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Help! When does the pain end for the baby? I've been in tears...
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Anonymous
OP here. Thank you all for your concern. As optimistic of a person as I once was, I am beginning to feel depression setting in. Friends and family has called to ask how things are going and I have had very little motivation to return any phone calls. Whatever little time I have is spent frantically searching on the Internet. I guess I'm hoping to find that one silver bullet that would be the answer to my son's feeding issue. Every 3-4 hours, I attempt to feed him again and with each time, I keep thinking that he would somehow just return to the feeding rhythm he had in the first month of life. But each time, I am left in much despair. Sometimes when he is able to take 1.75 ounces in a span of 40 minutes (basically he has to be extremely calm and in a semi-sedative state), I keep thinking we somehow have turned the corner. Then reality slaps me in the face when he returns to eating 0.25 or 0.5 ounces during the next feeding. My heart hurts so much as I begin syringing milk down his feeding tube. I know it isn't my fault that we are in this situation, but somehow I can't help but feel that I have failed as a mother to provide for my baby's most basic needs. It's even more disheartening with my 2-year-old distancing himself from me. He was sick this past week and in the middle of the night, I heard him calling out "daddy"; he normally calls out for me when he is uncomfortable. Moreover, I think my 2-year-old is regressing. We were so prepared when we introduced him to his new baby brother and the transition to a new member in our family went fairly smoothly. However, we were completely unprepared for this and I can see my toddler unfolding into regular tantrums. I have been hoping to get the two of them to spend a lot of time together but because my older son has been coughing up a storm, I fear having the two of them near each other. It might be too late as I had noticed the little one had a runny nose and was coughing randomly. He was so annoyed by his runny nose that this morning he batted at his face and managed to yank out his nasal gastric tube. In any event, to update you on my 2-month-old, we have gone for a second opinion at Children's. The Ped GI did not say much as he wants all lab results sent to his office. Furthermore, he would like us to consult with a Neurologist as well as set our son up for a Modified Barium Swallow study. I had asked the doctor what would happen if my son refuses to swallow as he really hasn't taken anything orally. The Ped GI looked at me baffled and said, "Oh, then we can't really do the study but our Speech Language Pathologist (SLP) perhaps can find a way to figure something out." Maybe it's a sense of hopelessness, but the Speech Pathologist we saw while our son was at the hospital last week was basically stumped. I am beginning to feel that perhaps my baby has forgotten how to coordinate the suck-swallow-breathe. I will post in another thread to see what help I can get from parents whose kids have had such issues. Is there a SLP that specialise in helping infants synchronising this innate reflex? As of now, the appointments for the swallow study as well as the neurologist is at least a month away. I am hoping the Ped GI can make some calls and advance our appointment. I don't think I would go crazy if I had to sit around for another month not knowing if progress can even be made. As depressing as things sometimes can feel, I am trying very hard to keep my head above the water. I kiss the big tape and the tube across my son's face and call it his "badge of courage". I am also thankful for the family, friends and the community I live in. You all have been kind. Thank you. |
Anonymous
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Wow, OP. I am so sorry. Once you are past this crisis your older son will settle down, don't worry about that. If it were my child I might try getting into KKI rather than Children's.
Is the baby gaining and absorbing the food he is getting? Are you doing breastmilk or Neocate at this point? Definitely talk to your own doc about a temporary antidepressant. It can really help make getting through the day easier. I wish the best for you and hope you get some answers soon. I am a prior poster who recommended the board http://www.kidswithfoodallergies.org/ Other moms there have dealt with your issues, there are several kids with tubes. |
Anonymous
Can you let me know how KKI (I'm assuming it's the same as the Johns Hopkins Feeding clinic?) is better than Children's? Since the Ped GI is at Children's, I was hoping to do all the therapy there as it might lend to better inter-departmental communication. However, if there is such a difference in quality of therapy, then I would definitely ask about KKI. |
Anonymous
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I have friends who have had more luck there. It really all comes down to what therapist you get there. I'd ask your doctors what they think of the 2 clinics.
Is your son growing now that his intake is up? Has anyone mentioned possibly doing genetic testing? |
Anonymous
| oops, meant what therapist you get here or there. |
Anonymous
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OP, I am so sorry and wish I knew you and could bring you a meal or just be there to relieve some of the stress. This must be tough. Can you send family and friends one mass email explaining that this is a hard time for you and while you wish you could talk to each individually, you really need their love and support at this time. Also, call your best friend or best, most responsible relative, give all the phone #s and emails you can, and put him/her in charge of setting up a calendar to bring over meals and (brief?) visits - just like you would if you had just had a baby and needed the community to come together around you? Maybe DS1 could also spend some time with a special relative or friend for some good one-on-one time and so he gets some solid attention. Spend about an hour on this tonight and it will help you out for the next few weeks, at least!
I'm sure you're beyond frustrated and heartbroken. I don't know if it's your frustration or depression coming through, and I get the impression that your docs and professionals really don't seem to be moving as fast as you need them to be. Whatever the case, you NEED to be the squeaky wheel, here... Yes, that's right - the squeaky wheel who gets that appointment sooner. If I were you, I'd be calling every day - twice a day! - to see if there's a cancellation and to get an appointment sooner. You mentioned before your husband is a doctor; does he have any colleagues who can pull any strings or who might refer you to another Ped GI who has dealt with this? You haven't failed your son - you have and are continuing to go to great lengths to see him through this. You are his champion and while this is terribly rough on your whole family, including DS 1, you are doing what needs to be done. You ARE feeding him, you ARE nurturing him, you ARE growing him with your love - and he can feel it. Please keep updating us; I think of you every time I check DCUM. |
Anonymous
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OP, you might wish to ask someone to set up a Caring Bridge website for you, while your son is going through this difficult time. It is a free website where you can update people as you have time.
http://www.caringbridge.org |
Anonymous
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another supporter here for KKI -I worked there but not directly in the feeding/eating disorders clinic but I do know they have a very comprehensive feeding program that has been successful over the years. Below is the contact information. I would try to get something scheduled tomorrow -at minimum you can get something scheduled while you continue working with Children's and hope you get answers. it may take a while to get something scheduled at KKI that is unless they determine your child meets criteria for inpatient hospitalization.
http://www.kennedykrieger.org/kki_diag.jsp?pid=1084 Good Luck |
Anonymous
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see here as well:
http://www.kennedykrieger.org/kki_cp.jsp?pid=1574 |
Anonymous
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We were at Children's for surgery when our DC was less than two months old. We were also referred to speech language pathologists there to see if the feed should be thickened (DC was having some choking while bottle feeding), and frankly, I found them not very useful. You MAY have better luck with the person we ended up consulting out by Tysons, who I believe helped our baby (though it's hard to say exactly how much was due to that, and how much was a function of growing and getting stronger). Her name is Suzanne Herbers and she is at 703-847-6098. She does cranio-sacral manipulation and occupational therapy, and can look at how suck-swallow coordination is working, among other things. Anyway, if you describe your situation to her over the phone, she can tell you if she thinks it's the sort of thing she might be able to help with.
Good luck. Our situation was nowhere near as bad as yours, but I struggled for a very long time to get DC to eat properly, and I know how stressful/frustrating it can be. |
Anonymous
| OP, I am so sorry you are going through this terrible time. It does remind me of something a poster said on another thread that helped me and reminded me of the time I was having feeding issues. Our LC told us not to worry about anything else except feed the baby at this point. If you have to use a feeding tube, please don't feel bad about it. Whatever what works to get food and nourishment to your baby. My situation wasn't anywhere like yours, but when my LC, Josie, told me that, I just broke down and cried because I knew she was right. Please hang in there. You are doing great. |
Anonymous
| I know this is far away, but have you thought of the feeding team at Children's in Philly? They are supposed to be very top-notch. I dunno, just grasping at straws fow you. I am sending prayers for you and your little son... |
Anonymous
| OP - do you have to get the barium swallow test done @ children's? Over the summer I was able to get scheduled in less than a week @ Shady Grove - my daughter was premie and has reflux as well. They have one person who handles pediatric GI tests and she was very good. I didn't think dd would swallow for the test, but they were very patient and knew a few tricks to encourage her. They don't have to swallow a lot. Hang in there. |
Anonymous
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OP - good luck to you. I can't imagine how hard things are for you now. All I can say is that it is likely to get better in the next few months.
I have 2 boys almost 2 years apart and I can relate a lot to your feelings about your older child, but trust me - regression is SOOO normal regardless of the situation. Let daddy take the lead with him for now while you are going through this difficult time with the baby. Your 2 year old loves you and things will improve. Good luck. |
Anonymous
| OP--Thanks for the update. It sounds like the way you are feeling is normal and what is going on with your older child is normal too. You need to try to take care of yourself as well. Try to get out a little each day if you can--it will help with your outlook. I know this is probably too obvious, but has anyone checked to see if the baby has an ear infection? I know that can affect eating/swallowing and some baby's exhibit no outward symptoms. I know it is a long shot, but just thought I would throw it out there. My thoughts are with you. Keep us posted when you have time. |