Notes from meeting with NICU physician and nurse (tour)

Appointment with Dr. Eisenfeld, NICU physician

He described his role in all of this as the general practioner. He will evaluate Olivia and then call in whatever specialists we need. He was so nice and so soft spoken – I had a hard time hearing him and found myself leaning toward him a lot. Once I mentioned Olivia by name, he referred to her by name the rest of the meeting which was SO comforting to us. He did tell us that if Olivia does have this head disorder, it’s nothing that can’t wait – it would be dealt with at a later time and wouldn’t hold up the cardiac issues.

I asked him the following questions – answers are in italics.

  • Breastfeeding (BF): How will Olivia be fed if latching is an issue or if she is on a ventilator? If I’m not there to BF, will they bottle feed her Breastmilk? How will this affect her learning to BF? They will help facilitate BF – if she is on a ventilator they will feed her via tube or put the breast milk on her tongue to get her to take it. But they will work with me to get this to happen.
  • Maddie Rose: How can we prepare her for seeing Olivia in the NICU? How often can she visit and for how long? He recommended I speak with the Child Life Specialist and Social Worker regarding this. The nursing staff will also help us prepare Maddie Rose. Maddie Rose can visit as often as she would like and stay as long as she would like.
  • After Olivia is born, can Arnie or my mom go with Olivia directly to the NICU? Can we be there while they are doing the cath of her heart? If not, how long will we be away from her before we can see her again? The NICU staff will be in the delivery room and they will stabilize her right there before moving her to the NICU. At that point, either Arnie or my mom can go with her right downstairs. As far as the cath goes – normally parents aren’t there and I should check with Dr. Heller on the length of time it takes to cath her.
  • What are the visiting hours in the NICU? Can I / we stay there all day if we wish? For parents, they can visit anytime – there is no time we aren’t allowed in. We can stay all the time as long as we are taking care of ourselves – eating, sleeping, etc (mostly this was directed at me). Because they need me to be healthy to help Olivia be healthy (which makes sense).
  • Can we view the family room for sleeping? How does the availability work? We saw the family rooms. There are two that have full bathrooms in them (including shower). It’s just a room with a fold out couch and tv and a chair. They are on a first come / first serve basis. During the day, they are available to anyone to nap, etc.
  • Christopher & Cole: Can they visit Olivia in the NICU? He recommends we discuss this with the nursing staff after Olivia’s birth. They normally frown upon this as it can introduce more germs.
  • Visitors: How are they regulated in the NICU? Does one of us have to be present to let someone visit her? Two at a time are allowed at a bedside. Normally one of us has to be with a visitor. However, the nurse told us that we can both be there with both sets of grandparents and Maddie Rose at the same time but if a aunt wants to visit she would have to be escorted by one of us.
  • Is there anything special you need to have on hand for your pump? do they provide milk storage bottles? they will provide the hookups to the pump including their bottles. They have a massive freezer that everything is stored in. They also will rent pumps to have at home if need be. However, I saw at least three in different family rooms we were shown. No need to rent for pumping in the hospital.
  • Is there a pumping room for NICU moms?

    The family rooms are used for this or you can pump right at the bedside

  • Do you have discounted meals for parents of NICU babies? What if Olivia can nurse and I am there for feeding her. There are meal passes available based on “need”. Need to talk to the social worker regarding this.
  • Do you validate parking for parents of NICU babies? Again, he referred us to the social worker about parking passes, etc.
  • Can we leave a list of people with them that it is OK to give updates to by phone? What about approved visitors? They frown upon this as the concern is that a person may get newer information than one of us – and then the concern is the old “telephone” game where we would end up receiving information that was filtered. They rather the nurses give us the information to pass on to family members – so we can filter it if need be.
  • Do you have a Parents of NICU patients support group that meets here at the hospital? There is nothing ongoing. But the social worker can put us in touch with other families.
  • How often do the doctors do rounds? Can we be here when they do and if not how long will we be asked to leave? Will they call us to update us after each rounds or do we have to ask? They are done daily. Weekdays they are done between 10AM-12:30PM and on weekends they are divided up with the sicker babies covered between 8-9:30AM with a break before covering the “healthier babies” between 11:30AM and 12:30PM. However, they are at the bedsides frequently. Updates: can be done either way – it’s handled differently based on a parent’s needs.
  • What are the reasons we may be asked to leave the NICU and how long will we be away from her for each reason? If they are doing a procedure on her, we may be asked to leave for a half hour or so.

Meeting with Ginny Lowry: NICU Nurse

There are 26 beds in the NICU. The NICU is part of CCMC even though we were still in Hartford Hospital. The NICU is split into two sides. To gain access you need to be buzzed in. There is a list of the babies names to identify which side your child is on. The nursing staff is 2:1 in the case of a very sick baby. At most it’s 1:4 in the case of a baby doing quite well. All babies are monitored with screens at bedside and can be viewed as well from the nursing station.

It was extremely quiet in there. No crying. Most babies were sooooo tiny. Olivia is going to be a moose compared to these kids. They had 5 sets of twins when we visited – and they were waiting on another set, PLUS they were expecting triplets to be born yesterday as well! :eek

They promote a lot of skin to skin contact between baby and parents – even if the baby is on a ventilator. They had a lot of “Lazy Boys” setup and the nurse mentioned they were all donated by Bob’s Furniture (which is a furniture chain here in CT). All the nurses will assist in BF’ing and they can bring in a lactation consultant if needed.

There is a “Milk Club” for breastfeeding mom’s that meets once a week in the NICU.

We talked to Ginny a long time about the newest development with Olivia. She’s seen many kids with this disorder and told us not to lose sleep over it. It’s completely fixable and doesn’t affect intelligence, etc.

Notes from 32 week appointment

Dr. Cortland gave us some more information regarding the head issue. She mentioned she would be contacting Janice, the patient care coordinator, to verify that Olivia would be seeing a genetic specialist to see if all these defects are somehow tied together. Nothing related to something they can pick up on the amnio though.

My blood pressure was “excellent” at 118/62. Urine was good – so they are just saying the swelling is typical pregnancy stuff.

Olivia’s heart rate is in the 150’s. I’m measuring 35cm!

First NST is scheduled for 6/15 at 8:45AM.

Notes from Level II ultrasound

We met with Denise (technician) and Dr. Feldman. Olivia’s legs are measuring 34 weeks. Her arms were around 31+ weeks. They estimate her weight to be around 4lbs, 3 oz.

Dr. Feldman is concerned about Olivia’s head which looked slightly abnormal. Possible early bone fusion – temples may be pushed in slightly. The name of the disorder is craniosynostosis (sp). Dr. Feldman said it may be nothing – could be something we wouldn’t even notice. But most importantly, it’s not serious and is 100% correctable. Just something new to add to the list.

Dr. Feldman recommended that we start doing NonStress Tests (NST) weekly. She was concerned about the swelling in my feet and called Dr. Cortland to give her a heads up.

We ran into Dr. Heller (Olivia’s cardiologist) on the way out – she was coming in. She is just so nice and it’s so reassuring to see her.

I am scheduled for one more appointment with the Maternal Fetal Medicine Group on July 1 at 2:30pm.

Appointment for NICU tour set

Janice called me back this morning. We are all set for an appointment with Dr. Leonard Eisenfeld (neonatologist) at 4pm on Thursday June 3. After our appointment with him, we are scheduled to meet with Ginny Lowry who is a RN in the NICU. Ginny will give us the tour of the NICU. I asked Janice about where I can sleep while Olivia is in the hospital and after I have been discharged. She informed me they have “family rooms” available for parents of children in the NICU. However if those are full, there is the option of staying across the street in the Hudson Suites for $55 / night. While not “cheap”, at least we know that is another option for us.

Maternity Tour, OB Entry Coordinator, Patient Care Coordinator phone calls:

I set up our tour of the maternity ward for June 12th. This phone call set off a flurry of activity. The woman who set me up with the tour recommended I speak with the OB Entry Coordinator, Susan. Susan and I spoke at great length regarding Olivia’s condition, etc. She told me to expect my enrollment form by next Saturday. I am to fill it out and give them as much detail about Olivia’s condition as I possibly can on that form (including Olivia’s Doctor’s names – PC and surgeon). She suggested I make at least 6 copies of that form and keep copies for myself to bring with me if / when I go into the hospital to be checked, etc. It will help them in the case of my paper being misplaced and from having to answer the same questions over and over again.

Susan also suggested I get in contact with Hartford Hospital’s Patient Care Coordinator, Janice. Janice will help coordinate all the specialists, etc. I plan on calling Janice on Monday as I had enough excitement for today.

28 week checkup

28 week appt with Dr. Cortland:

Heartbeat was 135 bpm.
Blood pressure is good.

Induction date: July 19th is a Monday – and Dr. Cortland is not in the office on Mondays. I said “OK, how’s the 20th then?” Because I don’t want to have ANOTHER doctor at this point – two OB’s is plenty for one pregnancy. She agreed and we talked about me possibly coming into the hospital on the 19th in the evening to get me all prepped for an early induction on Tuesday.
That worked for me. She said she would book it that afternoon and leave me a message at home.

Level II u/s notes

Diana was the technician and then Dr. Bobrowski and Dr. Heller (Olivia’s Pediatric Cardiologist – PC) attended.

Olivia is measuring in the 70th percentile (up from the 50th last week). They have her at 29-30 weeks based on her measurements.

We saw the following:

  • There was a “nice arch in the aorta”. The PC was thrilled by that.
  • Olivia’s ribs are growing and making the U/S’s more complicated in the sense of we have to work harder to avoid the shadows.
  • The Main Valve is still not leaking which is AWESOME.
  • Kidneys and stomach are where they should be and look good. Gallbladder is definitely on the wrong side but looks good otherwise.

Olivia was all over the place. At one point her feet were way up near my ribs. Then she was in a jack knife position which made for some fun in attempting to get a good scan of the heart.

Dr. Heller was surprised that the smaller portion of Olivia’s heart has continued to grow which makes us believe her VSD (hole) has not closed. It’s not a bad or good thing – just not what they had expected to see at this point.

We talked to Dr. Heller regarding Arnie’s concerns about Olivia possibly having aspleenia or polyspeenia. He’s been really worked up about it – reading horror stories on the Internet. She feels that this is a minor problem and not worth going through a Fetal MRI to determine. We’ll know “soon enough” and they will be evaluating her anyway. Arnie’s feeling much better after talking about this more with her.

We talked about possible induction dates and they told us to talk to Dr. Cortland about a July 19th induction date.

Notes / Comments from Ultrasound

I’d almost forgotten what a “normal” appointment felt like. Today was one of the first appointments we’ve had since February where I smiled from start to finish.

The u/s technician was wonderful. Went over everything with us. Didn’t focus on the negatives at all. Kept commenting on how cute Olivia was.

What we saw:

  • Olivia’s bladder was full which means the kidneys are functional and “good”.
  • The umbilical cord looks fabulous. We were able to see all three vessels that make it up. In some of the pictures we have it looks like there are bubbles in the fluid – which is actually a cross section of the umbilical cord.
  • Olivia is head down!
  • The placenta is of good quality (no signs of aging which can lead to early labor). The amount of amniotic fluid was also good.
  • Stomach was where it should be but angled a bit.
  • No signs of the spleen, but it could be the type of machine they are using.
  • Diaphragm looked fabulous.

Overall:

  • Olivia weighs approximately 2lbs, 4 oz and is in the 50th percentile. Makes sense based on her older sister being a peanut as well.
  • Pictures, pictures, pictures! We were given a ton of pictures to take home with us. Arnie will scan them for me tonight. Olivia looks just like Maddie in my opinion. She’s starting to look “chunky” and more baby and less “alien”
  • My diabetes test came back perfectly normal! I was well within the normal range (right in the middle) so that is such a blessing.