She's Home!

Our family is finally back together under one roof! Anna Therese graduated the NICU and came home on May 15, exactly 10 weeks after she was born. No child's homecoming has ever been so photographed. Here she is all ready to go.

Our favorite nurse, Pattie, who stuck with us for the duration and took care of Anna like her own, walked us out. We may not miss the NICU, but we do miss Pattie.

The kids made a welcome-home banner for Tess. It's been ready for a looong time.



They were thrilled to walk in and see the baby at home.

Tess had her first pediatrician's appointment Friday and is continuing to gain weight at home - big relief. We've been told we should keep her home for a month, but once we get the green light, we can't wait for Anna to meet all her friends who have been praying for her and thinking about her. She's a lucky baby to come into a world with so many people who care.

Countdown to Discharge

Not really a countdown since we don't know what day it will be, but it's close! Anna is taking six of eight daily feeds orally, so if we can just get her off those final two tube feedings, she's free to go. She's beginning to have some fussy spells and clearly enjoys being held and talked to - in other words, acting like a full-term baby! We are fast checking things off our pre-discharge list. Anna passed her hearing screen, Paul and I took an infant CPR class, and we're getting ready for a carseat check. As always, a big thank you for all the help and prayers! Every single person who has offered up a prayer has played a part in how well she's done. We are forever grateful.

Livin' Outside the Box

She finally made it. Goodbye isolette, hello newborn crib ...

Day 51

Slooow progess lately. The one thing we can count on to improve daily is Anna's weight - she is up to 5 pounds, 6.1 ounces! That's pretty close to what Blake, Abby and Kate weighed when they came home from the hospital - normal baby size for us! This, however, does not change the fact that she is still a preemie and needs to develop just a little bit more before she can really handle her feedings and come home. She is 36 weeks, so we are getting close. We had an occupational therapist come watch her eat today and were able to get some good advice. I had no idea how complicated this process was! I learned all sorts of things about preemie neural development.

Last week we were up to four oral feedings per day (along with four tube feedings), but then we backtracked some and went back to two oral feedings a day. Tess is pretty anemic but is largely asymptomatic, so we've avoided a blood transfusion so far. Still trying to wean her out of the isolette. The doctor finally threw the protocol out the window and let her wear a sleeper to stay warm (usually the rule allows onesies only), but even that is only marginally helpful. They are doing their best to help us get Tess home. Our nurse today went and got a crib and put it in her room so we'd be ready for it. Trying to be patient.

More pictures coming soon ...

Getting Bigger!

Tess is 35 weeks today. The nurses have been telling us all along that this is the week when preemies start to "wake up" a little more and start eating better, so I have high expectations. She has been eating really well anyway - two bottles per day, the rest through the tube - but the doctor keeps increasing her feedings as she gains weight, and sometimes she has a hard time keeping up. Just this past week she went from 32 mL (a little over an ounce) to 40 mL at a time. She weighed 4lbs 5oz last night, but that number is probably wrong already, as she's been gaining more than an ounce per day.

She continues to live up to her feisty reputation. Yesterday she refused her bottle altogether at noon - and the nurse tried everything - used a syringe to suck the air out of her belly, suctioned her nose, checked her mouth for thrush, etc. We gave up, and later Tess pulled out her feeding tube, including ripping the tape off her face. I'm so proud!

Sunday is a day kids can visit, and it was nice to have them all together. Thanks to Aunt Amy for visiting again!

We continue to be touched by the tremendous amount of support that's been offered by friends and family. We could not do this without all of you! The meals, the prayers, the cards and phone calls, the playdates ... we are very blessed. Thank you!

Happy Easter!

Hope is indeed alive! Tess had a great first Easter. She took her full bottle for the second day in a row, which means she graduated to two bottle feedings per day. Today she nursed so well that we were able to count it as a bottle feeding, and if she can pull that off again tomorrow, she'll move up to three feedings a day. Looking forward to the day we can lose the bottles entirely. Baby steps.

In another Easter miracle :), the doctors mentioned today that she would definitely be coming home before her due date of May 20. She's been doing really well, so I figured that would be the case, but the exciting thing to us was the fact that the doctors even broached the subject of her being discharged. They'd never mentioned it before, except for the standard line they give all preemie parents - that discharge will be due date plus or minus two weeks. I'm glad to know they have her discharge on their minds!

Here's our official Easter picture ... four of us managed to keep the Easter outfits on through lunch. :)

Notes From the Week

Tess had her second cranial ultrasound, which showed that the bleeds seen in the original ultrasound had not gotten worse - just what we hoped to see.
Had to restart her caffeine because, although going off of it stopped her tachycardia, she started forgetting to breathe all the time, so it was decided that we'd take the occasional fast heart rate over the increase in apneas.

She has a daily routine, usually in the afternoon, of trying to nurse, then trying a bottle, then getting the rest of her feeding through her tube. After about 10 minutes of nursing/bottle, she is so worn out that she goes completely limp. :)

We're enjoying her new private room in NICU2, where she moved a couple of days ago. It's very quiet, and we have a window!

She seems to like being read to. She always turns her head toward our voices and opens her eyes wide.

And, last but definitely not least, her weight gain is picking up! This morning she was 3lbs 10.1oz. Maybe this will help her maintain her temp and she can finally come out of her "box"! Waiting eagerly for that day!

First Bottle

Tess has made it about two days without her nasal cannula helping her breathe, so today she was allowed to have her first bottle! Since I get to nurse, Paul won the privilege of feeding it to her. Here's nurse Carol teaching him how.

Feeding a preemie is more complex than it looks. Takes lots of concentration for Anna to coordinate sucking, swallowing and breathing - and just as much for Paul to monitor all of that at one time!

She was completely worn out after downing 10 milliliters. For now, she'll be offered one bottle a day (32mL), and once she can finish it for two consecutive days, she'll be offered two bottles a day. Once she finishes those for two days in a row, she'll go to three bottles. That continues till she gets to eight. Then, after all that trouble getting her to bottle-feed, we'll take her home and start trying our best to get her OFF bottles and nursing exclusively. Makes perfect sense. :)

Isn't she cute?!

In other news, she weighs 3lbs 9oz. - her weight gain is picking up after a slow start. So many answered prayers!

3-31-12

33 weeks tomorrow! Random notes from the week ...

We're trying for the third time to wean Tess off her nasal cannula. Turned it down from 2L of room air to 1.5L of room air (I guess that's how much air it's blowing per minute?) yesterday, and she did well, so this morning at 9 the doctor had it turned down to 1L, which she did fine with all day. She can't start nursing or taking bottles until the cannula is out, and she can't go home till she's nursing/bottle-feeding well, so this will be an important achievement!

Her heart rate continued to jump above 200 even after lowering her caffeine dosage, so today the nurse just quit the caffeine altogether. As long as she doesn't start having lots more bradys and apneas, she can stay off the caffeine.

Today's weight was 3lbs 6.9oz. She is gaining weight veeery slowly, but at least she's going in the right direction!

Thanks again to all for the prayers and help! Everyone's support has been an enormous blessing during an otherwise difficult time. Our other three children are in playdate heaven and think this is the most awesome time ever. :)

Bathtime Pictures

We got to give Anna a bath on Sunday! It was also Blake's birthday, and bless his 8-year-old heart for actually being excited about heading to the hospital for half the day.



Are YOU my mommy?!

 

Reading "The Crown on Your Head" to Anna ...

 Anna's fantastic big brother, who has been promised an awesome party after the baby comes home!

Three Weeks Old

Anna's been having lots of spikes in her heart rate, so the nurses said we'd try to see a cardiologist today. Theorizing it might just be a result of her getting too warm - she is in a new isolette where the temp isn't quite so controlled. Praying it's nothing serious.

Gave Anna a bath on Sunday - pictures coming later. Also got to dress her for the first time when she hit the 32 week mark Sunday - I think she looks older in clothes!

UPDATE .... Had an ekg yesterday - looked good - and a caffeine test, which showed pretty high levels. She's been getting caffeine daily almost since birth to keep her heart rate from dropping too much, and it looks like lowering her dosage will take care of the spikes in her heart rate. So so happy this is such an easy fix!

Two Weeks Old

Busy day for Anna. She had her IV and PICC line removed last night, and today she got rid of her cannula. That means she's breathing completely on her own, and holding her is much, much easier without all those extra tubes and lines!

She's still eating well, more and more every day. She has regained her birth weight and today came in at 3lbs, 2.9oz. Doesn't she look a little chubbier?! Yay Anna!

Still getting to hold her an hour a day, but the wonderful nurses always let me push it to as much as two hours if she's stable. Bless those nurses.

The biggest risk to Anna right now is infection, so our main goal is keeping her well. Next priority is for her to master the art of breathing, sucking and swallowing simultaneously, and she'll need to maintain her body temp before she can come home. We've been told to expect her to be discharged on her due date, plus or minus two weeks - WAY too long, given that her due date isn't till May 20. So our specific prayer request (aside from staying well) is that she can master those skills SOON! She'll be 32 weeks Sunday, and then she can start trying to nurse.

THANK YOU to all who are offering prayers, playdates, meals, etc. You are all angels! We know that God can never be outdone in generosity, so we can only imagine the great things He has in store for Anna!

9 Days Old

Look what's missing - CPAP! Anna Therese is now on a high-flow cannula, which means we can see her sweet face. She's done well with it since the doctor made the change yesterday. Lots of good feedings today, no spitup. Results of brain ultrasound show two grade 1 bleeds (all bleeds are graded 1-4, with 4 being worst), which generally don't cause any developmental problems. The nurses have called Anna "feisty" several times - we are glad she is spirited, not unlike her patron saint Therese, the Little Flower!

Echo Results

Got the results of Anna's echo this morning. The duct is still partially open, but the doctor expects it to finish closing on its own over the next several weeks. Worst case, they could do surgery, but the doctor said that in five years, they have not had to go that route a single time. Soo... A good report, and she is back on breastmilk every three hours.

Kangaroo Care

One Week Old

Anna had a milestone today - one week old! She spent the morning with Dad and the afternoon snoozing peacefully in her isolette while Mom sat beside her. She is completing, probably as I type this, her third and final dose of Indomethacin to close an open duct in her heart (patent ductus arteriosus). She will have a second echocardiogram Wednesday to see whether the medicine did its job, and if it did, problem solved, and she'll go back to receiving breastmilk through a tube every three hours. She had to stop her feedings just while she received the medicine because it would've interfered with digestion. She generally does well with her feedings, so they're increasing by 1mL every 12 hours. Anna will also have an ultrasound of her head on Wednesday to see whether she had any bleeding in her brain in the first few days after birth. It'll be a busy day for her!

I did not get to "kangaroo" today but am hoping to Wednesday. We appreciate all the kind thoughts and prayers - we know those prayers are working and are counting our blessings that things have gone so well in the past week. We can't wait to bring Anna home!