Update on L*ily

L*ily and I have had a busy week of appointments this week. We visited the audiologist bright and early Monday morning (8am is early to be out with a newborn!). This was to check her ears because she failed her hearing screen in her left ear in the hospital. She did not pass again on Monday, but they are calling it inconclusive both because she was congested and because she has tiny ear canals. They will retest her in a month when she is a little bigger and will do a more extensive test called an ABR at that time.

L*ily and I also visited the pediatrician Monday afternoon. L*ily weighed 7 lbs 3oz! This is a 1/2 pound more than 2 weeks ago, which is a good weight gain. This was exciting news for us and confirmed for us that L*ily is eating well and won't need to return to the hospital due to feeding issues. L*ily also showed off to the doctor her ability to lift her head when she is on her tummy - this is good for any baby but shows excellent muscle tone for a baby with Down's.

Tuesday we both took a much needed trip to the chiropractor. L*ily and I were both quite out of alignment after her birth. Some people have asked me why an infant would need an adjustment, but just think what their spine (and the rest of their little bodies!) go through during delivery. L*ily had some restriction on her left side and turned her head to the right quite a bit. Since Tues, she is turning better to the left and her congestion is also improving.

Yesterday, we had our first home visit with the Early Intervention program through our school district. We met with the coordinator, our new Birth to Three teacher, an Occupational Therapist and a Speech Therapist. We discussed where L*ily is at physically and developmentally now and will continue to meet with the teacher monthly or more as needed throughout the next few years to provide us additional information, support and practical tools to help L*ily work towards and achieve her developmental milestones. I am excited for this, especially as everything I have read so far tells me that early intervention is paramount to the rest of her life - which is really true of any child. I have heard from a few people that the St. Paul schools have an excellent program and we saw that yesterday. Well I saw it -L*ily slept through the whole thing!

Great Uncles

L*ily and Z*oe are blessed with several great uncles - I snapped a few shots of L*ily bonding with a few of them at Th*anksgiving.

Uncle D*enny

Uncle C*raig

Sleeping with Daddy

When we came home from the hospital, D*ave had a cold so he did not touch L*ily for 4 days. Needless to say, it just about killed him. Since then, he and L*ily have been bonding well - often with their eyes closed. This is what he loves doing with our babies the most...

Th*anksgiving

Th*anksgiving has new meaning for us this year.

We are thankful for our precious new baby and our curious toddler who continues to make us laugh.

We are thankful for family - near and far.

We are thankful that L*ily and I are home for the holiday - with no G-tube and making strides everyday.

We are thankful for a roof over our heads and heat - many are without this in our country and in our own neighborhoods.

We are thankful for all of you - for your prayers, your support, your cards and emails, and your friendship. This has been a very humbling and helpful part of our difficult journey so far.

HAPPY THANKSGIVING!

Lil*y and her Li*lies

Why did we name her L*ily rather than petunia or chrysanthemum?

Well there are the obvious spelling and pronunciation issues, but also in part because we think lilies are the most beautiful flowers. These lovely Stargazers from my mom were on our dining room table when we arrived home last Saturday:

And these lovely lilies arrived UPS from my dear college friends, A*nne and A*lexa, on Wednesday:


However, as beautiful as these lilies are, I would like to quote my mom's dear friend, Myra, who is like an aunt to me, regarding lilies. She sent a picture of lilies from her garden (and boy does she know how to grow lilies), and wrote this:
"these are my lilies - yours are better."

Being a Big Sister

Z*oe has had quite a week too as she explores what it means to be a big sister. At 2 1/2, it is hard to understand what all this means and especially hard not to poke but to do "gentle touches" instead. Sometimes Z pokes her "B*aby A*pril" instead. Notice A*pril is actually bigger than L*ily!

Overall, Z is doing so well in her new found role. She helps retrieve diapers and wipes and wants to "see the poopy". She gets burp cloths when asked and helped with L's bath. She is a little too helpful with L's N*uk - fortunately we don't use it much!

One evening, Z decided to read Ba*by L*ily some stories.

Here are some of the lovely things we have heard from Z this week:

"Ba*by L*ily is here." - Z says this to everyone who comes in the door
"You and B*aby L*ily are NOT going back to the hopsital." (that's not a typo)
"Look at her tiny little_____" -ears, eyes, nose, hands, etc.
"Dr. Ki (McK*ay) says don't touch her eyes!" -L's dr told Z this on Monday and she has said it every day since.
"I like her." - This was the last thing Z said before going to sleep the first night we were home.

Making Strides

We have been home for almost a week now, and L*ily has been making strides with feeding. We met our new pediatrician on Monday, and L weighed an ounce more than she did on Sat - this is on track with what they want to see. Our new pediatrician was recommended for her experience and also b/c she heads the Down Syndrome clinic within the clinic. However, she also happens to be my nephews' doc too. L started the week at home eating the same amounts at a feeding but adding 2 feedings each day. I was excited but quite sleep deprived those first 3 days - we went from feedings every 3 hours (+pumping) with a kind nurse usually stepping in at 2 or 5am to feeding every 2 hours (+pumping) and no helpers in the night (D couldn't because of working and suffering from a cold). But then, just as my wise occupational therapist said, L started stretching her feedings back out again. In fact, she started cluster feeding in the late evening (she is definitely a night owl!) and has now slept 4-5 hours at night for the last 3 nights! This is how I have time (and a brain!) to actually post again! We are praising God for these strides and are so happy that we avoided both a G-tube and a trip back to the hospital at least so far. We are beginning to try breastfeeding too, but we will be mostly working with bottles of breast milk for a while.

We Are Home!

L*ily was discharged from the NICU yesterday afternoon! It was so strange pulling up to our house after the longest 23 days of my life!

Our discharge process was long - after over 3 weeks of excellent nurses, we had a nurse that was rather confused about the process and took forever! It was really hard to be patient with her despite anticipating a much longer stay just a few days earlier. Regardless, we are praising God that we are all four finally together. Z was so excited to meet her new sister - the look on her face when she first saw L and then when L actually moved was priceless! We were greeted by Auntie M*eagan who was watching Z, and Grandma K*athy, Auntie M*inke, N*oah and O*liver who came our to rake our leaves and cover our flowers. Later, Auntie E*mily, Au*gust, and Grandpa S*teve stopped by.

L*ily ate very well yesterday and through the night despite all the extra "help" from a very excited and curious sister.






















We go tomorrow to meet our new pediatrician and get L's weight checked to make sure she is taking in enough volume and gaining weight. This will be closely watched in the next few weeks. We will also be discussing the several follow-up appts L will need in the next few months - a hearing exam, a echocardiogram, and a head ultrasound. L didn't pass her hearing screen so she needs a thorough ear exam to determine if she has any hearing loss. Her echo is to check on her VSD - a very small hole between the heart chambers that they are hopeful could close on its own. The head u/s is to ensure that her ventricliomegly (enlarged ventricles in her brain) have completely healed. She will also be receiving early intervention services here at home (much like our Occupational Therapy in the hospital) to help her with her low muscle tone, etc related to her Trisomy 21.

Thank you for all of your prayers, encouragement, and support. We know that your prayers are the reason we are now home!

Please continue to pray for L that she would continue to eat well and grow. Pray for her upcoming appts too. We will keep you posted...



Sometimes it feels nice to just regress and hide too. (Notice also the confiscated Nu*ks in Z's hands as she stands next to the bassinet.)

One More Night...

I am very excited to report that L*ily and I are scheduled to go home tomorrow! Her feedings have increased and she has become more consistent in the last few days. Then yesterday she took all of her feedings without her feeding tube! Here she is with an empty bottle - funny how excited that can make me! Just a few days ago, I wasn't sure if we would be able to leave by Tha*nksgiving and didn't know if we would be able to avoid a G-tube. I was actually going to post last night about the possibility that we might leave early next week, but frankly I just got too tired and went to bed instead. Now, we are praising God that not only have we avoided the G-tube but we are leaving earlier than anticipated. We thank you for your prayers and would ask that you continue to pray for L*ily.

For those of you in town, I will just warn you however that as much as I would love for you to meet her, we will need to be very careful about her exposure to colds, flu, etc, especially in our first month home. If L*ily gets so much as a cold in the next few weeks, we could end up back here in the hospital. So please bear with us as we are hypervigilant about her schedule, her eating, and her health. Meanwhile, we will continue to photograph her and share those with you. We also are very excited for Z*oe to meet L*ily and we need to give both Z and D*ave time to get to know L*ily and vice versa.

Please pray for L*ily to stay healthy (as well as D, Z, and I).

Pray for L*ily to continue to eat well and get stronger and bigger. She will get her weight checked often in the next few weeks and a drop in weight could land us back in the hospital too.

Pray for all of us as we adjust to one another and a new schedule.

Pray for Z as she adjusts to having mommy back home and now having to "share" mommy.

Thank you for your prayers! We will update again soon... from home!

Making Progress...

L*ily is making some progress with oral feedings. Over the weekend, I have seen her improve in her "quality" and now we are looking at her need to improve her "quantity." In other words, she organized her mouth more quickly and stayed with it longer throughout her feedings this past weekend and into this week. She can suck-swallow-breathe for longer periods of time which allows her to take more volume in less time. She still needs to "take a break" in the middle of most feedings as she tires. However, yesterday she took 55% of her milk orally - this is about a 20% increase over Saturday and Sunday. Because of her progress, the doctors have decided to wait again until Thursday to decide whether or not she needs a G-tube - they want to see if she plateaus or continues to increase her volumes in the next couple of days. My understanding then is that if she continues to increase, we stay until she can take full feeds for a day or two and go home without a tube. If she plateaus or declines, they will then schedule surgery to insert the G-tube sometime next week. I am encouraged by her progress in the last couple days and especially today when she took the whole bottle at her last feeding! If she continues to increase, we still don't know when we would be ready to leave.

Pray that she continues to increase her oral feedings. Our prayer of course is to avoid the G-tube if possible.

Should she need surgery, she will likely be in through Th*anksgiving. We are praying that we would be emotionally prepared for this, should this happen.

Pray for D*ave and Z*oe as D*ave and I make decisions about how to continue juggling, etc and how to do what is best for both our daughters.

Pray for our families who have picked up a lot of slack to help us out and to help Z get through this difficult time.

Continue to pray for both D*ave and I through this - L will be 3 weeks on Thursday and the separation for all of us is getting old!

I will let you know what happens as the week progresses...

Being Resourceful!

Personally, I have never been a fan of the pacifier. We did not use for Z and had just heard too many stories of babies who wake up in the middle of the night crying because their pacifier fell out of their mouth. However, I am discovering that this too is something that will be good for L. For L, the pacifier now helps her make the connection between sucking and feeling full when she has it during her tube feeding. It also helps strengthen her cheek muscles and gives her more practice sucking. But for those of you who aren't fans of the pacifier, don't worry. Pacifiers, according to L's Occupational Therapist, are good in moderation. For L, we only use it when she is getting tube fed. She can keep in by herself, something that shows good muscle strength, but as you can see, she has found other ways to keep it in too!

update on L*ily's progress

It has been another whirlwind week for us on this journey - a week of more news and more decisions, etc. L*ily and I are still in the hospital. She was born two weeks, two days ago and has now passed her due date of Nov 13. We are still working on feeding issues - this remains the reason we are still here. As I said before, she has two challenges with eating: "organizing" her mouth enough to master the suck-swallow-breath routine needed to eat, and having enough stamina to finish a feeding. She has made great improvement in organizing her mouth and learning to suck properly with the help of a specific nipple for her bottle, occupational therapy every day, me getting better at reading her cues as she eats, and good old fashioned time, patience and practice (just like my piano lessons M*om and D*ad!). She is slowly increasing her stamina for feeding as she grows, gets stronger, and is more productive with sucking - she then uses less energy. This piece (her stamina) is directly related to the low muscle tone she has in her face - she has to work harder than other babies to compensate for this - this is something that is a part of her Trisomy 21 diagnosis but also something that gets better as she again gets more efficient in sucking and gets stronger. She will always have muscle tone issues but she won't always have feeding issues - she will master this eventually. However, the progress has been slow. Because of this, her doctors have decided to reevaluate her progress mid-week (around the 18th) and determine at that point if she is close enough to get out on her own with feedings or if she will need a feeding tube temporarily. If she increases her feeding enough between now and Wednesday, we will be making a plan to go home shortly after that - as soon as she can finish her feedings on her own. If she is not progressing enough at that point, she will have a feeding tube (G-tube) surgically inserted in her stomach and be sent home with this for maybe a month or two or until she can finish oral feedings on her own. If she gets a G-tube, the surgery will likely be the end of this coming week, and then she will need to stay up to another week before leaving.

We are praying and asking you to pray that L*ily increases her feedings this week so that we can both go home within a week and without a feeding tube. We also ask you to pray for D*ave and I as we try to anticipate both possibilities this week. Please also pray for Z*oe. She can verbalize what is happening fairly well, but she is missing Mommy a lot and I am missing her too. This part continues to be the hardest piece of it all for us. Pray for D*ave as he holds things down at home, juggles things with Z and me, works, and tries to see L*ily when he can. Z's Grandma K*athy and Grandpa S*teve have taken her overnight some nights and Grandma J*udy has stayed at our house some nights too so that D*ave can continue working - he has to be at work at 6am, so we have needed to have someone with Z before he leaves. We so appreciate knowing you are out there thinking about us and praying for us - we have seen prayer work already and are asking again for more. We are trying to take each piece of news one step at a time and yet anticipate the possibilities to come. We are so grateful for the excellent care L is receiving and the bonding we are experiencing yet are feeling the strain of being here so long in the process. We are still adjusting to the lifelong diagnosis L*ily has and what this will mean for us as a family and for her in the short and long term. I will update here again in a few days as we see what direction we are going next! In the mean time, here are some more pictures of our beautiful new baby!

worn out

Have you ever had days like this???

Bath time

Sometimes we like the bath and sometimes we don't!

Welcome to the New Blog!

Dear Friends and Family,
Welcome to our new blog. Some of you may know we had a blog for Z*oe that we periodically updated. Now that L*ily is here too, we expanded to a new name and this blog starts with L*ily's birth. Thanks to my sister, E*mily, for lending me a laptop so that I can give you updates while I am here. And thanks to my parents for the use of their SRL camera while I am here, which is much better than our digital at home. The blog will allow you to check in on our updates as you wish rather than me sending out email updates.

The update on L*ily as of today is that I (Jen) am still boarding at the hospital with L*ily indefinitely until she is feeding well. Indefinitely could mean another week or two - no one knows and it is all up to L*ily. It may be hard to understand why it is taking her so long - don't babies just eat? Mostly because of L*ily's diagnosis of Trisomy 21 (Down's Syndrome), she is working on "organizing" herself and especially her mouth to be able to suck properly. The goal is to send her home on a combination of bottle and breast feeding. Right now she typically begins a feeding with a bottle of breast milk or breast feeding, but she tires easily as she works hard to understand what to do and how to handle all the stimulation, so she finishes each feeding through a tube. She is making progress and is working so hard, but it is slow going. We ask that you pray for all of us during this time - pray for L*ily that she learns quickly how to eat and how to "organize" herself.

Pray for D*ave as he holds down the fort at home, works and takes care of Z*oe. Pray for Z as she misses Mommy so much and does not fully understand why L*ily and I can't be home yet. Pray for both D and I as we work through the emotions and the understanding of this new diagnosis amidst falling in love with L*ily. Lastly, pray for me - for patience and strength as I work with L*ily, obtain new info every day, and live the rather lonely existence of living life in the NICU. Both D*ave and I feel torn between our children as they are in two different places and neither of us can be with both at the same time.

Please scroll down to the end of this blog and read "up" to begin the journey with us. I will update again in a few days.

Beautiful Butterflies

In the midst of the craziness last weekend, D*ave and my sister, E*mily, took Z and her cousin, A*ugust trick or treating at my parents' house. E*m and I had picked out these wings a few weeks ago in an attempt to find a good costume that they would actually keep on. Of course Halloween can be a sketchy holiday weather wise in Minnesota - this is the reason for the yellow jacket and the pink hat on Z and the coat on A. Nevertheless, aren't they adorable?

Under the Lights

L*ily's bilirubin spiked last Saturday (this is jaundice), so she spend about 24 hours "in the sun". One of the nurses told me they just put babies in the sun in places like the Carribean. I'm not sure if thats true, but it is definitely not a possibility in Minnesota! She was under the lights until midday Sunday. Notice the eyelashes on her! (We kept these for her book)

Z*oe's new baby

We planned to give Z a new baby too and I had read that it should come from our new baby. So last Friday, we met Z in the lobby area to give her the gift. The additional story of this baby is that Z's cousin, A*ugust got a baby for her birthday that Z adores. Z has two other small babies, but when she goes to A's house, she drops her own for A's Baby Ju*ne. We got Z the same baby since she loves it so much. She has now named it Baby A*pril (we are sticking with the month names and Z was born in A*pril). When Z opened the package, the first thing she did was insist that Mommy and Daddy feed Baby A*pril. Then she fed her too. I hear that Z is now sleeping with all three of her babies - A*pril, P*enelope ("nelope" to Z), and L*ulu named after the L*ulu books.

First Visitors

As mentioned in our email, the NICU only allows 4 visitors beyond D*ave and me to see L*ily. This has meant some bonding time with us and with grandparents but has been hard on the rest of the family, especially on my siblings and spouses. L*ily's first visitors have been my parents and D*ave's mom and dad. D*ave's stepmom was also able to see L*ily the day after she was born. Z*oe also cannot come up to the hospital at all, so we do a lot of exchanges in the lobby of the hospital. This has probably been the hardest part for me in the wait - I miss Z*oe and D*ave terribly, I don't get to see them enough and it is hard to say goodbye to Z*oe when I do see her. The unknown time frame for leaving adds to the stress for all of us.

Just Born!

L*ily K*irsten E*liina P*atrick was born on Thursday, October 29, 2009 at 2:37PM after a 10.5 hour (drug free!)labor. She weighed 5 lbs 9 oz and was 18 inches long. She is beautiful and we praise God for her and her big debut!

As anticipated, L*ily was taken to the NICU shortly after birth, but we had a precious few minutes with her first, and our wonderful doula (and friend), Amy, captured them for us.