Non Stress Test, 36 week checkup

Olivia’s NST was great although she fell asleep toward the end of the test.  Heart rate was 140-180 today.

My appointment went well. I had my Group B Strep today and an internal exam.  If I do test positive for Group B, I will have another IV of antibiotics during labor to protect Olivia from contracting it.  Internal – I am “open in the front and closed in the back” which she said was good and what is to be expected at this point in my pregnancy.

We discussed her philosophy on some “hot topic” issues for me regarding delivery.  Thankfully she and I see eye to eye on episiotomies, forceps and vacuum deliveries as being necessary only in emergency situations.

I also asked about the timeline of events regarding the induction. I will be checked in at 8pm on July 19th.  Pitocin will start between midnight and 1AM.  The goal is to get Olivia born in the daytime.

General Thoughts

As things get closer, Arnie and I are finding ourselves under a lot of pressure.  The reality of what lies ahead is becoming very real to both of us.  What I perceive as a “normal” delivery will not be what we have.  Olivia will not be placed upon my chest after she’s born.   We’ll be lucky to even hold her prior to her being whisked away – which is what she needs and we’re ok with that. However it doesn’t make it any easier for us.

We need the love and support of our family and friends now more than ever.

Thank you.

Non Stress Test, 35 week checkup

Updates while we’re in the hospital

Just an FYI – we have asked our friend Gina to keep everyone updated while we are in the hospital. She will be updating the website on an as-needed basis.  We strongly recommend everyone sign up for the announcement list to be kept up to date with the latest information.

Non Stress Test, 34 week checkup

A non stress test for those who don’t know is where they hook me up to a fetal monitor that charts Olivia’s heart rate. I lie there and push a button each time I feel her move and they later analyze the data to make sure she’s doing well.

Olivia did fantastic. Heart rate was between 135 and 155.

My 34 week checkup:  Blood pressure was fantastic (90/60).  I’m experiencing swelling in my feet along with protein in my urine both which can be a warning sign of pre-eclampsia (along with high blood pressure).  Because my BP is so great, they’re just going to keep an eye on things for now as I’m going in weekly anyway.  In the mean time I’m keeping my feet elevated as much as I can and watching my salt intake to attempt to keep my blood pressure low.

Maternity Ward tour

Or as I called it “the tour for ‘normal’ people”.  I wasn’t thrilled to be going as for me it was a reminder of how NOT normal this all is.

However, it was very informative to a point – once Olivia is born, all the information they provided won’t apply to us.

The highlights:

• They validate parking for the entire time you are in labor plus 2 days after for vag. delivery or 4 days for a c-section.
• They have a TV and VCR in each labor room.
• We were unable to view a post partum room as they were all full – to the point that some post partum moms were still in labor and delivery waiting for a bed to open up!  They were rescheduling scheduled inductions and c-sections due to how busy they were.
• After the tour, we spoke one on one with the L&D nurse who gave us the tour to verify that we would NOT be rescheduled as our induction is a medical situation.
• They allow up to 3 birth support people – you have to identify them when you check in.  So no party like last time.
• The family waiting room is SO nice.  There are vending machines, a TV and multiple couches.  They will provide blankets and pillows for family that is waiting.
• They will allow us to bring Maddie into the delivery room immediately following her birth to allow her to see Olivia prior to going down to the NICU.
• They are a “baby friendly” hospital so they do not hand out formula or coupons or formula products. This is a HUGE bonus for us as I’m planning on nursing Olivia and realize we will definitely get the support we need while we’re in the hospital.

It was all very nice and we kept quiet about all of Olivia’s issues as to not scare the innocent people.  After the tour we spoke with the L&D nurse about our situation and she thanked us for not mentioning anything.

Here’s a copy of an email I sent to the President of the Little Hearts organization after Sunday’s picnic.

Lenore,

I can’t say Thank You enough for yesterday.

Driving in, I was quietly crying in the passenger seat – could I handle what I was about to see? This was our first time seeing “heart kids” live and in person and while we’ve seen pics on the internet, this was our first time being able to see them playing. Arnie described it to his parents the best “If you came across the group and didn’t know it was for CHD families – you NEVER would have known. We could have been any company picnic but it was more like a family reunion.”

It was so nice to be around people who didn’t look at us with pity – so often when we meet people and mention Olivia’s battles ahead, we get that “look”. All we received yesterday was love and support.

I can’t tell you enough how wonderful yesterday was – it allowed Arnie and I the ability to recharge our batteries for the battles that lie ahead. On Thursday we found out Olivia may have craniostenosis (sp?) – and we were both feeling pretty blue about everything. It was so nice to see all these beautiful kids running around looking so healthy and well. It gave us HOPE for Olivia again.

We came in at the same time as the Kennedy family. Ruth and I had been in touch a few times so we ate together and chatted. To see 5 month old Ewan (who also has pulmonary atresia and is going in for his Glenn in a few weeks) look SO GOOD – well, it just made us smile from ear to ear. Plus it was great to show Maddie Rose a baby with similar “boo boo’s” to Olivia’s. To show her that Olivia will be just like every other baby was such a blessing.

We were so thankful to run into Delys and Noel who are also expecting their first heart baby next month. Delys and I hugged so tight. It was like meeting an old friend, but one who knew exactly what we were feeling.

The only time I got choked up was when you were taking the pictures of Hope. It was very emotional but in a good way. To know that next year Olivia will be in the picture and will be looking as well as all these kids … what an inspiration.

Thank you, thank you, thank you! I cannot wait to see the pictures on the website!

With Love,

Arnie, Tricia, Maddie Rose (HH) and Olivia Ann (induction scheduled July 20th, PA, Unbalanced AV Canals)

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.

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.

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.