Thursday, March 29th - First Day Home

(above - big brother Connor greets sister Lauren with Dad)
(below - GranD rocks Lauren to sleep by singing her sweet lullabies)
(below - legs dangling, Connor falls asleep in his old swing)

Well, we made it through our first night together as a family of four! With help from my mom and our nanny Katie, Connor received plenty of doting attention in the midst of a flurry of homecoming. Lauren settled into her bedroom very well - a little girl in a big crib! Connor continues to be very interested in the squeeks and cries of his little sister without any signs of jealousy.....yet. If anything, he is thrilled to have all of his old baby toys around again. This morning he demanded a ride in his old swing, and as it sang his old favorite songs he fell asleep for over an hour. The poor thing probably strained against his weight and length, but didn't seem worse for the wear.

Baby Lauren continues to eat and sleep very well. She's like clockwork, waking up for a feeding every four hours. Thanks to all of her NICU nurses for getting her on such a dependable schedule. :) Lauren took her first trip to the pediatrician for a 'meet and greet' this afternoon. We've been warned that the first week having a preemie at home can be a bit of a 'honeymoon period', after which Lauren may ramp up her food intake and frequency, making her lovely dependable schedule disappear along with our restful nights. Well, we'll figure it out day by day. The pediatrician was very impressed with Lauren's growth, saying 'It's great to see a chubby preemie!' Lauren continues to add fat rolls by the day!!

Lauren is Coming Home TODAY!

After 86 long days in the NICU, a PDA ligation surgery, battles with an infection, and too many needle sticks, tests and monitor alarms, our feisty 26-week'er is coming home!!!

Since her birth on 12/31/06, Lauren has more than tripled her weight. Although she was born a tiny 2lbs 1oz 'extreme preemie', she's now just under 7lbs! She is sucking down bottles and breastfeeding like a pro, gaining weight steadily, exhibiting no A's or B's (apneas or brady's), and breathing very well on her own. She went over 1.5 hours on a 'room air trial' last week, meaning she didn't have any assisted oxygen. We've been told that if we lived at sea level, she would be off oxygen completely. However, our mile high altitude means that Lauren's lungs have to work a little harder. She'll come home on just 1/32 of a liter of oxygen, which is the lowest setting her little tank allows. Hopefully she will be weaned off oxygen completely within a few short months.

Yesterday was an emotional day as I bid farewell to my collegues at EDAW for awhile to begin my true maternity leave. I plan to take 3-4 months off before returning to work around August. I also gave my teary farewells to all of the amazing nurses and doctors who have been taking such great care of Lauren these past 3 months. They were so excited to receive the NICU bean bags that my EDAW friends had made (thank you Heather, Andrea and Vaike!)

This experience has been the most difficult of my entire life. But thanks to the support of our family and friends, we have made it through with flying colors!!! It will feel SO good to have my precious family of four under the same roof tonight!!

Sunday, March 25th - Kaia's Comments

(above) Lauren - 38-weeks old (AGA), weighing 6lbs 11 oz!! She's been in the hospital for 83 days, but this big girl is almost ready to come home!
(below) Connor and neighbor Raya play on the hippo at the Denver Zoo!

Lauren is on the homeward-bound countdown! Her doctors are telling us she will likely be discharged this coming Wednesday! This is exciting news and we are thrilled and a bit nervous about the upcoming transition.

Grant and I have spent almost the entire last two days with Lauren. Her primary nurse Bobbi has been teaching us all that we need to know about her care: how to use the home oxygen tanks, how to mix her 'milk shakes' (breast milk with a cornstarch-like thickener that seems to help her reflux), how to crush her synthroid pill and give it to her with multivitamins, how to work her home monitors.....there's a lot to learn, but I'm sure it will become second nature soon. We have decided to bring home an oxygen saturation/heart rate monitor for piece of mind and extra precaution. We've been warned that the monitors can go off even if there's no emergency, and that they may just drive us crazy. She may just be moving around enough that the monitor can't get a good reading. But we've also heard that a monitor can help parents sleep better, knowing that if anything scary happens, the monitors will alarm and wake us up. We've decided to try them at first and then work with our pediatrician to help us decide when she no longer needs them.

We continue to enjoy our new neighborhood and neighbors. Now that the weather is warming up, we're been exploring the many parks and outdoor activities nearby. Last weekend we ventured to the zoo to watch the many animals frolicking in the sun! Connor and his neighbors Raya and Julia loved every minute....until it was time to go. Then we experienced a full-on Connor Meltdown. I guess we're nearing the Terrible Two's!!

Thank you all for donating to the Walk America - March of Dimes. Team Lauren has raised over $1300 and we're still going strong! Here are some of the programs that your donations will help support:

- 43 Neonatal Intensive Care Unit Family Support projects. This program works with families of critically ill newborns and staff to develop customized services, which could include support for siblings and extended families, helping the family cope with the NICU experience, easing the transition from hospital to home and, if needed, bereavement support. By year's end, with your help, there will be a NICU Family Support project in every state, Washington, D.C. and Puerto Rico. (this Support Project has helped our family immensely! Especially during the tough days when Lauren was sick.)
- More than $43 million allocated for research and medical support in 2006. The March of Dimes, over its history, has funded the work of 13 Nobel Prize winners.
- Educational materials distributed through hospitals, doctors' offices, healthcare centers, schools and online at Pregnancy and Newborn Health Education Center®. Millions of women of childbearing age are advised on how to have a healthy pregnancy and reduce the risk of premature birth.
- Advocating for women and children. The March of Dimes led the effort to pass the PREEMIE Bill, which was signed into law on December 22, 2006. The bill authorizes expanded federal research into the causes of premature birth. The Foundation is also lobbying for expanded access to health insurance for mothers and babies.
- Focusing on the health of children. If you or your child received a polio or rubella vaccine to protect against these diseases, you've been helped by the March of Dimes. (Every child benefits from the March of Dimes. Not just preemies!)

March 22nd, 2:48 pm

We apologize for not updating the blog this past week. We hope those of you that are still checking in to see how Lauren is doing will continue to do so. Our ability to update the blog as often as we once did is more difficult now that we (Kaia) have become more integrated into her feedings.

Okay, here is the update: Lauren continues to gain weight on a very consistent basis, and is now about 6lbs, 10oz. She now nipples all of her feedings, either from the bottle or breast, which is an unbelievably huge step, as it requires her to combine the skills of breathing and feeding at the same time. So, the medical team is thrilled with her feeding skills.

The only problem that continues to plague her is her inability to maintain a constant oxygen saturation. This most likely is the result of immature lungs, but also because of some acid reflux. Because she was fed through a tube for many months, the valve at the top of the stomach doesn't fully shut allowing acid to creep into her esophagus causing irritation. Unfortunately, when the irritation occurs, she forgets to breathe, which causes her oxygen saturation levels to plummet. However, she is on some new formula that is added to her breast milk that thickens it up allowing her to keep it down in the lower portion of the stomach. It seems to be working, as her "de-sats" are way down...

We did an overnight visit with her on Sunday, which didn't go all that well for many reasons, but it was valuable for us to actually get to experience how much potential care she will require once she gets home. It was a bit daunting to say the least. But, we don't have anything to complain about. We consider Lauren a blessing, and know that her health could be much much worse. We are lucky to have these problems we feel...

Kaia's parents and my parents are back from overseas. So, we now have lots of grand parental help! Connor is doing great, and has become a fixture in the park that is across the street. He can play in the sand, dirt, and grass for hours, and throws a tantrum when it is time to go home. He gets so dirty that he has earned the name 'pig pen' at home. He would much rather be outside with no jacket or shoes playing with a stick and some construction debris/trash than be inside with his toys.

Thanks for all of your support.

Grant

Friday, March 16th - Kaia's Comments

Lauren is almost ready to come home! At 37 weeks, she is 6lbs 3oz and she is taking all of her feedings from bottle or breast! It must feel great not to have any tubes down your throat or needles in your arm after 3 months of sticks, pokes and incisions. She does still have a heart rate and oxygen monitor, and she still has a nasal canula to give her extra oxygen. But she is doing very well!!!

This has been the week of training. Not for Lauren, but for us as parents! We've learned how to give her synthroid medicine, how to feed her with a bottle and keep her awake, how to watch for color change in her face that may indicate low oxygenation of her blood, and many more little skills. We feel (almost) prepared for Lauren's homecoming and we're very excited to soon be a whole family under one roof. This weekend will be our big test. Grant and I will be staying overnight at the hospital with Lauren in a family room. (GrandD and Connor get to have a sleep over!) Lauren will be off her monitors and although the nurses will be just outside our door, she will be OUR RESPONSIBILITY!!! It sounds a little scary now, but I'm sure we'll do ok.

A few updates on Lauren: she passed her hearing test, which is great! She is now on a 'on demand' feeding schedule, which means she's waking up every 3-4 hours on her own and crying to let us know she's hungry, just like a regular newborn baby would do. As soon as she goes 5 days without a Brady or Apnea episode, she will be home!!

After all that we've been through, we are very excited to report that Lauren shows very few signs of any developmental or health problems. The biggest issue for Lauren at home will be her immune system, which is very sensitive. We have to do everything we can to ensure she doesn't get sick for the first 2 years of her life. This will obviously be challenging with our social lives and her big brother. It's likely that we'll be extreme home bodies for quite awile. It means no big homecoming party and no visitors in our house who have been recently sick. It means Purrell in every room and diligent handwashing. It means no daycare for either child for the next 2 years. It means anyone who visits must wash hands before touching her. It's not going to be easy, but it's for Lauren's health and of course we must do everything we can to give her the best shot at a healthy life!!

Again, thank you for ALL of your help - your notes, your calls, your cooked meals, your babysitting offers, your gifts, your letters, your prayers, your thoughts, your friendship and love. We feel like we've shared this journey with so many people and that has helped give us the strength to make it through.

Friday, March 16th. Kaia's comments

As we near Lauren's homecoming, we're celebrating by helping others! Over the last few months we have personally witnessed the trials and tribulations of many babies in our hospital's NICU. We have also heard many stories of others with newborn prematurity experiences.

The first thing we have done is particiate in the Walk for America, to celebrate Lauren's health, and help improve the potential of future premature infants. My colleagues at EDAW have been so>inspired by Lauren's fight for life over the last 3 months that they've initiated a fund raising effort for next month's March of Dimes Walk for America. TEAM LAUREN honors our sweet and feisty little girl as well as all of the premature babies born before her, whose successes and challenges guided Lauren's care team to know how to help her become the beautiful and healthy girl she is today.

Please join us in celebrating Lauren's health, and helping to improve the potential of future premature infants. If you are interested in joining me for the Walk of America in Denver on April 28th at 9am, or you would like to contribute to the March of Dimes, (whose mission is to improve the health >of>babies by preventing birth defects, premature birth, and infant mortality),>please check out my home page:>>http://www.walkamerica.org/khistand>>

(above) Friends Andrea, Vaike and Heather all spent an afternoon together with Kaia and Connor, sewing beanbags ('frogs') for a NICU gift.
(above) Heather and Vaike - seamstresses and their beanbags for the NICU
(below) a few of the 9 colorful, soft 'frogs' that were made! These beanbags are used by the NICU as bolsters and supports for preemie babies in isolettes. The frogs help little ones feel more secure and supported. Unfortunately, the NICU is very low on frogs and so we offered to make new ones as a gift for their use.

The next thing we wanted to do was thank the St Joseph's Hospital NICU for their care. They have not only been amazing for Lauren, but they have been great to our whole family. It's clear that NICU nurses and doctors must be skilled at treating not only their patient, but the whole patient family.

When Lauren is discharged, we wanted to give the NICU a thank you gift that they would need and use. So when I asked Lauren's primary nurse what the NICU needed, she showed me a 'frog.' In the NICU, a frog is a soft flannel or fleece beanbag that is used as a bolster for preemies in isolettes. The bolsters may be placed under a baby's legs or behind their back to help them feel secure and supported. Unfortunately, the NICU's budget tends to be taken up by more necessary items like stethescopes and cribs, leaving little left for blankets and frogs. So, I recruited 3 seamstress friends from my office and we spent an afternoon making 9 new frogs for the NICU! We shopped for some super soft fabric, ordered some plastic beads online, and then we turned Vaike's house into a Frog production line for an afternoon! Even Connor was able to help by filling the flannel sacks with plastic beads.

(below) Connor helps fill the sewn flannel and fleece bags with plastic beads (successfully spilling more on the floor than in the bags.)

Another thing I wanted to do was donate pre-term breast milk. I have been very fortunate to have such a wonderful supply, which I feel has truly helped Lauren grow and develop as well as she has these past few months. Many moms are not as fortunate, so I wanted to help out. The Mother's Milk Bank, located just next door to Lauren's hospital, screens, collects, stores and dispenses human milk by prescription only, to babies who have special health requirements for milk and whose own mothers are unable to provide it.

Although the screening process was extremely rigorous, including blood tests and a multi-page questionnaire about my health history, I was finally ok'ed as a donor. Just yesterday I showed up at the milk bank with two grocery bags full of donor milk and they were absolutely thrilled!!! "Your gift will help many babies around the country, Kaia." It felt really great to know that I could help. Thanks for sharing, Lauren!

Saturday, March 10th - Kaia's comments

(above) Lauren 36 weeks, "Pretty in Pink" Can you tell that we're all very ready for spring?
(below) Connor's trauma for the day - waiting for his precious Blankey to go through the laundry

We're just truckin' right along - getting closer and closer to the day that Lauren will be home with us! We've been told she may be home in a week or two!!!! Suddenly that seems so soon! We've very excited!

As you can imagine, the nurses and docs wouldn't even be tempting us with the idea of Lauren's homecoming if she wasn't doing fabulously well. At just 36 weeks, still a month away from her due date, she is 'getting very close,' according to her care team. She's mastering all of the skills she needs to, including nursing, eating regularly from a bottle, breathing and keeping her heart rate at an appropriate level. She has A's and B's infrequently now, and she must go at least 5 days without either before she can be discharged. She's continuing to need less and less oxygen, but we know she will continue to need some help in the breathing area for at least a few more months. She's taking every other feeding from either bottle or nursing. Once she can take them all, she will no longer need a tube down her throat.

We had a 'Care Conference' last week to review her progress and discuss her upcoming discharge, which was great. It was a chance for everyone to get on the same page in terms of her nutrition, respiratory, cardio history and progress. The meeting was lead by her primary NNP (nurse practitioner) the head Neonatologist for the hospital's NICU (who also happened to be the hospital's physician of the year last year!), her primary nurse, Lauren's future pediatrician, as well as a social worker who will be coordinating any ongoing therapies that Lauren may need over the next 3 years. I'm not sure if all NICU's do 'care conferences' like this, but it was very reassuring for us. It was great to review her complete history and to have the health care professionals who are currently taking care of her in the hospital actually sit down with the people who will ensure she continues to develop well after discharge.

By the way, Lauren is just under 6lbs!!! Last night she weighed 5lbs 14oz. We hope that she can continue such fabulous growth when she gets home. She had another eye exam last week, which came back with 'no change' - so she still has level 1 ROP. The doc said it was great that the ROP hasn't progressed and it seems like the blood vessels in her eyes may be growing normally now. She also has another brain scan, which also came back with great results - normal! No problems. The last test she will have is a hearing test, which should take place sometime next week.

At home, we've adapted well to our routine, but we know that it will all change very soon. All of the grandparents are overseas right now, so we hope that they return before Lauren is discharged!! Grant's parents are in France visiting Pat's mother, and Kaia's parents are trekking around Botswana on the last week of their amazing trip. We'll look forward to having them home this week!