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.