Walking in the Rain

I've been absent from the computer for a few days.  I've gotten on here and there, but not enough to really do much.  I'll try to post a little more this week as I have pictures I want to share.  (We took a family photo yesterday that I thought would be fun to see.)  I also want to update on Rebecca's Wholehearted sales.  She is getting close to her goal - the high in the sky, unrealistic one. 

We went to church this morning.  One of only a few times that I've been with Eliana since she has been born.  The timing of services with her feedings lately just hasn't worked out.  I'm glad I went this morning though.  The pastor started out saying that he hoped that what he was going to say wasn't needed by anyone.  But that even if we didn't need it now, that we probably have in the past and definitely would again in the future.  The topic was about worship and walking with God in the midst of struggles.  Oh yes, that is where I am walking.

The part that I liked most was a video clip by Rob Bell called "Rain".  It was a beautiful word picture of God caring for us in the midst of difficulties and trials.  He talked of a time when he went for a walk with his 1yo son in a backpack.  As they started it was a beautiful day for a hike.  When they got to the halfway point and were on the return the sky began to get cloudy and soon was raining.  The rain turned into a storm and even the trees didn't provide enough shelter.  He talked about the reaction of his son.  How he became frightened and then cried and eventually screamed.  He talked of how this should be our reaction - to cry out when we are scared, hurting and in pain - to God.  There are many examples in the Bible of this.  Being weak and unable to continue is a sign of our weakness - and through this weakness, God only is shown to be strong.  Being afraid or weary isn't a sign that we aren't following Christ.  In fact, He has told us to come to Him when we are weak and heavy-laden.  It isn't IF, but when. 

I know that God showed me this awhile back as I was reading the Psalms and it comforted me.  I was reassured to hear it again today.  There are times when I feel like I'm failing if I'm sad or overwhelmed.  That somehow I don't measure up.  That perhaps my witness is weak or poor.  I've had people question me about this at times, though most of the time people seem to find comfort in knowing that in the midst of the struggle I am trying to turn to God.  It isn't always easy and often I feel like I'm not doing a very good job.  I guess that is when  any good that is seen im my life, is recognized as God - and only God.

The story of the Dad and his son continues with the Dad finally taking the boy out of the pack and holding him tightly to his chest.  They walk through the storm together with the son wrapped in his father's arms.  The dad comforts the child by whispering over and over that he loves him and is going to take care of him.  Isn't this just what God is doing for me - for you - for all of us?  He loves us so very much and wants us to be comforted while we are in His arms.  Comforted that when we cry out to God, He reaches out to hold us tightly and whisper in our ears how much He loves us.  That He is going to take care of us. 

So as I'm walking in the rain, I'm trying to listen and remember that He loves me.  He is holding me tightly.  He is going to take care of me.

More later on our week ahead - but now I need to go spend some time with my family.

With love

Leslie

Yesterday's appointments

I'm getting behind in my writing ... but I think that is just going to be the way things are for awhile.  I'm used to being on time or at least being timely.  That has been true with so many things from thank you notes to emails to other things both large and small.  For now, I'm learning to walk a little more slowly, to do what I can and let the rest go, to hand things over to people who are willing to help, to trust that people understand my heart  - that even when I dont respond it isn't because I don't care, there just aren't enough hours in the day.  (And I'm awake for many of them!)

Yesterday was a full day.  We met first with the surgeon's nurse.  She had been helpful on the phone and was in person as well.  She both answered questions and asked them.  I found that much of what I'd been told in the hospital wasn't accurate.  I wish I had known it sooner, but am thankful to have found out at all.  She told me that she was out of town dealing with a family emergency and that was why she hadn't been around to help then.  I'm just glad I asked.  I wondered if others sometimes just deal with the struggles on their own. 

The connecting tube I'd been using wasn't intended for long-term use.  It holds open a "flap" inside her button to allow the flow of formula.  The  other tubing (that lies flat) does fit!!!  It also does not hold the flap open, but instead the flow of liquid pushes the flap open.  Well, it may be that her flap is "stuck" open and there is nothing that can be done about it.  It may have been from using this connecting tube.  It may correct on it's own.  We'll just have to wait and see.

When we opened her button, a lot of liquid came out!  I was glad she was wrapped in a sheet - their sheet - so it didn't go all over both of us.  When the nurse saw this, she commented that Eliana was going to be a candidate for the mic-key.  This is a different type of button.  The downside is that it lasts 3-6 months (she said closer to 3) and the one Eliana currently has lasts a  year.  The other downside is that when it needs to be replaced, I will do it.  I guess if I've done the NG tube I can do this too.  Though I don't want to.  The upside is that when you connect the tube it "locks" into place so can't be mistakenly pulled out.

If she does need this new type of g-tube, she will not have to have another surgery.  It can be done in the offices as an out-patient procedure.  She did say that it would hurt Eliana.  It can't be done for at least 6 weeks though so no sense in worrying about it now. 

The nurse started taking off the bandages from Eliana's incision.  I commented that I was told to leave those in place for 10-14 days.  She said it was healed and could come off.  She also said I could bathe her.  (I had been told not to while she had the steri-strip bandages on.) 

Other things - she told me that the rate of flow was too fast.  (I had already taken it down and took it down even further.  She asked who my nurse had been and I told her that she had been great - so nice!  She is new though and clearly needs some training/teaching on this type of button.  I told her that the residents/fellows probably did too.  Again though these doctors were so very nice and helpful to us.

I felt encouraged by some things and not by others.  There is nothing that can be done though about mistakes but to move forward.  We went next to her feeding therapy.  She hadn't eaten in a while and I was hopeful that this would bode well.  She fell asleep going there and we let her sleep for awhile so we could talk.  We discussed her amounts (I felt that they were too much and too frequent based on how her stomach is emptying - or not).  The therapist agreed.  She recommended that I cut down her feedings for the next 5 days until we see our ped. 

She asked if I knew how to recognize signs of dehydration.  Oh yes!  I have experienced that first hand many times over my pregnancies.  I told her I saw no signs of dehydration with Eliana.  She also recommended that I talk with a nutritionist.  She thought that sometimes recommendations are made for special needs children that don't take into account their special needs.  I called today and our case manager is going to set that up for us.

So for now, I am going to work on 5-6 feedings per day.  The therapist urged me to let go of a feeding if we got behind and it meant she needed a feeding very late in the night.  This will help me to get more sleep which would be so very nice!

I've noticed some changes over the last week since Eliana's surgery.

*Rubbing her face - She was doing this a lot!  Rubbing it on my shoulder when I held her, in her crib when she was laying on her stomach and even on her hands.  She doesn't do it at all anymore.  I think it was truly the tape/tube bothering her sweet little face and it was the only thing she could do to try to get it off.  I'm so glad that she doesn't have to deal with that any longer!

*Staring at her hands - This has been something she has LOVED doing for quite a while.  She has been quite mesmerized with her hands and it has been fun to watch this.  She isn't doing that now - and I miss it.  Not sure if it is gone - or just gone for now.

*Smiles - She is smiling, but not nearly as much or as often.  Her therapist today said that the effects of surgery can last for a couple of weeks.  I had told her that I didn't think Eliana was in pain, but she also isn't quite herself yet either.

*Sounds - She is making a few new consonant sounds.  I love hearing these!  I am hopeful that her hearing has improved and that speech will not be the struggle that eating has been for her.

*Rolling - Not doing this often at all.  She was rolling a lot prior to surgery.  The first couple of time she tried this after surgery, it hurt and she cried.  She can do it now, but doesn't nearly so often.  She also was a tummy sleeper, rolling onto her tummy even if I laid her on her back.  Now at night she rolls onto her side with one leg over - as close to being as your tummy without having it touch the bed - as you can get.

We had physical therapy today too.  The therapist commented that she was developing quite well and was pleased with her progress.  She played some games with her involving memory and she did quite well.  This is always encouraging.  I love hearing positive comments on what she is learning or doing.

I need to go.  This entry feels very "factual" and I hope it isn't dry and boring.  I'll try to add more photos soon, but for nowEliana is wanting attention before her last feeding of the day.  Eating from the bottle is going ... OK, not great.  A good day so far has been 5 ounces.  Still pretty far from our goal.  We are going to keep working on it, but I think it will be a long road though and not a short fix.  A road that I never thought I'd be walking and yet here I am walking it with a little girl that has captured my heart.  I am very thankful for the many others that have been along the path to encourage us especially when it was dark and difficult.  We greatly appreciate your continued prayers!

With love,

Leslie

 

A Better Day

Oops!  I didn't realize that my post from this morning didn't show up!  I was having problems with my computer again and tried multiple times to post this.  I was in a rush to get out the door to our appts. and thought it went through.

I'll copy in this mornings which thankfully I saved when I was having troubles.  I will write more later today when I'm able about our appointments which were both good and helpful.  Here is the first post.

Thank you dear friends for your prayers. Please keep them coming. Yesterday was a much better day and I have a list of things for which I'm thankful.

*Eliana did not spit up at all! I decreased her rate of feed and her amounts. I also spread out the feedings. Not sure if one or all of these things helped, but am glad nonetheless that things stayed in. The "full tummy" still seems to be an issue though. When I try to disconnect her tubing and close her button, often the formula just seems to pour out. Not a lot of fun at all!

*I spoke with the surgeon's nurse. She helped me with the fit of the "flatter" attachment so that the line doesn't stick up from her tummy like in the photo yesterday. I thought it didn't fit and am so glad I was wrong! I'm hoping this will help it not to be grabbed and also be easier to manage. As we talked, she told me several things that were different from what I'd been told in the hospital. (Like I was using the wrong attachment!) I kept saying that this was what they had told me. She asked if I'd like to come in the following day (today) and she would help me. I of course said yes! I started to choke up and cry and she said she knew that I had hoped this would be a panacea and that it wasn't turning out that way. Yes, I just keep hoping for that "magic" fix - but there probably isn't going to be one. It is just going to take time.

*A sweet friend came over and did art lessons with my children - outside - while I napped in a quiet house. The children were thrilled with the beautiful bird houses that they painted. (I'll try to post pictures later.) It was so nice to get some more sleep. All of us were being blessed at that time! Thank you Rebecca!

*Another dear friend brought us dinner. A delicious meal with so many different things from chicken to broccoli, fruit to bread and more. It was a sweet gesture that meant a lot to all of us. Thank you Ruthie!

*Sweet notes of encouragment here and in my email box. I loved the things that ya'll have shared and the verses too. I'm sorry that I haven't been able to write each person back, but please know that each of you ministers to my heart. A lack of response is only due to lack of time - or my computer being down - not from anything else. I am deeply thankful for the body of Christ and the way that it loves on us.

That's all I can think of at the moment. A dear friend on the FIAR boards noted that this is probably much harder on ME than on Eliana. She encouraged me to do more to take care of myself. As Moms, you all know how hard that is to do sometimes. You just do what needs to be done. I think she is right though. I know that the nap and the meal were things that helped me and refreshed both my spirit and my body.

Today we have a long time out. We will be meeting with the surgeon's nurse (who is a friend of our ped) and then with the feeding therapist a couple of hours later. I'm very hopeful that both will be times of help, wisdom and encouragment.

Please pray for wisdom in feeding Eliana. Pray that I would "hear" what I need to hear in order to help Eliana. Please pray that I would know how to better care for myself so that I have plenty to give to my family. As always, pray for health and healing for our sweet girl. Lastly, pray that I would listen to God, follow Him and keep my eyes fixed on Him so that through this trial His glory is evident.

With much love and gratitude,

Leslie

A Look at our Week

We don't have much planned and for that I'm thankful.  Though honestly, I'm not even able to plan much right now either.  I spend  hours a day in my room dealing with feedings.  I'm feeling discouraged after a hard week-end.  I'm not sure where to turn for help.

I called the ped on call yesterday and spoke with a nurse.  The dr said it was fine to cut back on the feed amounts.  That helps - and it was what I had started doing anyway.  I just need more help though.  I'm planning to phone the surgeon's nurse today to hopefully get more help.

One of the problems is that the tubing from her button sticks up a couple of inches.  I can't put clothing over it (like a onesie) to keep her hands away as I think it would disconnect the tubes or hurt her button.  I have a photo, but don't know how to download it.  (Will post it later if I can get some help.)  This keeps her laying in the crib to get her feeds.  I tried putting her upright in a high chair while the stomach settled and before removing the tube connector.  She pulled it while she was sitting there and made quite a mess. 

ETA:  Here are a couple of photos of the g-tube in use.  You can see how much the tubing sticks up and why it is a problem to use anywhere but the crib and also how convenient it is to grab!

This one is a close-up.

Please keep praying for us.  This is hard and I wish that someone could help me.  It feels like a lonely path right now.

Monday - Hoping to get some answers from the surgeon's nurse about an adaptor for her button so that the tubing can lie flat.  Maybe too some help with amounts and other problems.

Tuesday - Meeting with feeding therapist.  Hopeful here too for some help.

Wednesday - Dental appt for me.  I haven;t been in over a year.  Probably won't be a fun one.  Physical therapy.  Her movements have been far less since surgery.  She in rolling on her tummy again though not nearly as much.  She liked sleeping on her tummy but can't even do that now either due to the tube.  She is currently rolled to her side and over as much as she can.  Poor sweet baby is trying to adapt.

Thur & Fri - No plans.  Rebecca is probably going to be selling bracelets one of these days.  We are trying to get caught up with orders and are getting close.  Hope to send the rest out this week.

Thank you for your prayers and encouragment.  I greatly appreciate both.  Sorry that I can't be more encouraging this morning.  I need to go spend time in prayer.  Will update as I'm able.

With love,

Leslie

Trying new things ...

Well, I guess it is time to try to do some things differently to see what helps.  It really isn't my comfort zone - figuring these things out - but I really don't feel like I have a choice.  I have been given a lot of helpful suggestions on the T21 board.

I slowed her rate of feeds which means that they will take longer.  Less of a problem if she is asleep.  Just at this last feed she pulled the tube out  prior to the start of the feeding.  I guess it's better than during!  Her current rate for this feed is 230 which is down from 245.  Her rate prior to surgery was 215.  The nurses at the hospital seemed to think that I could run it over 30 minutes no matter the volume.  I'm not thinking that will work here.

I tried giving a longer time between feeds just to see if it gave her tummy more time to empty.  We went 4.5 hours (normally I go 3) and she refused the bottle.  She might have gotten a sip or two by mistake, but certainly did not want it at all!  *sigh* 

I really want her to be able to eat.  I wish it weren't going to be such a looooong process.  Feeding has taken up soooo many hours of my days for so many months now.  I long for the ease of nursing a child again.  I loved that - and appreciated it too. 

So hard to know what to do.  I wish my ped was here.  I've thought of calling the office to talk with another ped on call.  I just wish it were one that is familiar with Eliana and/or feeding tubes.  We'll see.

Gotta run.  The feed is up and Eliana is fussing.

Love,

Leslie

Another hard day ...

The day is almost over - and it's been a hard one.  Why is it that things start to go wrong just after leaving the hospital and not while you are there?  Probably because we are in and out so quickly.  I'm hoping things resolve soon, but really hating to get my hopes up to be honest.  This is probably not the most encouraging post.  Sorry about that, but it is where I am at the moment.

Here's what our day has looked like.

6am - Gave Eliana a feeding in her tube as she was asleep.  During this time our two youngest boys woke up - one of them very excited about a pirate class he was going to attend today.  After getting Eliana settled, I slept again for another 1.5 hours.

9am - Eliana refused the bottle.  I tried for about 15-20 minutes to get her to take it but she pulled away and even pulled it away from her mouth with her hand.  I was feeling so dejected at this point.  I hooked her up to the machine and decided to spend the time reading my Bible and praying.  I was asking for some encouragment.  As I was reading, Eliana somehow managed to get the part that attaches to her and the feeding bag unattached so the formula was spilling all over her and the bed.  What a mess!  Wasn't exactly the encouragment I was looking for either. 

12:15pm - Eliana had been awake for most of the last 3 hours and when I gave her the bottle she took about 5cc and then fell asleep.  She woke up at the end of the feeding and shortly after it finished as I was changing her diaper, she started to gag.  I held her upright thinking she might spit up.  She seemed to settle, but as soon as I layed her back down, she threw up. 

3:15pm - She took about 7cc at this feeding.  After she got the rest in the tube I let the tubing stay in hoping to help her tummy "decompress" a little as she has been leaking fluid from her tummy.  After waiting an hour, she was still leaking a LOT from her tummy when I tried to close up the button.  It just seems like her tummy is TOO full!

6:00pm - She sat at the table with us for dinner.  Probably only the second time we've done this.  IT was so nice being all together again.  She ate some rice cereal.  I tried to give her a bottle, but she wouldn't take it.  We then went upstairs to try to eat and she took 10cc.  This has been a horrible day for oral feeds!  I think that the new amounts are just not right for her!

I thought I'd  phone the physician on call at the hospital thinking I'd get one of the residents or fellows.  I got her surgeon.  I told him we were having problems with spitting up and a lot of leakage after her feeds.  I asked how long it should take after a feed before I could close her button.  He told me 5-10 minutes.  It has been an hour or more and then I'm still having troubles!  He agreed that perhaps she was getting too much food and thought I could try to spread the feedings back out like we had them before the surgery.  He also asked who was following up with us.  I told him her ped was, but that she is out of the country.  I don't think this type of follow-up is something that he typically deals with and that is why he is wanting to make sure that we are taken care of by someone.

Later in the evening, I notice Eliana is having more leakage around the site - including some blood.  It isn't bleeding, but there is definitely some blood in the mostly clear fluids.  *sigh*  I asked Catherine to come over and look at it (Roger was out for the evening) and she thought it looked like normal leakage.

10:30pm - I decided to delay the last feeding.  She seemed hungry and eager to take the bottle.  Unfortunately, she was also tired.  She ate about 20cc and conked out!  I tried waking her to no avail so I hooked her up to the tube.  After a short time, Christopher comes by and looks at her and tells me that he doesn't think it is working correctly.  He is right.  I'm not sure if I  had the connection too loose or what, but the formula has been feeding the bed.  Only about 20cc.  If it hadn't been such a long day already, I might laugh about it.  For now, it has just made me cry.

Please pray that our little girl would learn how to eat.  This is not "urgent" like being in heart-failure or needing open-heart surgery, but it is still vital.  Eating is such a big thing.  I'm not wishing for life to be more comfortable.  Well, maybe I am.  I just want to be able to feed my baby normally - through her mouth - not a hole in her stomach!  I know that some people have to walk this path for a long, long time.  I really don't want to though.

I was expecting things to be easier with the g-tube and so far that just isn't the case!  I do LOVE having the tube off of her face.  Rebecca commented to me that she liked nuzzling noses with Eliana.  I do too!  I'm also thankful that the tape is gone and her skin is having a chance to heal.  I'm still hopeful that things will improve, though honestly I don't see that it will be much different other than not having to put the tube down her nose.  It still takes the same amount of time - longer if I can't close her button.

Prayer requests:

• Eliana would learn to eat orally.


• Wisdom in knowing how much and how to feed her.


• That she would be able to take a feed and have it digested in the amount of time that is "right".


• That Eliana wouldn't throw up any more.  That if she is being overfed, that I would know how to cut back.


• That her incision site and button would heal well.  Would love for there to be no more leakage too!


• Patience.  You would think I'd have learned that lesson by now!


• Peace.


• Sleep.  I'm trying to do a better job of napping and hopefully it's helping.

I'm tired.  This load feels heavy today.  I know that God has promised to take it - and I am ready for that.  In the midst of this current struggle, I still have much for which to be thankful.  I am thankful that Eliana is healthy.  I am thankful that Eliana does not throw up at every feeding.  I am thankful the she is happy.  I am thankful that she has started rolling over again and it doesn't cause her pain.  I am thankful for my precious family.  I'm thankful for the many people that have prayed for Eliana and our family.  I am thankful to be a Child of God.

With love,

Leslie

A Hard Morning

I've been trying to post this for hours, but having problems with my computer.  I hope it will work this time.  I thankfully saved my entry as it got lost during trying to get connected.  Will post and add a small update at the end.

I'm feeling better now, but not long ago I had tears in my eyes. It's been a hard morning. I remember telling someone (feeding therapist?) at the hospital that the last time things went well for the first couple of days, then when we got home things began to go downhill.  It's nothing earthshattering - and nothing seems as hard as some of those days before heart surgery.  Sometimes though, things can just seem heavy.

It didn't help that my day started at 5:50am. I know for some of you that is no big deal. For this sleep deprived night owl, it was hard. I got to went to sleep later than I had intended as Eliana had a hard time falling to sleep. I gave her the 6am feeding and at the end of it, she threw up. Not a lot, but enough to get on her and bedding and obviously to wake her up. This is the first feeding that she has not tolerated. I'm not sure what happened or why it happened. I'm hoping/praying that it is a random thing and that it won't happen again.

After cleaning up Eliana and washing her bedding, we layed down and took a nice nap together. Her next feeding got started a little late. She wasn't interested - at all. She pulled back, grabbed at the bottle and pulled it away and just wouldn't eat. This is when gentle tears started falling down my face. I began to ponder all of the things for which learning to eat is important. It helps strengthen the muscles around her mouth so that she'll be able to keep her tongue in her mouth (a challenge for many children with Down syndrome) as well as affecting small motor skills (we use our mouth and tongue positioning often when doing these) to the most important - speech. Well, I say most important, but I would have to say that the primary thing though is still learning to eat! It's hard to imagine the struggles of trying to help a child learn to eat. Not just being picky - but not being able to eat even remotely enough to sustain life. I sometimes think that had Eliana been born in a different time or a different place that she would not have made it. I'm sure that there were others like this. I'm thankful that Eliana is here now.

We spent on and off about 40 minutes this morning trying to get her to take a bottle. I thought for about the first 15 minutes that we were going to have to write 0 down for the amount taken orally. It would be the first time she has refused the bottle since her surgery. I just didn't want to do that, so we kept on trying. She did finally take about 1.5 ounces. Thank you God. I just prayed and prayed for her as we worked on feeding.

Lastly, the surgical site where her button is located is starting to get red and a little "crusty". It is normal I think, but I'm hoping that it won't get infected or develop problems. Since Eliana has had such sensitive skin on her face, I'm hoping I can take good care of the site and that it heals well. She also has a second surgical site where they had to make the incision. It will take about 2 weeks to heal and is currently covered with steri-strips. I basically have to keep it dry so that it doesn't open up. They did not use stitches but instead used some type of "super glue" to hold her skin together. This is also how they closed her up after her heart surgery. Of course that site wasn't beside something that spewed liquid. So far, it hasn't been too bad.

Sorry for the less than hopeful post this morning. It just feels like a lot at the moment. I'm hoping to get another nap. I used the 6am feeding time to pray, but I'm not sure it's the best time for me as I'm just not the most alert in the morning. Maybe with time I'll learn, but I can still use more time with God to refresh my weary soul and to hand over the load that I'm carrying.

Would you please pray that Eliana would learn to eat? I want this for her so badly and yet it is really out of my control. I try not to feel guilt or doubts about things I "could have" done. (Like using this haberman feeder earlier when a couple of friends suggested it. I did ask the therapists who said we didn't need it and just listened. It's hard to know sometimes when to do things on your own.) It really isn't useful to ponder the "what ifs" but instead to deal with "what is". I often say "it is what it is" in regards to things that I wish were different, but that I really can't change. This is one of those. I just keep praying that we'll be able to do what is best for Eliana - all of us that are caring for her - and that is really I can ask.

Thank you for your prayers.

With love,

Leslie

ETA:  Talked with a gal from the pediatrician's office this morning.  She had called while I was in the hospital.  I didn't know who it was and had tried calling back once and didn't find the right person.  Anyway, Dr. L had left a large note for her to check on Eliana.  I joked with her that Eliana was one of her favorites.  She replied that Eliana was the only one that had a large note left for her.  She also shared how much she thought of Dr L.  No surprise here as we think she is great!  I do think Eliana is special to her - but I also think that it's because Eliana has needed someone that feels this way about her.  My other children haven't and I never felt slighted either.  Eliana has a wonderful advocate in her pediatrician.

Day 3 ... and we are home!

It's late.  The end of a long day.  I am ready to go to sleep, but wanted to write a quick update.  We had another busy day - and are thankfully home!  We saw the residents on the early rounds (just before 7am).  They thought Eliana looked well and were pleased with how she is tolerating her feeds.  She took 4 ounces at 6am through the g-tube as she was asleep. 

I fed her at 9am, noon and 3pm.  She took 1-2 ounces each time.  She slept through the 6pm and then ate some at the last feeding of the day.  (About 40ml or 1.3 ounces.)  Overall, it was a good day for her.  I am hoping that she will continue to improve with her feedings.

Her surgeon came by about 9am while the feeding therapist was there.  He asked if we wanted to go home.  I told him that I thought Eliana was doing great from a health standpoint and that I'd only want to stay if it meant she could get more feeding therapy to help her eating.  He seemed fine with that.  I talked with the feeding therapist about this and she didn't think staying would help.  She said we were doing everything right and that following up next week with our therapist would be great.  So, we were good to go home!

I had the same awesome nurse again today that I had yesterday.  What a sweet blessing to have two great nurses on back to back days and nights.  The day nurse was great about helping me to learn how to do the g-tube.  She is encouraging and positive.  Really great.  I'm planning to write letters about both of them.

It was so good to get home - and get lots of hugs.  My parents left shortly after we came home.  I'm glad that they were able to come and spend time with our children.  It was incredibly helpful to have them here.  I know that the children had fun with them too!

I'm going to cut this short as I'm so very exhausted and I'm sure my writing shows it!!!  I know that 6am will roll around really early too.  I'll post more tomorrow - with some more photos too.  Here's my favorite of a happy little girl ready to go home! 

I love seeing her face without the tube!  This is just the second day in the last 5.5 months that she hasn't had a tube on her face.  It's been since Feb 5th since she was free from the tube.  Thank you for your prayers and encouragment.  As God brings it to mind, please keep praying that our little girl would improve more and more on this eating!

With love,

Leslie

Day 2 at Duke for G-tube

The days always seem so full at the hospital.  So much information, people in and out, so little sleep and the time seems to fly by during the day.  The nights can be slower.  I was thankful last night for a wonderful nurse named Lisa.  She visited with me several times and we talked.  Sometimes it is just nice to have someone to talk to. 

I also spent some time recording prayer requests in the new journal that Rebecca made me.  I went back and wrote in the requests that I had made prior to Eliana's surgery and then wrote in the answers for those that I could.  What a sweet thing to see sooo many of the specific prayers answered in the way that we had wanted.  I also added in the newest requests and will plan to record answers there as well.  I think having both together - the requests and the answers - will be a sweet testimony of God's goodness to us through all of this.

Today started early - about 6:20am - with the rounding doctors.  I don't remember a lot of the conversation now, though I thought I was pretty alert then (amazing given that they woke me up and I am NOT a morning person).  They did tell me of Eliana's new feeding schedule.  She was to receive 10cc of Pedialyte at 6:45am through the g-tube to see how she tolerated it.  This went fine.  At 9:30 she was to get 20cc of Pedialyte.  Because she was fussy, it all came back out of her tummy and tube.  At 12:30 she moved up to an ounce (30cc) of pedialyte.  All went fine. 

At 3pm a couple of the feeding therapists came by.  They brought a haberman bottle for us to try.  One of them had suggested this yesterday when I saw her.  (We haven't tried this before as it wasn't thought to be useful.  She had seen it help another child with Down syndrome recently and thought it might be helpful for Eliana).  I'm up for trying it!  She commented that we got a referral for feeding therapy before we had even left the PACU so they must really want us to have it!  I was glad to hear this as it is important to me as well.

When Eliana saw the bottle she seemed excited and moved her hands up to it.  This used to be her signal to me that she was ready to eat.  She did it once last week and it was then that I realized that she hadn't been doing it anymore.  It really seems to help her to be focused.  It took her a bit to get going, but she did get to work (off and on) and take an ounce of formula.  This was all that was allowed at this time.  They both thought she might have taken more if allowed.  This was her first food since Monday night at 11:30pm.

The feeding schedule for the rest of the day is to try 2 ounces at 6pm and 3 ounces at 9pm.  We are skipping the midnight and 3am feeding.  She'll get 4 ounces at 6am and then 5 ounces at 9am.  The goal is to get her to full feeds before leaving the hospital.  We are going to change her schedule from 7 feeds to 6 and up the amount from 4 ounces to 5 ounces.  The nutritionist didn't feel she was getting enough liquid with her current volumes. 

After the 3pm feeding I called and spoke with Eliana's feeding therapist.  While we were talking the nurse came in and told me that the surgeon wanted her to take the rest of her feeds by g-tube and none orally.  I said OK, but then as I was telling the therapist, I felt like I didn't want to do this.  I know that the goal is to test the g-tube and get us out of here.  I think it may be more important though to get her eating as much as possible orally AND get assistance with feeding while we are here.  That is one of the upsides to being the the hospital is daily feeding therapy as opposed to once per week.  Eliana's therapist did agree that it was important to give her food orally.

I told the nurse that I wanted to do this and she was comfortable with it.  I had a great day nurse today too named Amber.  As I had gotten her bottle ready for the 6pm feeding, it was really later and closer to 6:30.  I was pleasantly surprised to see one of the feeding therapists come again to help with her feeding.  She took an ounce by bottle and we gave the second ounce in her g-tube.  At 9:30, the feeding was similar with a little more than an ounce via bottle and two ounces in the g-tube.  So far she seems to be tolerating it all well.  It will be interesting to see how she does with 5 ounces.  That seems like a big increase to me.

Other news - her incision site seems to be sore.  It hurts to push on her "button" which is necessary when using it.  This has decreased as the day has gone on.  She also has twice tried to roll onto her tummy and cried both times.  This is not her usual so I'm guessing she is still hurting.

Visitors - Some of my family visited today and it was great having them here.  Roger and Rebecca came up in the morning.  In the afternoon, Roger came up with Rebecca, Joshua and Isaiah.  The boys like getting under the crib as it looks like a cage, watching the tram that runs around the hospital and going to get snacks in the cafeteria.  (Rebecca liked the last two as well.)  Isaiah brought a bright and colorful picture that he had painted.  The children all liked talking with Eliana and trying to get her to smile.  We are seeing more smiles today, but still not as much as is normal for her.

In the evening, Roger and my Mom came to visit.  It was great having my family here - though I'm missing the ones that didn't come too.  Probably tomorrow though I'll see them as it looks like we will be going home.

ETA:  Someone asked who the man was - it's my dh, Roger, with Eliana.

Eliana's surgeon came by briefly and talked with us.  He just wants us to get her up to full feeds before going home.  I'm looking forward to going home, though part of me wonders if staying here a little longer might help with feeding.  I really don't know.  I wish there were some way to have a handle on that.

One of the PAs came by today.  I had talked with her yesterday about the little girl (heart baby) and wondered how she was doing.  She checked on her while doing rounds and let me know that she had come through surgery well!  Praise God!  I'm also really thankful that this gal would do this for me!  I have looked for her parents a couple of times but haven't found them.  I'm trusting that if God wants us to meet again that He will work out the details.  As it is, I can still pray for them.

I also stopped by today to see the lactation consultants that helped me so very much in the first couple of months.  (Many hours meeting and in phone calls - really a lot of time!  One of them went so far above the call of duty with me for which I am so grateful.)  I was able to see both of the gals that helped me.  They both mentioned to me that they had been talking about me that very day.  They thought it was quite ironic to see me show up. 

It was funny, but just being there brought tears to my eyes.  I didn't realize what an emotional issue this still is for me.  I just didn't expect it.  I told them both that today I was reflecting on how much I hated giving Eliana a bottle at first.  I really didn't want to do it at all.  Now though I long to see my little girl drinking from a bottle.  Ironic, isn't it?  How circumstances can change and make you long for the thing that you once didn't like at all.   It was less to me about the bottle and more about wanting to nurse.  I think though that the bottle seemed to represent failure to me.  I know that I tried my hardest - but I still failed.  It was a very hard thing to give up.  It was the start of many changes to the way that I mother and I fought it as best I could.  It wasn't something I had thought about in awhile, but just being back in that space seemed to bring back the emotions.  I'm having to learn things all over again.  I think I've learned more about making choices, and dealing with things when the choices are made for you.  I've learned more about being empathetic towards others.  I've learned much about the human body, medical interventions and the medical system.  I've learned more about the power of prayer, love and encouragment.  I've learned more about trusting God and resting in Him.  I still have much more to learn - and am confident that I will have many opportunities to do this.

Just a couple more thoughts before I close.  I was reflecting in my quiet time on how our purpose is to bring glory to God.  I thought of Eliana's short little life and the impact of it.  Of the number of believers that have gone to their knees because of her.  I'm teary now just thinking about it.  God is using this precious little girl to make a difference - and  not just in my life or the life of my family and friends.  She is bringing Him glory.  Tonight my Mom shared with me a couple of quotes from her Bible study talking about our purpose in life and how God created each of us for a specific purpose.  How He perfectly knit us together in our mother's womb.  I commented that those types of passages take on new meaning when you look at them in the context of someone that the world views as less than perfect.  Some even view this little life as something that could have been prevented and possibly shouldn't have even happened.  God knew what He was doing.  He lovingly made Eliana just like as she is - to be used for His glory.  She is not a mistake, but a child created in His very image.  What a God we serve that can take each of us - imperfect in so many ways - and use us for His good.

He loves you deeply!

Leslie

PS  Pictures coming.  Just going to upload them.

In the hospital room now

It's been a busy day and things are calm now and I wanted to take a moment to write an update.  It has been a very good day and we have much to be thankful for.  I have felt a calm about this surgery.  I know that God has given us a peace and also after her experience with heart surgery this just doesn't feel nearly as hard. 

A little after 9am, the surgeon came out to talk with us.  He is so very nice ,friendly and encouraging.  He told us that all went well.  The new g-tube will not be used until tomorrow to give it time to drain.  We thought that earlier someone had told us that she would have an NG again for the first day.  Dr. Rice told us that she wouldn't.  No more NG ever for Eliana!  (His words!)  The tube that she has now is good only for a year.  Dr. Rice said that he hopes she won't even need it that long!  :-)  Me too!  He talked with us some about the healing of the site.  Told us he expected us to be here a couple of days.  He recommended that we meet with a nutritionist, speech and OT people while we are here.  I'm fuzzy on some of the rest of what we discussed, but hopefully whatever I need will come back to me.  :-)  I need to take notes in my notebook.

About 9:20am we were told we could go see Eliana.  She was a little fussy when we saw her.  She was also having some trouble breathing.  This was due to a little too much of a pain med.  As her skin turned "dusky" from lack of oxygen, the nurses were trying to stimulate her to get the oxygen flowing again.  She also had an oxygen mask that they were keeping close to her face.  The photo below is soon after Eliana came out of surgery.

She had tubes again like the last time, but not nearly as many!  I took a peek at her new "button".  Here is what it looks like.  The surgical incision is in the center of her abdomen and the g-tube is on the left side above her stomach.  She won't have the tube coming out of it unless she is feedings.  It will close up and be fairly low in terms of how much it sticks up. 

This is a photo of Eliana and I with Dr Rice.

We remained in this room for a while until she was stabilized and there was a room ready upstairs in the hospital.  We were there until about 12:00.  I held Eliana in a rocker most of the time.  SHe was either awake or a little fussy.  There was one very small boy (about 1 or 1.5yo) there with none of his family.  His mom felt sick and had to leave.  Please say a prayer for this precious little one and his mom.  It was so hard to hear him cry.

We were taken via wheelchair to Eliana's room.  First some vitals were taken.  She continued the pattern of sleep and fussing, so I held her.  This seemed to comfort her and keep her happy most of the time.  One of the pediatric surgeons came in and said we were scheduled to see a lot of folks.  She wasn't sure if they would be by today or tomorrow.  Since it is now 3:45, I'm guessing that tomorrow will be a busy day!

Eliana won't be eating today.  She can't have anything in her stomach.  She is getting an IV to keep her hydrated.  She just had her first pain meds since surgery - tylenol.  Isn't that amazing?  Our sweet baby girl is a tough little fighter. 

Praises for today

• Successful surgery!


• Only one stick to get the IV in this time!  She has a cute little pink bandage around her left hand where the IV is attached.  The anesthesiologist said that to be fair that this stick was much easier than the one needed for cardiac surgery.  They could use any vein today but for cardiac care they needed a big one that could be used for a longer period of time.


• Wonderful surgeon, anesthesiologists and nurses in the surgical area.  I commented to one of the nurses about how nice Dr. Rice was and she praised him very highly.  She said that all of them would do anything for him - because they knew that he would do the same for them.  He really has a great personality for a pediatric surgeon!  Everyone in there though was kind and helpful in answering our questions.  We were well taken care of.


• Our sweet friend Rebecca who was with us during surgery and brought us lunch too.  It is a comfort to have support - and someone to help take photos as she has a great eye.


• Sleep for Eliana.  I'm glad she is able to sleep through all of this as she is clearly not feeling well when she does wake up.  I'm told that it will take about 24 hours for the effects of general anesthesia to wear off.


• My thoughtful little daughter.  She packed a goodie bag for me filled with a prayer journal that she made, book to read, puzzle book, snacks - one salty and one sweet, a pencil and pencil sharpener, throat lozenges (my throat was dry yesterday) and lotion.  She is an incredibly sweet and generous girl.


• 


• Many wonderful friends and family that are supporting and praying for all of us!

A Few Funnies

Eliana's hair is once again the subject of conversation.  Lots and lots of comments on the "waterspout" or "Pebbles" look and her bow.  I saw the anesthesiologist chuckle about her hair as she caught a glimpse of it standing up as she was coming to the room.  Later in the OR, she was stroking her hair and commented that she would have done this if she had had a girl.  Then she said that her boys didn't really like the style, especially her 10yo.  That just made me laugh.  The folks in the OR were all kind and seemed to be light-hearted and happy.

Admission questions.  A nurse was asking some questions and one was "Has she had any feeding troubles?"  I paused and then the nurse replied, "Dumb question, huh?".  I just had to chuckle.

I was asking the anesthesiologist some questions and one of them was "when could she roll onto her tummy?"  She asked if Eliana was a tummy sleeper and I confirmed that to be true.  I said that she did this even in her sleep.  Sometimes I will see her shoot her legs straight up into the air then flop them over to start her roll.  The anesthesiologist said that it was funny I should mention this.  When Eliana was coming out of surgery, she noted that she was very still.  Her  head was still,  her body was still, her eyes weren't yet opened and then her legs shot up into the air.  It is something that she does all the time - it is cute and it makes me laugh!

Prayer Requests

• Eliana's pain would be minimal and well-managed.  I'm also praying that her recovery would be smooth and without complication


• That the G-tube would work as it is supposed to and that Eliana would tolerate it.  She has not had problems with reflux so we are hopeful that she won't have any problems with the g-tube either.


• Healing for her incision site.  I know that there can be "granulation" (not sure exactly what that is, but will probably find out) at the site.  Dr Rice said that it would happen less if there was less movement when she is plugged in being fed.  Guess we'll need to figure out a new way to do this as she likes to roll onto her tummy when she is being fed in bed (even when she is asleep).  We may need to return in a week or so to have the site area cauterized (?) if the granulation is occuring.  We'll deal with that when we need to.  (I'm not going to be borrowing any worries!)


• Eliana's smile.  She has not  had one since surgery - and I miss it.  I'm hoping that it will be back tomorrow when she is feeling a little bit better.  I know that this is normal and I'm not worried - just looking forward to that smile that lights up a room!


• Meeting with the nutritionist - that she/he would have wisdom on the best  plan for feeding Eliana.  Same with the speech/OT person we will be seeing.


• Feeding - praying that Eliana would gain skills quickly due ot the removal of the NG tube.  I'm  hoping that this will really be a turning point for her.


• Prayers for the little heart baby I met today and her parents.  I haven't been able to get an update yet, though I'm hoping I'll get one from a rounding doctor or that I'll be able to find the parents in the NICU waiting room.

I should probably close as I'm very tired.  Since Eliana is napping and there is nobody here wanting to poke her or ask questions, I should take this as a good time to nap.

I appreciate so very much your faithful prayers and notes of encouragment to me and my family!  I can't really explain how very much it means to me!  My heart is full and I am feeling much hope.

With love,

Leslie

PS  I realize that I need to get behind the camera and take a few photos myself so that Roger is in some of the pictures.  I haven't had my hands off of our sweet little girl much today.