm rooming in again tomorrow night. They're going to give us the good monitor to start with, so I'm looking forward to a better night. It's hard to sleep when a brain-slicing alarm goes off every 10 minutes for no reason at all. It was both wonderful and scary to be on my own with Aerin. We really bonded during her 11:00 p.m. bottle, when it was just the 2 of us, without the crowd and noise of the PCN.
I'm going to try to get some sleep while I still can.
Saturday, November 19, 2005
Aerin was a little tired from the experience as well, but she had a good day otherwise. Grandma Rita is in town again; she got to hold Aerin for the first time. It was a thrill to see that.
Yours truly had a big day as well. Aerin's dad gave her a bottle feeding and diaper change for the first time.
Friday, November 18, 2005
We're looking at Monday or Tuesday for possible discharge dates. Aerin is getting her Hepatitis B vaccination today, which is something they give to babies shortly before discharge. Two months ago, I would never have thought that my baby would be home by Thanksgiving. I am so very thankful this year!
Before we take her home, I'll be rooming in for a couple of days at the hospital. They give us a hospital room and I stay there with Aerin. That way, I do my first solo run with the doctors and nurses around the corner.
I also discovered that Aerin likes to be rocked. We already have a rocking chair, so that's one thing I can cross off my list.
Aerin continues to gain weight, even with all her hard work feeding. She's at 4 pounds, 6.8 ounces!
Thursday, November 17, 2005
Aerin had a so-so day. Dr. Rose changed her feeding schedule - she now gets 2 out of 3 feeds from a bottle or breast. I'm allowed to nurse her 3 times each day, starting tomorrow. We nursed twice today. The first time, 5:00 p.m., did not go well. Aerin was extremely fussy and only did about 10 minutes (she got 18 cc's through her tube). She was having gas and reflux at the same time, which would make anyone upset. I had asked Dr. Rose if we could try Mylicon for the gas and she had approved it. It arrived from the pharmacy just as Aerin was at her fussiest. Aerin's nurse, Gina, gave her the drops, unhooked her from the monitors, and let me walk around the PCN with her. I don't know if it was the Mylicon or the walking, but Aerin calmed down instantly. It was as if someone had thrown a switch.
The next breastfeeding session was much better. Beth, my lactation consultant (and a NICU nurse), was there and I guess Aerin wanted to put on a good show for her. She fussed a little at first, but then settled down and nursed for 25 minutes. I gave her a bottle afterwards and she didn't drink any of it. That is going to be the new policy - offer a bottle after breastfeeding. Since overfeeding can aggravate reflux, the doctors want to let Aerin decide if she's still hungry after breastfeeding.
We were startled to find out today that we might be able to take Aerin home in less than 2 weeks. She'll probably move to all bottle or breast feeds in the next 4 days and that's her only issue. She might be held back because she sometimes needs oxygen during bottle feeds. It's delivered through "blow-by" - we just hold the oxygen tube near her nose while she eats. It is, as always, up to her. Andrew and I will be taking infant CPR, which I highly recommend for the parents of all babies - preemie or term. We've passed almost everything else on the discharge checklist (diapering, bath, etc.). Aside from CPR, we just have to bring our car seat in for inspection. It is due to arrive on Tuesday, so we'll take care of that.
I'm still reeling from the thought of her coming home so soon. It's something I wouldn't let myself think about for so long and now it's so close.
Tuesday, November 15, 2005
Aerin continues to ace all of her tests. Her retick count is extremely high, which is excellent. It means that she'll pull herself out of the anemia that much faster. Her chest x-ray was completely normal. She passed her hearing test today! It's pretty rare for a preemie to pass on the first test and the technician was very impressed. I'm very relieved - I was in the NICU the last time the technician came to do hearing tests and no one she tested passed (Aerin couldn't be tested then because she was still in the isolette). Any degree of hearing loss can impair a child's ability to speak, so I'm thrilled that Aerin won't have those problems.
I spoke with Dr. Rose today. She hadn't seen Aerin in a couple of weeks and was amazed at how big and healthy she is now. She really has gotten the best possible outcome in every single area.
In other news, my diaper bag arrived today and our stroller shipped. Looking at my diaper bag (Fleurville Mothership - Pink Stripe) helps me to remember that she really will come home soon. Going back and forth to the hospital can get wearying, so it's nice to have concrete reminder that there's light at the end of the tunnel.
Don't forget to celebrate Prematurity Awareness Day 2005. The March of Dimes has many ways for people to help in the fight against prematurity - from wearing awareness wristbands to writing to Congress.
Monday, November 14, 2005
Don't forget, November 15th is Prematurity Awareness Day. You can find ways to show your support at the March of Dimes web site.
She did better at the breast today - 25 minutes. I just love nursing her. She's so peaceful when she's nursing and usually falls asleep. Her warm little body is snuggled up against me and everything is right with the world.
Saturday, November 12, 2005
Aerin is 2 months old today!
She did better at the breast - she went strong for 20 minutes before she conked out. She's doing well with the bottle feeds, too. She gets 38 cc's now and it shows - she's up to 4 pounds, 2.2 ounces.
Andrew and I bought our travel system today (stroller/car seat/baby carrier combination). I'm so excited for it to arrive, but I'm more excited for the day when we wheel Aerin out of the hospital in it.
Friday, November 11, 2005
Today was pretty uneventful. Aerin ate for 10 minutes at the breast, then fell asleep. The nurses say that she's doing great, but I'm frustrated. This is the last step before she can come home and I want her to get there right now. I know I have to be patient, but easier said than done.
We do have some big news - Aerin is 4 pounds (4 pounds, 0.06 ounces, to be exact)!
I bought diapers at the Kroger today (Pampers Swaddlers - Newborn Size). I almost cried, I was so happy. I've waited so long to have a baby to buy diapers for and I've waited so long for her to come home.
Wednesday, November 09, 2005
Aerin has entered a phase where she won't go to sleep unless someone is holding her. I think it's adorable and am always happy to oblige her. She's a big girl now - 3 pounds, 14.66 ounces.
The good news keeps coming in floods. Today was a monumental day for our entire family. Aerin came off the cannula! No more supplemental oxygen. It was the first time I've ever seen her without her nasal tube (except for when she was on the vent) and she looks even more beautiful without it. We also got the results of 2 important tests back. Her head ultrasound is completely normal. That's her 3rd normal head ultrasound and Dr. Weisberg told me that we can basically rule out any chance of brain bleeds or damage. She had an eye test and her ROP resolved itself! I have to admit that I was worrying about that one. The only test she has left is her hearing test. I don't know when it will be, but hopefully within the next week or so.
Earlier this evening, Aerin nursed for the very first time. She latched on immediately and managed a few sucks. As her nurse, Nancy, said, this is exceptional for a first attempt. She dry-nursed while they gave her a full tube feed, so that she can connect the breast with filling her tummy. She did a couple of sucks during the feed and a couple right after and it wore her out. I loved it and cannot wait until she's nursing exclusively. Nancy said that she has a really good chance to go home nursing. The lactation consultant, Beth, is going to sit in with us tomorrow. I've worked with Beth to increase my production and she's great. She's also a nurse in the NICU. (Incidentally, today I helped her find nursing pamphlets in Spanish for a patient who speaks no English. I can't believe I remembered enough, but it just came back to me.)
It was a truly precious event for our little family. After making sure Aerin was positioned correctly and her feeding was hooked up, Nancy left Andrew, Aerin, and me alone in the Bonding Room. We've waited so long and it was so natural for us all to be together while I fed the baby. I can't wait till we can be together like that in our home.
Monday, November 07, 2005
November 15th is Prematurity Awareness Day.
Sunday, November 06, 2005
I am feeling overwhelmed with all the rapid changes Aerin is going through. It's a good kind of overwhelmed, because all of the changes are good ones. She's down to 0.1 liter of oxygen and tolerating it beautifully. She's still on room air, which is astounding. She's barely needing any supplemental oxygen at all. After watching all those desats, I'm still thrilled to look at her monitor and see her pulse ox in the 90s. She does get turned up for feeds, though, so she won't have to work to breathe and can concentrate all her energy on eating. She's doing wonderfully with her bottles and took all of her yesterday evening one and all but 1 cc of this mornings.
The big news is that she finally moved into a bassinet! They're monitoring her temperature to make sure she can keep herself warm and so far, so good. I can hardly believe that I can stare at her all I want and there isn't a plastic wall between us. We can hold her pretty much whenever we want now and I'm going to build some huge arm muscles because I'm never putting her down.
It's very different up there. Aerin is the only baby in an isolette and the other babies are all so big. There are hardwood floors, which make the unit look less clinical. There are more windows, too. The nurses are as nice and professional as the ones in the NICU. I have yet to meet a nurse who isn't nice and extremely competent at Henrico Doctors'.
Aerin had a great day. She had the excitement of her first elevator ride and is still on room air (21%) at 0.3 liters. She is nearing the 4 pound mark - she's 3 pounds, 11.7 ounces.
Friday, November 04, 2005
"What's that? a crib?" you ask. Yes, she should come out of the isolette any day now. She's about ready, but she's been weathering so many changes recently that something just has to wait. She's been weaning down to room air on the cannula (most of the time). She's gone up to 32 ccs per feeding, and she now gets two bottles per day (soon to be three). Her feedings have been sped up to 30 minutes; it wasn't too long ago that her feedings lasted 90 minutes.
Finally, she gained weight yet again, tipping the scale this evening at 3 lbs. 10.2 oz.
We went to the parents' meeting this evening. We were the "veterans" there - we had the most premature baby, and she's been in the NICU the longest. The nurse, Tammy, even described us as being "7.5 weeks in." It really helps to talk to people who are going throught the same thing we are. It also helps to have so many people supporting us, online and off. Thanks, everyone.
Thursday, November 03, 2005
Her reflux just goes on and on. She desats for a hour after each feeding because of it. It's not a big deal medically, but it's upsetting for me. Since she brings her numbers up herself, the doctors aren't worried. I never anticipated her getting reflux and I really wish it would go away. My schedule is changing a lot, since I want to be the one to feed her and she gets her bottles 8-12 hours apart.
She's back up to 3 pounds, 6.3 ounces.
Tuesday, November 01, 2005
Aerin took 2 entire bottles today! Her first was at 11:00 a.m. and her second was at 11:00 p.m. The morning bottle was 29 cc's and the evening bottle was 30 cc's. It was amazing to watch such a teeny baby eating so much. She's really a natural. The speech therapist is going to teach me how to feed her tomorrow. You have to hold her in a very specific way, so that she is in the optimal position to swallow and breathe. You also have to burp in a specific way - not pat her on the back like you would with a term baby. I'm so happy to finally be able to feed her myself, instead of a pump or a nurse.
The goal is to replace all 8 tube feedings with bottle feedings.
She's at 2 bottle feedings a day and she'll move up to 3 in 2 days. Her tube feedings are only spaced out over an hour now, down from 90 minutes. It hasn't caused her reflux to increase, thank G-d. She has about the same amount of reflux (mild) with the bottle that she does with the tube. The bottle is hard work for her. She is exhausted when she's done and sleeps very deeply. That's great for her - she doesn't usually sleep that deeply. She lost an ounce, which is to be expected after all that hard work. She's 3 pounds, 5 ounces.
She still had her bath today and she did fine. I did most of it myself, with the nurse and Andrew looking on. Afterwards, I held her upright to help with her reflux. She looks extra adorable when she's all clean and dressed in fresh clothes and swaddled up in a soft blankie.
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.
Friday, September 30, 2005
Aerin is doing well. She did not get a transfusion today. Her hematocrit was borderline, so the doctor wants to give her a chance to resolve the anemia by herself. She's back on the Vapotherm. I'm glad about that - I didn't think she was ready to be on a regular cannula. Her feedings are now up to 17 cc's!
She was moved from NICU A to NICU B. They just needed to even up the unit and they chose to move Aerin because she is the most stable baby in NICU A.
Today is a very big day for us - I might get to hold her! As long as she's stable when we get to the NICU, I'll be allowed to do 30 minutes of Kangaroo Care. I am beside myself with excitement.
Thursday, September 29, 2005
There's more big news. Aerin was moved down from the Vapotherm to a regular nasal cannula. This means that she is getting very little help breathing - she's getting a lower percentage of oxygen with lower pressure.
This is really astonishing progress and we're very pleased. To tell the truth, though, I'm somewhat overwhelmed - she's taking such big steps so quickly.
If she continues to tolerate her feedings as well as she has been, she won't need a PIC or a PIV line. Those are used to deliver nutrients and she's getting all she needs from my milk. Those lines can be sources of infection, so we're very pleased. Since she's getting so much milk and she's so little, she gets it over the course of an hour. She gets a binky during her feedings (if she wants it) so that she can learn to associate sucking with filling her tummy. She's very good at sucking, which bodes well for the time when she'll be able to nurse. That won't be for another month or so. Nursing involves sucking, swallowing, and breathing at the same time, which is too much for a young preemie.
She's down to 2 liters on the Vapotherm, which is extremely low. She's back on the biliblanket, but since she gets to be in a snuggli, she doesn't mind.
Wednesday, September 28, 2005
She has grown from her birth length of 12.75 inches to 14 inches. It looks like she'll take after her father in height (he's 6'5''). Her weight is stable at 1 pound, 15 ounces.
Once again, Aerin was very stimulated. Having one line removed and another put in was a lot of excitement for her. Once again, I had to whisper because she gets worked up when she hears my voice.
She is up to 11 cc's with her feedings and is digesting everything like a champ. She's still on the biliblanket, but she may go off it when she finishes her antibiotics.
She was very stimulated yesterday, so much so that I wasn't allowed to talk to her or keep her isolette cover open. She got a bed bath and had 2 diaper and bed changes in 3 hours. That is much, much more stimulation than a preemie her age normally gets. It had to be done, but it took her a long time to go back to sleep. Over-stimulation (from light, sound, and too much touching) can be harmful to preemies and needs to be avoided. Usually, when Aerin hears my voice, she calms down. Yesterday, she heard me and got very excited (all her numbers went up, which is not dangerous, but not helpful, either). She had her eyes wide open for almost the entire time I was there. She loves to look around, even though she can only see shadows at this point. She finally closed her eyes and drifted off when I left. She's been sleeping today, which is great. She's got to get plenty of rest so that she can get to 2 pounds this week.
Tuesday, September 27, 2005
It turns out that I'm allergic to the scrub soap in the NICU. Dr. Rose has given me premission to scrub with another kind of soap that they have in there and gave me some A&D ointment, which worked wonders.
Monday, September 26, 2005
Our family also has another, smaller milestone today: I am allowed to drive again. It's great to have my independence back and it's easier for Andrew to get his work done without having to plan around my schedule. He has been fantastic throughout my entire difficult pregnancy, the bedrest, and Aerin's birth. We've been married for almost 5 years, and I've never loved him more.
Something is up with the index and we're not sure what. It's at the very bottom of the page for some reason and we have no idea how it got there or how to fix it. Please bear with us, as we probably won't get around to fixing it for a while (or at all). We're kind of hoping it'll fix itself.
Special thanks to my friend Sarah Townsend, who hand-knitted 2 gorgeous hats for Aerin. We can't wait until she's big enough to wear them.
Sunday, September 25, 2005
The big news is that Aerin gained an ounce and a half. She currently weighs in at 1 pound, 14.5 ounces.
The CPAP is held onto her face with a hat. It's very comfortable for her, which is the important thing, but it looks utterly adorable.
Saturday, September 24, 2005
Her hematocrit was low, so they decided to do a blood transfusion. They are also stopping her feedings for now, in case she is reacting to reflux. They'll most likely resume them on Monday. They're starting her on antibiotics, on the off chance that she has an infection. We won't get her cultures back for 48 to 72 hours. Lastly, they're starting her on Lasix. She's still on the biliblanket, but we're hopeful she'll be able to come off of it tomorrow.
Aerin slept through all of this, which is certainly a blessing. Andrew and I are somewhat worried, but we're confident in the doctors and nurses and we know that this is just a bump in the road of Aerin's recovery.
I know. It’s all wrong. By rights we shouldn’t even be here. But we are. It’s like in the great stories, Mr. Frodo. The ones that really mattered. Full of darkness and danger they were. And sometimes you didn’t want to know the end. Because how could the end be happy? How could the world go back to the way it was when so much bad had happened? But in the end, it’s only a passing thing, this shadow. Even darkness must pass. A new day will come. And when the sun shines, it will shine out the clearer. Those were the stories that stayed with you. That meant something, even if you were too small to understand why. But I think, Mr. Frodo, I do understand. I know now. Folk in those stories had lots of chances of turning back, only they didn’t. Because they were holding on to something.
Friday, September 23, 2005
She's tolerating the biliblanket fairly well. She's a bit more squirmy than usual, but that is partly because she's not in a snuggli. She is incredibly strong - she pushes herself up with her arms and arches her back so that she almost rolls over. It's really astounding, even the nurses are amazed.
Her feedings were increased again. She's up to 5 cc's every 3 hours. She gained another 1/3 of an ounce, which brings her up to 1 pound, 13.66 ounces.