Survivor!

"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

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

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?!

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

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)

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. :)

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.