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I remember when I posted one of my "numbers" posts and the number of times I had put in the NG tube was 4. I thought that was a lot. It was at that time. If I'd known then that the number would rise so much more, I'm sure it would have been overwhelming. It has gotten easier - but it still isn't easy. So very often now it gets caught on her gag reflex. I sometimes wonder if it's swollen or irritated? Especially over this last week with having to replace the tube so many times.
Some of you that are into numbers may remember my last post when I stated that I was up to 27 times. Yes, it's been 3 more times since then. She has pulled it out every day this week and one day 3 times. *sigh* Some times I just want to cry when I see that tube in her cute little hand.
Today - like another day this week - one of my children peeks into her crib and then comes to tell me that she has pulled out her tube. I've been leaving it out for longer chunks of time in order to try and let her face heal. It's looking better - no more blistering though it is still red and the skin is rough. Still putting creams on it. During the time that it is out, I'm still trying to feed her by bottle.
So this morning when I see that the tube is out for the 5th time, I decide to call the cardiologist and the pediatrician to ask for advice. I leave a message for the ped and then phone the cardiologist. He gives me two options. The first is to put mittens on her hands so she can't grab it. I'm not thinking she would like that, but can see how it could be effective.
Here is the second option.
Can you see that the tube is going up her nose and is taped to her forehead? It was hard getting this tube in. It was just stuck on her gag reflex. She started to cry and I had to just gently keep trying and trying until it finally went down. Poor little girl was just sobbing by then and it was really hard to get it taped into place! There just isn't much room around her nose at all! I just held her and cried. I know I have to do this, but it's still just hard some days.
Catherine helped to tape it down and then put her bow over the tube to hold it in her hair. We thought this might help her not be able to get to it. I offered her the bottle after the tube was in. She had been without the tube since 8am. Over those 14 hours she ate less than 6 ounces. She should have had 20oz. One of the feeding therapists came by today and couldn't get her to eat much at all - and she tried for over an hour. She wants me to try a couple of days of no tube feeds except at night to stimulate her hunger. I just don't think that is it however. I can tell when she is hungry and there are times when even that doesn't help her to eat. There is just something else going on.
I wish I knew what it was - but I don't. I guess I'm in good company because none of the professionals that I'm seeing can figure it out either. Though they are trying. I'm thankful for my friend Catherine who is also reading and researching trying to help find answers, suggestions, anything that might help. This part of the journey can feel lonely and overwhelming. I'm expected to help my baby and make decisions and I just don't know what to do. There just isn't an answer - or at least not an obvious one right now. I shared with our case manager (helps to coordinate Eliana's therapies) that it's hard to know what to do when the "experts" are telling me different and sometimes conflicting things to do. She affirmed that I'm also an expert - on my daughter. It was sweet to hear that reminder.
Back to the cardiologist. I asked her what was the timeline for the G-tube, meaning how long could we go until it was the only option remaining. He thought we still have more time. If we decide that is the next option he said it could be done within a week of scheduling. Our next appt with him is in a week and a half.
Our ped wasn't in today, but I'm sure will call back tomorrow. I talked with one of the nurses there and she was very nice but not able to give me answers either. She offered to have us see a different doctor, but I'd rather wait and see the one that knows Eliana and has seen her LOTS.
Here's where we are with feeding right now. We are hoping to see something that will make an improvement. I've been trying some sensory input (kind of like a deep massage on her arms, legs and back with a soft brush). While she doesn't mind it, I'm not seeing any change.
Next, I can ask the ped for a prescription for Zantac. This would help if she is having any reflux. If she is then it is silent. I don't really see symptoms. This would be an easy answer though. Something that is easy to "fix". I'll probably try to start that in a couple of days. We are trying to space out the new things that we try so that if there is a change, we can know what to attribute it to. After that, I'm not sure.
I'm not scheduled to see that new feeding therapist for another 2 weeks. It's really too long, but she is on vacation this week and was full the following week. *sigh* I really wish she could be seen more than once per week. This was suggested to me by an OT in the hospital and at the time I didn't get it. I do now though.
Oh, I forgot to mention that while watching her during her 10pm feeding (just after getting the new tube), I saw her reach up and grab hold of the tube at least 4 times. *sigh* I was hoping she wouldn't be able to reach/grab it off of her forehead, but clearly she can. Time will tell if she leaves this one in any longer.
It's late and I should go to bed. The children are in "camp" this week. It's a cooperative camp that includes 10 families. We split up the teaching resposibilities and share the work. It's a lot of fun for everyone. The older kids are off-site for the first time doing things like geocaching, canoeing, biking and a ranger program at a local river. The younger children are enjoying a "Fun with Nature" theme. Catherine and I are teaching tomorrow on birds. We did this same topic 5 years ago with the older kids so the planning was very easy. We are looking forward to a fun time.
Please continue to pray for Eliana's feeding. Here are some specifics.
- Improvement in the volume she is able to consume by bottle
- Wisdom in finding out if there is a problem and identifying it.
- Wisdom in knowing the best course of action to take.
- Strength and peace to go with a plan or to say no if it just doesn't seem right for Eliana
- Appointments with the OT/feeding therapist sooner rather than having to wait.
- That her feeding tube would stay put for many days!!!
- Wisdom in knowing if she needs a G-tube and peace if she does
- Health for our little girl
That's all as it is late and I'm very tired. Morning always comes too soon for me.
With love,
Leslie
And not the type I want to brag about either! Eliana has had a time today pulling out her feeding tube! I don't think it's intentional, but she is still fast about pulling once she has grabbed onto it.
Here's what our day looked like.
6am - Tube feeding
8am - Joshua walks by Eliana's crib then wakes me to tell me that her feeding tube is out. I walk over and she is happy to see me. She smiles a delightfully big grin while holding on to the feeding tube in her left hand. She has pulled it out completely.
I decide to leave the tube out to let her face heal for a while. Eliana lays beside me and falls asleep. She wakes about 9:45.
10am - Eliana eats about 1.5 oz from the bottle and is not interested in any more.
noon - Time for a regular feeding, but Eliana has just fallen asleep. I decide to let her sleep since her last feeding was a little late.
2pm - She starts to wake and I debate again about whether or not to try the tube. I decide to try out the sensory exercises on her. She doesn't mind them. We'll see if they make a difference for her. Since she has had a good nap and is alert I decide to wait again on the tube and try the bottle.
3pm - Eliana takes a bottle on and off. She takes in 3 oz. This is a good amount, but it has really taken far too long to get it in as it will burn more calories than she should.
4pm - Still awake so we try more sensory exercises.
6pm - Put the tube back in. Try the bottle but she isn't interested. Start her tube feeding.
6:12pm - She pulls her tube during her feeding! Fortunately I am right there and see it and can stop the pump. If she pulls it out while it is running it can go into her lungs. We really don't want her to aspirate any formula. She doesn't get the tube all the way out. Since she has only taken in a small amount (24cc - less than 1 oz) I decide to just put it back in. She has gotten the tape all in a wad so that it won't work. I'm thankful to hear a friend stick her head in the door just at that moment. She comes up and helps hold Eliana while I remove the old adhesive and put on some new. Then we start the feed again.
I stay with Eliana to keep an eye on her. When she has almost finished her feed, I go to get some water to use to flush out her tubing at the end of the feed. During the 10 seconds that I'm gone - she pulls out the tube again!!! This is the 3rd time today. Since she has a full stomach I know that I can't push it back in so I pull the rest of it out.
8:15pm She is worn out and falls asleep for an hour.
9:15pm Eliana wakes up. We do the sensory exercises. Take a bath. Reinsert the tube. She is definitely awake and stimulated at this point. I try again with a bottle. She is eager and ready to eat - but not very effective at getting much in. We try on and off for about 30 minutes or more. She takes in 2 oz then gets the rest in a tube feed.
So, I've reinserted the tube 27 times now. That doesn't count the many times that it has come partially out and I've just stuck it back down. I'm down to 8 tubes now and wondering if it's time to order more. I'm still confused about the feeding. She wants to eat, has the stamina, has a good suck, but something is wrong. Please join us in praying for wisdom in figuring out what is wrong. I know that if this isn't resolved that we are looking at another surgery for a G-tube. That really isn't the route that I want to take with her!
As I'm confused and wanting answers, I also find a peace in knowing that we will figure this out at some point. I know that God has a plan for our lives and that He loves us. I don't understand much of the trial that we have walked through, but know that because my God is good that He will use this for good.
I was blessed by a note from a dear friend today with a Bible verse that really ministered to my heart. I wanted to share it here too.
2 Chron 20:12-17 For we have no power to face
this..... We do not know what to do, but our eyes are
upon You. ... This is what the Lord says to you: 'Do
not be afraid or discouraged because of this ... Go
out to face them tomorrow, and the Lord will be with
you.'"
In this case, it was Jehoshaphat facing a vast army,
but for all of us, it's the trials of life.
v.17 Take up your positions, stand firm and see the
deliverance the Lord will give you, Roger and Leslie.
I'm trying to keep my eyes on you God. Some days it is just hard as I'm overwhelmed by the things that I need to do and keep up with for my little girl. I'm so thankful that she is healthy and happy. Her smile just melts my heart. She is a precious blessing and I'm so very thankful for our Eliana Joy!
With love,
Leslie
Whew! It's good to be home. I'm not always sure why it is soooo tiring to work at a conference, but it is! I'm sure it doesn't help that I have to work around a feeding schedule instead of going to sleep, but I'm not complaining! It is good to be home though!
I prayed before going to the conference that God would use my time there as He wanted. That my words would be encouraging to someone, that I might help bless someone if they were struggling or overwhelmed and that I might be of help to someone that needed it. What I didn't ask for was to be blessed in return. Isn't God good to have done that for me?!
I had asked for prayers for Eliana and she did great! She is such a sweet little girl who just loves people! She loves to smile, laugh and talk with people. If given the choice of playing with a toy - any toy or looking at a person, she will choose the person every time. I love how social and interactive she is with people.
She did not eat well with her bottle however. I'm not sure if she was distracted or overstimulated or something else? She had one night when we were back in the room when she was clearly hungry, trying to eat, but kept pulling away from the bottle. I'm not sure if she was hurting??? It's clear that "something" was wrong. It's so hard when you can't just "fix" things for your children. I'm sure that is something that all of us can understand and relate to.
We kept Eliana with us at the booth most of the time. We brought her feeding pump and set it up there as well. It definitely drew attention! I had people come over to talk with me that had also experienced having a child on a feeding pump and one that was getting ready to go on one. Funny the "clubs" we never want to belong to and yet find comfort from others that have journeyed on that same path.
I also met several Moms of children with Down syndrome. These moms were very encouraging to talk to as they shared their stories of the blessing of their special child. It does help to hear that it isn't the "doom" that you often hear about and that there is much joy instead. It doesn't mean it isn't hard, but that there are many rewards as well. I also met a Mom that is newly on the journey too with an 8mo old. She lives fairly close to me and is planning to use the same curriculum. I'm hoping she will join our local FIAR homeschool group.
I talked with a number of people this week-end about FIAR (Five in a Row - our curriculum that I was selling) and homeschooling in general. I remember how overwhelming it was starting out and how blessed I felt at finding FIAR at the beginning of our schooling. It is a very gentle, relational and fun way to school. It has been a great fit for our family. I think it will be wonderful for Eliana when she is ready for it too. I am humbled that God continues to use my words to encourage others. I am thankful that He is able to use me as confirmed by people telling me that my words were a blessing to them. Isn't He good to use each of us to minister to others?! I love being a part of the body of Christ!
I was also blessed to see a sweet friend that I only see once a year or so. We hadn't seen each other for a year and caught up quickly. She is a mom of 6 as well and has been diagnosed with stomach cancer. She is undergoing tests. Please pray for Dee Dee. She is a godly woman that loves the Lord and is praising Him in the midst of this trial. Her dh has started a blog about their journey. I'll come back and post it later.
Please also pray for another dear friend Maggi. She has been in the hospital for 5 weeks now. She was rushed in one day when her body was undergoing organ failure. It was thought to be meningitis but I'm not sure if this was confirmed. For a while it didn't look as though she would make it. Thankfully, she is recovering though she has also lost her legs below the knees. She is still in the hospital undergoing therapy and has a long road ahead of her. Through all of this, she and her dh have praised God for His goodness. I know that they would love your prayers as well.
I'll have to type more later and try to post some new photos as well. It's late and although I was able to catch up on some missed sleep today, I'm still tired. One last praise. My children at home had fun with their grandparents. I'm so glad that they had this time together. We were sad to see them leave this morning and look forward to their next visit!
With love,
Leslie
PS Thank you for your prayers!!! God has been so good to answer them. Eliana's face is improving. It is still red and dry/peeling. It looked much better over the last couple of days - MUCH!!! We were able to keep her tube in for 5 days!!! I think that must be a record since her surgery. She tried to pull it out many, many times - but we were able to catch it before it was pulled out. I also retaped her tube several times and this seemed to help too.
Tonight putting in the tube was one of the best times yet! It was a fairly quick one and she only cried for a short time. Thank you God!
I know that I waited until the last moment before Eliana's surgery. I even did this before her birth. In fact, I had packed NOTHING - and because I was so very sick and had to be admitted to the hospital right away, there was no time to pack anything. (In the past I've always just packed when I was in labor.)
Tomorrow we will be leaving to attend the NCHE conference. It's our state's homeschool conference and I'm a vendor there. I sell the FIAR curriculum - which I love - and is written by dear friends of mine. I've been doing this for a number of years and have loved sharing with others the joys we have experienced using this curriculum. For several reasons, this will be my last year as a vendor which makes me sad. Perhaps if the market changes, I will do it again one day - we'll see.
This will be Eliana's first trip. It will be her first significant outing that isn't medically related as well. We've missed a lot of field trips and travel that I had anticipated going on and I'm looking forward to getting out with my sweet girl. A little nervous about it too.
There is sooooo much stuff to pack for Eliana! It's amazing how one so little can require so much stuff. I have the feeding pump, additional feeding bags, syringes, stethoscope, formula (both ready to feed and powdered to add in), bottles, dish soap, drying rack, bottle brush, NG tubes, scissors, various adhesives (duoderm, tegaderm, pink tape), diapers, wipes, blankets, clothes, socks, pjs, swing, stroller, etc... Maybe you can see why I'm putting it off. LOL
Today we visited a new therapist - an OT with feeding experience. She was very nice. She watched Eliana eat. She noticed that there seemed to be some problem - something that is bothering her. What she doesn't know is what has caused it. It could be something sensory caused by all of the cardiac issues, could be silent reflux, or it could be fatigue. A lot of things to look at and try to sort out. We are going to try to take each one step by step and see if we can rule things out. She told me that if we tried one and didn't see a difference in a week or less, we could move on to the next thing.
Eliana didn't eat well. She tried and then got fussy. The therapist tried some different things to soothe her like a vibrating chair. She finally got really fussy and stuck out her lip several times and then just cried. Really not something she does often at all! I tried feeding her again and she was clearly hungry, but for some reason couldn't eat. I then tube fed her some of the formula which settled her right down and made her happy again. That was what made the therapist think that reflux/sore throat could be the problem.
She also said that based on her experience she did not think it was a good idea to go without the tube feedings. She thought if we could see an increase in the amount that she is taking that perhaps we could move to that at some point. My instincts tell me that this is the way to go as well. She's gone as much as 12 hours with no tube feeding and didn't indicate much hunger at all. She also takes only about 6 ounces per day by the bottle. That's less that 25% of her total. I know that she is a healthy size and could afford to lose some weight, but I don't want a lack of food to affect her ability to grow and develop in other areas. *sigh*
It's hard to know sometimes what is right. I know that God will give us wisdom though as to what to do for Eliana. That doesn't mean we won't make mistakes - we'll make plenty of them! We will do the best we can to follow God's lead on what course to take for Eliana.
If any of you lacks wisdom, he should ask God, who gives generously to all without finding fault, and it will be given to him. James 1:5
This is one of the verses I've been praying as we seek to find what will work best for Eliana. Honestly, it's hard to know. I'm trusting God to lead us on this. Trying to find the path He wants tme to walk.
The therapist today was encouraging in terms of what I'm trying to do with Eliana as well as commenting on her motor skills. It's always nice to hear words of hope. I think that so often when you hear about a child with a disability you tend to hear the "gloom and doom" instead of the hope. I know that God made Eliana and blessed our family with her and yet words of hope for how she will fare in this world are still nice to hear.
A few prayer requests for our family.
1. Safety as we travel to the conference. Health for all of our family, most especially Eliana.
2. Peace at home while we are gone. My parents are here to help with the children and I'm hoping that it will be a fun time for all of them.
3. My daughter Rebecca has a hard time being away from me for lengths of time. There have been a number of those over the last 5 months and her heart is just tender. (That is often a great thing but can cause hurt at other times too.)
That's all for now. God bless you faithful friends!
With love,
Leslie
Not feeling creative with the titles, but wanting to update on what is going on. I'm not sure where my day has gone, though having a medical appointment always seems to take up so much of the day! (Getting ready for it, driving, time waiting, time in the appt, etc.)
Eliana pulled out her feeding tube this morning close to the end of her 6am feed. Thankfully we were both awake (courtesy of the 2yo and 5yo) and heard it so that she didn't have it potentially running into her lungs! (Never thought being woken up by my little boys would be an answer to prayer for Eliana's safety!) Her skin where she pulled out the tube looks awful! It's crusty and so very red. It looks like it did just before her surgery. She was looking a little better just after surgery, but it's getting bad again now. I decide to leave off the bandages as long as possible to let her skin have more time to try and heal. We are using duoderm and tegaderm and haven't found any other good options. I have been using aquafor to moisturize her skin, but it doesn't help when the bandage is just ripped off of her face.
We had a visit to Eliana's pediatrician today. She has continued to gain weight. She is up to 13 lb. 13 oz and is 24 5/8" in length. She has literally jumped on the growth chart since her surgery. Her doctor plots her growth on 2 charts - one that is used for most children and a second that is used for children with Down syndrome. On the DS chart Eliana is close to the 70-75% in both height and weight. She does have a few rolls which are quite cute!
Face - Dr L is concerned that the skin on her face may become infected. She prescribes a cream to put on her face (Bactraban) to help it not get infected. She also mentions that she is concerned that we will end up needing a G-tube due to her face if it doesn't clear up. She want us to be able to avoid that if at all possible.
Part of me is feeling resigned to the fact that Eliana may need another surgery. I don't want it - but I don't see things improving like they need to be and the NG tube is not a long term option. I'll do all that I can to try to prevent it, but know that it isn't in my control.
Dr. L said it was fine for us to go to the conference as long as people weren't in her face. I told her that there were probably some people that would want to be in her face and she just told me that I needed to make sure that they were healthy. :-)
On the ride home I was praying and thinking about how much the support I've received from people has meant to me over the last 5+ months. I can not even begin to explain how your notes, calls, acts of service and more have ministered to my heart!!! I have felt so very loved even as my heart was broken. I know that God was telling me that all of this support was His way of showing love to me too. I have always been thankful for my wonderful network of family and friends. I have been additionally blessed in that He placed new friends in my path that have been an amazing source of encouragment, love and wisdom too - several having walked this path before me. I am so very thankful to be a part of the body of Christ. I'm so thankful to have an active support system both in real life and also here on-line. It would have been a much harder, darker road without all of that support.
I was listening to a song today that talked about how you had to walk through the valley to climb up to the mountain of God. I've always looked at others and marvelled at their faith when they walked through trials. I wanted that faith - but I really didn't want to go through the trials! Well, this trial has been hard and has felt long. I know that it isn't over, but it is getting better. I'm not sure how I've changed, but continue asking God to do something in me - make me more like Him - anything but leaving me unchanged.
I have received phone calls from the outpatient speech/feeding person at Duke wanting to see if I wanted a follow-up. I have also been trying to work something out with a friend's (hi Catherine) therapist who is experienced in this area. I was hoping to find an option that was covered by our Early Intervention so that it wasn't $50 a visit with co-pay/parking (and that is WITH insurance).
Today I received a phone call from that gal I tried to schedule with last week (earliest appt was end of June). She talked with me on the phone, asking questions to try and see if she could help via phone. I explained as much as I could and she explained that she was just booked. Towards the end of the conversation though she agreed to meet me tomorrow! I'm so very thankful for this! I will update on this as I can tomorrow.
If you are praying for us, please continue to pray for Eliana's feeding. Nothing today that remotely came close to yesterday's grand numbers. She ate a little over 6 ounces orally today. A long way to get up to 28 oz. Our ped said we could go lower if I wanted to try to do more oral feeds and less by tube. At this point I'm not going to do that as I don't see that it really helps her. I did not tube feed for 3 of her feeds today and she only took in 4 oz total in those three feeds. Yesterday was a sweet spot - and one I look forward and hope becomes the norm.
Also pray for healing for her skin. Perhaps also that she would leave her tube in for longer periods of time. I've put in a new tube 25 times now. Tonight was hard as it just kept getting "caught" on her gag reflex. It did go in though.
She's finishing up her last feeding for the night and it will be time for bed soon. My parents are coming here tomorrow and we are looking forward to seeing them!
Thank you for your notes, your prayers and your friendship! I truly thank God for each one of you!
With love,
Leslie
She drank 4 ounces from her bottle this morning!!! She has NEVER had this much - EVER! This was her complete feeding. Now, granted it was in 2 parts - but it counts! I fed her the first 2 ounces and she took about 15 minutes to eat that. (Really wonderful and much faster than she typically does it..)
I was using a 2-ounce bottle, so I refilled it and then she seemed not interested at all. I decided to take a short break to see if that helped her. Well, the short break ended up going about 45 minutes and then she took the other 2 ounces! Oh, what a sweet moment!
It's encouraging to see that she CAN do it. I know that it's still a lot of work for her, but praise God that she can do it! I'm still not sure what I can be doing to help her - if anything. Still waiting to hear from the feeding folks. We'll see.
For now, this has just made my day! This is her best feeding of the day usually and I am praising God for this small step. I know it may seem like "not a big deal" - but for a little girl that has struggled now for 4 months (pretty much her whole life) to eat - this is a very big deal!!!
Just wanted to share my joy!
With love,
Leslie
***I wrote this on Mother's Day, but wanted to wait to post it until I had pictures. I hope you enjoy! ***
What a delightful day I've had. I think that this has been one of the best Mother's Days ever for me. 
I was able to sleep in today which was a treat in and of itself. Joshua (7) really didn't understand this. He wanted to wake me up to show me that he loved me. Roger kept trying to explain that it showed love to let me sleep. He asked which is more important - sleep or love? I can tell that sleep just doesn't rank high on his list of priorities. One day he'll understand.
So, guess which child woke me up first? Yes, Joshua. He had made me a badge that read "Best Mom" and wanted me to wear it. I promptly put it on and then went back to sleep. He came in again later to show me a valentine that he had helped Eliana to make. She scribbled some on a heart shaped note that he had written for her. Very sweet!
I was treated to breakfast in bed. Quite a breakfast it was too! An omelette, bacon, english muffin, fresh fruit and a strawberry smoothie. I also had beautiful flowers on my tray and the food was garnished with fresh herbs. Isaiah was very interested in sitting with me and was ready to help me eat whatever I thought I wasn't going to get to.
Before I went downstairs, I had a treasure hunt that Rebecca had made. The first clue was taped to Eliana. I had further clues that led me around the upstairs and then to the top of the stairs where I was blindfolded and led downstairs. I was greeted by a large "Happy Mother's Day" on a chalkboard. Then a table filled with flowers (3 arrangements), cards, candy and a gift. All around the room were many, many colored pictures that Rebecca, Joshua, Isaiah and Daniel had worked on all morning.
They each delighted in giving me the card that they had made. I delighted in receiving them! What sweet sweet children I have! (Most of the time.) Christopher made a "card" for me on the computer - two actually. One was a photo of Eliana that he had "written" on using photoshop. The other was a note made of race car tracks from one of his favorite games.
I am so very glad to be a Mommy!!! It is truly the most amazing experience. I am thankful for each of our children and all that they bring to my life and to our family. Once again, I know that I am very blessed indeed! I encourage you to hug those that you love today! Take every chance that you have to show those you love how much you care!
Love,
Leslie
Take a good look at the picture. (I'll give you some hints ... spaced out a little bit if you want to guess.)
Look at her cute little face. See it?
Or rather do you see what is missing?
Yes - she pulled out her tube again! It's been 3 days and even though I have retaped, she is good at getting it out!
I don't remember if I mentioned that I noticed last week we were running low on her feeding tubes. I called and ordered more. I was very specific about the type, the size, the brand name, the model number. I really want the type that we currently use. I ordered 15 to go along with our months' supply of feeding tube bags. The gal on the phone asked if I was sure I needed that many. I told her that Eliana pulled out her tube on average every other day at times. So in a month - yes, I would need that many.
Well the shipment arrived, but I didn't check it right away. I checked it on Monday when I realized that we had only 1 tube left and discovered that the wrong size was sent! Only 3 were in the package and it listed that it was backordered. I thought perhaps they sent this to hold us over until the others arrived. Thankfully I called. The backorder was for the same wrong size. I told the gal on the phone about my conversation last week and as I explained she remembered talking to me. She asked if we could make do with what was sent. I told her that no we couldn't.
The size that Eliana needs is a 5Fr (the diameter of the tube) and we were sent an 8Fr. Her nose is so tiny! And I wonder if it hurts her throat at times when I have to keep putting it in. It can't feel good to have had that down your throat for over 3 months. Also the last 2 tube placements have been rough! So no, I wasn't willing to try a bigger tube. She told me that we should have the new tubes by the end of the week.
Well on Monday Eliana pulled her tube and I placed the last one in. I was hoping that she would just leave this one in until the new shipment arrived. Well, tonight she pulled out that one. I have a couple of options.
1. Go to the hospital and ask for a tube. If they won't give me one then I take her to the ER and have them place one for me.
2. I use a different brand tube that I have on hand. It's the right size but not the same style. I like the style we use as I'm comfortable with it. I know how far to place it based on the markings on the tube. I'm comfortable with this one - well, as comfortable as I can be. The other tube is about 3 feet long (the one we use is 16 inches) but at least it is the right diameter.
Since it is night, Roger isn't home, and I'm home with the 3 little ones - option 2 looks good to me. I go to our supplies and get the tube ready. I measure it against the tube she has pulled and mark it with tape so that I'll know how far to insert it. (I've also been taught how to measure against her body, but wanted a double check on length.) I get everything prepared and wait.
Shortly before Roger arrives home, I look again in our supplies. I am greatly surprised to find ONE more of the right type of tube! It wasn't buried in our supplies so that I just missed it. It was sitting right on top. What a sweet thing to see. It's a small thing, but I'm thankful that by whatever means, God has given me this tube. When I tell Roger about it, he asks if I just dug around to find it. I told him no. I had even moved the supplies around tonight looking for everything and had not seen it. I looked earlier in the week and didn't see it then either. I had counted prior to Monday and had seen one in there - the one we used on Monday. Thank you God for this small gift that has your loving hands all over it.
The tube is in now. It went in pretty easily with a minimal amount of crying. That is a praise and thank you as well!
Love,
Leslie
PS There's another entry from earlier tonight just below this one.
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
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