Bye Bye Button

The button is gone! Aaron and I removed the button on Wednesday night, May 16, 2012, just before bed.  By the morning her stoma had closed to 1/4 the size. We kept gauze on it for two days and really didn’t have any leakage. By the third day it was completely closed! Such a blessing. We did not want to have to put Hailey Francis through another unnecessary surgery to close to hole. And now we do not have to put her through that for sure.

Since the wean, she has had some hills and valleys of intake. One day she would take 29oz, then continue to average around 25oz a day for a week then drop down to  17oz.  This was extremely frustrating and scary.  But despite the stress we vowed we would NEVER EVER EVER tube feed her again.  She was increasing her baby food intake and doing well exploring new table foods everyday. How could we tube her just in fear?  Fear that was installed by our U.S. health profession of today, that she had to gain so many ounces a week and fear that made us question… “Are We starving our child and harming her by not tubing her what was “calculated” that she should be taking?”  But she was gaining and she was still active and happy. What more could we ask for? Most of that behavior is pretty normal too.  We had so many parents tell us that for some reason or another, kids will eat like crazy one day then go days barely eating what they did before. Even adults have hills and valleys like this as well. We just measure Hailey’s intake too closely and are still weighing her every week, which has been stresssful to await Mondays just to see what she has gained on her own. Happy to say now that the button is gone, so are Mondays weight checks. She will now be a normal baby that is only weighed at well check ups months apart… not weeks.

The so called formulated calculation according to weight that determined what Hailey should be eating and gaining, needs to be seriously re-evaluated. If our NICU had not been so strict on the product number of ml Hailey had to take according to her weight, and been more accepting that EVERY BABY IS DIFFERENT, we would never had been pushed into getting the feeding tube that she really did not need. Looking back, just because she would only take 30ml out of her suppose to be “goal” of 46ml or even 56ml time after time, should not have been cause to do a surgery.  As you all know, I could go on. I only hope that I have become an advocate to help others.  On my many message boards, I learn everyday that we are not the only ones that were pushed into the G-tube. However I fear that very few decided that the professional medical advice they are given is wrong. If we would have continued to listen to the doctors around here, Hailey would not be eating anything right now. How wrong would it have been to keep waiting until she was 2or 3, when eating is the basis of our survival, and something she very much enjoys now?  Eating is also a very social experience.

So glad we stepped out of the medical box here, and hope we can help many others!

I will continue to update Hailey Francis’ progress and happy happy life!  The new news today…. She will be a BIG SISTER December 26, 2012! Back on Lovenox shots and praying for a full term healthy baby. Watch out NICU if we have to be back!

GOD IS GOOD

Day 16-17

Day 16: oral intake 610ml (20oz)

March 19, 2012

We are so grateful! Hailey Francis took 20 oz. We have graduated to ounces since the milliliter number is so large! We our instructed to now make the step and slowly step back away from all the counting milliliters and worrying, and switch to being confident, that Hailey can do it herself.  We are to only support her, but not control!

This will be a challenge for us since we have counted since the day she started getting milk almost 8 months ago now.

“Blessed are you who believed that what was spoken to you by the Lord would be fulfilled”

Luke 1:45

Day 17: oral intake 18oz

March 20, 2012

Today was a humbling day. It has seemed so easy to be flying high with Hailey’s success that one step back seems devastating. We are not doing very well with not counting as you can tell. Twice today Hailey Francis refused the bottle almost entirely, taking only 1 ounce at a time. We cannot help but feel plagued with anxiety all over again, fearing that she may be remembering her aversion and stop taking as much.  Despite us being worry warts, Hailey is still going strong. She finished the day out with only 2 ounces less than yesterday.  We have to remember again, that we do not always take in the same volume every day.  As much as I try to tell myself this, I seem to have no control over the pangs in my stomach when she seems uninterested in the bottle like she did so many times before the wean. Our goal for tomorrow is to keep remembering that Hailey Francis has control, and we are NEVER, EVER tube feeding her full of milk ever again!

Day 3-15 WE HAVE AN EATER

I have refrained from posting everyday, mostly for my own sanity. This process has been so scary, and we were focused only on Hailey Francis. I hope this helps many other parents that are in the same boat we were. The wean is not over yet, and we may still have some mountains to clime. But, we are to the point where we need to learn to stop worrying about how much Hailey Francis takes, and trust her that she knows what she needs. I must say this is a wonderful place to be. So learn we shall has hard as it may be to completely submit to her control of her own formula intake. Which by the way, every other parent does automatically from the moment their baby is born.

Below is Day 3-15. Every time I reread this it’s like experiencing the transformation of our daughter all over again. WE HAVE AN EATER!!!

Day 3: oral intake 117ml

March 6, 2012

The anxiety is so overwhelming that I feel like my heart is beating out of my chest all day long!   Hailey Francis gets a 9 hour continuous feed at night with 70ml/hr, total 630ml. We have kept that and for three days done absolutely no tube feeds during the day, where she usually got 90ml 4x a day.  We have only been offering the bottle with hunger cues. Basically we are like… “What hunger cues.”  We can’t tell that she has expressed any hunger cues. When we think she is fussy or showing sign of sucking we offer the bottle.  But still she is not taking 50ml again like she used to, and now she hasn’t been being pumped full every three hours either. MDS has informed us that she probably still is not feeling hungry. But it is so scary watching her lose weight. I can see her onsies getting loser.

We are also trying baby food.  So far we have tried apples, peaches, and carrots.  Which we only did a handful of times before, because our GI instructed this was not needed until she was one year. Well I think we are paying for not trying more now. Now she will literally clench her lips together making it nearly impossible to get the spoon in. Even through efforts of trying to make her smile and open her mouth that way… nope she’s not falling for it anymore. When we do manage to get some in, she doesn’t spit it out. And she is not crying or screaming through any of this. That’s a good sign right? I know this part is practice, and I’ve been instructed to not “trick” her, she is supposed to accept the spoon and move towards it. Really? How else are we to go about this?

We have been trying anything and everything to get her to eat more. She is learning the difference between food and toys. She loves to put toys in her mouth, but put food in front of her and she hesitates before putting it in. She seems not to like when we try to put something in her mouth, but she can do it with no hesitation. This is what makes me think a sippy cup would work better.  She can hold the sippy cup and or bottle, but can’t really tilt them up to get much out. I have some with the straw I haven’t tried yet. Maybe I’ll do that tomorrow.  She still isn’t taking in more than usual, and actually isn’t taking in more than 25ml at a time. We have seen her do more when she was being pumped full. Oh the questions in my mind. Why why why!

New instruction from MDS for tomorrow is to start turning off her night time pump one hour earlier, making her feed volume 70ml less every night.

Day 4: oral intake 85ml

March 7, 2012

This rollercoaster is weighing on both of our hearts. One moment one of us is feeling the tolls of stress that a breather outside is in need. Then the next moment we are singing silly made up songs just to see one of her dimpled smiles!

How does she still have so much energy? Here she is next to me, wiggling and playing with her toes in the air. It is 8:17, 17 minutes past her usual bedtime, and she is as happy as can be. She is getting 35% less formula. We have to trust what someone is telling us thousands of miles away and an eight hour time difference.  I knew it would be tough, but I’m really struggling with it more now than I thought I would. I would be lying if I said I never think about quitting, because I do all the time. Aaron and I know we need to stick it out, but it is becoming harder and harder when we keep decreasing Hailey’s volume and she is not increasing. I saw a parent’s post today on another forum, “tube fed kids deserve to eat. com,” whose baby became less interested in food a few days into the wean, orally taking more before the wean. Many others replied saying the same happened to them. One said her daughter didn’t start eating until day 12. Whoa! Makes me feel better, but I’m still so scared she is losing weight and will never start to eat.  Aaron and I are starting to think that maybe she is starting to feel hungry but doesn’t know that eating will soothe this feeling. She hasn’t made the connection yet.

Our instruction tonight is to turn her pump off two hours earlier, to help her start feeling that hunger. I’m told it is better to do it this way, gradually, than turn her night pump off completely, as it can be overwhelming to be sooo hungry and not know what to do with it.

We are still hanging on, but by a thread of hope now.

Day 5: oral intake 192ml

March 8, 2012

Yeah! She took almost twice as much as yesterday, but we are scared to say the least.  She hasn’t been very consistent in her oral intake. She is still active and exploring the world around her, and that keeps us going.  Today was my birthday, and as I was asked by family members prior, what I wanted, my reply was always for Hailey to eat.  We ordered out for dinner, and Aaron had mashed potatoes for a side.  I experimented with Hailey and gave her some off my finger. For some reason she will let us put our finger in her mouth but not a spoon. She seemed to really like them, better than any store bought jar food we have tried. We will see where this goes! I’ll take this for my birthday present! Thank you Lord for being so gracious. Little things are so big right now!

We can see her weight loss in her loose clothes and not as chubby cheeks. It’s like a knife through my heart every time I think about it.  Are we doing the right thing? I know there are some out there that do not support this type of wean. This keeps me from putting too many details on here, to avoid any negativity.

Day 6: oral intake 244ml

March 9, 2012

And we are moving right along! She LOVES mashed potatoes. She is actually going for the spoon! We are so pleased! Before she was just getting minuscule tastes, but now she is gladly smacking down a heaping table spoon.  Of  course not at one time .

Day 7: oral intake 215ml

March 10, 2012

Today Hailey Francis took a tiny step back. Although it seemed big to us, MDS reminded us that even we, as adults, do not take in the same volume of liquids every day. In her words… a varying amount of daily intake in a child of Hailey’s age is not a drawback, but a very normal and usual and common thing.  Your daily intake and output also varies greatly, depending on our activities, opportunities to eat, other variables. One day you will drink 2 liters, the next not even a half.
Hailey is now coming into a developmental phase called “individuation”, this means wanting to do things by herself, wanting to take the lead in mutual things like feeding and reacting pretty aversive or paradox, if she is confronted with any kind of expectation.  So please trust her, since there is milk there, she will not refuse it, when she really needs it, but please don’t offer too often, because this will only produce oral aversion, which is mostly a visual aversion towards the idea and fantasy of being fed and not so much an aversion against the taste exposure.  We need her own motivation to be the driving force.

 

Day 8: oral intake 279ml

March 11, 2012

We are trying to let go of any expectations we have for Hailey. And we can feel the anxiety leaving us bit by bit. Hailey did not cry at the sight of the bottle today, which used to happen nearly every time before.  This is such a big step and almost a sight we thought would never come and it is here!

Day 9: oral intake 309ml

March 12, 2012

Our amazing home health nurse came today to weigh Hailey Francis. I have been dreading this day. And the verdict is…. She has lost a total of 15oz since the start of wean. This seems like a lot, but it is only 6% of her pre-wean weight. Ten percent of her body weight is considered still water weight. Therefore, this weight loss is safe; though heart retching to see, on her and on the scale.

So we continue on and keep trusting Hailey and her right to have control of her intake.  And maybe even pull out the button on her own, like she almost did today. 🙂

Day 10: oral intake 365ml

March 13, 2012

Hailey is doing wonderful! We are so proud of her! She is still slowly increasing, but with this is huge success. Today her oral intake was 49% of her pre-wean volume! She has increased her oral intake by 456% since day one!  Eight days ago we were so afraid she would take so long to get to even this halfway point. But she is there and actually enjoying every bottle and we don’t dread feeding her anymore! Which is sad to say, I know.  Unfortunately it is all too true. Almost every time we would sit down to try to feed her from the bottle, a swarm of depression and doubt would make our heart flutter in apprehension, just hoping she maybe would take enough, even a little drop, so we wouldn’t have to tube everything, taking over an hour and fearing the possibility that she might retch.  She is actively licking and gnawing on vanilla wafer and graham crackers. To see her enjoy this brings tears to my eyes. I don’t even want to brush the crumbs off her, because it is a beautiful sight. Before, I would foresee her first birthday and break down crying, so afraid that we would still be tube feeding her. It hurt me to think she wouldn’t have a normal, fun birthday with birthday cake all over her face. Today this nightmare has been chased away. My crumb face little girl, will have icing from her first birthday cake covering her from head to toe!

My Hailey Francis has an amazing story behind her scar, that will help many others, and she will love her story too!

Thank you Lord! We continue to place this in your hands, and have faith that you have wonderful plans for Hailey Francis.

Day 11: oral intake 333ml

March 14, 2012

We are not out of the woods yet. Even though she took an ounce less than yesterday, we are remembering what MDS told us a few days ago when we were scared of her decreased intake. Not every day is the same. We still have faith and trust in God that He will carry us through this with a wondrous victory.

Oh and Hailey’s first tooth finally broke through.  Now those graham crackers and vanilla wafers and being broken down faster.  She is growing up so fast!

Day 12: oral intake 352ml

March 15, 2012

The rollercoaster continues. She increased up again today as the same volume as the day before. We will take anything we can get.

Our nemesis, constipation, has been creeping around for the past two days, but today it trumped and left our baby screaming. We have had various tips on how to conquer this. From dark karo syrup to a powder laxative (miralax) to splenda, which contains maltodextrin. We feel if we can get her comfortable again she just might take more formula. We decided to tube pump some water tonight before her two hours of formula is pumped. We have to be very careful to get her system going again, but not to give her diarrhea and lose much needed water and possibly dehydrate her.

Day 13: oral intake 368ml

March 16, 2012

Hailey Francis crept up again with her oral intake. We are reminded by MDS almost daily not to have expectations on what Hailey “should” be taking. This is not fun for her and not completely enjoyable for us to be let down by unrealistic expectations that we have no control over. Growing is not a contest. Whenever one of us is failing in this mission of no expectations, the other is always there to be accountable and lift up hope and spirits. I love my wonderful husband. God sure knew what he was doing putting me and Aaron together and what a great sacrament of marriage.  Thus, if God knew what he was doing then, then He undoubtedly knows what He is doing now. So we press on!

Day 14: oral intake 450ml

March 17, 2012

The Lord prevails! Hailey Francis took 15 ounces today, 60% of her pre-wean volume! And after some splenda, crazy enough, and prunes and apples her constipation is slowly subsiding. Hopefully now her increased fluid intake will help more and more every day.

Tonight is our first night to NOT put her tube into her button, to NOT get her bag of milk ready and hook her up after she has gone to sleep, and to NOT hear her pump continuously going through the monitor. I almost don’t know what to do with the silence. In addition to the silence and the excitement of feeling normal and not having to worry about her getting tangled in the slack of the line, I cannot sleep. It seems almost surreal. To think we are finally to this point in the wean. Two weeks have felt like an eternity waiting for increased intake.  Yet when each day comes with a different volume number, no matter up or down from the day before, triumph lingers in our hearts when we remember her intake fourteen glorious days ago.  It is working! No matter how much we wish we would have known then in the NICU what we know now, hind sight is always 20/20, what’s done is done, and it is what you do with the outcome that determines the future.

Day 15: oral intake 545

March 18, 2012

A weight has been lifted off my shoulders.  Though we know we are not at the “end” yet. We know our baby girl just took 18 ounces! That’s right! 73% of her pre-wean volume! What used to be tears of frustration and resentment that we had failed our Hailey Francis somehow, in learning to eat the natural way, are now tears of joy and happiness. Her hunger cues are almost like clockwork. She gets cranky . We offer her the bottle. She almost leaps for it with joyful relief, and takes 3 ounces at one time, with a happy baby when finished. So this is what it feels like. To not be tied down by a machine that rules our lives, and keeps us under house arrest.

Thank you Lord! We continue to place this in your hands, and have faith that you have wonderful plans for Hailey Francis.

Day 2

Whew! The storm has started. And it’s not really Hailey being cranky because she’s hungry. It’s the anxiety and stress I feel of her NOT feeling hungry yet, and NOT taking much more than usual when being pumped full. But we are standing strong and weathering the storm. Today our goal was to stop “trying to feed her” and just offer. Hailey is the boss, don’t we know it, and she will tell us when she is hungry enough to eat. I have become aware that many parents learn that their baby knows best after being awaken to this wean. Not every baby is the same. Even if they are the same age or even same weight, doesn’t mean they consume the same exact amount of food. Metabolisms are different. That even rings true from kids to adults. I know people that can eat more than me and weigh so much less. Some are just blessed in that area. So for us to expect babies to gain on a robot projector is unrealistic. Unfortunately, what else is there to go off of for tube fed babies? Now is the time to give Hailey the chance to dictate what she really needs to be consuming, to be in charge and have a higher quality life. Where before we barely had time in between tube feedings to play and work on tummy time, rolling over, and sitting up, and taking well needed naps that never got to be satisfyingly completed because we always had to wake her up for her next feeding time. I pray we have put those days behind us. Sitting this morning playing with Hailey Francis, I started to cry when I thought, this is really how it is suppose to be. No watching the clock to feed her at noon on the dot. No pumping her for an hour and her being so cranky of having to sit in one spot and not be able to move for that long forcing us to resent every ml she got. Hopefully, fingers crossed, no more retching that makes her, and us, cry, and knowing that’s how she feels when she gets full, negative. So far being full and soothing those hunger pains, if she has really ever had them at all, has negative consequences like retching. And being fed has never been a joyful time for her or us like it should be.

Here’s to going forward and never looking back. Keep those prayers coming, that Hailey Francis will start feeling hungry. We know she has no problem taking the bottle, because we have seen her take over 2oz at a time. She is just choosing not to still. We trust the Lord will give us strength during this storm.

The Greatness of the True God

Not to us, Lord, not to us

but to your name give glory

because of your faithfulness and love.

Why should the nations say

“Where is their God?”

Our God is in heaven;

whatever God wills is done.

Psalm 115:1-3

Day 1

Here it is, day 1. I have been so anxious to get this wean started. I have literally been researching this program as well as others, since we have come home with Hailey Francis with the Gtube. Now we are embracing this journey, ready for anything. Well maybe not ready, but trying our best.

We have gone back and forth with many questions to the doctor that is leading us in this wean. Prof.Dr.Dunitz-Scheer Marguerite has instructed us to keep pumping her night time feed of continuous 70ml/hr for nine hours, total of 630ml, and offering the bottle whenever she wants it during the day, and absolutely not tubing during the day. We are to throw out the clock and only go off her cues. This is a challenge since she has never had to give cues, nor us know what they are, because she has been pumped full of milk since day one.

During the day our original schedule was to turn off her continuous pump at 6am, after she had received70% of her daily need.  Then by 9am we were to start offering her the bottle, and then again at noon, 3pm, and 6pm. She ranged anywhere from taking 20-50ml, though her taking 50ml has becoming more a memory the past months than a reality. However, she was “suppose” to get 90ml at these 4, three hour increments. So naturally if she only took 20ml that meant we had to pump 70ml. This involved hooking her up to the pump and trying to keep her entertained for 45 minutes to an hour, leaving only an hour and a half until the next “scheduled feed.”

Prof.Dr.Dunitz-Scheer Marguerite told us to have fun and not be worried if she took near to nothing.  I have to say; not having to go by such a strict schedule was already so less stressful. But the part where she really did take near to nothing is to say the least, anxiety filling.  We are not overwhelmed yet with this challenging plan. Time will tell. We are to follow these instructions for 3 days.  As well as start trying more pureed baby food, which we have only tried a handful of times because of conflicting advice from doctors.

I wanted to post links to the two blogs that helped me research about this type of wean more. They are truly inspirational and have helped many other parents with their tubie.

www.thecrunchandthesmooth.com

www.lifeandtimesofstella.com

Fear not, O land!

Exult and rejoice!

For the Lord has done great things.

Joel 2:21

A new step in our journey with Hailey Francis

Hailey Francis is 8 months old, 6 months corrected!!!!  We have been home now for almost 5 months after spending 3 months in NICU. I remember everyday what it was like to see her so small, only 3 lbs 13oz, and not be able to touch her or even hold her as a mother should. That’s when I scoop her up now and cannot stop kissing her. Her smile lights up our world! She is smiling at me as I am typing this and trying to figure out this whole computer thing! J As many of you know, the only way we were able to take our sweet baby home in October was by placing a G (gastric) tube in her tummy to continue to supplement what she didn’t take by mouth by tube to her stomach. The surgeon that we were recommended never does a Gtube without a fundoplication. That has almost been harder than having the G tube sometimes. Because of the fundo she cannot throw up no matter how hard she tries. So those “spit ups” that babies usually are so famous for, Hailey Francis has none. It is something we have gone back and forth whether it was a good decision, but then again we really didn’t have a choice. When the formula gets pumped in to fast or we move her to quickly after being pumped, she wretches.  This is like gagging or choking, and is by far the hardest thing to watch. There is absolutely nothing we can do to help her. She just has to get through the spell and then she is better. But it hurts her and she cries, and so do we. They have assured us that it will grow with her and by the time she is a toddler you won’t even be able to tell she has it. They also said (they being doctors) if she gets the flu she will be able to throw up then, when she’s older. So my goal is to keep her from getting any virus that makes her throw up until she is much older to avoid the agony of not being able to throw up. Many parents ask on www.babycenter.com  whether or not to do a fundoplication.  It is really hard to say, but if I had it to do again I would avoid it at all costs. It causes my baby so much pain. Yes she was refluxing, but it was never tested as to how bad she was and if we could have gone home with an NG tube and tried to avoid all the scars from surgery, physically and mentally, and tried everything to control the reflux with different methods of medicine instead of surgery, that would be well worth the extra lost sleep.  Hind sight, after being on the www.babycenter.com  message boards, it all depends on where you are and how the medical staff practices with their experiences. Some doctors will not put in a gtube without doing a fundo, because having the gtube can increase reflux; while others will only do a fundo if the baby is severely aspirating, and causing him/her to get sick.

I wish we were given more and more and even more information about tube feeding and fundoplications. I did all the research I could while still battling with the neonatologists and being worn physically and mentally by the tolls of being a NICU mom. Those that have never experienced the heartache of not being able to hold your baby just after birth, or go home with your baby when you leave the hospital, and having to submit to allow strangers to take care of her from day one to day 100, will never understand. There was only so much knowledge I could gather in the time they wanted us to decided to schedule surgery.  I hope that by posting this I can direct other parents where to get the best researched information when it comes to making decisions like we had to make. And what better research than talking to those parents that have been through it all. Talk to as many as you can, because just one has only one outlook on their specific situation. I recommend www.babycenter.com

I first started on a message board called “Lovely Lovenox Ladies.” A few years ago I had blood clots in my lungs (Pulmonary embolism.) It is a very scary feeling when you are so out of breath and then the doctor calls you to tell you that you have so many clots in your lungs he cannot believe you are still alive. But the Lord prevails! And that is only one of many ways He has shown is grace in my so far short life. I know everything happens for a reason, and it is my faith in God that tells me I was suppose to go through that scary time for the life of another.  Having those clots and the painful recovery gave us the knowledge that I have a blood clotting disorder called Factor II mutation. This knowledge is why I had to get two shots a day of a blood thinner (lovenox) while I was pregnant, to prevent any blood clots that could have caused a miscarriage or any further clotting that could harm the baby.  When I googled about being on lovenox while pregnant, I really couldn’t find anything except for this message board. I talked to some women that had had 20 miscarriages before they found out they had a blood clotting disorder, because they had never had a blood clot in their life. I will stop here, for I could go on about this disorder. If you have any questions about this, message me.

Babycenter has a message board for almost anything. I have also been on the “preemie parenting” and “Babies and children with feeding tubes.” And it is because of these sites leading me to even more sites that Aaron and I have decided to do something drastic and not highly accepted here in the United States.

Hailey Francis is doing so well. She is sitting up on her own, for the most part. She is slowly rolling over, but the mic-key button (a low profile Gbutton) is uncomfortable and hindering her tummy time. However, she has stopped taking any milk by mouth anymore. She puts everything else in her mouth except the bottle. She is going down a common path for babies with gtubes, which is aversion to eating. You can’t really say she has an oral aversion, because she puts everything else in her mouth.  Through my research I have come to accept that she just isn’t hungry. We feel like now is the time to do something about it.  Whereas when she was still so little in the NICU, it was not even an option. We have been praying about what to do and the best way to go about it. We were sent home with the feeding tube with no plan as to help her to eat. Our schedule is: she gets 60% of her formula being pumped into her continuously at night over 9 hours, then we are to try giving her the bottle of 90ml of milk 4 times a day every three hours, what she doesn’t take by mouth (which is usually only 5-35ml) we have to pump in. Sometimes it takes an hour to pump in what she didn’t take, and that only leaves around another hour and a half before we are to start to try feeding again. This just isn’t working. Who ever came up with this schedule needs a BIG wake up call. You know this may work for babies that are severely ill and hanging have various things challenging them (I don’t like to say “wrong with them”.) For Hailey and many babies in the same boat, this type of schedule is wrong. We should have gone home still trying the bottle every three hours at least. From experience, this is my advice for those of you facing that hard NICU decision.  However, what’s done is done, and we are moving on with bigger and better.

We have decided to do a hunger based wean!

We have contacted the medical experts at notube in Graz, Austria! Go to the website to learn more. www.notube.at

We will be starting their netcoaching program as soon as possible.  I hope to be updating on our success story one day at a time.

The Serenity Prayer

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference

Trust in the LORD with all your heart
and lean not on your own understanding;
in all your ways acknowledge him,
and he will direct your paths.

Proverbs 3, 5-6

Miss Hailey

Well we have been home for a week now, and it has been great! Although we haven’t made much progress on her taking more from the bottle, we feel more relaxed and LOVE getting to spend more time with her.  She is pretty much a happy baby all the time, except when we try to feed her. Which is unfortunate, since that’s suppose to be the best time for her, but those are the cards we have been dealt. Aaron is still off work and we are enjoying every moment with Hailey Francis. She is progressing well in other areas. She smiles when we talk to her, and we can see those big dimples that she inherited from her Pau Pau! tummy time is still a little difficult due to the tube still bringing her some discomfort, yet she still loves this position and is getting stronger in lifting her head. And she will suck away on her arm, hand, and pacifier… as long as nothing is coming out like the bottle. She’s a little turkey that way! Turkey bird is her nick name, made by her dad, because of this unfortunate quirk of hers. WE are so glad to be home, but are still wishing and hoping for more progress with the bottle. There is a plan in all this yet… even though we may not know for years to come.

At her pediatrician appointment today we learned that she is now 9lbs 2oz. She is gaining very well outside of the NICU, which is very good news. Also with her corrected age (meaning the age she technically is from her original due date, Sept 7, being one month instead of three) she is in the normal percentile for her height and weight.

Thank you for all the encouraging words. We still are standing by our visitor policy. I know this upsets most that have not seen her yet. WE feel that we would much rather be over protective and her NOT have to return to hospital for a cold, or infection of any kind, than to be lenient and allow a few more visitors and risk any infection.

Thank you

P.S. birth/coming home announcements to be coming soon:)

Home sweet home

we are driving home right now!!!! So forgive any miss types from my iPhone and I have to keep this short for I’m about to run out of 3G. We are so estatic and sort of in shock. We knew it was coming but it here and still surreal. We have decided that although we are home now, we are still limiting visitors. Only those that could see her in the hospital can continue to see her. She already has been compromised and is still a preemie that could get sicker and be hospitalized for the slightest cold. I’m sorry for having to hoard her so protectively…. But we would rather be safe than sorry!

We are rooming in!!!

As I type we are rooming in with our precious Hailey Francis. Since surgery she has made a great recovery. However, the reflux is not fixed completely. We still hear stuff trying to come up,but the ever harder part now is watching her feel like she needs to throw up and can’t now because of the fundoplication. So far everything is good and her incision is healing well. More to update on when we go home later!!!!

Thanks for all the prayers… they have helped! GOD is GOOD!

HAPPY 3 MONTH BIRTHDAY HAILEY!

Yesterday morning, Hailey had the fundoplication and gtube insertion surgery. She has made a great recovery so far. She was taken off the ventilator not long after surgery, which was a very good thing that her respiratory rate was being sustained well enough on her own.  She is still doing very well and the nurses are keeping her pain down with meds. Since we know every nurse, charge nurse, and respitory therapists, as well as their schedules, we know she is being monitored very closely and taken very good care of when we are not their. the plan is for us to maybe be able to hold her at her 4 o’clock assessment this afternoon. We really look forward to that. For now we just hold her hand as she squeezes tightly and give her her pacifier. she has been opening her eyes and sucking  very well on her pacifier. starting tomorrow morning they will start to feed her through the gtube. Starting with 5ml continuously over an hour for every hour. Then every 8 hours they will add 5ml until she reaches 25ml. When this is reached she will be getting her full feed continuously… meaning the milk will be slowly dripping in over several hours instead of  67 ml in thirty minutes (which is considered a bolus feed, large volume at one time.)  By Saturday afternoon she should be to full feeds and depending how well she tolerates them then we may go to bolus feeds. When this is tolerated, we will later start to see if she wants to try to take the bottle. Estimated recovery time is usually a week. once we are taught how to care for her Gtube and get on a feeding schedule then we should be able to go home.

We want to thank everyone for your prayers and uplifting, kind words to help us get through this tough time. We know the tough times are not over. But by the grace of God we are able to endure and proceed.