Lilly Update

Lilly continues to do well and is making her slow way to recovery. She is a kind of two steps forward, one step back kind of girl.

Thursday Lilly started getting a little bit larger amounts of milk and tea mixed. The the doc told the nurse to up the amount and go with pure breast milk. That afternoon she started to get some painful gas and as time went on drank only a small amount. I emptied her colostomy bag Thursday early evening and by yesterday morning there was still hardly any contents and what there was was very dark and thick (I am sure you all enjoy descriptions of the contents of my kid's poop bag). She was also having tremendous tummy ache. So I brought this to the attention of her nurses and doctor and they then flushed her intestines out. Out came all the goodies and the girl has been farting loudly ever since!

She also got her epidural removed and her urinary cathether out today as well as her NG tube. What a difference 3 fewer "cables" makes! She also got a sponge bath today. After that she was much more comfortable, very smiley and tired.

However, she also started vomitting again and had zero appetite. She would not drink anything from 9 this morning till 4 this afternoon. So, we are starting from scratch building her up again.

Now they have added one more infusion of fat to keep her weight up.

We are doing very well thanks to the help of Peter's parents and sister, and also thanks to your prayers and words of support. No word yet on when we will be able to return home.

After OP

Lilly is doing well. Our night was anything but restful. Lilly fussed about every 30 minutes until about 2am. After that it was only every hour to hour and a half. In addition there is one other newborn baby in the room who screams every 2 hours around the clock for a bottle. Then between the 2 of them there is continually alarms going off for pulse oxygen, heart rates, respiratory rates, end of infusions, or blocked infusions.

Lilly alternates about every 15 minutes or so between sleep and crying. They assure me that between her epidural and medicine for fever that she is not in pain.

She got a small amount of tea spread out over 3 hours last night. But as usual with her she had quite a bit of vomiting lovely green bile so even that was stopped.

Now it is nearly 3 in the afternoon here. We are soon going to close off her NG tube (tube running from her tummy out her nose) and see how she takes a little more tea. It's funny that no one I have talked to in the States has ever heard of giving a baby tea before, but it is a standard thing here and it really does soothe the tummy.

I don't expect there to be any new info today so will send out another update when there is a change. Thank you so much for your e-mail. I love to know that so many people are whispering Lilly's name in prayer. Keep praying!

Will try now to attach a few pics both before and after surgery. She keeps a death grip on her crib railing which you can see in the picture. Haven't tried sending pics on my new phone yet so hope it works.

In Recovery

Lilly is now in recovery and we are sitting beside her bed. The surgery took nearly 5 hours and was not as easy as they were hoping. They actually found 2 areas of her large intestine that were very small and constricted. The first they came to was a very small portion and easily removed and sewn back together. The second section was much larger estimated to be around 15 cm (6 inches). This was removed as well and the intestines connected there as well with stitches. So she has two separate areas with stitches in the large intestine. Because of this they are going to leave the colostomy in place. This will allow the affected area to heal before it is exposed to fecal matter. She will have another X-ray in about 3 weeks to see how the areas look. She will certainly undergo another surgery in the coming weeks or months but the doctor is quite certain that we will eventually be able to get rid of the colostomy bag and have everything working the way it should.

So not the solution we hoped to have from this surgery, but Lilly is stable and has good pain medicine through an epidural.

Lilly In Surgery

Lilly went into surgery about 1 hour ago. They expect it will take at least 3 hours. Thank you for your continued prayers!

She was a happy girl all morning despite having her last bottle at 6 am. Took a good morning nap in daddy's arms.

Hospital - Take 2

Lilly went into the hospital last Friday for a scheduled x-ray and biopsy. What was supposed to be 1 overnight stay stretched out much longer. You know our Lilly, she tends to like all the drama and attention. Not to mention she will do anything for a private hospital room.

The x-ray and biopsy went as planned, and the doctors were able to obtain some information that should help them determine the course of action for Lilly's upcoming surgery next week. The biopsy required full anesthesia and fasting. Lilly came out of the procedure fine and as expected didn't have her normal appetite after and was sleepy.

The next morning, she started eating a little more (still only 1/2 of her normal intake) and seemed to be a little more awake. We took her home around lunchtime. As the afternoon went on, we became more and more concerned. Lilly was more and more lethargic, had zero interest in drinking, and by early evening stopped having wet diapers. She was also throwing up greenish bile stuff. We headed back to the hospital to get her readmitted.

And what do you know? As soon as we get into the ER, she is awake, smiling at the doctors, and pees on the table. We were adamant that things were not right with her and just as they admitted her and got her into her room, she threw up her pretty contents and the doctors agreed that there was something wrong.

Two days, a steady IV and ECG, and two ultrasounds later it was determined that her intestines had not been able to rid themselves of the contrast agent from the x-ray. That was the only thing they could find that might have caused all these symptoms.

Here are pics from our dramatic weekend.

It's Been A While

It isn't that I haven't wanted to update the blog lately. I really want to keep you all informed and up to date on Cooper and Lilly. It's just that our world has kind of been thrown off its axis in the last several months. Our "norm" has changed.

It's amazing how quickly life can change and how fast the events that were once the scariest things we had ever faced have just become part of our daily lives.

Beeping monitors showing the rythmic waves of our little girl's heart and respiratory rate. Electrodes on a tiny chest. It's part of our new norm.

Autism forums with discussions of toxic metals, vitamin supplements, chelation, dietary infractions, and acronyms such as GFCFSFEF. By the way, Cooper is GFCF, soon to be SF. It used to be like learning a new language, and now that's our norm, too.

Numerous attempts at IV lines in tiny baby hands and on the head causing frantic screams and crocodile tears. It used to make my stomach seize up with worry, but not anymore. It's just another part of our new norm.

Hours spent researching therapies for autism and requesting funding from insurance, goverment, and other agencies to get the help that Cooper needs. It's frustrating, but that is the norm around here.

Emptying and replacing colostomy bags and having to give long explanations whenever we have to change a diaper in a public place. That is surprisingly the easiest of our new norm.

Just because these things have become our new norm, doesn't mean that they are getting any easier. Truth be told, our new norm is taking its toll on us. Peter says he feels like a mistreated dog, and I feel like I have aged 10 years. We've had hard times in the past, but this year seems to be the toughest we've had to weather yet. Even harder is the realization that there is no magic medicine and no amount of money that can just fix any of this. Our kids are only 3 months and 3 years old. We are merely at the beginning of this journey.

I have certainly had my moments of anger lately, feeling that none of this is fair. But, as often as possible, I am clinging to the hope that God has a bigger plan than I can see right now. I am hoping that He is somehow using this time in a way that will bring blessings and grace later. God knows we need it.

3 Months

This beautiful angel is already 3 months old.

She cried non-stop after leaving the hospital and all through her second month. Now, at 3 months we're sailing much more smoothly. One thing we have been thankful for is that as of 6 weeks old, she has been sleeping through the night largely with the help of the miracle blanket. If you have a new baby, that thing really does work like a miracle. She drinks about 120 ml (4 oz.) every 3 hours during the day, mostly breastmilk but also sometimes 1 bottle of formula during the day. After being awake for 2 hours she gets fussy and can pretty easily be rocked, walked, or bounced to sleep. She typically goes to sleep at night around 8:00 PM and whoever is up latest has the job of waking Lilly up, changing her diaper and topping her off with a bottle. This gets her through until 6 or 7 in the morning.

Lilly is extremely aware of her surroudings. Sometimes overly sensitive to sound, there is a large variety of things that will upset her and get her screaming. These include me yelling at Cooper or Peter sneezing. (Although, I must admit Peter is a violent sneezer.) Her big, blue watchful eyes follow anyone who is in the room and she thoroughly enjoys watching Cooper and Kayla around the house. If she sees her daddy across the room, she breaks out in a beautiful, dimply smile.

Her smile is just gorgeous, and she uses it to charm all her doctors and nurses. She has little hints of dimples on each cheek, much like Peter did as a baby. But she doesn't really look like Peter or me or Cooper. We are still waiting to see who she grows to look like.

Like Cooper was, she is a champ sucker. She loves her MAM pacifiers and if that isn't around she will stick one, two, or four fingers in her mouth and tries to get the whole fist in at times. If the paci falls out of her mouth, she will turn or tilt her head to try to get it back in her self and is actually often successful. She has recently started sticking her tongue way out, which is really funny looking.

She snorts a lot when she cries, which makes it hard not to laugh when she is upset.

She has recently started making little coo's and reaching for toys over her. And just today, she started rolling from her back to her front (can't go the other way yet) and has done it several times already.

Even though it is mommy who changes the most diapers and always bathes and applies a new colostomy bag, she is a Daddy's girl through and through. From the start she has always been calmer in his arms.

Lilly has her next surgery next week, but let's hope that after that her next 3 months are a little more calm and don't involve any more hospital visits!

Here's an abundance of photos from the first 3 months. Sorry there are so many, but I just don't know how to edit and I know I never get tired of looking at these sweet faces.

Last Days of Preschool

Cooper's preschool has ended, and with it my 4 mornings a week of Cooper free time. I have to admit that this milestone brought tears to my eyes. Cooper's teachers were great and he has learned a lot under their care. They all said something similar about my crazy guy, which really touched me. They said that there is just something about Cooper that touches a special place in their hearts. Maybe they say that to every mother, but I do think it is true of Cooper. I was emotional that my little boy is growing up and truth be told a little overwhelmed that I would have to keep him out of trouble all day long at home with Lilly.

Here's the Preschool Grad with his teachers, Stephanie and Anja.