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There are so many things we take for granted. Skills that are mastered by babies every day without any special help or intervention - they just learn on their own. I have loved watching my babies learn and grow but never really thought about all that went into each new skill that they mastered. I did get a new perspective when my friend Catherine's son was born with Down syndrome. I learned a lot from watching all that they did to teach and help him learn. Never did I imagine that one day it would be my turn. I didn't really want a turn, but here it is - my turn - nonetheless.
Hmmm ... where to start on what has been going on? Probably feeding since that is the big one! We are still using the feeding tube. Still trying to bottle feed as well, but she isn't really taking in much more than she was before - even with not doing full feedings twice in a row. (The cardiologist said that we could try only bottle feeding for 2 feedings per day to see if hunger helped her to eat more.) I really don't think hunger is going to drive her. There is more going on that needs to be addressed. I'm not sure how - but am hopeful that with some help we will figure this out.
Today I met with Eliana's case manager (she manages therapy services in the home until age 3) and an occupational therapist (OT) with that agency. The OT did an evaluation of Eliana and agreed that she needed specialized feeding therapy. I have hopes of meeting with someone that is in a local hospital which is outside of the coverage of the therapy services in the "natural environment". (One of Catherine's therapists that has experience that would help Eliana.) The OT thought that this was reasonable since feeding is a very specific skill and she needs someone trained to help her. Someone that understands the issues of cardiac, feeding tubes and Down syndrom. He was very supportive and said he is going to write his report to that effect. We'll have to wait and see if this is approved to have them cover therapy outside of the home. Now, I'd MUCH rather have someone come here, but if the people that are most experienced are not able to do that, then we will go to them! (Incidentally two feeding therapists that I've spoken with think that hunger-driven feedings are not the way to go with Eliana. I think I'm finding it hard to trust my Mom instincts sometimes because so much is new to me - and there are so many "experts" involved in her care. It's affirming to know that my instincts are on target.)
The OT observed some of her skills, asked questions and wanted to watch a feeding. Eliana was cooperative for awhile then started getting tired. She ate 5cc (1/6 of an ounce) and then fell fast asleep.
Next came our session with our Physical Therapist (PT). She works in helping Eliana to strengthen various muscles. Babies with Down syndrome have hypotonia which is a low muscle tone all over their bodies. This can make it harder to many things - probably most things. This is why they need to learn new positions to strengthen muscles that may not be being used properly. For example, often when Eliana is relaxed her arms will be out to her sides - not into to her body like most infants. She has weaker shoulder muscles which we are working to help strengthen which will make it easier for her to reach and grab things. (I hope some of this is helpful. I know that for many Down syndrome is new - and a lot of unknowns. There is a lot to learn.)
Today we were working on rolling. I told her PT that she almost rolled over today. She got her legs all the way around, but couldn't get her hands out of the way. We worked on a couple of exercises to help teach her how to do this and strengthen the muscles needed to do this in her legs and shoulders. Towards the end of her session while we were talking and just letting her play - she rolled over!!! We were so excited to see this! 
Eliana's milestones are really going to be celebrated I think.
We also introduced a new toy - one with toys that dangled to try to get her to reach up. She learned this really quickly. I had pulled this toy out of the donation pile - it's one of Christopher's toys. The PT told me not to get rid of it as it is perfect for Eliana. She learned this quickly too. Her PT even commented that she thought Eliana had learned this skill quicker than anyone she had seen. I so appreciated this encouragment.
The PT left an evaluation that she had done a couple of weeks ago. I was reading it and all was fine until I got to a part at the end in which Eliana's motor skills were measured on some scale as 2 month 1 week when she was 4 mo and 2 weeks. This just made me sad. I hate to think that she is behind already. I know that is part of it - that skills will come only more slowly than the average child. The last line of the report was encouraging though. "She is still recovering from cardiac surgery and her gross motor skills will probably accelerate." Yes that is my hope as well.
I've been practicing some of the games and exercises with Eliana. It's really just a more intentional way of playing with her. I can see her copying and learning some of those things. She is learning - my precious little girl.
Eliana and I also went out tonight. This is one of our first outings. We haven't been many other places that weren't medically related. I told someone the other day that I thought that Eliana in her first 4 months of life has had more medical appointments than ALL of my other children in their entire lives - COMBINED! We don't visit the doctor often, though Eliana has more than made up for that.
Since her cardiologist said we could start to go out - we did. Roger's work had a family day event. We wanted to introduce Eliana as the people there have been so supportive and encouraging to our family! Really, really wonderful in so many ways both large and small. What fun it was to be there and to have so many people excited about seeing our sweet girl. She was held and loved on and enjoyed. I love seeing other people enjoy our little girl. I think that has always warmed my heart - but it touches it more deeply now. I sometimes wonder how she will be received by others - so far, we have been blessed tremendously by the response of others to her. I love that people think she is cute - even cuter than her photos some commented to me tonight.
She is asleep at the moment after her feeding. (We tried a bottle while we were out, but she only took 1/2 ounce.) She has had a very full day. It's been a good day.
With love,
Leslie
Apparently I have more to learn today about not getting irritated. I posted this - or so I thought - even choosing some different colors for the fonts. Imagine my surprise to see that this post was blank - just a title. Not sure what happened, but I'll try again.
Earlier today Eliana was laying on my bed and Daniel was playing with her. When I needed to move her I told him that I needed to get her. Here is the conversation that followed.
Daniel: "No move Eliana. She my baby."
Me: "No, she's my baby."
Heard from another room - my 5yo jumps in: "She's everybody's baby!"
Daniel insisting on his point: "No, she my baby!"
Me wondering asks: "Well, who is my baby?"
Daniel thinks it over for a minute and then responds: "You go buy another baby."
This made me chuckle. I thought he might say that he was my baby - not that I needed to get another one. Oh, the minds of children are so funny!
Hope you enjoy a laugh. I've posted a couple of entries today and one last night if you are just now catching up. I hope to post more later on therapy updates.
With love,
Leslie
Today my little girl is 5 months old. Can it really be? In some ways it seems much much longer than that. My life has been turned upside down for what seems to be ages. Sometimes it feels like life has just gone on around me while I've been here struggling. The day of her birth was traumatic for me unlike what I had anticipated and hoped the day would be like. And yet her smile is new, sweet and fresh. She is learning new things all the time. She has captured my heart!
Just one month ago my little girl was having her open heart surgery. I was holding onto her little bow and longing to hold her. It was a long morning of waiting, made sweeter by the presence of friends with us. It was a day of much prayer and praise. Thank you God for all of the work you did!
I like looking back - especially with my babies and children - marking milestones. Looking back with Eliana is harder. Probably a lot of things with her will be harder - though maybe not. I know that the joy is sweet just like with my other children. I know that I love her deeply and cannot imagine life without her. I'm thankful for my little girl.
I'm thankful for those that cared for my daughter a month ago - the anesthesiologists, the surgeon, the nurses. I'm thankful for my family and friends that have cared for all of us. I'm trying to keep my focus on all that I have to be thankful for each day. It's a good habit. At the moment I'm trying not to be irritated with bickering children (that I won't name) and that the "N" key and space bar on this computer don't work very well. (I wish it were a different letter other than those that are used so often - Q and Z would have been my choices.)
Going to close as this is getting hard to type. I'm going to try to figure out how to respond to posts that ya'll leave for me. I appreciate each and every note.
Love,
Leslie
Well, I meant to update earlier, but my 2yo decided that taking the keys off of the laptop seemed like a fun thing to do. 
Not sure why he did it, but it made it hard to use and I don't get to the downstairs computer too often these days. (Kind of reminded me of the day of Eliana's surgery when the G and H keys weren't working. A challenge then - and many more keys are not working now.)
Eliana had an appointment with her cardiologist yesterday. It's our first time seeing him since she left the hospital. Thankfully there were no additional tests or bloodwork yesterday! She weighed in at 13 pounds and 3 ounces. That's up a pound in the last 2.5 weeks.
Dr. Carboni checked her heart and thought she was doing well. His concern was her feeding too. The number of calories she is consuming per day is not high enough to continue to gain weight. I shared with him the proposed idea from the feeding therapist of going "cold turkey" with Eliana's feedings during the day using a bottle to feed. This would lead her feeding to be hunger driven. He said "No". He didn't think that this was a good plan for Eliana. I have to concur. I thought I'd do it if it really was best - but it didn't seem like a good plan. It really is hard to know what is best as I've already had to do many things for Eliana that were/are outside of my comfort zone. Isn't that what Moms do though? Whatever is necessary for their child!
He said that even though I've seen changes in Eliana that it will typically take at least a month to get over the effects of heart failure in terms of her endurance. Makes sense doesn't it?! We are almost at that marker, though I'm not expecting any sudden changes now. It helps explain why things have been hard - and slow. I guess I did expect drastic changes with feeding - especially when she ate 3 ounces just a day after her surgery. He told me that he wasn't surprised with the struggle and had expected it. He obviously hadn't shared that before which is fine too. I think with the heart surgery looming I probably didn't need to know.
Dr Carboni also told me that the feeding tube may have "doomed her" in the eating area. I can see that, but we also agreed that we really had no other choice. When she went into heart failure she just wasn't able to eat. She needed the weight and additional time for a successful heart surgery. I don't have any guilt about the choice of the feeding tube. I truly felt it was the only - and best - option at that time.
So, we are to increase her formula to 27 cal/oz (adding more powdered formula to the ready to feed) and increase her feedings to 120cc (4 ounces). Adding other things weren't an option due to the small size of her feeding tube. We may skip 2 feedings back to back either in the morning or afternoon and allow her to feed from the bottle as much as she wants. She is not to go more than 6 hours without eating. (I got all of this in writing which was really nice. It's added to my notebook which is almost FULL! My notebook has written records of all that she has eaten for the last 4 months, all meds taken, procedures performed, meetings with doctors, amts of pumped milk and more.)
I tried the new routine this morning. She was tube fed at 6am while she slept. She was awake around 8am and I fed her a bottle about 9am. She took 2 ounces (half of the recommending feeding). She fell asleep about 11:30. She woke up and ate about 12:30 and took in 40cc (less than 1.5 ounces). Next feeding was at 3pm when she took 17cc (just over .5 ounce) and then I gave her a full feeding with the tube. We'll keep trying this, but it looks like it will be a long road!
Dr Carboni talked with me about the possibility of a G-tube if feedings continue to be a struggle. She needs to be at least 6 weeks out from heart surgery before that would even be a possibility. The NG-tube (what we have now) is not a good long-term option. The G-tube would be a surgical procedure to put a tube in directly to her stomach. This would allow continuous feedings at night. (Can't do that with this tube as it's placement can slip.) It would also get the tube out of her nose/esophagus. I can't imagine that it feels good and sometimes wonder if it's irritating to her. Especially when she takes her tube out often.
Did I mention that last night I was carrying Eliana and walked into the kitchen. I saw one of her feeding tubes - with tape attached - on the floor. I wondered which little boy had taken one from the trashcan - and why. Silly me - Eliana had taken it completely out with none of us noticing! How does she do that? It's 16 inches long! We were all there in the same area too! She is good at that removal. Placement again was hard like the other night. Not sure what is going on and wish I had thought to ask her cardiologist. I can always phone him - he did make sure to tell me that at the appointment. He has been a wonderful doctor!
Oh, we are officially medicine free now too! I'm to watch for signs that she may still need it - rapid breathing would be one like when she was in heart failure.
Our next appt with Dr Carboni is in 4 weeks. That's a long time for us. He has said that we will begin moving away from heart being the focus and into pediatrics. Though clearly Eliana will be seeing a cardiologist for the rest of her life - just not as often.
I think that's all for now. Here are some specifics we would love prayer for:
1. Feeding - That's really the big focus now. She has a loooooong way to go before she is eating enough on her own. A really long way to go. Pray that she would learn to eat more at a feeding. Pray for wisdom for us and her care providers as to the best methods to use in getting her to eat.
2. Health - That Eliana would continue to stay in good health. Dr Carboni said that it would be fine for us to start getting out. It's been 5 months and Eliana and I really haven't been anywhere - except lots and lots of doctor appointments. Pray that we would make wise choices as to where we go with her.
3. Family - Pray that we would begin working on some good routines and uses of our time. Our last 5 months - and even a lot of the last year - has been not the norm for us. We need to find a new normal. I need to work on more consistency in chores, school work, play time and individual time with the children. We also need to make choices about commitments we make and want to be wise about how much outside of the home we can commit to doing. I'm still not really ready to do much of anything yet. I'm just emotionally not ready to do much of anything at all right now.
4. Time with God - Pray for our spiritual time to always be a priority. Pray that God would continue to teach us, shape us and make us more like Him.
5. Feeding Tube - This is a small thing. Could you pray that Eliana's feeding tube would stay in until we get a shipment of new tubes? We are out of the type that she uses. I ordered more a week ago, but they sent the wrong size. (Even after a long conversation about the right size, style and type that we need.) The ones that they sent are too big for her. It just isn't an option in my mind to use them. The ones we need are on back-order. Hopefully they will be here by the end of the week. (Wish I had known this yesterday so we could have tried getting one while at Duke. Oh well.)
It's still hard to figure things out some days. I can't really explain it - though perhaps if you have been through some sort of trial you may understand that moving on and finding a new normal is a challenge. I know God will lead us to it - and that it can and will be a good place with Him. This journey is not a place I've chosen to go, but know that much good has come and will continue to come from having been there.
I remain abundantly thankful for so many, many things - my precious daughter who is fighting so hard, my wonderful family and friends, my sweet Saviour. I do have much to be thankful for each and every day.
With much love,
Leslie
Hi All,
I want to share about Mother's Day - it was great - but want to upload some photos first. Will try to do that by tomorrow.
Tomorrow (Monday) Eliana has an appointment with her cardiologist. This will be his first time seeing her since she was released from the hospital. I'm not sure what tomorrow's visit entails in terms of testing. I would love prayers that all would go well for her. I'm guessing she'll have to have blood drawn and historically that hasn't been an easy one for her at all! I have no idea if any other tests are scheduled.
I'm going to be talking with him about Eliana's feeding. She isn't doing all that well. The feeding therapist that we have met with wants to have us eliminate her tube feedings during the day. She is hoping that if hunger is driving Eliana that she will eat better from the bottle. Right now she eats about 1/4 from the bottle and the rest from the feeding tube. That's a lot of ground to make up. We will be supplementing with the feeding tube at night to make up for what she is missing during the day.
Please pray for wisdom for our cardiologist in knowing what is best for Eliana in regards to feeding. We will need to figure out if this is alright for her. Also if we cut back on her tube feedings, we will need to know how much she has to have per day in terms of calories and also in terms of fluid. The balance of fluid has been critical for her with her heart issues. I'm not sure how this changes with her heart repair.
The feeding therapist feels that we are at a critical place. If we wait she is concerned that it will make it harder and harder for Eliana to eat on her own. She said problems could last for years. (Years??? I didn't want to hear that!) This is one of those times that I just have to trust that what they are telling me is best. I'm trusting that God is leading us to the people that we need to see and that the advice/counsel we are receiving is best for Eliana. Letting go and trusting can be hard, but I really don't have any other choice. It doesn't do any good to worry, so I'm trying to keep on trusting!
I'm also still trying to figure out the best bottles to use for Eliana. She is compressing the one we are currently using which obviously is less than ideal. I'm hoping to see an OT (occupational therapist) while we are at Duke tomorrow. She agreed that I could page her even though she is only supposed to see "in-patients". She was helpful to us when we've been in the hospital the last two times. Pleae pray for wisdom here too! I know that I may make mistakes in this area - and probably many others too - but I'm just trying to do the best I can and pray for wisdom for all of us that are caring for Eliana.
I'll post more when I know something. It will probably be late tomorrow. Have I mentioned how much I love your comments? I truly appreciate each and every one of them. Ya'll are a blessing to me and I often read them over and over again. I am thankful for you dear friends!
With love,
Leslie
Today has been a better day. Thank you all for your prayers, notes of encouragment and phone calls. I am so very blessed to have so much support! I am very thankful too!
As I was talking with God today, He reminded me to count my blessings. What a good idea. There are far too many to list here, but I thought I'd share some with ya'll.
1. A God that loves me and is faithful to me. He carries me through trials. He is true, good and pure.
2. A delightful family - both immediate and extended.
3. Friends - in real life, across the miles and many that I've only met via computer - that have loved, encouraged and supported me through so much.
4. Health. I'm so very thankful that Eliana hasn't gotten sick!!! Even when our family went through 2 bouts of illness this year she remained healthy. I hope this trend will continue!
5. A clean house. I don't know about you, but it doesn't happen often enough over here. Seems like if I can get one room clean, there is a big mess being made in another one - or several other ones. This week some friends paid for a cleaning service to clean our home - top to bottom. It was wonderful. The gals did a super job! It was a very thoughtful and much appreciated gift!
6. Meals - We continue to receive meals from friends. What a blessing to have this provided for us. So much of my time is spent trying to feed and care for Eliana and it's nice not to have to deal with food planning and prep.
7. Laughter - Eliana sweet laugh is a treat. Just yesterday a friend called after reading my last blog entry to encourage me. She prayed with me and one of the things she prayed was that Eliana would laugh again. Last night when my family was gone, Eliana and I went for a walk. I carried her in my arms and talked with her. At one point she started to laugh. What a precious sound to my ears - and what a sweet answer to prayer!
8. Prayers - We have had so many prayers lifted for us and so many answered. How could I be anything but thankful! Tonight Eliana pulled out her tube ... again. Actually this one has been in since Monday which is pretty long for her! When it was time to put the tube back in, it was midnight. My 14yo was up, the other children asleep and my dh still at work. As I was getting ready a bottle, I heard Eliana scream. Not a scream I've heard before and it scared me.
We arent sure what upset her, but she was upset! I tried to calm her and had a hard time doing so. Anyway, I tried to get her settled and she really struggled getting settled down. 
She still wasn't real settled and was pretty unhappy, but I thought I could get it in quickly and just have it over and done with. Maybe a bad idea. As I was putting in the tube, she really started crying, then gagging. Then making choking sounds and I didn't have it all the way in. I begin to wonder if I've put it in the wrong way (hasn't happened before) so I yank the tube out.
Eliana then seems to be choking still. She was making odd noises like there was fluid or something choking her. Several times I thought she was going to throw up, but she didn't. I tried to suction her - nothing. The sounds she was making just scared me. Sometimes it is just frightening to be a parent - especially when you wonder if you know what you are doing. She just kept choking, seeming like it was difficult to swallow and it was just scary!
She finally fell asleep and I just held her for awhile. After Roger got home, I tried again. (Placement #22 - yes, I'm still counting!) This time with success! She cried, and even gagged, but it went! Oh, here's a funny. Once I had gotten her tube in, checked placement, taped it down to her face and just thoroughly upset her - Christopher looked at me and said "Happy Mother's Day". 
Happy Mother's Day indeed. I'm one very blessed and very thankful mama!!!
Love to you all,
Leslie
***After typing I am back to the beginning thinking I should post a warning. Today has been a hard day for me emotionally. This isn't an upbeat post at all. Know before you read so if you don't want to hear it, you don't have to go any further. It's hard sometimes to know what to share here. I want to be honest. I think that sharing the struggles has helped people to really be able to pray for us - and that has made a HUGE impact on our family!!! I also want to share the joys. I love Eliana so very much! I think she is beautiful and am so thankful for her! I guess I just want this to be real - the good, the bad and the ugly. I'm so thankful that I'm not walking this journey alone. I know that our Father has carried me a lot and I'm still learning what it means to just relax in His arms day to day.
I keep wondering if I'm supposed to have "moved on" by now? Heart surgery is complete - and a success for which I'm soooo very thankful. All of these months in crisis. It was hard. Very, very hard. I have never been through such a dark, scary and lonely time in my life. It was often more than overwhelming. I know that without the support of God, my family and my friends, I wouldn't have made it through. All of the many many prayers lifted for our family. It still touches my heart tremendously to know how many people have loved on us - through prayers, acts of service and words of encouragment.
I think that for so long I was waiting for surgery to be completed. Then ... I could do things again. But, here it is and it just isn't what I expected. I'm so very glad to be on this side of surgery. It is MUCH better on this side. Much! Though it isn't easy yet. I know it hasn't been long. She is still recovering. She still has a feeding tube. I think that one of the hard parts is that even though her heart is repaired, things aren't just "fixed". There is still a lot to learn ... a lot to handle ... a lot to deal with. Too much for me. I'm glad I'm not walking this road alone.
For the last 4.5 months, I've been dealing with cardiac issues. It really has been so HUGE. I haven't had to face Down syndrome so much. I haven't read that much or even looked into it as I just needed to deal with her heart. Well, now I need to start figuring out new things. Part of me just wants a break! I just wanted a little time to relax. I'm not going to get it though. Or maybe I need to find a new way to get it.
In the early weeks after she was born, I often reflected back on what I called my "last day of normal". It was Dec 14th and the children and I were on a field trip to an art museum to see the monet exhibit. I love field trips and we typically go on one a week. After the field trip, we went with a lot of our friends to a nearby park to picnic, play and have fun! I remember being worried about labor and having a friend tell that since I wasn't "ready" that I probably wouldn't have the baby any time soon. Ha ha! I remember someone commenting on how well I looked pregnant. (The last months are always better for me.) I remember it being a full, fun and memorable day. Little did I know that the next day would be the start of something life-changing. I really wasn't expecting Eliana to start making her entrance the following day. (For those that didn't know, I woke up at 5am sick. I continued to be sick - very sick - through the day. I finally called Roger to come home. I went to my OB who admitted me to the hospital. Very dehydrated and contracting. Not a fun way to start labor.)
Since that time I feel like I've aged a million years. I often think I look it too. I've also cried most days - and on some I've cried buckets and buckets of tears. I've never been one to cry easily and I wonder if I'll get to a point where I don't cry so often or so easily.
Today it was dealing with feeding - and trying to figure so many things out. What is best for my sweet girl? I really want to do what is best for her. i wish that there was someone or some source with the answers. Maybe there is, but I don't know where to find it. Little things that if not handled correctly (feeding issues) can have much bigger consequences for Eliana.
Also dealing with my sweet friend Catherine moving. She showed their house yesterday for the first time. Oh, on some days we can just pretend or not think about what is coming. Today wasn't one of those days. We want to enjoy the time we have left of living beside each other, but some days it is just sad. This isn't the way we thought things would turn out. We built houses beside each other after being best friends for 10 years. What a sweet privilege that has been for the last 7 years. We thought we'd grow old living beside each other. We didn't think they would move. Especially when Eliana was born, the timing just seemed so wrong. I really don't understand God's plan in all of this.
Life is hard. There is so much pain. So much heartache. Is this part of what makes us long for heaven? Life is so hard sometimes. God is good. When the "hard" part is overwhelming, I need to focus on the goodness of God. He never changes. He is love, truth and grace. We are each loved with boundless love by the creator of the universe. That is amazing!
With love,
Leslie
Oh what fun we had with Eliana tonight! She has tried to laugh - and done maybe a small chuckle a couple of times - but tonight she laughed! Over and over. She started it as I was holding her and looking at her. (Not sure what she found so funny!) She laughed and then I laughed back. She repeated. We did this over and over until my cheeks were starting to get sore. (Yes, I need to laugh more!) It was so much fun. What sweet sounds to my ears.
We met with a feeding therapist today. She was able to get her to eat the whole bottle! I think it helped that it had been 4 hours since her last feeding. I was not able to replicate this again today. The therapist thought she looked good - and that we would be able to get her off the feeding tube fairly quickly. She wants to talk with Eliana's pediatrician to make a plan for her. All of this will be run by her cardiologist on Monday. Some of the things to figure out include how much fluid she needs per day (something important to consider as she is a cardiac baby) in addition to how many calories. She is wanting to let hunger drive her in hopes that she will learn to eat for this reason - instead of letting the clock dictate when she eats.
I do want to get her off the tube. I think it will be a tough transition for her as she has pretty much not had hunger-driven feedings. I know that it will work out though - it just may be a challenge getting there. ;-) Currently she eats maybe 6 oz per day - that's about 1/4 of her total intake. Sometimes she is sleepy, others she just won't eat. Lately she has started blowing bubbles which while cute, really doesn't help the food to go in!
Some of the options she talked about are things I'm not sure I'm comfortable with (because it is just counter to what I've done with my other children) and will want to do more research before agreeing to anything. (Things like adding things - cereal or corn syrup - to her bottle feedings and enlarging the hole in the bottle.) It's hard to know what is best. I want to trust others to tell me, but I know that sometimes I need to do my research too.
It's late and I'm heading to bed. Morning always comes faster than I want it too. Just wanted to share our news. Oh, and one last thing. The last stitches from Eliana's surgery fell out on Sat. She is healing so very nicely.
Sorry this is short.
Love,
Leslie
So much of our day revolves around feeding ... still. I know that is pretty normal with a baby to spend a lot of time feeding - but this is sooooo very different from what I've experienced in the past. Nursing a baby is so portable, convenient and easy. Feeding with a feeding pump is none of those things. I am thankful though to have the option as it was very neccessary for Eliana's survival.
We are still feeding Eliana on the same schedule we've been on for months - 3, 6, 9 and 12. It's the hospital schedule that we put her on in early February when she got the feeding tube. It's been a little over 3 months now. When we first talked about getting a feeding tube, we talked it over with the doctors. We thought we'd be getting a "G-tube" (one that goes straight into the stomach and requires surgery to place). When we saw her cardiologist, he opted for an NG tube (it goes through the nose, down the esophagus and into the stomach) as he didn't think she had time for the other. He said she would need 4 to 6 weeks to heal from that surgery before undergoing her heart surgery and he didn't think we had that much time. Given this information we thought that the feeding tube was going to be very short term thing - a couple of weeks - up to 4 at the longest.
Eliana did well on the feeding tube and the meds though. (She had really crashed quickly when she went into heart failure and they weren't sure how well she would respond.) Well enough that her surgery was postponed for a couple of months! This allowed her time to grow and get stronger before her surgery. During the time of waiting we still fed by bottle or nursing as much as possible (basically whenever she was awake). Once she was in heart failure though she just didn't have the energy to do much eating. She did well to eat 4 ounces in a day (out of the 24 she was consuming). Some days more and some days much less.
Since her surgery she is awake much more - though not eating a whole lot more. There are times when she is hungry, but seems to be having a hard time swallowing. Several people have mentioned that she may be having trouble due to having been intubated during her surgery (and for awhile afterwards). I guess I didn't realize that the effects of this and the struggles could last so long afterwards.
Since she takes some of her feedings while she is asleep, we have her crib mattress on an incline. We've also made a little "nest" around her to keep her from sliding down and around.
Note the stethoscope near her right foot. This is used prior to each tube feeding to insure that the tube is still placed correctly. Thankfully we have not had one move. I use a syringe to inject air into the tube and you can hear a "whoosh" noise in her stomach as the air enters. Near the top of her crib above her head you can see the red port of the feeding tube which attaches to the green port on the end of her NG tube. To her left is another syringe (it's hard to see). This one holds water and is used to flush the tube after she eats so that formula isn't sitting in her tube. What you can't see is the feeding pump. It is on a tall pole near the head of her crib.
Another change is that she is also pulling out her tube a lot more! She is averaging about every other day. Today was #21 for me putting it back in. (She's actually pulled it out one additional time that Karen put it back in.) To think I thought I could get by with never having to do this myself. (Not so unrealistic when we thought it was just 2 weeks until surgery.) I'm not sure if the frequent placement of this is hurting her throat either. I know that it is usually very hard for her to eat from the bottle just after she has had her tube reinserted.
She is still quick when she gets it out. I don't always see it coming. Sometimes I walk up to the crib and notice that something isn't quite right. Sometimes it takes me a minute to realize what she has done. Usually the evidence is pretty close at hand - and typically in her hand!
Just today she pulled it out just a little bit and I was able to put it back down - though not for long. She grabs the end with the "port" that attaches to the feeding pump and grips it tightly - and then just pulls all of the tape off of her face. The tape does still irritate her sweet skin. I'm using duoderm (and gentle adhesive type bandage under the tape to help protect her skin, but this ultimately seems to make it not stay down as well.
It is fun to see her sweet little face without the tape. You can see her cheek is a little red and irritated where the tape was located. (On her left cheek.)
We have been approved to see a feeding therapist. She called tonight and I was very excited to set up a meeting with her. I think she was happy to hear that I was excited to have her coming to help. She will be here on Wed morning. She wants to see how Eliana's oral motor skills are at this point. If she has good skills and enough weight, she may look at discontinuing the tube so that hunger can drive Eliana's feedings. She also said that this would make for a hard couple of days for us.
Eliana does sometimes cry in hunger. Sometimes she is able to eat then - and others she just isn't! Usually at these times she just cries and cries. I'm not really sure what is going on then. There are times when I start a feed with the tube just to see if it will settle her and get something in her stomach. I then try the bottle (and usually finish with the tube). She has a lot to learn - or relearn - about eating.
Please pray for Eliana's feeding. Pray for wisdom for the therapist in making recommendations and changes for Eliana. Please pray that we would know how to best help her to learn to eat on her own. I look forward to the day when we don't have to have a tube any longer! I know it will come and I just need to be patient. (I'm getting a LOT of lessons in that area!)
One note of encouragment today came when I was talking with an OT (occupational therapist) about doing an evaluation of Eliana. He works with the Early Intervention. When I mentioned we had started seeing a PT and were hoping to see the feeding therapist this week, he asked who we were seeing. When I told him, his comment was that we were seeing some of the best.
As usual, it's late and I should go to sleep. If you've hung in there this long ... bless you!
Love
Leslie
I know many of you read the entry I wrote for my daughter for a contest that was sponsored by American Girl. (See here if you haven't read it already. )
http://www.homeschoolblogger.com/LeslieNelsen/308596/
Well, the contest rules stated that winners would be notified by May 1 and we haven't heard anything. I had shared the piece I wrote with Rebecca. She was hopeful that she might win. So was I! When May 1st came she was disappointed and feeling like the work she had done was not "good enough".
It was a good opportunity for us to talk about who we are to please and where we are to look for approval. One of my friends uses the phrase "an audience of one" in talking about who we are living for. Rebecca and I talked about how all of our efforts are to bring glory to God. He is the one that we are to seek to please - not other people. (A hard, hard thing to learn. I know I am far from mastering that one!) I also shared with her that people will always let you down or not act in ways that you want or expect. It is not a reflection of your efforts or worth or even their love and care for you - but just a fact that we are human, sinful, not capable of acting in love all of the time. God alone determines our worth - and He has told us that we are precious to Him!
The following day she told me that she had been thinking more about the contest and had a new perspective. She said it was really great that there are so many girls (over 12,000 entered in the contest!) that are doing things to help other people. That's my girl!
Rebecca has continued to work hard on her bracelet sales. She went to campus with her Dad last Wednesday. She sold bracelets in a couple of venues and almost sold ALL that she had! She raised over $800 in ONE day! This is her biggest day yet! Check out the new total in the sidebar!
Almost $4000!!!
She still has some orders to fill and then I'm not sure where we'll go from here. We also have some friends in other states that are interested in helping sell some of her bracelets, so maybe that will be our next opportunity - we'll see. I'll keep you updated as best I can.
Thanks for checking in!
Love,
Leslie
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