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Do you ever feel guilty? (child loss ment too)

Are you part of the NICU club? Do you have a child who is still struggling with the effects of being born too soon from preeclampsia? Share your concerns and stories here among parents who have been there.

Do you ever feel guilty? (child loss ment too)

Postby missgamecock » Mon May 18, 2009 10:07 pm

by missgamecock (6064 Posts), Mon May 18, 2009 10:07 pm

I have been going through a lot of guilt lately. One of the reasons we waited 6 years for Sara was because Kirsten was very very sick as a baby with severe asthma and immune system issues. She was constantly sick till she was about 5 years old. I spent many nights holding her because I was afraid she would stop breathing because her asthma was so bad. Being that we have a small local hospital. The ped lived a couple of doors down from us. I was a pretty smart mom regarding asthma. I was allowed to keep her home and take care of her with the understanding that I would get the ped in the middle of the night if need be. I was told to just knock on his door. Small town so everyone knows everyone else. I always felt guilty that I didn't keep Kirsten in longer. That maybe if she had been full term she wouldn't have been sick. I got sick too fast with her and I know logically the only choice was delivery or die.

With Sara, she has been pretty healthy. Her worst day with asthma and breathing and immune issues were literally Kirsten's best day. So I thought maybe a one time thing?

Now we have Cate. She has breathing issues, allergies and immune system problems too. She is just as bad as Kirsten was. We have her constantly on a nebulizer. She takes benadryl every single day. This time around I already have her scheduled for an appt with the asthma and allergy clinic at Children's instead of waiting two years. New dr that we adore for our pcp. She was surprised that they took her so young. When I explained our family history and she was premature and I had pe. They made an appt immediately. Now that guilt is back.
This weekend was rough. I am still recovering for surgery. Cate was really really sick all weekend. To the point she was being nebbed every hour to 2 hours. She's on prednisone, albuterol, tylenol and motrin (fever of 101-102 on tylenol), and she is now on benadryl 4 times a day. I held her all weekend. Saturday morning dh threw out his back. He couldn't even move. So we had him in the ER sat morning.

Then Saturday night around 730pm, Cate started turning blue when she was coughing. Her lungs sounded terrible. She had a really wet cough. I thought she sounded like she had bronchitis or pneumonia. So I called the hospital. Found out our dr was on call. Thank God. I was on the phone with her several times Saturday night. She gave me a plan to get her through the weekend and to avoid the ER and hospital. As an asthma mom, I have been through this and know how to do all the things. I already had all the tools at home. I held Cate all weekend so she could breathe and because I was scared she would stop breathing. Dr was like call if you need me.

So I brought Cate in today. This morning I ended up getting trigger point injections in my shoulder (car accident injury that flares up and becomes painful and swollen occasionally). The holding her all weekend really aggravated it. I was telling the dr how worried I had been because she turned blue. I had been worried she would stop breathing. Turns out that she had just gotten a call from the ER because a 3 mos old baby had died of apparent sids. They called to see if there had been problems with the baby. Mom put baby down for a nap and found the baby blue. She said she had thought of Cate when she got the call. She said she was really really glad that I had called her this weekend and held her all weekend even though I ended up needing 6 shots in my shoulder. I feel horrible for that mom but so grateful I didn't put Cate down.

I feel so guilty I couldn't keep her in longer than 36 weeks. I know I kept her in longer than I should have as they wanted to deliver at 34 weeks 6 days and basically gave me an ultimatum (labs every 2 days until I became an emergency or deliver now with amnio while stable). I just wish I could have given her extra time. All three kids have asthma and breathing issues and immune issues. Kirsten and Cate the worst. I feel guilty when I see her struggle. My head says one thing and my heart says another. Everyone says 35-36 week babies are ok. They need all the time they can get. I wish I could smack these people that want to have their baby at 35 weeks because they want a cute small baby, don't want to have a big baby at delivery, or they are tired of being pregnant. I wish I could smack doctors that say 35-36 week babies are full term. They are not. They need that time.

Sorry. Just needed to let out my guilt about her being early. I know there are babies way more earlier than mine. I am grateful they got as far as they did. It's just tough when they are constantly sick and have immune and breathing issues. I hate when people say, well if you had kept her in longer. Like I had a choice about it. Thank God our doctors don't do that. She said you are a great mom today. I did everything right including calling her. Basically, don't hesitate to call. She said she was so happy that I held her because of that one baby that passed. That mom is going to need a lot of extra prayers.

Cate was 11lbs 14ozs. She is 15% for weight and 27% for height. She was pleased with her weight because she was not on the chart when she was born and now she is. Her lungs sounded like crap according to the dr and she understood why I had been so worried. She said I was one of those moms that know what to do with these types of kids. I had the tools, I just needed to know how much meds. In addition to the benadryl, albuterol, prednisone, she is adding in pulmicort. I was like ahhh a blast from the past.

Thanks for letting me have a pity party.
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Re : Do you ever feel guilty? (child loss ment too)

Postby ladybug76135 » Mon May 18, 2009 11:14 pm

by ladybug76135 (599 Posts), Mon May 18, 2009 11:14 pm

Ahhh, the guilt trips we give ourselves over delivering early. I'm very acquainted with those myself. I'm sorry you're faced with this- asthma is way scary. I have 2 kids with bad asthma- the first 28 weeks and the 2nd 37 weeks. I have horrible allergies and asthma and my husband just has allergies so I blame it on 2 adults with crappy genes combining to make 2 kids with even worse genes! Plus, throw in all the environmental factors (pollution!) that have increased over the past few years and they are walking time bombs.

Don't guilt yourself over them being early... it'ts not your fault and you certainly did a fantastic job baking them as long as your body could hold- many of us would have folded and cried "uncle" long before you did. It honestly sounds like you'd have 3 kids with bad asthma (or 2 bad and 1 moderate) even if they had all gone to past-term!

Hang on... I hear that some of them do eventually outgrow it (I'm still waiting at 38 though).
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Re : Do you ever feel guilty? (child loss ment too)

Postby fiona » Tue May 19, 2009 01:26 am

by fiona (5767 Posts), Tue May 19, 2009 01:26 am

I'm always amazed it's my 36-weeker who has all the breathing issues and Jay (after the initial few months) got off scot free.

Sounds like the weekend from * - hope you all feel better soon.
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Re : Do you ever feel guilty? (child loss ment too)

Postby hols537 » Tue May 19, 2009 06:34 am

by hols537 (1031 Posts), Tue May 19, 2009 06:34 am

Wow, that sounds like a rough weekend. I hope things start improving. Try not to let the guilt get to you. Do the experts say these problems are a result of prematurity? I'm with Robyn, odds are your kiddos would have been in the same boat even if they had another week and were term - if I recall, Cate didn't have any breathing trouble at birth, right? Keep up the good work, nurse mommy!
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Re : Do you ever feel guilty? (child loss ment too)

Postby missgamecock » Tue May 19, 2009 07:34 am

by missgamecock (6064 Posts), Tue May 19, 2009 07:34 am

She had to be bagged but was otherwise fine. She was bagged because the cord was around her neck twice.
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Re : Do you ever feel guilty? (child loss ment too)

Postby caryn » Tue May 19, 2009 08:39 am

by caryn (10178 Posts), Tue May 19, 2009 08:39 am

I wouldn't say it was necessarily prematurity that was causal either; Oscar was a few weeks earlier than Cate, and my little brother who was 10 pnds 9 oz at term is the pre-asthmatic with the bad allergies.

What a rough weekend.
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Re : Do you ever feel guilty? (child loss ment too)

Postby annes » Tue May 19, 2009 09:04 am

by annes (2527 Posts), Tue May 19, 2009 09:04 am

So sorry to hear that Cate has been having all of these issues :(. Sounds like you are being a great advocate for her, make sure you take care of yourself, too. Hope she is feeling better.
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Re : Do you ever feel guilty? (child loss ment too)

Postby amanda » Tue May 19, 2009 12:26 am

by amanda (2216 Posts), Tue May 19, 2009 12:26 am

Sabrina -
((hugs)) I'm glad you held her all night too - it sounds like you did absolutely the right thing. One thing - have they tested Cate's IGA level? I'm asking because IGA production goes until age 2 and some children with lower 'base' levels have many of the exact same symptoms that you are indicating Cate has. (Please note though that just because they might have a 'lower' level of the base it does not, and in fact usually does not, mean that they will have the entire disorder.) My middle daughter does have IGA disorder and has some pretty gunky lungs but they are way, way better than they were when she was little. When we went to the pulmonogist he said that they watch it for at least the first two years because IGA production DOES increase as babies get older. It's a blood test - or at least that's what I remember.

Anyway, something to think about.

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Re : Do you ever feel guilty? (child loss ment too)

Postby missgamecock » Tue May 19, 2009 11:07 pm

by missgamecock (6064 Posts), Tue May 19, 2009 11:07 pm

I think honestly them being early has something to do with it. Amanda, I will definitely ask the asthma and allergy clinic when she goes in July to test that for her. She still sounds terrible. After what the dr told me about that other baby, I was only too happy that I did hold her the entire weekend. It certainly freaked me out when she turned blue. Our dr was great about it. Told me to call ANYTIME. Insurance is being a PIA with the pulmicort. She is supposed to do it twice a day, but they will only cover once a day. So the doctor is doing a medical justification. She probably just needs the right med combo and will be fine. It took 4 years to get the right med combo for Kirsten. Kirsten has outgrown a lot of hers. We still have to watch her. She isn't medicated like she was when she was little. Kirsten also had endocrine problems (wasn't growing and was failure to thrive. She weighed 15lbs 3 ozs at one year!) She also had an immature circulatory system that caused her to turn blue. These were related to her being early.).
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Re : Do you ever feel guilty? (child loss ment too)

Postby clayjmw » Sat May 23, 2009 06:16 pm

by clayjmw (16 Posts), Sat May 23, 2009 06:16 pm

For a long time and sometimes still do feel guilty. To me when I was in that frame of mind when my daughter was born still, was it was all my fault...I was susposed to keep her safe and I didn't so yes I do still feel guilty
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