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NICU Support

How to AP a baby you can't pick up . . .
~ A Message Board Archive
From Christyne ~ I'm just trying to plan for the future, so bare with me. I went for a fetal echo last week, and was told that little Jonathan has Hypoplastic Left Heart Syndrome. Consequently; he will need surgery shortly after birth. I have seen some pics on the internet and know what this poor little wee one will look like after the surgery - tubes and wires everywhere. So, how can I practice Attachment Parenting with a baby that I can't pick up? He will be in the NICU, so I don't even know if I can room in with him. Any advice would be great!!!

From islandmom ~ {{{hugs}}} My sister's little boy was in the NICU for 2 weeks after he was born premature. She pumped breast milk for him, and that is what he was fed. She also was able to just stroke him, and talk to him and just sit by him . . . All of those things would be very AP. Just love him as much as you can, and follow your heart. Good luck to you, and your baby. I am sure he will be recovered before you know it. I just wanted to add that my nephew is a very healthy 15 months old today, who is still breastfed, co-sleeps, and is very happy. The tube feedings, and time in the NICU didn't do anything to hinder their bonding; my sister thinks the time there was special for them.

From mmcbride ~ Sorry to hear your son will be in the NICU for the first little while. I'll be keeping you both in my thoughts. I've had no experience with NICU but how about making some tapes of your and dh's voices to leave in the isolette. Read stories, tell him about you etc. Tape pics of yourselves up, hold his hand as much as possible... You'll have plenty of time for carrying him around when he's out.

From JenT ~ My DD was in the NICU after birth and I had many of the same feelings that you're expressing. You *can* hold a baby with tubes and wires! Absolutely! I couldn't hold my DD as much as I would have liked, but even being able to lay a hand on her as she slept in her isolette was a comfort, to both of us. I pumped breastmilk so that she could have that, and we held her skin-to-skin as much as we could, when it was OK to do so. I remember worrying that I wouldn't bond with my DD because I couldn't do all of the things that we read about in everyone's perfect birth stories. I cried and worried and felt angry, too. But things have a way of working out, and we just had to delay and modify how we did things.

From SusanH ~ I'm sorry to hear about your baby's need for surgery. I don't know much about NICU babies, but I do know that doctors and researchers have found that babies respond to surgery and other health problems much better if touched as much as possible, so I imagine your NICU team will actually encourage you to hold your baby. You may want to call the hospital your baby will be in and ask if you can make an appointment to discuss your concerns with a NICU nurse or doctor. Planning ahead is your best defense! If you know what to expect, it should make it a little less stressful and scary for you.

From Lea A ~ No experience here - but can you ask about Kangaroo Care for your baby?

From Christyne ~ Thank you all for your kind words! Your suggestions are all very helpful. SusanH - You must be some kind of genius! I never even thought about calling the NICU and asking to speak to them. Simply brilliant! Thank you so much!

From JanB ~ Zeke was hospitalized for three weeks when he was a month old, with bacterial pneumonia. For most of that time, he not only had tubes and wires going in and out, but he also had a tube inserted through his chest wall that was draining fluids. You CAN pick up and hold a baby in the NICU and usually it's a good idea because babies like to be held. I will caution you, however, that if the baby happens to have particularly invasive tubes, it might be uncomfortable or painful to be moved around too much. We learned that while Zeke's chest tube was in, it was better to just stroke him, hold his hand, and be near, because picking him up was too stressful with that chest tube.

We tried to attachment parent him as best we could under the circumstances. Obviously other people are going to be more in charge of the day-to-day care of the baby than you normally would. It was difficult for me to give up control of feeding him (he was fed via IV for the first week), changing him, and just being his full-time mom. What you CAN do, though, is BE THERE. Zeke was hooked up to monitors that registered his heartrate, breathing rate, and blood pressure. The second Keith and I walked into his room, even before we said a word, all Zeke's levels would jump up. He absolutely knew the second we walked in that door, without even saying anything to him. He could feel our presence there. (Who knows, maybe he could smell us.) We sat by his bedside and read endless stories so he heard our voices, we stroked him and patted him, we played music for him that he was familiar with from home . . . we just tried to be there as much as we could for him. As soon as his chest tube was out, we did pick him up and hold him as much as possible, too. I think it all helped.

Good luck! I think there should be some kind of special award for families who survive a child's stay in the hospital, especially right after birth.

From kiwicaleb ~ The biggest thing you can do, is to be there for your baby. I pulled 16 hour days every day and pumped around the clock. I was there for Aidan as much as I could possibly be there. And honestly the only mom I saw consistently at the hospital was me. How long will your son be in the NICU? Will your hubby and/or other family be able to care for your other children? How far are you from the NICU? Is there a Ronald McDonald House near this hospital? I stayed there (for like $7/night which included all that I could eat, food was donated from businesses and restaurants, I was never home to eat it, but it was there), it WAS WONDERFUL!! I really hope there is one near the hospital so you can stay there; your kids can stay there too.

From patnrose ~ My son was in the NICU for 10 days. The best thing you can do is be there, like Amy said. I was there for 16 hours a day (and would bawl on my way home because I didn't stay overnight) and pumped every four hours. My son didn't have very many tubes and wires so I was able to hold him a lot. My advice to you is to ask a lot of questions - don't ever be afraid of looking stupid or being annoying. Also, if there is something YOU want to do, ask. I was too timid and didn't get to give him his first bath, which I am still sad about. Kangaroo care (skin to skin) is awesome. Try that if they will let you. You have to take care of yourself though too. If you are nursing it is very important that you eat and drink enough. Try to get sleep, even if it is in the chair next to the isolette. If you don't want him to have bottles make that very clear. I also requested Thomas have the same nurses whenever possible.

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From twinmomma ~ As a Mom whose child had open heart surgery as your new baby will (and he will have at least three surgeries if he has HLHS), I can tell you that it is VERY scary to see your child hooked up to all those monitors and tubes. Your baby will probably have femoral tubes (in through the groin), a chest tube for drainage, a catheter, IVs, heart monitor, pulse oxygen monitor, and feeding tube. This can all be very overwhelming and scary. With the chest tube in and so soon after surgery, it can be painful for your child to be picked up. I just stroked and talked to Luke as much as I could. Either my dh or I was at the hospital 24 hours a day, 7 days per week for over 6 weeks. We took turns being at home with our 3 year old twins (and had lots of help from grandparents with them). At our hospital a separate refrigerator was provided to store your pumped milk and they would tube feed the breast milk as soon as the baby could have something more than just IV fluids. Remember, it is YOUR baby. I had to fight to get referral for other specialties to consult, I had to fight to change meds, I had to fight forever. I was very fortunate that once Luke was out of CICU (cardiac ICU), the hospital I was at was "Family Style". Luke roomed with us the entire time he was in the hospital and out of CICU. We were allowed to co-sleep (which I did), we were allowed to develop our own feeding schedule (which I did). We were encouraged to bond with our child. We were responsible for changing diapers, for feeding, for bathing, for dressing. We were encouraged to dress him in his own clothes and not hospital garb. They provided us with three meals a day brought to our room at no charge so you didn't have to worry about going to the cafeteria. They provided us with a double bed to sleep in. Luke was at duPont Hospital for Children in Delaware and was cared for by a team run by Dr. Norwood, who pioneered the "cure" for HLHS. He also operates out of Arnold Palmer Hospital in Florida. I would suggest talking to the surgeons about exactly what will happen, go visit the NICU and observe, ask questions; the nurses will be very nice. I found it to be the doctors who were a bit hard to deal with.

From Gayesy ~ I agree with the others. Talk with the NICU staff and the surgeon. Learn what to expect. Then know that being near your baby, stroking him, talking to him, singing to him, holding him whenever you can, pumping your milk . . . all these things will make his recovery quicker and easier and will help him feel your love surrounding him. Thomas was in the special care nursery for only a few days after his birth (he was a 36-weeker) and I was so shocked and unprepared. I wish I could go back and do it again. Thankfully he was fine of course and I was able to establish breastfeeding (and he kept on going, and going and going . . .) and develop a great relationship with him. What I am saying is that even if the very start is less than ideal things can still work out just fine. In your case, you can hopefully be better prepared though.

From Janessa ~ I'm very sorry that you have this diagnosis. My BB has a special boy with Hypoplastic Left Heart Syndrome - I remember how we all prayed for him and his mother after she found out and as he was born and has gone through his surgeries. He's doing quite well now, quite a fighter. It's very good that you're thinking ahead. I have to agree with the wonderful advice that you've already gotten. You can AP him, even if you can't pick him up - he will thrive with your touch, hearing your voice, getting whatever of your breastmilk he will be able to have. Every time he hears you, feels you touch him, every time he knows that you love him, you will be APing him. We've said before, there's more to being AP than just some of the outward trappings, and I'd say from your concern and foresight, that you're already showing yourself to be a wonderful mom, regardless of label.

From Deearne ~ I agree with all that has been suggested so far. My nephew was born 11 weeks premature and spent the first 7 weeks in NICU. For my sister, the hardest part was not being able to hold her ds. Once your baby starts to recover from surgery, it is likely that they'll suggest the "kangaroo" cuddles. It's where you'll slip bubby under your shirt/nightgown etc . . . and bubby will be naked also, and you both get the skin to skin contact. Your partner will be encouraged to do the same also.

From momto2girls&mymiracleboy ~ My son is 14 mths old, but like you, I was diagnosed at 5 months that he would have very complicated heart problems. They weren't sure if it was the right or left side when I was pregnant. It turned out to be the right, but with his other heart complications, he has had probably as rough as an HLHS baby. He has hypoplastic right heart, pulmonary atresia (that's the bad one), and a double inlet. We were not sure how bad off he would be until birth. We didn't even know if we would get to hold him after birth, but we got 20 minutes, before they had to take him away. He was transferred to the University Hospital, and was in surgery where they did 2 balloon cathes that didn't take, so they went ahead and did the first stage surgery of the norwood procedure, same as HLHS treatment. He finally came out of surgery the next am and nothing could prepare us for what we would see, but the ped icu staff, let us see where he would be when he came out of surgery, which was helpful. They also warned us of all the machines (about 20) that would keep all his meds going, fluids, you name it . . . He was swollen, and knocked out, and had tons of stuff on him. But the staff at picu are giving round the clock care. He was put in nicu at 5 days old and stayed there for another 6 weeks. The beginning was hard, as I wasn't allowed to hold him, and sometimes touch wasn't allowed, due to agitating him. It was hard seeing him coming off some of the meds, as he would have shakes like a "crack baby". But I was there as much as I could, and sat by him, and he saw me. I finally got to hold him at about 12 days old! It is hard to hold them with all the cords, but it was the most wonderful experience!

I pumped for the first 3 weeks , as he couldn't breastfeed, but then I stopped, as I couldn't handle it anymore, and have two other kids too. I felt so guilty, but I did what was best for me at the time, as I was a mess then too! He never did end up even using a bottle, as he couldn't eat, without getting tired out. That's one thing I never expected was to take him home with feeding equipment. I'm not sure about AP with a baby like this, but you could do as much as possible. As for rooming with them, you can't in nicu, but they may have parents rooms nearby to stay in at night, then you can come and go as you like and see your baby. When they go to a normal floor, you can most definitely room in! Just by spending as much time with baby, talking, stroking baby, and holding once you can is a gift. That's what I did and my son and I have a very strong bond; people could see it , as he watched my every move when he was only a few months old, and now still only wants me. It came through all the many hours, I spent rocking him, and cuddling with him through all his recoveries.

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