caption - title

The story of our precious little girl's 17 months of life with Trisomy 18 (July 4, 2010 - December 15, 2011) and of us, re-learning to live "after Lilly."
"I will praise you for I am fearfully and wonderfully made ...." Psalm 139:14

Thursday, September 30, 2010


"Let everything that has breath praise the LORD." Psalm 150:6

First things first: Lilly survived the surgery!

Weight check = 5 lbs. 8 oz.

Today was Lilly's big day - she had the pulmonary artery band inserted into her heart.
She started her day with a bath and then posed for a final pre-surgery picture for mama. Doesn't it look like she's smiling?!

At 8:00 a.m. she was wheeled away to finish final preps for surgery. She looked so tiny on the bed as she was rolled away. It was exciting yet scary to let her go. It was downright strange to have her out of my sight. And thus began the waiting for my husband and I.

About 10:00 the nurse called me on my cell phone to say that Lilly had been cut open at 9:25. It would then take a couple hours before the surgery was finished.

"Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance." James 1:2-3

We felt mostly at peace yet too antsy to sit so we went outside for a walk. We ended up having a great time as we walked along the river and saw many things. We even saw dolphins!

Finally at 11:40 the surgeon himself came to tell us that the surgery was finished and Lilly was doing as well as could be expected. She was on a ventilator and was being given some blood. We would be allowed to see her shortly. He also said that Lilly did not have a thymus, which is actually pretty common in those with heart defects. The thymus is a lymphhoid organ just behind the sternum. The absence of it means that Lilly has an immune deficiency. (So don't be offended if I ask you to wash your hands before you touch her!)

I can't describe the relief and joy we felt after talking to the surgeon!

"I love the LORD, for he heard my voice; he heard my cry for mercy. Because he turned his ear to me, I will call on him as long as I live." Psalm 116:1-2

We finally got to go into Lilly's room. She was hooked up to all sorts of things. Tubes and catheters were sticking out all over her body. Her chest had been glued along the incision! She had a chest drain which will be removed before long. The breathing tube was down her throat and she had a big tube in through her nose. But she looked good! Her color was great!

By mid-afternoon Lilly was moving her arms and legs around and was responding to mine and my husband's voices. She stayed busy chewing on the breathing tube for hours.

All went well except late this afternoon, Lilly got extremely agitated when her throat was suctioned out. The result was that her hands and feet got icy cold and started turning blue. The nurse called the surgeon on the phone to see what he wanted her to do and others came in to help. Lilly was given more pain management medication to relax her. After she calmed down and started getting back to normal we were told that they hadn't expected her to be moving around so quick. One doctor actually seemed rather pleased. He said "She's fiesty! She'll probably be off the breathing tube very soon!" In fact, tomorrow they are planning to try Lilly just on the oxygen under her nose rather that the ventilator.

One nurse told me to "get used to" the turning blue bit. If I understand this correctly, the band in her heart keeps the blood flow contracted. If there is too much demand (i.e. she's upset) then the blood can't keep up with the demand.

We're just so very grateful for the Lord sparing Lilly's life. And for making our wee girl "fiesty"!

"Not to us, O LORD, not to us but to your name be the glory, because of your love and faithfulness." Psalm 115:1

Wednesday, September 29, 2010

Surgery's Eve

Weight check = 5.4 lbs.

Pre-op for tomorrow's (Thursday's) surgery began at 3:30 a.m. today. Lilly had a chest x-ray and blood taken. (My husband said the nurses tried to keep from waking him up but it's hard to sleep when someone lays a big heavy blanket on you to protect you from radiation from the x-ray machine!)

Chest x-ray was normal, other than the fluid around the lungs. Bloodwork good - electrolytes better.

Lilly's continuous feeding of milk was stopped this evening, so that her stomach will be empty before she's administered anesthesia tomorrow. (Which she'll get through an IV at the neck or groin area. Ouch!)

Surgery prep will begin between 7:30 - 8:00 a.m. Thursday. The surgery itself will take about 3 hours, if all goes well. Then she will stay in the ICU for several days. A nurse will stay in her room for the first 24 hours.

We learned that Lilly will have a breathing tube (down her throat) for maybe up to a couple days after surgery. She also may have a chest drain. It sounds like she'll look pretty terrible at first. But if she survives, then all this is worth it. (And right now we're both feeling really positive about her surviving.)

We were really touched to learn today that our church will be fasting for Lilly tomorrow.

Today I read the following passage to Lilly, while imagining what an exciting moment this must have been for these parents and children: "People were also bringing babies to Jesus to have him touch them. When the disciples saw this, they rebuked them. But Jesus called the children to him and said, 'Let the little children come to me, and do not hinder them, for the kingdom of God belongs to such as these. I tell you the truth, anyone who will not receive the kingdom of God like a little child will never enter it.'" Luke 18:15-17

Tuesday, September 28, 2010

Blowing bubbles

Weight check = 5.4 lbs.

Lilly was sleeping soundly when I got the hospital this morning. My husband said she had a good night (unlike him on the hospital's "bed" for parents.)

Her breathing remained stable today and her temperature normal. She has no signs of infection so they stopped the antibiotics. They are working on weaning Lilly to the lowest level of oxygen as possible.

They decided not to move her back upstairs and just keep her in intensive care until surgery. Apparently the nurses in ICU are more used to handling breathing issues like Lilly has.

I call this second picture "where's Lilly?" because she looks so tiny on the bed.

I got a few questions answered about surgery. If all goes normally, she'll spend 3-4 days in intensive care after the surgery and then be moved upstairs for 4 days or so. They will get to her heart by going in through her chest, rather than her side. This means they'll have to break her sternum. Though apparently at this age it's not too bad because the sternum is mostly cartilidge.

In this last picture Lilly is blowing an impressively large spit bubble. I had been amusedly watching her blowing groups of little ones. Then suddenly one grew and grew - and stayed long enough for me to take this picture.

Lilly had a bit of a fussy afternoon so I spent a lot of time standing by her bed and patting her and talking in a low voice to her. She usually responds well to me. I reminded her of something God said: "Never will I leave you; never will I forsake you." Now that is incredibly comforting!

One blessing coming from my husband staying at the hospital with Lilly 24/7 is how they have really bonded. She now is also calmed by his voice. They both met two of the Jacksonville Jaguars football players this morning. The two football players were going around the hospital with the "Wolfie Wagon" (a cart with snacks, treats, coloring books, etc.) and offering everyone a freebie. I saw the men as I arrived and thought that must be really exciting for the kids in the hospital to meet them. (And for parents that are football fans too!)

As Lilly was crying at one point today, I thought of Revelation 21:4 which speaks of the new Jerusalem: "He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away." Now isn't that something to look forward to?!

Monday, September 27, 2010

Milk. It does a body good!

Weight check = ?? I don't know but it has not dropped.

This morning when I saw Lilly I was shocked. She was laying limply in her bed and was a ghastly pallor. I was afraid to speak to her because of yesterday so I just sat in a chair and watched her. I kept thinking that must be how Lilly would look close to the moment of death.

But after about an hour or so, Lilly began moving around. She kept putting her fists into her mouth. It was cute but in doing so she was knocking out her oxygen tube and pulling on the feeding tube in her mouth. I could tell she was very hungry (she was still only on IV's for nourishment) and I even heard her tummy rumble. I tried putting my pinkie knuckle in her mouth. Wonderfully that made her very happy. I leaned into her bed for one hour while she contentedly sucked my knuckle and looked at me. Yay!

The doctor found out that Lilly's surgery can not be bumped up from Thursday so he ordered her feedings to begin again. They decided on giving her more calories and making her food more dense. So not as much to fill her tummy but she'll get the nourishment and the calories. (28 calories per ounce of milk done by adding formula to breastmilk.) Again they felt that her feeding was linked to her struggles with breathing. Too much food in her belly makes her heart and lungs work too hard to deal with it. So after Lilly had been sucking my finger for an hour, the nurse came in with a new NG tube to stick down Lilly's nose into her stomach and then hooked it to the milk pump and turned it on. While the nurse was doing this, I took my lunch down to the "family room" where we're supposed to eat. When I came back Lilly was on the milk and so much more content. Before long she looked great! Her color had come back and it was almost like we were seeing her cheeks grow rounder again before our eyes. Soon she was so content she feel into a long peaceful sleep.

If Lilly's temperature and breathing stay stable enough, she will be moved back out of the intensive care unit to the floor she had been on, to await surgery.

We noticed something neat that the hospital does - whenever there is a baby being born, a lullabye is played over the intercom. It's so sweet sound it makes me want to tear up. One of the most wonderful and amazing things in the world is a baby being born!

Another random observation is that probably the most common thing that the staff (and us!) say to Lilly when she's fussing is "I know ... I know ..." It sounds all soothing and understanding but I daresay not one of us really knows how Lilly is feeling. And yet I'm sure I'll find myself saying it again before long.

My last picture today shows Lilly doing some homeschooling. She is studying her lines. I've done this with all my babies - it helps them get better at focusing their eyes. Soon we'll move onto simple black and white drawings of faces. Lilly seems to enjoy looking at her lines as much as her brother and sister did theirs.

I read a couple chapters from Ecclesiastes today to Lilly. After we finished the book, she let me know this was the verse she liked most today: "Anyone who is among the living has hope ..." Ecclesiastes 9:4

Sunday, September 26, 2010

Hands off!!

Weight check = ?? Lilly was weighed last night when she was checked into the pediatric intensive care unit. Her weight was up from that morning. But today they still had not checked her weight by the time I left the hospital a bit after 7:00 p.m.

The unit Lilly is in now seems pretty stressful. Well I guess it's more Lilly than the unit itself. I was so happy to see my wee little girl today. I went to her bed and started talking to her and touching her. She looked at me and started fussing. I knew she wanted me to pick her up. (At home she will do that - turn her head towards me and start fussing when she hears my voice.) The nurses were very accomodating and moved Lilly's machines around so that we could sit in a chair. It was quite an ordeal to move her. Lilly was so covered with tubes and wires that they wanted her to be on a pillow in my lap. Lilly didn't like that. (The main way she likes me to hold her is upright against me.) So she started getting really worked up and then ended up having her gasping breathing problem. (They said her trachea was obstructing.) I couldn't calm her down and she started panicking which made it worse. So they took her away from me and gave her a sedative. It took awhile but she finally calmed down and went to sleep, though not before pulling out her feeding tube, which was now in her throat.

So how disappointing is that - to be in the room with my baby and I was afraid to even talk much to my husband because I didn't want Lilly to hear my voice. When I called my husband tonight to let him know I was home from the hospital safely he said she was fussy again and it was just breaking his heart that he couldn't hold her and comfort her.

Another disappointment to me was that Lilly's IV had been moved from her hand to her head. (The vein in her hand was collapsing.) And because they plastered tape on her head they shaved that area. Now I'm glad the tape won't hurt as much when they pull it off, but I hate her losing any of her dark hair!

The doctors are trying to get Lilly's surgery date moved up. (It's currently scheduled for this coming Thursday.) We should know tomorrow if this is possible. They are trying to keep Lilly stable and ready for surgery now. They stopped her feedings (milk by tube) yesterday evening and have her hooked up to the IV to get nourishment. I hate her not eating the good milk, but they wanted her stomach empty so she could be ready for surgery. They did say for the Pulmonary Artery Band surgery that her weight isn't as important.

One of the nurses called Lilly "feisty" today. She really is a fighter! Our little Miss Firecracker. She'll be 3 months old before too long. (October 4)

Saturday, September 25, 2010

Lillian Eva and the Terrible Horrible No Good Very Bad Day

Weight check = 5.4 lbs. Lilly is now FINALLY over birthweight!! Thank you God!

My weary husband told me that Lilly had a very bad night last night. (Which of course meant he had a rough night.) Lilly didn't sleep well at all. She couldn't get comfortable for long and was fussy. She kept setting off her breathing alarm.

This morning she had another chest x-ray and it showed she had A LOT of fluid around her lungs. So that was what was wrong last night - she was really struggling to breathe. By the time I got to the hospital today she had a breathing tube in her nose. They were just giving her a tiny bit but it seemed to be helping some. She had so much fluid because they had stopped the Lasix yesterday in an effort to get her sodium levels back up. Obviously that turned out to be a mistake. So they restarted the Lasix today and gave it to her by I.V.

This afternoon she developed a fever. It was just under 101 degrees. It dropped slightly after more medication. (Ugh - my husband and I are having a hard time with all the medication being pumped into Lilly. It seems everything has a side effect.)

As the day progressed, Lilly's breathing got worse. It was horrible watching how hard she was struggling. (Made the worse that the white t-shirt she was wearing was so wide on her that it was hanging off her shoulders. Lilly's a normal length, but I need to learn to make her some extra extra extra slim sized clothing.)

There was enough concern that a doctor from the pediatric intensive care unit (PICU) was summoned. He studied Lilly for a few moments and then held her and commanded that her oxygen be turned up. Immediately following that Lilly completely relaxed and stopped fussing. After further observation, the dr. said that he would be able to better treat Lilly in the PICU because they had some resources that the floor she was on did not.

So we hurriedly packed up our things in Lilly's room and the nurse led us to Lilly's new room in the PICU. There was a flurry of activity at first and Lilly was quite agitated. Nurses kept trying to get her to take a pacifier to calm down and I kept telling them that she had no interest in one. Finally they finished on Lilly for awhile and asked me to try to calm her. I couldn't get her out of her bed because of all the stuff she was hooked up to so I cradled her head with one hand and with my other held her little hand. I started speaking quietly to her and she stopped crying quickly and calmed down to normal. She was so alert and her eyes so big as she watched me. We ended up having a nice little conversation for quite a while. She was making a new type of cooing noise and it was so wonderful to have her relaxed and at peace after such a stressful day. (I think she did it to reassure me because I kept wanting to burst into tears part of the afternoon as I watched her struggling to breathe. After our "conversation" and seeing the extra care she was getting I felt so much better as I left the hospital tonight.)

Thankfully the PICU allows one parent to spend the night so my husband is able to continue to stay with her. Lord willing they'll both get some decent sleep tonight! (It's amazing how something as simple as sleep makes such a huge impact on one's day.)

Today's scripture that encouraged me: "Now faith is the assurance of things hoped for, the evidence of things not seen." Hebrews 11:1

Now on a completely different note - for those of you that know my youngest brother P. - his wife K. gave birth to their 3rd child today. The biggest surprise was that it was a girl! (They had thought it was going to be a boy.) So Lilly has a new girl cousin. That sweet new baby may be bigger than Lilly, but Lilly can claim "older" status. :)

Friday, September 24, 2010

A plan ...

Weight check = a very slight drop

Lilly was given a bath by the nurse early this morning. That explains her fluffy mohawk in today's picture. Lilly had more bloodwork done. If they keep that up I don't think the bruises on the sides of her head will ever heal! They wanted to check her hemoglobin levels.

Last evening the doctors and surgeons met to discuss cases. A plan was put into place for Lilly. The biggest part of it is that she is scheduled for surgery next Thursday. They are going to do the less invasive surgery first - inserting a pulmonary artery band into her heart. They'll go in through her chest. (It's usually done through the side but they decided that the chest is better for Lilly because it will make breathing right after less painful. That is important because there is a lot of concern as to whether or not she will be able to come off the breathing machine on her own. Please keep praying that she will - I can't stand thinking that if she can't, she might have to be in a breathing machine for the rest of her life.) Recovery from the surgery is about 3 days. Then we should be able to go home to North Carolina and Lilly will be monitored by her pediatrician and cardiologist. Lord willing the band will help her heart function well enough so that she can grow bigger and stronger in preparation for the open heart surgery, which would probably be before the end of the year.

Lilly (and my husband) will remain in the hospital until the surgery. The doctors want to try and keep her as stable as possible, and continue observing her.

They also want to check Lilly's brain. They tried to do a C.T. scan on her this afternoon but she kept moving her head around too much. They said they'd try again tonight.

Something wonderful this afternoon - we got to have Lilly unhooked from everything enough that we could walk laps around the hospital floor she's on. I put her in my ring sling and we walked for about half an hour. It felt sooooo good to walk! Lilly snoozed through the first half and then had her eyes wide the second half. (A special "hi we miss you!" to our Friday walking buddies - we can't wait to be walking again with ya'll soon!)

Because of her full trisomy 18, Lilly is considered to be a "disabled citizen." We started the process today of seeing about her getting social security. I think she should qualify. The financial person surprised us today by saying that perhaps all of Lilly's medical bills could reach a million dollars. (The surgeon had told us it should be well under the $250K we are entitled to from our medical needs sharing program - Samaritan Ministries.) I cannot even fathom paying a million dollar bill.

I am completely exhausted tonight but wanted to share this from Ecclesiastes 7:14: "When times are good, be happy: but when times are bad, consider: God has made the one as well as the other. Therefore, a man cannot discover anything about his future." (The book of Ecclesiastes is great reading! King Solomon wrote much to ponder about.) I often think I'd like to know our future, but I think it's probably good I don't.

Housekeeping note: Comments

Several people have contacted me to tell me they haven't been able to make a post in the "comment" section. I just found a setting I could change so hopefully it will now work for anyone that wishes to post a comment.

Now I'm off to the hospital for the day! It's feeling like I'm commuting to a job. Of course what an awesome job it is - sitting all day holding my wee little girl!

Thursday, September 23, 2010

5 lbs. 5 lbs. 5 lbs.!!!!!!!!

Weight check = 5 lbs. 1 oz.!!!!! Yippeee! Clap and cheer for Lilly! Thank you God ...

Lilly had more blood work this morning. We learned her sodium levels are still really low so they've upped the electrolytes they're adding to her milk even more. The dr. thinks that is probably caused by the Lasix medication.

Late this afternoon Lilly's doctor and the surgery team were to have met to discuss cases including Lilly's. The doctor said that when she meets with us tomorrow (Friday) she hopes to have a more concrete plan for Lilly and the upcoming surgery, possible release, etc.

Lilly's brother and sister got to come for another visit today. Big sister was so happy to hold Lilly again. (Thankfully she wasn't so afraid of all of Lilly's wires today.)

Lilly's doctor mentioned that she had just been referred the case of a local woman that is pregnant with a trisomy-18 baby. Amazingly that woman is a friend of a friend of my aunt's and I talked briefly with her a few days ago by phone. I just can't believe all the T-18 babies I've been finding out about when I had never even heard of it before this year. My mom told me she sat next to a woman on a plane recently and that woman had lost her T-18 baby earlier this year. If I'm remembering the stats right, there are about 6000 T-18 babies diagnosed each year. Of those 6000 about 2000 are aborted. Of the remaining 4000 over half die at birth. Of those that are left, 90% die within their first year of life. It's amazing, isn't it, that Lilly is still alive! (By the grace of God.) What a strong little fighter. She was born on Independence Day and at the hospital she was nicknamed "Little Miss Firecracker."

At the hospital today, the cleaning lady asked my oldest daughter why she wasn't in school. My daughter politely answered that she is homeschooled. I've been thinking these past few days what a blessing it is to have choosen to homeschool. Or else my daughter wouldn't be able to be with us and spend the time that she does with her sister. (And yes I did bring a lot of her homeschool work with us!)

My oldest daughter likes to ask people who their favorite historical person is. When they ask her in return, she always gleefully exclaims "Martin Luther!" One of her favorite hymns, which she loves to play on the piano, is Luther's "A Mighty Fortress" song. I thought of this today when I read a very reassuring scripture: "The Lord is my rock, my fortress, and my deliverer; my God is my rock, in whom I take refuge. He is my shield and the horn of my salvation, my stronghold." Psalm 18:2.

Wednesday, September 22, 2010

Pinchable cheeks!

Weight check = up but not sure by how much. Lilly has this enormous IV on her hand and lots of tape and padding around it so they don't know how much she gained and how much is the IV thing.

Lilly was so much more relaxed and at peace today. She slept on me almost the whole 9 hours I was at the hospital. So that's what our Lilly picture is of today. She's sleeping so hard her little mouth is open.

Good news - Lilly's color was much better today and her cheeks are actually round enough now that I can get a teeny tiny pinch out of each one. The blood transfusion she had last night seemed to agree with her. :)

I came home without my husband and Lilly tonight. We had hoped Lilly would be released today but it seems they keep finding something to be concerned about that needs further observation.

Early this morning she had another chest x-ray. It showed that Lilly has a lot of gas in her stomach and way too much fluid in her lungs. She's on medication for these things so the doctors were very surprised. However my husband may have figured that one out. Lilly has spit up twice about 15 minutes after having her medications. So she's not keeping them down and they're not in her long enough to help her. The nurse was giving her 3 different medications plus a multivitamin all at once through her feeding tube. Then because the medications are sticky they have to push some sterile water through the feeding tube. All together those liquids added up to way more than her little stomach can hold. (And remember she is getting the milk on continuous feed too.) So this evening the meds were going to be spaced out to see if that helped. I'll find out tomorrow if it did.

Lilly's bloodwork showed that her sodium levels were very low. They don't know if it's caused by something in particular or is an effect of her having trisomy 18. So they're adding electrolytes into her milk.

I joked with my husband that he can say he has been in the hospital for 8 days now. Of course Lilly's the one that was hospitalized. But my husband has been in the room the entire time with her and goes everywhere with her that she is taken for testing. He only leaves when I'm there to go out for food and to check his work e-mail. I am so incredibly grateful to him for that as I can't stand the thought of Lilly being there without one of us. (There are baby boys - maybe one year old if that - in rooms next to Lilly and they cry so much. We never see anyone in their rooms with them except hospital staff and we find it so sad it makes us want to cry right along with them.)

Today I was thinking about how even though it is difficult how our family is split up right now, I know it's just for a time and Lord willing, we will all be back together soon. It's one of those "seasons" of life. That reminded me of what King Solomon wrote: "There is a time for everything, and a season for every activity under heaven" and in his list of things which follow is "a time to heal." (Ecclesiastes 3:1 , 3b) I pray this is the time for Lilly to be healing! I've always liked what Solomon wrote in this passage. It was first seared into my brain when I was seven years old. My aunt had died in a fire and we were at her funeral and my dad read this passage at the service.

Solomon wrote another thought provoking verse in this same chapter (verse 11): "He [God] has made everything beautiful in its time." That is so mind boggling and comforting at the same time to know that God can make horrible tragic things "beautiful."

Tuesday, September 21, 2010

Have you ever had blood drawn from your head??!!

Weight check = 4.9 lbs. (up 45 ml)

Having Lilly hooked up to the pump for continuous feeding seems to agree with her. She's getting more rest and just seems more content. She did have a couple spit ups but only one bad one. The last picture in this post shows her hospital pump (bag of milk is hanging in the top left area).

She rested comfortably on me for much of the day. This first picture shows Lilly in her favorite position. (Man those arms look skinny! She has no problem waving them around though!)

This second picture shows that Lilly still has all her beautiful dark hair and I'm pretty sure it has been growing in some more while at the hospital. I can't wait until I can fix her hair into puppytails one day. :)

The Vasotec medication was increased because Lilly's blood pressure is still up.

We found out today that Lilly was very anemic when we brought her to the hospital. The dr. ordered that more blood work be done to re-test that, along with some other things. Oh joy. So poor Lilly had to endure being pricked a number of times to get the blood they needed. She bleeds well but clots fast. The worst was when they pricked some of the veins in her head to draw blood. She was upset enough that she had a huge spit up and her breathing set off alarms. She also had to have an IV inserted because they want to give her blood (which would hopefully make her feel better and give her better color).

As I looked at her on the table with them drawing blood from her head, with a rubber band around her head squeezing it to help with the process and I just wanted to cry. I started thinking "What are we doing? Is this right? How much will she have to endure? And does she want to?" If she were able, would she quote Psalm 42:2 to me? My soul thirsts for God, for the living God, when can I go meet with God? I started feeling torn. As a Christian I see the value in Lilly's life and want to fight for her to have the best chance she can. And yet I know that it would be such a blessing for her to leave the misery of this life on earth. What is right? I don't want to make such a decision. I'm much too selfish and want her here with us.

Today we met Dr. C, the surgeon that will hopefully do the needed open heart surgery. He is very concerned about Lilly's terribly slow weight gain. He doesn't want her to die of heart failure and he doesn't want her to die on the operating table because she's not strong enough. He wants to give her more time to grow though how much time is safe? So he began discussing a possible temporary fix. That would be to insert a pulmonary artery band (PAB) into her heart. This should help keep the fluid around Lilly's lungs down while she hopefully gains more weight.

If this is done, she will be put under, and then the band will be inserted through the side of her chest. She'll have to be on a ventilator during the procedure and once again, there is a great fear that she won't be strong enough to breathe on her own after. And then what? I hate facing this question again. (How much do they intervene to keep her breathing on machines and for how long?) Please Lord - no matter what procedure it is - please let Lilly breathe on her own right after.

If Lilly has a good night and good report for Wednesday morning, then the hospital plans to release us. We'll continue Lilly on the continuous feeding for 2 weeks. The kids and I will stay here in Florida so that Lilly can go to her appointments and have immediate help if needed. (I fear that the hospitals back home would refuse to treat her.) My husband would fly home so he can go back to work for a week before fall break and take care of things at home. We decided flying would be better than driving in case he needs to get back here quickly for an emergency.

A random thought for today: I wonder if Jesus or the apostles ever healed a trisomy 18 baby?

Monday, September 20, 2010

Mama I still don't like it!

Weight check = the same as yesterday

The feeding tube occupied our day today. I had to learn to insert the tube into Lilly's nose and down into her stomach. I did NOT like doing that. The nurse found a smaller tube for Lilly which does look much better on her and is hopefully more comfortable. But Lilly still does NOT like it. (Who could blame her?)

The Dr. decided that getting Lilly to conserve calories is much more important than having Lilly bottle feed 15 minutes before the tube to practice her sucking skills. The Dr. said Lilly's two main ways of burning calories right now are: digesting and eating. (These lead to fussiness, spitups, and gas and that burns even more calories.)

So in hopes of eliminating some of those problems, the decision was made to only feed Lilly by tube right now, and to up the amount of formula added into the breastmilk. Plus it would be a "continuous feeding." This is considered to be the gentlest way to feed Lilly. It means she's now hooked up to feed 20 hours a day. (Milk slowly drips from a bag into the feeding tube.) They started it today and Lilly didn't respond too badly overall.

A medical supply company brought us pump that Lilly's milk bag and tube would be hooked up to when we leave the hospital and taught us how to use it. It's not that hard, but all this stuff is so foreign to me, I just hope I get it right when/if Lilly comes home on it.

The occupational therapist came and saw Lilly today and did some stretching of her arms and legs. She still wants to get some splints made for Lilly's hands.

In addition to the two medications Lilly is taking for heart failure and for blood pressure, she is on antibiotic drops to clear up all the goop in her eyes, a gas pain alleviation medicine, and another drug to help keep the spit up (stomach acid) from burning her throat. Plus a multivitamin with iron to try and up her red blood cell count. Goodness! I'm not much of a fan of medication anyway, so this is just mind boggling that my wee little girl is on all this stuff.

As I was flipping through a homeschool magazine this afternoon, one article had several scriptures that really spoke to me with what I needed to hear today. Two of the verses:
Psalm 27:14: Wait on the Lord: be of good courage, and He shall strengthen thine heart: wait, I say, on the Lord.
Isaiah 40:31: But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.

I know I'm being pretty detailed and wordy in some of these posts. But a huge reason why is because this blog has become a Lilly journal for me to remember all this stuff. I had been keeping a notebook and just writing out important things by hand. But this has taken over much of that because my time is so limited. Plus I like having the pictures with my posts. I found out that I can have my posts printed into a bound book. I plan on doing that at some point. It will be a wonderful Lilly keepsake!

Sunday, September 19, 2010

A surprise visit

Weight check = 4.9 lbs. (slightly up from yesterday)

Today I took my son with me to the hospital to surprise Lilly and their daddy. Lilly got lots of kisses from her loving brother.

Hospitals are shorter staffed on weekends so it was a pretty low-keyed day. My husband and I both did part of the preparation for tube feeding and were checked off on it by the nurse. The strangest part to me is checking Lilly's stomach pH. We have to screw a syringe into the end of the feeding tube and when we pull back on it, it draws some of what's inside Lilly's stomach out. We take a few drops of that and then put it on a pH strip. It's supposed to fall between certain numbers to show that it's safe to proceed with tube feeding. (If we were to get the wrong numbers then that would mean that the tube probably came out of the stomach in which case it would be terrible to force the milk in.) Tube feeding is a lot of work for us but it's easy for Lilly - she can easily sleep right through it. They tried to get her to wear a hat today because her temperature was low again this morning. But she wouldn't. I told the nurse I bet it was because the hat was touching that tube, and Lilly still is acting annoyed every time the tube part that touches her head is moved.

The dr. reported that Lilly's chest x-ray from the other day showed that everything was normal looking, except for a lot of fluid around her lungs. Her thyroid test from yesterday is normal. He also said that if Lilly's weight gaining trend continues, she may be released in a few days, and then would come back in 2 weeks for surgery re-evaluation.

If we have to be in this situation at a hospital, I'm thankful we're here. Most everyone involved with Lilly seem like they really care.

This last pictures shows the view outside one of Lilly's hospital room windows. Hunter enjoyed playing with his trucks in the window sill today and looking outside at the construction heavy equipment, the parking garage ramps, and boats on the St. John's river. An interesting tidbit about the river is that it is one of the few in the country that flows north, instead of south.

It was sooooo hard for me to leave Lilly this evening, though it did help to have my son with me. (He's such a happy little guy.) Once again I'm feeling so blessed that most of the time my family is all together every single day.

Saturday, September 18, 2010

A fresh clean baby

Weight check = 4.8 lbs. Yes sadly Lilly dropped a tiny bit of weight. The dr. said he was expecting that though. She lost a lot of fluid yesterday. Even with the Lasix she has so much fluid around her lungs.

This morning Lilly was running a fever. That finally broke this afternoon. Her little body is just working so hard to adjust to so many things including learning to process all that food in her.

Speaking of food, we are continuing with her eating every 3 hours. By bottle for 15 min. and then finish up with tube feeding. We have
noticed that Lilly seems to alternate how well she does at the bottle portion of the feeding. It's usually every other time that she does great (drinking about half the bottle) and then in the in between times drinks only a tiny bit and refuses the rest.

Lilly had more blood drawn today for some tests including a thyroid test. The dr. is wondering if she's having thyroid problems and that is affecting her lack of growth. I'll be curious to find out as I assumed it was only trisomy 18 related.

I had an extra blessed time with Lilly this afternoon because I got to give her a bath! Now I like bathing her anyway, but I can't tell you how wonderful it was to hold her with all those monitors and wires off of her. (Except for the NG tube had to stay in her nose.) But it was so nice to wash her in warm water and be able to feel her soft baby skin without interference. Another thing I'll never take for granted!

Then after bath time I dressed her in fresh clothes which included an adorable, soft kimono type shirt made for Lilly by my dear friend C. Lilly's extra huggable in it. :) Lilly is wearing the shirt in the first two pictures. (Note the side tie - perfect for easily keeping all those wires on her chest and sides inside the shirt.)

The bottom picture is of Lilly holding her "diplomas." (Rolled up washcloth bits for her to stretch her fingers a bit. Her hair looks extra crazy in the picture because it had finally dried from being washed in her bath. (Her hair is soooo soft and sticks up like crazy when it's clean and first dry.)

My scripture for Lilly (and my husband and I) today is from Luke 1:37: "For nothing is impossible with God." Can I get an "amen"?! :)

Friday, September 17, 2010

Tangled tubes and wires

Weight check = 4.9 lbs. (or as the hospital puts it - 2.23 kg.) Whatever - it is an increase in weight - finally! Thank you Lord! My husband said Lilly slept through the night - in her own bed - for the first time in a long time. Perhaps she was finally full enough feeling to be comfortable.

Lilly is eating every 3 hrs. Sometimes she'll drink half her bottle first, other times she's too exhausted to drink more than a few sips. So after gently encouraging her to bottle feed for 15 minutes, her feeding tube is hooked up to a pump and it slowly pushes out whatever milk was left in the bottle, through the tube. It usually takes about 25 minutes.

I was surprised to see Lilly this morning. They had to re-tape her feeding tube and the only way to get it to stay well is to put tape criss-crossed over her nose. It's starting to get hard to recognize my wee little girl - she's such a mess of wires and tubes. I just want them all taken off so I can hug and hold her properly!

The doctors were very pleased that Lilly has gained a bit of weight. They thought perhaps we might leave the hospital with Lilly early next week. (We have to learn how to work the feeding tube.) Then let her continue with the feeding tube at home for a couple weeks in hopes that she will continue to gain weight for surgery. We'll see though. We don't know if she can wait that long for surgery.

Lilly had trouble keeping her core temperature up today, until later this afternoon. (Yesterday she had a fever in the morning.) So we had to keep several blankets around her.

She's developed a bit of a cough which was starting to concern us. However we learned that it was due to the feeding tube, which moves and tickles across the back of her throat.

Besides continuing Lilly on the Lasix, she's on a medicine called something like Vasotech. (I don't know how to spell it.) This mediation helps the pumped blood go into her body instead of her lungs.

Lilly was also examined by a physical therapist today. She checked out quite well except for her clenched hands. We told the therapist about how we often put cotton balls in her hands to help her keep them open a bit. The therapist said she wants to make a splint to do that. But in the meantime she cut up a washcloth and rolled small parts of it up and we put one in each hand. (My husband says they look like Lilly is holding a diploma in each hand.) They hold her fingers open nicely but unfortunately don't stay in place well.

Lilly's brother and big sister got to visit her today. Big sister was horrified at all the stuff hooked up all over Lilly. She brought Lilly a beautiful picture she drew and colored of an Easter lily. Brother didn't seem to notice Lilly's altered appearance - he was just happy to be there and see Lilly and Dad. And to play on the riding toys outside Lilly's room. And to look out the window and see boats on the St. John's river and a train and ooooohhhh! heavy construction equipment! What an exciting day indeed!

We took the kids downstairs to an area that had a big wooden Thomas the train. (My son is obsessed with Thomas to the point that he pretends to be Thomas some days.) And then outside the hospital where I took some pictures, including a cute one of them on a bench with some statues.

Here is Wolfson Children's hospital:

And here's the bench picture:

Our humorous story for today occurred when we were outside and security busted me for snapping pictures. Apparently it's against hospital policy, so as to protect the identity of other patients. The security officer was very nice about it though my husband jokingly complained I thoroughly embarrassed the family. (The incident reminded me of a time years ago when I went to the courthouse law library for my job and ended up getting caught with a large pocketknife in my briefcase. Ha!)

Today I read the book of Lamentations. I was thinking this would be a good passage for Lilly:
I called on your name, O Lord, from the depths of the pit. You heard my pleas; "Do not close your ears to my cry for relief." You came near when I called you, and you said, "Do not fear." (Lamentations 3:25)

And this passage was for me: "The Lord is good to those whose hope is in him, to the one who seeks him . . . " (Lamentations 3:25.)

Thursday, September 16, 2010

Feeding tubes feel soooooo annoying!

Weight check = something in kilograms which I don't know in pounds! However Lilly's weight was down - again - this morning. :(

So the hospital Dr. decided to try a feeding tube after all. So at "high noon" Lilly got a "NG" tube inserted into her nose. It goes all the way down into her stomach.

To say that she doesn't care for it is an understatement as seen in this picture. I'm sure it does feel awful though it sounds like she should get used to it. She cries every time it is moved or bumped. What makes it really frustrating for her is that it limits her favorite sleeping position.

To keep up Lilly's "sucking skills" she gets her bottle for 15 minutes to eat. Then, in order to have her conserve energy and to be sure she finishes the bottle, the rest of the milk is put into a big syringe which is inserted into the end of the feeding tube. The syringe is then either slowly pushed to give her the milk through the tube, or hooked up to a pump which does the work. After all the milk is given, some sterile water is pushed through the tube to clean it out. We then have to be sure to keep her head elevated for 30 minutes to avoid reflux. Thankfully she has been keeping the milk down. (Spit up from these tubes is very common.)

This other pictures shows Lilly in her hospital bed. Seeing her laying in it is actually a rare thing. My husband or I are almost always holding her.

Lilly had a chest x-ray this morning before I got back to the hospital. My husband said it looked awful how they had to do it and he was glad I didn't have to see. We're paying that it didn't turn up anything else wrong with Lilly.

We also worked some with Lilly and a speech therapist today. No Lilly isn't working on speaking proper English yet! But it seems that a "speech therapist" here also works with eating issues. Working with her was just like working with a lactation nurse back home. She watched how we bottle fed Lilly and made a few suggestions. One was to slightly tweak the main feeding position we use. Another was to switch to a "slow flow" bottle nipple. I had been using "medium flow" because I thought that if Lilly didn't have to work so hard to drink, then that would save calories. But after seeing Lilly drink from both, the speech therapist felt that the slow flow nipple was better for her because of how she drank and her current condition.

Lilly was put on some antibiotic eye drops today too. She has almost constant discharge from her eyes. It's been going on long enough that it doesn't seem likely it's just blocked tear ducts anymore. (I had been dripping some breastmilk from the bottles into Lilly's eyes as that (amazingly!) can clear up eye infections. But either I just didn't do it long enough or her case was too bad, because it never completely knocked it out.)

Today again seemed to be constant activity with doctors and nurses and volunteers and other workers coming in and out of Lilly's room. Not sure how she is supposed to really rest with all that activity!

My husband and I have both brought a bunch of books to read. I figured we'd mainly be sitting in the room, holding Lilly, and reading to pass the time. Goodness - it's usually too busy for that! Or sometimes when it is quite, our minds are racing too much with everything going on to really settle down. I did, however, manage to read the book of Habakkuk today. Habakkuk 1:5b is such an awesome and encouraging verse (it is God speaking to Habakkuk): "For I am going to do something in your days that you would not believe, even if you were told." I started thinking about all the amazing surprises God has blessed me with already in my life. I can't wait to see what all He's doing in Lilly's life!

As I left the hospital tonight, I really felt sympathy for other families in situations like ours. It's so hard to have one child in the hospital and my others elsewhere. I'm very thankful they are at my aunt's house of course - and they're both having fun - but it's so hard not to have all my kids together with me. When I'm at the hospital I miss the ones at home. When I'm home I miss Lilly. This is all teaching me to appreciate our days together at our home all the more!

And finally, this is just a bit of humor for those of you that know what our family vehicle is. Now usually I really enjoy driving our "tank." But I have discovered I do NOT like driving it in parking garages! It's really rather scary. I had to drive up 5 levels this morning and the ceiling was sooooo low that I found myself literally ducking and cringing in a number of places. (Yeah I know - like that will do any good!) The top of the vehicle (luggage rack bolts) actually scraped in a couple places. I found myself driving painstakingly slow around every turn. They obviously didn't build those garages for tanks like ours!

Wednesday, September 15, 2010

Checked in

Weight check = 4 lbs. 10 oz.
Height = 20 inches

Yesterday we made it safely to Florida. Here's a picture of Lilly enjoying the ride. Thankfully she slept a good deal of the trip.

This morning we met with Dr. E, chief of surgeons. How refreshing to meet with a doctor who thinks like we do - that T-18 babies are worth helping! (They've performed the open heart surgery on several other T-18 babies at this hospital and all survived and are in their toddler years.)

Lilly had to get an EKG. (Look at the picture of her lying on the table and note all those wires on her - isn't it pitiful looking?) After that she had an Echo. Thankfully that wasn't as miserable for her. I got to hold her and bottle feed her while that was done.

Dr. E looked at the results and then told us she was in "horrible heart failure" and they want to help. He made arrangements for Lilly to be admitted into the hospital so that they can help get some weight on her. He also said her medication (Lasix) would be tweaked and another added. He suggested a feeding tube be inserted into Lilly's nose. He said that she might be ready for surgery next week or that it might be several more weeks.

We then checked Lilly into the hospital and she was evaluated further. The dr. there said that he didn't want Lilly on a feeding tube. That they were going to continue what we've been doing - add formula to her breastmilk to up the calories. They will monitor her for a few days. If she's increasing weight we will leave the hospital with her and come back to my aunt's home.

Poor Lilly has been poked and prodded and hooked up to all sorts of stuff. This last picture shows her hooked up to the monitors that are constantly on her at the hospital. Poor baby was just so cold and tired and kept getting disturbed. I had to keep telling her that whether she believes it or not we are actually trying to help her.

My husband is staying overnight at the hospital with Lilly and I came back to my aunt's house to take care of our other 2 children. I'll head back to the hospital in the morning. I've got to get my children into bed now and I've been thinking of how strange - and sad - it's going to be when I go to bed tonight. Ever since the day Lilly was born, I have been sleeping propped up with pillows and holding her. I don't think I'll ever be able to sleep normally again!

Monday, September 13, 2010

We have a Wednesday appointment

I talked to the chief of surgeons at the Wolfson Children's Hospital in Jacksonville, Florida this morning. (Wouldn't you know he called when I had two babies crying!) Anyway, he set up an appointment for Lilly for Wednesday morning.

The doctor was so refreshingly positive. He reminded me that T-18 babies often don't live long. But that their surgeon is "more than willing" to do the surgery to eliminate heart failure. I love this - they want to make Lilly's "quality of life better so our time with her is better."

The plan is for Lilly to meet with the doctor and then be admitted to the hospital for a complete evaluation. That gives them the option of putting in a feeding tube.

The ideal weight for this surgery is 10 lbs. however the doctor recognized that that is completely unrealistic for Lilly. (It could take her 2-3 months to get to 10 lbs.)

We will be traveling to Florida tomorrow and are not sure how long we'll be gone. I'll update the blog while there. We will be staying with my aunt who is only about 20 minutes from the hospital. What a blessing from God that is! That means even our children can go with us.

Please pray that Lilly's little body will be strong enough to live through the surgery and she'll be able to breathe on her own, right away, afterwards.

Friday, September 10, 2010

A missed call ...

The dr. tried calling my husband on his cell phone this evening. Sometimes the ringer on his cell phone doesn't work and wouldn't you know this was one of those times. (Phooey! I even prayed that wouldn't happen) The dr. did not leave a call back number and no number came up on caller id. He did say he'd try calling again ...

Still waiting

My husband is still waiting to hear from the chief of surgeons at Wolfson Children's Hospital in Fla. This has been a long day waiting! (I'm a planner type so waiting around can be challenging.)

Lilly's cardiologist called to check on her this afternoon and to tell me he brought her case up again to the doctors here. They again refused to do surgery because they are covinced she will not live long. (I'm praying God will prove them wrong!) I told the cardiologist about Fla. and it turns out he trained under the dr. that is to call my husband today. Pretty neat. The cardiologist said he'd work with us however we need him to help.

Been a busy day here without much to visually show for it. (Moms know what I'm talking about!) It seems that whenever I lay Lilly down, as soon as she hear my voice she starts fussing for me to come get her. Now don't get me wrong - I love to hold her! But sometimes I just need to do things that require me to move quickly with both hands free. Hmmmm ... think how convenient it would be to have 4 arms. Two to hold a baby, two to fold the laundry. Ha!

Thursday, September 9, 2010

We have a surgeon!

Praise the Lord, we got confirmation today that the children's hospital in Jacksonville, Florida has accepted Lilly! The doctor is going to call my husband tomorrow to discuss more details. The nurse who talked to my aunt today said they are going to want us to get Lilly to the hospital pretty quickly. Because of the large hole in her heart she's not gaining weight and is having to work too hard to eat. They want to put in a feeding tube and get some weight on her and then peform the open heart surgery. They don't feel they can wait very long. That she is dying of congestive heart failure and is in quite a bit of discomfort.

Please pray that the Lord would ease Lilly's discomfort and allow her to live longer. She's been such a blessing to us we're just not quite ready to let her go yet.

Lilly's Trisomy 18 physical features

Weight check = I don't have the courage to check today. I have started adding powered formula into her bottles of breastmilk, so I am hoping that will add weight.

I took this picture of Lilly in the red chair this past weekend when we visited family at their river house. Miss Lilly is wearing her nautical stripes.

On a happy note - Lilly has begun cooing! I've had a couple of sweet conversations with her. What a blessing!

Lilly has the most common type of Trisomy 18. It is called Full Trisomy 18. That means that in every cell of her body, there are three of the 18th chromosomes, instead of two. What causes this? It is not known. It can happen to babies of parents of any age or race.

This plays out in some common physical features for children with this disorder. I thought I would share Lilly's.

"Rocker bottom feet" - there's an extra pad on her heels:

I don't know what to call this next one, but I read someone's description of their T-18 baby and the doctors said the way the hair grows on the back of the head is from T-18. It's like there are two swirls on the back of her head. The result is the hair in between grows together and up. (Punk rockers would envy this natural mohawk!) By the way - Lilly doesn't seem to have lost any of the beautiful dark hair she was born with:

The next picture shows several of Lilly's T-18 features. First, the shape of her small head is called "strawberry shaped." Her mouth and jaw are very small. She's got different looking ears - known as "elf ears." (A photographer recently told us Lilly had "the strangest looking ears" he'd ever seen. Can you imagine saying that to a child's parents? It did make me think if I ever saw odd features on someone else, I would wonder if they had a serious life threatening disorder.) In spite of those things, I don't think this is a face only a mama could love:

Lilly still holds her hands with her forefingers tucked under the rest of her fingers and thumbs crossed over. They're not always as tight as they used to be:

Those are Lilly's external T-18 "markers." Internally we know that her heart has a hole, also very common with T-18 children. Ultrasounds I had while she was in utero showed some issues with her brain. Other than that I don't know about other internal problems. Nor do I think I want to know yet.

UPDATE:  Click HERE for Part 2 of this post.

Monday, September 6, 2010

Still shedding those ounces

Weight check = 4 lbs. 13.5 ozs.

First the good news - Lilly is 9 weeks and 1 day old today! God is so merciful. :)

Lilly has dropped another 1/2 ounce. I've been trying to really get her to eat more and more often. But the result seems to be no weight gain plus she's been having frequent spit ups and tummy aches and that makes her cry a lot. (We don't want her to cry much - that's burning those precious calories!) None of that is productive, so I thought this week I'd continue to offer the milk, but wouldn't be so pushy with it if she really didn't seem interested. So we'll see how that goes.

We're still waiting to hear back from the hospital in Jacksonville, FL regarding them doing the open heart surgery on Lilly. My aunt called Friday and was told they hadn't gotten Lilly's records yet. How frustrating! My husband had called the week before so there was no reason they shouldn't have. He called again Friday and was told that everything was faxed that day. So Lord willing, we'll get answer this week.

Thursday, September 2, 2010

Skinny Little Thing ...

Weight check = 4 lb. 14 oz.

Lilly's still losing weight. Even though I know it's from the medication, it's so frustrating. My other two babies were so chunky from breastmilk, I guess I just assumed Lilly would be too. And maybe without the medication, she would be. (She had just been starting to really put on some ounces right before she started the Lasix.) Medication aside though, I'm guessing her T-18 is working against her too. So many T-18 babies just "fail to thrive."

My husband wonders if having a successful surgery will be the way she'll finally be able to be well enough to gain weight.

We're still waiting to hear the decision from the surgeon in Jacksonville, Florida as to if he'll accept Lilly for open-heart surgery.