Baby in NICU

jenniferp

New member
Hi everyone,
Andrew was born on 8/27/05 at 39 weeks. Some of you may remember he was showing a dilated bowel (we knew he had CF) at my 34 week L2 U/S, it was dilated 1 cm. At my 36 week L2 u/s it was dilated 1.7 and at my last u/s at 38 weeks it was dilated 2.6 cm. Unfortunately, as many of you have experienced I could not get my dr to do ANYTHING. He was measuring big through my whole pregnancy, and at my 34 week appointment he was 7 lbs and 8 ozs. My dr had originally said he would induce at 38 weeks but he said he couldn't do it, AFTER my husband and I showed up, bags packed and ready for labor on Monday 8/22/05. We begged and pleaded with him and the Perinatologist but both were too afraid to make a decision, my Perinatologist actually said some babies can dilate up to 5 cm!! Can you imagine that? A baby's bowel is normally as big around as the tip of your pinky finger.
Well they finally decided they would induce me on 8/27 at 39 weeks, but on the evening of 8/26 I noticed my baby wasn't moving, and hadn't been active all day. I got kinda nervous about it and my husband insisted we go to the hospital, so at 9:30 pm we were hooked up to the monitors. I was so relieved to hear his heart beating, but terrified to learn it was beating 198 bpm. They ordered an u/s which revealed he wasn't breathing or moving and he had fluid in his abdomen. They called my dr and an Obstetrician, my dr was a general practicioner. The obstetrician then contacted the Perinatologist and a decision was made to do a c/s, only the hospital with a NICU is 2 hours from here and the rain was coming down hard. They couldn't send a helicopter so we had to wait to do the c/s until they were 10 minutes away.
Finally, I was wheeled in for delivery at 1am and at 1:30 my son was delivered, and he wasn't breathing. It was the most horrifying experience of my life, I could hear them working on and requesting different things but I didn't know what they were. I kept looking to my husband to tell me what was going on but he couldn't see anything. He started crying (he never cries) and that was when I began to feel like I was watching this happen to someone else. I turned my head just in time to see them rush out of the room holding his lifeless body.
They wheeled me into a recovery room and finally one of the dr's came in to say that he was stable and they would bring him in before they left with him.
They brought him in for a minute and we got to say goodbye to him and they left, and my husband left right behind them. It was so hard to be stuck at the hospital all alone and with no baby and no idea if he would pull through this. At 4am I got a call from the hospital asking for permission to do surgery to remove blockage, then I got another call informing me he had a seizure and they were going to sedate him. They fear the seizure may have been caused by brain damage from not breathing for 5 minutes. Then I got another call advising his kidneys were not working due to the same reason, lack of oxygen.
He has been sedated since his surgery, his kidneys are now working great but we don't know about his brain yet. He is recoverying well from his surgery, he has a colostomy bag. I can't wait for the day he wakes up, they have stopped the sedation medication 2 days ago but he hasn't woken up yet.
I was told by his surgen that his bowel had ruptured prior to birth causing fluid to fill in his abdomen and causing stress to his heart and lungs which caused this whole nightmare. I feel very cheated by the medical profession right now, I feel like this could all have been avoided if they would have listed to me and I'm very angry about the whole situation. If he would have been born on Monday he would have needed the surgery but we could have avoided everything else, especially the brain damage part. That is really hard for me to think about right now.
Please keep us in your thoughts, Andrew is a fighter and I know he will pull throught his, he just needs hope.
Oh, he was 11 lbs 2 ozs at birth and now weighs 12 lbs and 15 ozs! BIG boy!
Jen
 

julie

New member
Jennifer, contratulations mommy!!!

I am so sorry to hear that things worked out the way that they did for you, I will keep the family and your baby boy andrew in my thoughts and prayers.

Can you refresh my memory, are we talking military doctors here? If so, not that you would want to, but if it makes you feel any better-you can file a medical malpractice suit against them. The first thing you/your hsuband needs to do (ASAP!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!) is get copies of your medical records before anything gets "lost" changed, deleted, removed, altered..... You can file a complaint with the doctors supervisor, the hospital... I would encourage you to do soto ensure that this doesn't happen to anyone else.

I will pray for you and the baby and your husband, and your step-child through all of this. Keep us informed when you can, I bet you are exhausted!
 

JazzysMom

New member
All I could do was cry for you. How I wish I could erase the pain, worry & anxiety. I believe you need to gather your thoughts & start the process. Will it change what happened? No....Can it help you or your son in the future? Maybe. Depending on the outcome for your son, he might have even more needs than CF. Little ones are very strong. For what its worth...my thoughts & prayers are with you & your family. My daughter & I will say a prayer at bed time for little Andrew. I remember not being able to hold my daughter after my c-section altho I got to see her. There was no medical reason for my not being able to hold her. It was just how they had me set up with IV in one arm, blood pressure cuff on the other. In the meantime you take care of yourself. You have been thru a lot also. Congratulations on a new baby boy!<img src="i/expressions/face-icon-small-happy.gif" border="0"><img src="i/expressions/heart.gif" border="0"><img src="i/expressions/face-icon-small-smile.gif" border="0"><img src="i/expressions/sun.gif" border="0"><img src="i/expressions/face-icon-small-wink.gif" border="0">
 

CFHockeyMom

New member
Jen,

Congratulations on the birth of you new baby. I'm so sorry he's having a rough start and my prayers are with you.

Not that a law suit will change anything now but it certainly seems like you have grounds. I'm not a believer in suing just because things don't go your way but this is a case of gross negligence on the part of your Dr. Take Julie's advice and get all the medical records now and I'd get an attorney ASAP. I know it's not what you want to or need to focus on right now but it will be easier to get "accurate" info now rather than later. Like I said, I know it won't change anything for you and your family but that Dr. needs to be held accountable.

Please let us know how Andrew and you are doing.
 

julie

New member
CFhockey mom relayed what I was trying to say a bit better.... you may never feel like pursuing a suit, but if for some reason you do-it will be a nightmare to get your records then. Also, I remember a while back you were telling me about problesm you were having with the doctors, so I don't think this is a new thing and if you have the time and energy, I would encourage you to do something about it. The military doctors need tunderstand they can't get away with stuff just because they are in the military.

I will keep praying!
 

anonymous

New member
When my daughter was diagnosed , the only doctor in Fort Worth that handled Cf was going on vacation so we were taking her in twice a day to the hospital to get treatments. One night she was doing really bad so we took her to the emergency room and tried to get them to understand how serious it was but they sent her home anyway. The next day we took her to get her treatments and she took got worse. I had taken my son to the bathroom and one of the head nurses was there and asked how she was doing. I told her she wasn't doing very well, she did not tell me she was going to do this but she went right down to the room she was in and told us that any time we were not happy with what they were doing to tell them because we were paying the bills and that this baby was not leaving this hospital till something was done. We ended up rushing her to Dallas where she they almost didn't put her on a respirator because they thought she was too far gone. What did they know? She lived to be 22 years. She passed away last year. Anyway what I am trying to say is sometimes you have to get mean and insist things are done . Since that time we have fought a lot of battles for her . Its sad you have to be this way but this is your child and you do what you have to. I really hope your baby lives a long life and I feel your pain.
 

anonymous

New member
To the previous annoymous poster-
How do you go on after losing a child? Where do you find the strength? I can't imagine a greater loss in the world. I sometimes wonder how I will ever cope with life if I lose this child. It so scary. I know there are no guarantees and I could lose my other children just as well, but this is different.

Julie- Yes, they are military doctors. My care was given to a general practicioner when I first found out I was pregnant. After the baby was diagnosed (amnio) my Perinatologist recommended my care be transfered to them, or that I give birth in a hospital with a NICU, this request was DENIED by my GP. He never even transfered my care to the OB. The OB who delivered me said that when a GP is on the phone with a specialist regarding maternal care that should be a clue that I need to be transfered to someone more experienced.

How do I get my records? Where do I request them?
Thanks for the advise.
Jen
 

anonymous

New member
It's really hard when you lose your child but I keep telling myself that now she is in not in pain anymore and I still have my days when it is really hard and its been almost a year. Her last few days were really rough. She lived 2 days after they put her on the respirator and they brought her back once because we were waiting for her brother to get back from Iraq. He arrived on Friday afternoon and she passed away on Saturday. The doctors said she probably was holding on till her brother got here. I have my memories of her and the things she taught me I will never forget. She was the most amazing person I ever knew. She donated her body to science because she had a bad case of Cf and she thought maybe her doing this would help someone else.
 

julie

New member
Jen,

You have to fill out a request and sign it. Since you might be stuck at the hospital for a few days, see if your hubby can pick up a release from the Military treatment facility (usually they have a records vault, you can't just get it from the doctors) fill it out, sign it, give him a copy of your military dependent card and he should be able to get it. The other thing to do, go to your (or have your hubby) GP's office and talk to one of the front staff or a nurse. Actually, see if you can find an HN, HM3, HM3, HM1 (tell them another hospital corpsman instructed you to do this) and ask them if they utilize a system called CHCSII (thats roman numerals-2). If they do, the doctor should have input your entire visit into CHCSII and they should be able to print you a copy. I would recommend doing both of these things sooner than later, things have a way of disappearing when something goes wrong like it did with you.

You have this site to pull up your old posts if you need a log of what went on, and I have emails back and fourth with you if you need those, I have saved them. Hopefully, that will assist you if you decide to pursue this.

Next, talk to patient relations at the Miltary treatment facility and GET THEM to listen. Tell them you are very serious about brining chages against the doctor, and ask what they are going to do to make it right, to prevent it. But when you talk to them, make sure you have your timeline in hand (I remember you telling me you had been repeatedly requesting to be transfered to an OB, they refused to do it...) BTW, someone should have told you, YOU NEVER EVER EVER need a referral to see an OB in the Military, dependent or active duty. It is a WOMANS RIGHT and the fact that your doctor never told you that is against their hypocratic oath.

Hope that gives you a starting place....
 

jenniferp

New member
Thanks Julie- I left the hospital one day after my c/s and against the OB recommendations, but she understood. I had to get to my baby, but I have paid the price, walking the floors of that huge hospital has nearly killed me. My husband and I are staying at the Ronald McDonald house (what a great place, I never knew) to be close to the baby.
When I request my records, do I request all of them? or just my maternity care?
Thanks Jen
Oh, I'm going to try to change the photo in my profile to add a picture of Andrew, hope it works.
He is hooked up to so much its a little intimadating. He looks like the back of my computer, so you have to look past all of that to see the most presious little baby ever.
 

CFHockeyMom

New member
Jen,

Glad you added the pic. He's a cutie and what a chubby little fella! I'm sure that extra weight will help him win his fight.

Anonymous,

Even though your daughter is no longer with you and I can't imagine the pain of losing your child, you must take some pride in the fact that she donated her body to science? That was a very curageous thing of her (and you) to do.
 

anonymous

New member
Congradulation's on your son ......'

Unfortunatly alot of doctors dont listen . I hope your son the best but try not to think to much about the brain damage right now you will now soon enough when he wake's up . It shouldnt be to much longer it took my son a few day's after they took him off the paralitic they were giving him .My son was born with Bi- lateral cleft lip and palate and we didnt know he had CF as well . We started seeing doctor's immediatly for the cleft I think we were at about 3 per week at the same time he couldnt keep milk down would spit it up kept asking the doctor oh it's okay and he started not gaining wieght I think he did gain 1 pound above birth wieght and that was it and then after a few week's and things happening I had break down he was lifeless, white, and we had just went that monday to the neonatologist and he said oh he's fine ,but anyway I broke down on wednesday and called Children's Hospital gastroenology and they said bring him on Friday . Thank GOD we did she addmitted him immediatly and said just a few more hours' and he would have died . HE went in for failure to thrive and had a fundoplication done and a G-Tube put in (feeding tube) . brought him home started gaining some but not much then he started having breathing problem's at this time his cleft had not been fixed because he wasnt stable enough .A month later my husband took him to the New pediatrician becasue he was slapping his head and there just wasnt something right I was going to work my mother went with him and they called me saying he stopped breathing when they got there and they were going to Children's . We had just had him there week before for his breathing and did xrays and all well when they did them again he had pneumonia .Took him to PICU he was there for the next almost 8 week's the mucas had took the form of his lung and wouldnt shadow in xray's so they didnt' know he kept plugging and not breathing they didnt know why . They tried moving him to a different floor when they did he stopped breathing in elevator on nurse she ran out yelling for help and as she was trying to clear his airway she pulled out a bunch of mucas . She told the doctor's she thought he might have CF and to do a sweet test and they did but they did a DNA to make sure which took 5 week's to get results' back but in the mean time they treated him with CF meds. He was still not breathing good and he still had cleft then one day i stayed the night and my husband came in and relieved me I wasnt home one hour and got the call to get back Hunter had stopped breathing and they were having problem's .It was usualy and hour drive it took me 20 minute's total and I was in PICU . They couldnt get him intibated because of the cleft had to get anestethia to come down when they fianaly got the tube in he took a breath and they blew his lungs so then they were putting tubes in 2 in one side and one in the other. He was 5 months old . They also stopped counting at 20 minute's that he was down they said it was about 40 minute's and they didnt expect him to make it and asked what I wanted to do . I said as long as he has brain function and they thought they could save him do whatever it took . He made it through I counted 13 lines of meds going into him not including tubes in side and mouth they were everywhere . They also paralyzed him to keep him still he was like that for about 5 week's .

He is now 2 and half years old will be 3 December 3 rd yes he has CF, brain damage . Cerebral Palsy blind in one eye and will have to have a prothesist put in in few years because they nerve and tissue will go away .He cant sit up he has problem's eating by mouth he is still G-Tube feed mostly and has therapy 4 time's a week but he is HAPPY AND LOVING he will walk eventually. he is very smart with all the problem's . He is starting to act like a 2 year old does. I wouldnt' have missed this for the world .HE IS getting stronger day by day and the doctor's are alway's in awe when we see them . We dont' go as much as we used to because he is doing good . He used to get Bronchoscopy's every 3 month's to clean his lungs from CF mucas but they say we can go to every 6 months then we will work on every year but when I tell the CF doctor he is congested they listen the CF doctor is also his Pulmonologist and his wife is my son's Rehibilitation doctor . He has right at 13 doctor's he see's it's alot but he wouldn't be here with out them .

I have also had my share of the one's that wouldnt' listen as well you just have to put your foot down and tell them .You must understand you will be the one with your child and you know your child the best and if you feel something needs to be cheked then they need to do it .


I wish you all the best
Sonya
 

julie

New member
If they give you a hassle (say it will take a long time...) when you try to get all of them, then I would narrow it down to the maternity care. Also, try to go to the GP's office and talk to the front desk staff (if you can find a corpsman (HN, HM3, HM2, HM1) tell them another corpsman sent you and ask if they can print you off the doctors notes from CHCSII.

Take care, I will be away for a while but will check back as soon as I return!
 

jenniferp

New member
It's funny how just when you think things can't possibly get any worse...they do.
The Dr. informed us today that Andrew took a big "hit" to his brain. They did an EEG and an MRI and it looks like the lack of oxygen has really altered his fate. Although she didn't say the words, "Cerebral Palsey" I believe that is what were dealing with. She said the official report hasn't been turned in yet, but she spoke with the guy who read the results. She told us the white part of his brain mass shows some bleeding, she said this part of his brain controls his motor funtions, like his ability to crawl, walk, sit up, and things like that.
I feel so angry, I had a perfectly healthy baby and the inability of my doctors to make a decision has left my baby brain damaged for life. I don't know whether to cry or scream.
Jen
 

JazzysMom

New member
I am so sorry to hear that things arent going the way you had hoped. Stay Strong! I dont think you are in a mood for a story, but I do have one to share when you are up to it.
 

anonymous

New member
Jen
I wish I had words to say to you, but I was angry just reading your original post<img src="i/expressions/face-icon-small-mad.gif" border="0"> so I would probably just add fuel to the fire and you don't need that.
What's bad is...even if you do sue & I don't blame you a bit, it won't help your son's condition, but it sure would make it a lot easier financially and it sounds like you definately have a case for malpractice.
I'm sure that your posting this will help other parents to stand up for what they believe in and for what their gut is telling them. Some doctors think they are 'all knowing' and that's just not the case, they are just human like the rest of us. It's just that it's so hard to stand up to them & demand something.
Please continue to come here for support and let us know how it is going.
I know a lot of us are praying for your family & your son.
 

anonymous

New member
Jen

I read your post and I am so upset that the doctor would not listen to you! I had pretty much the same situation with my son, the blocked bowel-- then burst bowel, the stoma bag -- just alot of the same things and the photo of your precious little guy brought back a lot of bad memories. I am not going to go into all that right now, you have a lot on your plate! Thank goodness for the Ronald McDonald house! Just hang in there! You are in our Prayers! Keep us updated.

Angie
Step- Mom of Brittany 13 no cf
Mom of Tyler 12 no cf
Mom of Brady 4 with cf
Mom of Taylor 3 with chromosome 9q 21.2 q 22.1 deletion
 

anonymous

New member
Our thoughts and prayers are with you and your baby. I cried when I read your post, and understand your disgust with the medical world. Aside from the ugly world of cf, I have a friend who was paralized because of drs neglegence. It can leave you bewildered, angry, sad, and in a turmoil of emotions. When you are unable to "do anything about it" you are desperate for answers and actions. I am sending you a great big hug and a gentle snuggle for Andrew.
 

1princess

New member
I am so sorry to hear about Baby Andrew. He looks adorable from the little picture you attached. I wish you and your family peace, comfort and strength as you go through this difficult time with your son. I have been reading on the message boards for over a month now, but this was the first time I decided to log in. I have had so many questions answered since reading the message boards, but have many more for you all. Please keep us updated on Andrew's progress. My family will keep you all in our thoughts and prayers.
 

anonymous

New member
Jen, I am SO SORRY to hear about all of this. Andrew has been in my prayers and we are all hoping for the best.

Take Care and Hugs,
Kelli (mom to Sydney 2 wcf)
 
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