Day 79: Hanging in There

Aerin's lungs are somewhat less "squeaky." They are going to start increasing her feeds; we'll see how she handles it. Not that it matters terribly, but they haven't quite nailed down what ails her. All of the tests have come up negative so far, but those results aren't definitive. Whatever it is, Dr. Dhillon says, it will probably run its course in 3-4 days or 7 days.

Day 78: Not Such a Good Day

Aerin had to be rehospitalized today. It turns out that what we all thought was a head cold was something worse. She has come down with a pretty bad infection, although she is now stable and comfortable. Today, she was a little pale, lethargic, and not eating very much. So we took her to the pediatrician's office. There, she weighed in a couple of ounces lighter and had an apnea episode. Dr. Cantor decided she that she should go to St. Mary's.

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.

Day 77

Poor Aerin still has her cold, but it's not getting worse. What with all the germs floating around these days, I guess it's not the best time of the year to be a baby, especially one that's not even supposed to be born yet!

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.

Day 76

Aerin is holding her own here at home. Dr. Cantor says that her cold may last from 7-10 days, but I'm hoping it won't be that long. We're running a cool-mist humidifier and giving her saline nose drops, both of which seem to be helping. She's eating like a champ and doesn't have a fever, which is great. It can be a bit overwhelming taking care of a sick infant, but I have a lot of help. Andrew is a great daddy and having my mother here is a blessing.

Day 75

A little bit of bad news to report today: Aerin has a head cold. It's not serious at all, and the doctor laughed and mocked us when we wondered whether Aerin should be readmitted.

A little bit of good news: Aerin's weighs five pounds!

Day 74: Catching Up

Sorry we didn't get around to posting an entry yesterday. Our hands are a bit full!Happy belated Thanksgiving to all! Yesterday went very well, as Aerin is sleeping a bit in between feedings. We didn't have much of a Thanksgiving celebration, but it was still the best Thanksgiving we could ask for. Grandma Elizabeth arrived in town and is helping us out a great deal. Kira is sleeping when she can and is getting into a good routine.

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.

Day 72: Even Later

Day 72: Later

Day 72

Day 71: Homecoming Eve

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.

Day 71: We Jumped the Gun

It turns out that Aerin needs to stay one more night. There's absolutely nothing wrong; she just needs a routine eye exam before discharge. We were told that today was the day, but there was a bit of confusion, evidently. We're sorry we got everyone's hopes up, but it's still just a mere matter of hours. And it gives us a little more time to get ready; we're still waiting for UPS.

Day 70: What Time is Check-Out?

Kira is rooming in again tonight, and we are expecting Aerin to be discharged tomorrow. Fortunately UPS is delivering the car seat/stroller set tomorrow, and it will be put to use immediately. Well, once Aerin's home, she's probably not going anywhere before her first appointment with the pediatrician. Everything else is ready; the house is spotless, thanks to Kira and my mom (no thanks to Reggie and Marlowe).

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.

Day 69

I can't believe my baby will be home for Thanksgiving. Even 3 weeks ago, I would never have thought she'd be home this soon. She's up to 4.5 pounds.

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.

Day 69: The Hour Draws Near

Aerin has all but worn out her welcome at the hospital. After so many weeks with no end in sight, she's 4.5 lbs. and off the oxygen monitor, with nary a tube or piece of tape on her beautiful face. We're fairly certain she'll be home Tuesday.

Day 68: The Aftermath

Kira did a spectacular job last night rooming in with Aerin, as her craven husband fled to "look after the dogs." The staff was nice enough to find a cozy room just across the hall from the PCN where Kira could have a go at taking care of Aerin all night long. Unfortunately, Aerin's apnea monitor kept losing its signal. Each time, it would sound an alarm shrill enough to rouse dogs sleeping miles away. Eventually, the nurses gave in and swapped the monitor out for a better one. Aerin's Momma will room in at least once more before the discharge.

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.

Day 67: Rooming In

There won't be a blog entry tonight because I am rooming in! I will be spending the night in the hospital with Aerin. It will be the first time I've ever been alone with my baby. I want to room in for more than 1 night, which they are very open to.

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!

Day 66

Aerin had a somewhat better day today. We nursed 3 times in a row and she did very well. She did 25 minutes for the first 2 times and 15-20 minutes the last time. She refused a bottle after the first 2 times, but did take 8 cc's after the last. She was a bit fussy during the last session, so I wasn't surprised that she wanted a bit more. She's completely off tube feedings as of today. The next step is to wean her off the blow-by during the feeds. It's also the last step - she goes home after that.

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!

Day 65

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.

Day 64: Prematurity Awareness Day

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.

Day 63

Aerin is 9 weeks old today and weighs 4 pounds, 5.4 ounces. She breastfed for about 25 minutes. They give her 18 cc's through her tube after she nurses, just in case. Her crit is low (32), but she's reticking (creating more red blood cells) well all on her own, so she won't need any more transfusions. It's nice to have those behind us.

Don't forget, November 15th is Prematurity Awareness Day. You can find ways to show your support at the March of Dimes web site.

Day 62

Another milestone today - Aerin is 35 weeks gestational. She weighs four pounds, 3.5 ounces and is 16.0125 inches long. She was extra super adorable today and was in a pretty mellow mood. She's been off the caffeine since Wednesday and we'll know this Wednesday if she'll be able to tolerate being off it (it takes 7 days to get out of your system). The caffeine helped her remember to breathe, so we'll see if she still needs reminding.

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.

Day 61: 2 Months Old!

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.

Day 60

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)!

Day 59

Aerin is 0.3 ounces away from 4 pounds (she's 3 pounds, 15.7 ounces). It seems like she's teasing us. She had a pretty good day, aside from some fussiness due to gas and reflux. She nursed at 2:00 p.m. and went strong for 15 minutes, then fizzled out. She was still hungry and chugged 15 cc's from a bottle. She took all but 2 cc's of her 8:00 p.m. bottle. She's on a 3 bottle, 1 breast, 4 tube schedule - she gets a tube feeding every other feed.

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.

Day 58

She did it. Aerin nursed successfully and got an entire nutritional feeding. Thank goodness for lactation consultants - Beth helped so much. We tried using a breast shield and that was all it took. She can latch onto the nipple without the shield, but her mouth is so small that it's very hard work for her to elongate the nipple. As Beth put it, there's no such thing as a preemie-sized breast. The breast shield fixes that problem and she ate like a champ for the entire 30 minutes. She seems to like it better than the bottle, although she slept during most of it. Nursing is so much better than pumping - there's really no comparison. She and I are perfectly at peace during and after nursing.

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.

Day 57: It Just Keeps Getting Better

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.

Day 56

Aerin just keeps getting better and better. She is up to 36 cc's with her feeds and hasn't desatted in days. She's now allowed to eat as much as she wants with each bottle feed. She took 25 cc's with the morning bottle and all 36 with the evening bottle. Her reflux was better today, too. She's up to 3 pounds, 12.4 ounces.

November 15th is Prematurity Awareness Day.

Day 55: More Changes

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.

Day 54: Matriculation

Today Aerin gave us the best anniversary present we ever got - she moved up to the PCN (Progressive Care Nursery). We found out when we went in for her morning bottle (she took half of it and all of her evening bottle) that she was going up today. Even though I knew she was on the list, I was still surprised. She went up at 3:00 p.m.

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.

Day 53: Big Baby Steps

It's not every day that the NICU doctor gets on the phone with you just to say how happy he is with your baby's progress! Dr. Falterman said that Aerin is now a PCN candidate. It's now just a matter of securing a crib for her up there.

"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.

Day 52: Much Better

What a difference a day makes. Aerin is so much better. Dr. Seguira gave new orders that really helped her. He figured out that she should be getting only half her feed in the bottle. Otherwise, she gets the entire feed over 30 minutes, instead of an hour. That is too fast - it's no wonder she was refluxing more than usual. He also ordered the milk thickener for her tube feeds (she was already getting it in her bottles). She got all the way down to 25% on her oxygen, which is the lowest she's ever gone on the cannula. That is so incredible. Just yesterday she was desatting at 60-70%. She also gained weight again - she's up to 3 pounds, 8.7 ounces.

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.

Day 51

I'm pretty tired, so it's going to be a short update. I gave Aerin a bottle today for the first time. Actually, I gave her 2 bottles. She took all 30 cc's with the morning one and 28 cc's with the evening one. I love feeding her - it's the best bonding we've done. She kept stopping to stare at me during the morning one and it was very adorable. She got the hiccups at one point and looked at me like, "What do I do?"

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.

Day 50

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.