Any advice?

ksproul

My little guy isn't a preemie-yes, its me again but I need some advice for you all. I am having such a hard time enjoying him, I am constantly looking at him and hoping something wont go wrong. I'm almost always preparing myself for the worst. I talked to my gyno abt this and she prescribed me Zoloft and said its not PPD bc my fears are justified. I am always nervous around him b/c in his 12 weeks in this world he has been found with blue lips, diagnosed with GERD, apnea and laryngomalacia. He's had some bad choking spells due to gerd and had a weird spell that I had to call 911 for where he got stiff and went limp at night. He gets very pale while sleeping and I know his oxygen went down during his 2 sleep studies but that they arent worried about it. All of the docs I have talked to dont seem to think his conditions are that horrible and say he's pretty normal?! We were never given a reason for his apnea-just that it was prob related to him GERD. I have seeked advice from my friend-a nurse in the NICU, her nurse friends, 2 hospitalists, 2 diff pediatricians, a physicians asst in pulmonary office and a plumonary doc and all are just saying he just has some abnormal periodic breathing and he will probably be fine and will probably grow out of it. I dont really know what else I can do. I feel overly nervous and am always looking at him and can never leave his side b/c I'm always scared something will happen since it seems whenever I start to become comfortable then something does happen. I'm just so scared that something will happen to him and it will be my fault b/c I didnt do enough for him-but at the same time if that many people are telling me he will "probably" be fine then maybe I should believe them? I just don't want to make myself any more crazy

Anyways long story short- Brayden's apnea monitor has been a bigger comfort for me lately and the doc wants to take it off of him- I guess b/c he only has 10% periodic breathing now and the norm is 4-6%. I am asking them to keep it on one more month but after that insurance wont cover-so of course I will get a Snuza and send it to daycare-use in car and during sleep. I just want some advice on how you all handle everything? It's hard enough having a little baby, and being a first time mom but then to worry about their "special needs" it makes it so much more scary. I feel now like he is so fragile and then anything that can go wrong will. I spend so much time looking up conditions online without even realizing it. And I become nervous doing simple things with him-like changing his diaper bc during this he tenses up and stretches legs straight and becomes more pale so I'm scared his oxygen is dropping or something so I dread diaper changes! And then bc Im so on edge and nervous about everything I barely get any sleep and my DH gets ignored which put a strain on our relationship. But honestly, I'm either breastfeeding, holding him upright for 30 min after feeding, working, playing with him or sleeping so no clue how to add time in for us. I'm just looking for some support, help and advice if you have any coping methods. 

katie4253

Hey Hon,

I think it might be a good idea to look into counseling.  You are suffering from a lot of anxiety and stress right now.  I hope this doesn't offend you.  There are LOTS of moms on here who have had to seek counseling and take medications due to the trauma of their LOs birth and the issues they had in the hospital and even after discharge.  

You are in a hard place.  You have a full term baby, who has lots of issues.  I am sure you feel like you don't really "fit" anywhere.  Who do you have in your life who can support you?  Are you reaching out to them? 

-Katie 

JakesBride07

It sounds to me like you are doing everything you can possibly do right now, and maybe having someone to talk to can give you a different perspective and help you find time for you and DH and help ease your fears with your LO.

I do really understand where you are coming from with everything you are going thru, my DD has a feeding tube and I worried so much about caring for her and what if it comes out, etc. It has been overwhelming, but when I take time to sit back and think of all the positive and amazing things the twins have done, I realize how lucky I am.

Part of parenting is trial and error sometimes, finding something that will help relax LO while changing his diaper, maybe singing him a song or playing a game...will help you both relax, like maybe doing some leg exercises in distraction from him tensing up??? Might be worth a shot.

 Also the only other thing you can do is possibly consult a GI for the GERD, they may have a different approach that can bring you some relief as well for LO and yourself.

And most importantly you have to take care of you also. It's ok to take a break sometimes. Is there someone nearby that you trust with LO for a date night with DH? Is he open to communication and have you tried to talk to him about how you feel too?

SushiNoMore

I'm seeing a counselor for PTSD.  While I think it's normal to worry a lot about your child, that worrying shouldn't get in the way of you being able to enjoy any time with your son.  I agree with the previous poster that you sound pretty stressed out and anxious.  I felt that way for quite awhile (still do), and a counselor has been extremely helpful.

I think the hardest part for me was just making that initial phonecall to start the process. I called my OB, and they recommended a bunch of counselors.  I picked one, and she's been great at helping me sort through things.  I was SO fixated on the labor & delivery experience and the NICU experience that I was having a hard time bonding with my son.  Getting those emotions under control has made everything better.

It's normal to worry, but it shouldn't be crippling. 

urbanflowerpot

I'm so sorry - I know it's scary. I agree with the other girls - might be good to see someone. My house burned down (along with my cats) just five weeks before my premature birth so I'm familiar with the frantically high stress levels - however, I saw a therapist through it and feel good now. It's not like I'm "all better" - I have PTSD along with the anxiety/panic I had to begin with - but I'm greatly improved. DS was having 15-20 bradys per day at home as well as a few apneas. It was a LOT to take in. I guess I've learned to process this in a way that isn't affecting him. I don't let it interfere with how I am with him, if that makes sense. Babes can sense that sort of thing.

If you'd like to find me on FB you can find a link on my blog (siggy) - maybe it would help to get to know others who have dealt with the same baby health issues.

Hang in there.

Leigh71

My DD Lauren came home on oxygen/a sat monitor/and a cardiac monitor.  She was on oxygen for 3 months.  I couldn't leave her w/anyone b/c they didn't know how to help her thru her desats/reflux/bradys.

I did keep her in a PNP in my room at night and that helped me to relax enough to get some rest.  Her monitors went off... but I was close by and that made me feel better. 

Yes, your OB is right... that you have valid worries.  However, a therapist/psychiatrist can help you with anti-anxiety meds.  Even short term, to help you thru this tough time. 

Yes, the specialists are correct in that babies do grow out of having spells, etc.  However, it is still very, very stressful living thru the spells (desats/choking/reflux/bradys).  I hope you can find someone you trust to talk to/help you out.  I'm sorry you are having such a hard time. 

kck329

Just another voice of support here. My DD did not come home on a monitor but after 10 weeks in the NICU I was terrified of not having her hooked up to one. I actually had them run extra tests to convince me she didn't need one. I still freak out about her reflux and breathing issues on a regular basis.

That said, I think PPs are right and it would help you to see someone. Your OB is right about PPD but it sounds like you have Post Partum Anxiety instead. Many of us on this board struggle with PPA and PTSD (myself included). Talking to someone who can help you manage your thoughts makes a big difference. There are also medications you can take (even safe for EBF).

Do you have a support system at home? That would help too. Also, please feel like you are part of the group here even though you don't have a preemie. We know what its like to watch your baby stop breathing and we've had (and still have) the same panicked feelings you have now. 

ksproul

Thank you so much for all of the kind words and advice-I truly appreciate it. I am just so nervous that something will happen and it will be all my fault b.c I didnt do enough. But I am trying to remind myself that whatever is meant to happen will, and I have done all I can to keep him safe and will continue to do so. I am going to get a referral to a GI specialist b/c his GERD hurts him so bad and the Prevacid isnt working I hope that all of the docs are right and wouldnt take him off his apnea monitor is he wasnt truly ready And as for support-I don't have much of it right now. My DH just takes on the attitude of "everything is fine. he will be fine" but then it makes me feel like all of the worry is placed on my shoulders And my family lives 2 hours away, they come to visit a lot and soon we will travel to see them--but my mom worries even more than I do so that doesnt help. And my friends all don't know what to say and when they worry about him then it makes me worry more I do have one friend that is very helpful and understanding-shes  a nurse in NICU-but I dont want to keep bothering her b/c she has a hectic schedule. So having this support through you all means a lot. I'm sure you will hear more from me and I appologize for my obsessive worries. You all have been through a lot and I know that you are strong women so it helps to feed off of that energy. Thanks again!