Huge Set Back with My Baby

[torian0319]

Well...my daughter suffered a huge set back this weekend. She is the baby that was born on Dec 16th at 1 lb 7 oz due to PE/placental abruption. I received a call at 2am from her nurse stating that she had apnea spells every 10 mins. Prior to this, she was on room air, breathing like the rest of us, starting to feed by bottle, and can maintain her own body temp and weighed 3 lb 8 oz. So, the events that occurred this past Sunday was both disappointing and heart breaking. Of course I rush to the hospital and while I was there, surely she was having these spells. They had suspected that she had an infection, so they started her on antibiotics. By this time, my daughter had regressed back to CPAP due to her spells. But, eventually, even the CPAP was not working. I watched my daughter turn blue and they had to resuscitate her twice right before my eyes. I thought I was going to pass out in fear. They got a heart beat and respirations, but had to continue with the assisted breaths in order to sustain her. Her dr. came in from home and immediately intubated her. Now, my daugher who was without any assitance on breathing, feeding by bottle, gaining weight, on her way to an open crib, was now back on the ventilator. We found out yesterday that she has Group B Strep that has caused a swollen lymph node (mass) in her next with cellulitis, as well as pneumonia. A HUGE set back and heart breaking. When I saw her with the new vent and all the i.v./ pic lines etc, I wanted to die. The dr said that she was progressing well on the new antibiotic and she liked the way she looked compared to Sunday, but I am like, NO...I don't like the way she looks. My child is back on the vent, has pneumonia with her extremely weak lungs and body, and is in pain (they had been sedating her to ease her pain). From a medical perspective, it may look good, but from a mom's perspective, it is heart breaking and not good. Her calcium was low again and she had to have another (her 4th) bld transfusion. When I sleep, all I can see is her face turing blue and them resuscitating her. It is a nightmare. Thanks for listening/reading.

T-

[lola1971]

I am so sorry to hear this. How frustrated you must feel. It sounds like she is on the road to recovery and that the doctors can provide treatment. Did they say why she got sick?

Sending prayers and hugs...keep us posted and hang in there.

[sam10]

To see your baby not doing well is so hard, especially after progressing so nicely.I hope she will get better quickly. Sending you a big hug!

[tree]

I am so sorry to hear that she had such a setback. You both will be in my thoughts and prayers. I hope she can rebound quickly and get back on the path towards home.

[torian0319]

Thanks everyone. I have actually gone a whole day without crying. The Dr. said today that the pneumonia is gone and the mass in her neck has regressed substantially. She still has a puffy face due to all of the fluids. She is still on the vent, but only b/c they want to be able to help her move the secretions from her chest that can affect her breathing, since she cannot cough. She anticipates that she will take her off vent on Friday and that she will able to start back on the road she was on. I feel alot better today and appreciate your thoughts and prayers. It is nice to be able to vent. Have a good evening!

T-

[runninlola]

How wonderful to hear some positive news after I am sure must have been *. NICU experience is fraught with ups and downs, my Dr. used to say two steps forward, one step back... So, hang in there!

You'll be in my prayers.

[trish]

I am so sorry to hear she's had so many set backs but glad to see she is improving. Hang in there mama!!! Update us when you can. (((HUGS)))

[torian0319]

I thought I had posted an update, but it appears that it did not go through. My daughter (27 weeker, 1 lb 7 oz) is has been home since March 5th. We were so excited when she begun to eat all her feedings by bottle. I knew then that the count down was to begin, since she was also completely off the cannula. She had a few apnea spells while feeding that weekend, which depressed me b/c I knew the count down would have to start over. I called the dr and told her that the apnea spells occurred when the nurse tried to continue feeding her when she was falling asleep and another time she just chocked. What baby do you know that never chocks? Anyway, she agreed and said that my baby's only issue was that she could not gain sufficient weight on a formula less than 30 calories. I did not think that was just cause to keep her in the NICU when feeding issues and weight gain monitoring could be done on an outpatient basis. Needless to say, with my comments and the insurance company on their backs to send her home (since she was off supportive oxygen, taking all feeding by mouth, and was free of apnea spells), she was discharged on March 5th. We have been extremely happy and tired. Her first dr appt went well and she did gain weight on her first week at home. My only concern is that she has not pooped in 3 days, sleeps more than she did when she first came home, and is restless when she is awake. I also saw that she exhibited some sort of epilepsy epidose earlier this week, but I have not seen her do it again, so I figured it could be an isolated incident. Has anyone experienced any of these things with her baby when they first came home (within 2 weeks of coming home)?

[danielsmom]

I can speak to 30 calorie formula (or mommy milk with neosure and human milk fortifier to make it 30 cal). It's great for weight gain, but hard on their little tummies and digestion. After 3 days, my pediatrician would tell me to give him a suppository. You don't want to become dependent on those though. After my son got bigger and was on my milk plus Neosure powder, he'd go 7 days without a poop, and the gastroenterologist said this was fine because it was primarily breastmilk. Just be in close contact with her ped though.

Thanks for posting an update. So glad she's home.