Appointment DAY: Aug. 30th

Yesterday we were up in Indianapolis for our day filled of appointments!  It was quite the adventure with the boys.  Our first appointment was with a doula/labor support person that we found actually had availability in October!  We were so excited about this.

What is a doula?

"A doula stays at the woman's side throughout labor and birth, providing undivided attention and support.  She is an experienced labor coach who supports and encourages mothers before, during and after labor.  A doula provides pain relief techniques, and an objective point-of-view, which helps the woman make important decisions for herself and her baby.  Studies have shown that when doulas attend births, labors are shorter with fewer complications, babies are healthier and they breastfeed more easily.  Doulas are becoming an integral part of the labor and birth team.  She acts in a non-medical capacity, and does not replace the husband or clinical care providers."

We met with Julie, our doula, to talk about plans.  We also found out she is a lactation specialist/consultant with 30 years of experience!  We are very excited about this, as feeding Eli there will be a lot of complications and we will need all the help we can get.

Next we met with the pediatric cardiologist:

An ultrasound tech performed another echo-cardiogram to check on Eli's heart.  The pediatric cardiologist then came in to do some of his own scans.  He then walked us through Eli's care after birth, his stabilization in preparation for his 2 surgeries and what his surgeries would entail.  He also encouraged us to ask as many questions that we had.  He spoke very very fast, and it was information overload with all of his "medical terminology.  We had to slow him down a bit by asking questions we already knew the answer to to buy time to think about what he had just said and think about what our true questions were!

Some of the questions we had were:

Will Eli require the Balloon Atrial Septostomy catheterization procedure?

YES.  In looking at Eli's echo-cardiogram, he saw that Eli does NOT have the ventricular septum defect (another heart defect that often is accompanied with TGA that is a hole between the two pumping chambers of the heart which allows some mixing of oxygen rich (red) blood and oxygen poor (blue) blood.....making babies with transposition actually a little more stable because that would allow higher oxygen levels).

His atrial septum (a hole that is between the two sides of the heart that ALL babies have in utero but 24 hours after birth closes) unfortunately is quite small.  This means that upon birth Eli will likely turn blue rather quickly, because he does not have adequate mixing.  This will require the Balloon Atrial Septostomy Procedure to be done sooner than they anticipated to "rip" open the hole to allow more mixing.  (See video "Stabilizing Eli" to learn more about this procedure).

When will we be able to hold Eli?

This all depends on how stable Eli is and what he is currently hooked up to.  He said he STRONGLY encourages parents to hold their babies as soon as possible, not just for the parents sake, but for babies sake as well.  He also strongly encouraged breastfeeding (if Eli does not have a ventilator and is breathing good), if anything pumped breastmilk in his feeding tube.  He said the biggest determining factor on when we will be allowed to hold Eli will be if he has an arterial line in place.  He said most likely he will have one for the first 7-10 days (which is what we had already heard).  When they have an arterial line, it is very dangerous to move them.

How long of a hospital stay should we anticipate?

4 weeks.  He said it would be a miracle if he came home before then.  He said on average babies with TGA are in the hospital after birth for about a month, and if they have complications after surgery it could be 6-8 weeks, but this is not the norm.  His journey will start at IU hospital where he will be stabilized  (setting up arterial lines, ivs, administering IV prostaglandins to keep his "ductus arteriosis" open to provide more mixing, assessing his oxygen levels, possibly giving him oxygen, etc.) and then transferred to Riley's Children's hospital.  He will then have his Balloon Atrial Septostomy cathertization procedure and remain in NICU until he is stable and "stress-free" in preparation for his Arterial Switch procedure.  Around 1 week he will have the Arterial Switch Surgery (See video to the right for more information).  After surgery he will be in the CICU (cardiac intensive care unit) for a few days.  Sometimes babies have a lot of swelling in the chest and they are not able to close the chest after surgery.  If this is the case he will spend a little more time in CICU and have IV medication that temporarily "paralyzes" him as his chest will still be open.  Once swelling goes down they will close his chest.  When he is done in CICU he will be transferred to his own room in NICU where they will continue to monitor him until they feel it is safe to discharge him.

Is the purpose of wanting to induce Stephanie to have team in place or is it a concern for Eli's health to not go to 40 weeks?

He said he would assume they would want to induce me at around 38 weeks...As far as Eli's heart defect goes, he is completely healthy and stable inside the womb, because of the prenatal environment, his risk is immediately after birth.  He said it shouldn't be this way, but it just is:  If you deliver Mon-Fri normal business hours, you have the best possible care with everyone in place.  He said they will always have doctors on call in the evening and the weekends so it's not something to worry about with spontaneous labor, but it's hoping the entire team gets there and in time etc. etc.   Just part of the equation that is sadly a reality.  (We are totally on board!)

Will Brian be allowed to go with Eli with he is transferred?

Absolutely.

What will Eli's checkups be like?  How often can we anticipate this his first year?

Most doctors would want to see Eli 1 month after his Arterial Switch surgery.  Then about 2-3 months depending on how he is doing, 6 month mark and then again when he is 1 year.  From then on out it will be every 1-2 years depending how well he is doing for the rest of his life.

Next we met with Maternal Fetal Medicine:

An ultrasound tech did another anatomy scan ultrasound of Eli.  Dr. Sawyer then came in to do her own scans and talk to us about her concerns/birth plans.  She was Russian and somewhat hard to understand but she seemed very knowledgeable and very patient and kind.  She brought a family resource person in with her.  She strongly urged that Stephanie move to Indianapolis at 37 weeks.  She does not want to take any chances of Stephanie going into spontaneous labor in KY where they are not equipped to stabilize Eli....he would have to be life-flighted to Indianapolis.  This is why she brought the family resource person in.  She asked me if I had family I would be staying with.  I said I did not have any family and would likely be staying in an extended stay hotel.  She said that was unnecessary as they have some other options.  There is an apartment complex near the hospital that typically houses parents whose children are cancer patients at Riley's doing chemo.  When they have vacancy, they will allow doctor referrals for high risk ob patients.  It is a furnished, rent-free apartment, does not have income "requirements/restrictions"......and is likely hard to get into, but it will be worth a shot.  The other option is the Ronald McDonald house, which I would need to get on a waiting list for, and priority is given to parents who have children at Riley's  (which will be the case after Eli is born, but not before).  If all else fails we will have to buckle down and get a hotel for those last weeks of pregnancy ($$$)

Next we talked about induction.  She would like for me to be induced no sooner than 39 weeks (yay!) to allow the best possible outcomes for Eli and make sure he isn't born with premature lungs/respiratory issues which would only add to the problems we will already be dealing with.  She then reaffirmed what the cardiologist said that the reason for wanting to induce me is to have the "A" team.  Yes, inductions are still unpredictable, I could be in labor for a long time, but it still gives them an idea of when to expect Eli.  This is also why they typically do inductions the beginning of the week to ensure he is born "Mon-Fri".  When she noticed my due date (Oct. 18th) fell on a Friday and that would mean I would turn 39 weeks on the Friday before, she decided to move my induction back even further (yay!) to the Monday following when I turn 39 weeks (Oct. 14th).  We were very happy with this, as I have felt all along anyway that Eli will come before that.  We prefer a natural, spontaneous labor if it so happens (before induction date), because this will allow less interventions that statistically lead to c-section.  We just hope it's not on the weekend!

We then asked her what their typical timeline of induction was.  She said her personal preferred method of induction starts with Cytotec, a pill that is inserted next to cervix to help ripen it.  (DO NOT GOOGLE CYTOTEC! so many risks associated with it........)  Anyways,  the other ways some doctors try to ripen cervix artificially is Cervadil which is similar to a tampon with medication released throughout several hours that ripen the cervix.  They then typically break your bag of waters, and administer Pitocin.  We spoke about out feelings about Pictocin....(Stephanie is NOT a fan!)  We said we were absolutely willing to use it if needed, but started a dialogue/negotiation with doctor.  Because many moms who have had previous births naturally start to dilate sooner (Stephanie was dilated 1 cm a week before delivering Ethan), we asked if this is the case if she would be willing to break my water before cytotec and seeing if my body naturally gets things going first, and if not then proceeding with other interventions.  She agreed and said this was an excellent point.  She is more than willing to do this.  Of course, we don't know how things will pan out, but it's good to talk about things.  She said she is not too worried about me, having 2 successful vaginal deliveries already (one including mr. chunky chunk Ethan!).  She said it is definitely possible that after a little nudge, my body will naturally kick in because it "knows what to do".  So that gave us a little hope in the desire for a natural childbirth.

We then set up OB appointments in Indianapolis for when Stephanie moves up there.  My routine care until 37 weeks (when I move) will be in Lexington with a perinatalogist.

On another note, when the ultasound tech did the anatomy scan she estimated Eli to already be 5 LBS 15 OZ! OH MY GOSH.  I am only 33 weeks!  Dr. Sawyer estimated that he would likely be Ethan's size or possibly a little bit bigger, but this is great for his condition as typically the bigger babies are healthier, feed better etc.  Plus with TGA babies have a hard time gaining weight so he will have a good cushion/starting point! ;-)

Next we met with a Neonatalogist:

The neonatalogist went over with us in detail what would immediately happen after Eli's birth.  She said to anticipate 10-15 people in my delivery room between "my" team and "Eli's team".  Eli's team will consist of a Neonatalogist, another Neonatalogist or a Neonatalogist Fellow, a Neonatal Nurse-Practitioner, A Respiratory Specialist and 1-2 more nurses.  Stephanie's team will be her Ob-gyn, 1-2 nurses, and doula.  There is a chance of possibly more people as in addition to those mentioned as IU is a teaching hospital, and what a great teaching opportunity! hahaha.

She said when Eli is born if he screams like a normal newborn, is pink they will allow Eli to be placed on my belly while they do his Apgar scores.  If he is doing good, they MIGHT let me hold him for a minute, but that is it.  She said it is more likely that they will take him immediately to "the island" with Eli's team to stabilize him.  They will put in all of his lines and IVs, administer IV Prostaglandins (to keep his "ductus arteriosus" open to allow some red and blue blood to mix), check his oxygen levels, listen to his heart etc etc.  She said that unfortunately one of the side effects of Prostaglandins is it may make him stop breathing or have difficulty breathing.  If this is the case they will put him on a ventilator to help him breath and relax.  She said this process takes about an hour.  They will then put him in a transfer box type thing (I can't remember what she called it).  It is those see-through crib type things they use for preemies that have holes in the side you can put your hands through?  I hope that makes sense.  They will wheel him in to see Stephanie and let her put her hand in to touch him and tell him goodbye and then they will transfer him to Riley's for the rest of his care.

She said with a normal, vaginal delivery they usually discharge you the following day.  Women who have c-sections are usually discharged after 4-5 days.  HOWEVER, in this circumstance, they will make somewhat of an accommodation.  =)  She said that after a couple of hours if all my vitals are good, they will wheel me to Riley's in a wheelchair to let me see Eli in NICU.  They will just give me specific times that I have to be back in my room for them to monitor me, and I have to stay the night in my room.  If I have a c-section, they will wheel me down the following day, but not sooner.

We told her we were concerned how Eli would cope with everything, would this stress him out?  Especially since we won't be able to hold him/comfort him.  She said if they notice he is particularly stressed, they will give him an IV medication ( I can't remember the name of it), but she said it acts as a anti-anxiety medication.  They will also be giving him morphine after his surgery.

We asked her what to expect with feeding Eli as we had heard they often have difficulties eating and gaining weight.  She said because his atrial septum is looking small, and his oxygen levels will be very low, he will most likely be fed through an IV initially.  She said this is because they don't like to put anything in his stomach (as with a feeding tube) because this would require more blood flow/oxygen etc to go to his stomach, and they want his oxygen to go to his more important organs.  This will just be initially and then they will likely feed him through a feeding tube with pumped breastmilk or formula.  After his surgery, as more and more things are disconnected from him they will allow him to try breastfeeding/bottlefeeding.

Next we did a tour of labor & delivery and stabilization "island" at IU hospital, NICU at Riley's, and Ronald  McDonald house.

Labor & delivery was your typical labor and delivery room.  The "island" was pretty intense.  It is a pretty spacious room FULL of every little thing they could possibly need to immediately stabilize babies.  This made us feel very comfortable with everything.  I say it was intense, because we hit a wave of "reality".  That this is REALLY going to happen and not something we have just been talking about. =(  I lost it when I saw the "box" they will be putting him in for his transfer.  Nothing "scary" about it at all, but that's just when I couldn't handle any more thinking about having to reach my hands in to touch him and say goodbye, and just the overall seriousness and reality of the situation.  The tour guide paused and comforted me in saying he will be in the absolute BEST hands and we are so very lucky to know all of this information overload BEFOREHAND.  We will know what to expect and won't be traumatized by seeing the doctors rushing around making us nervous.

The NICU was very nice!  It is brand new as of June.  I envisioned a NICU with several babies all together in the same room, but this NICU had individual rooms for the babies/parents.  It is a very large room that had everything he would need associated with his care, and also a space for me and Brian.  It has a couch that has a pull-out bed, and also a super comfy, cushiony recliner/rocking chair!  It had closets and a safe to put some of our belongings in, and a fridge to put pumped breastmilk in.  They have video monitors and a whole side of the room is glass so they can monitor Eli.  At this time the tour guide said there is no such thing as "visiting hours" for parents, we can be with Eli any time of day we like, as much as we like.  There is a pull out bed, but she STRONGLY urged against using it.  She said they've seen too many times parents going "crazy" constantly engrossed in baby's care, sleeping very little and not taking care of themselves.  She suggested staying somewhere else at night, and also being sure to get out to shower, etc.

That is when we went to see Ronald McDonald House.  There is a big Ronald McDonald house 2 blocks from the hospital.  The one we went to was a small Ronald McDonald House located inside of the children's hospital.  It has a large community living room with TV, couches, etc. and a large kitchen that they have stocked 24/7 with donations.  They have 6 rooms that have a queen bed, desk, closet, etc.  They are a couple of showers that you just sign up to use (they're not in your room).  There is a daily waiting list to stay at this Ronald McDonald house because there is so little rooms, and the conveniency of being in the hospital, many parents want to stay there.  However, other than the rooms the house is completely open to all parents at Riley's until 9 PM.  They always have a breakfast buffet in the morning, sometimes lunch. and about 4-5 days a week they have outside organizations that come and cook a big meal for dinner.  The downside of this Ronald McDonald house is the daily waiting list.  At the much larger Ronald McDonald house 2 blocks from the hospital there is a waiting list, but once you have a room, you have it your entire stay.  When we came in, the head of the Ronald McDonald house walked with us, and she was so adorable and motherly.  She said she is there to dote on you and make sure you drink all your water, take naps, etc. haha.  It was really sweet.

The tour guide also told us that they give meal vouchers for the hospital cafeteria to all breastfeeding moms because you are considered your baby's food source. =)  There is also a McDonald's inside the hospital. There are laundry facilities as well in the NICU area.  (This is something that we hadn't thought about.......we will be there over a month....ugh guess it's time to pack our hospital SUITCASES not hospital bag) Once your child is a patient at Riley's they will also give parents a free parking pass for the parking garage next to hospital.  This was good to hear as the hospital is downtown where you have to "pay" to park everywhere.  (We paid $10 for our 6-7 hour visit)

At the end of the day we were completely exhausted and mentally overloaded with information.  And then we had to drive 3 hours back home! haha.  But overall it gave us a little more to hold on to, and more information to plan for everything.  And now that we now I have to be up there at 37 weeks, it's crunch time!  There is sooo much to do!

Update 8/20

My perinatalogist's genetic counselor that I was seeing in Newburgh before we moved called me yesterday simply to ask how I was doing.  She also asked me how I liked the perinatalogist in Lexington that they referred me to.  She was pretty upset with the fact that they hadn't given me any referrals to IU and Riley's in Indianapolis yet being how far along I am.  She offered to do it herself!  She then called me back today with a day full of appointments next week! (8/30)  I will be seeing a sleu of various doctors, nurse staff, etc. and also taking a tour of the CICU.  We will also be doing another echo cardogram and an anatomy scan (ultrasound).  The perinatalogist will also be talking to be about "planning" Eli's birth.  The counselor told me they are likely going to want to induce me around 38-39 weeks.

In other news, I have recently met a girl whose son was born with TGA and delivered at the same hospital 2 years ago.  She has been so insightful!  There's nothing like talking to a person who has been there to cry with, and feel like they "get it."  She said it has also been therapeutic for her to help someone walk through it.
Some of what she has shared has been extremely hard to hear....however, the more we know what to expect before hand the better.  She told me that immediately after her son was born he was rushed to another room that they call the "island" to be stabilized and prepped for transfer to Riley's children's hospital.  She didn't even get to see him!  They then wheeled him in for 2 seconds and let her touch/kiss him, but not hold him.  She said she was not allowed to hold him for 10 DAYS (because it is too dangerous to move them with the ventilator and everything hooked up to them.)  And the only reason they let her is because that is the day she had a mental breakdown....the nurses begged the doctor and he agreed, and she had a team of nurses help her hold him.

To me and Brian, this is the hardest information we have learned so far.......we simply cannot imagine seeing our baby cry and not being able to pick them up.

I do like the fact that they will let Brian go with him when he is being stabilized and transferred.  He will be able to take pictures/videos etc that he can bring back to show me.  She also said that they did not let her leave until the next day because technically she was a "patient" too, so they had to make sure she was good to be released first.  If she would have had a c-section it would have been much longer.

She said that many "heart" parents stay at the Ronald McDonald House, if there isn't a waiting list.  There is also a smaller Ronald McDonald house inside the children's hospital that has a stocked kitchen, places to take naps, showers (you just have to schedule them) etc.  Many non-profit organizations come each night to make a big family dinner for all the patient's parents.

Her son was in the hospital just under 6 weeks, but this is because he had issues after surgery which are not the norm.  Eli's stay will most likely be 2-3 weeks if everything goes well, which normally these kids do well  after surgery.

We will be updating our blog again on Friday when we have all of our appointments at IU & Riley's.  We are looking forward to more definitive plans associated with Eli's birth.

Baby Eli TGA Fund

We will be incurring many many expenses such as normal associated childbirth costs, Eli's stay at Riley's Children's hospital (weeks), his medications, surgery, etc, hotel stays (the hospital is 3 hrs away).  Our insurance deductible is $3,150 and our out of pocket maximum is close to $10,000 which we will likely hit.  We have created a fundraiser website to help raise funds for his care.  ANY donation helps!  If anything, please share this link with friends via email/facebook etc.

https://www.giveforward.com/fundraiser/jgt2/baby-eli-tga-fund

Diagnosis

At our routine anatomy scan it was discovered that Eli might have a rare complex congenital heart defect called Transposition of the Great Arteries.  This diagnosis was then confirmed by echo-cardiogram.

This congenital heart defect (CHD) is also known as "blue baby syndrome" because babies with this condition often turn blue following birth.  Essentially his pulmonary artery and aorta are switched or transposed. This means that oxygenated blood returns back to his lungs instead of the rest of his body and blue blood (oxygen poor blood) is sent to his body rather then oxygenated blood.

This will require Eli to be stabilized after birth, have a Balloon Atrial Septostomy procedure and then his Arterial Switch Surgery (switching of coronary arteries to proper place) to correct the defect.  All of this will be done within his first week of life so he is able to survive.

To learn more, please see videos on the right side of our blog. If on mobile, you need to click "view web version" to see videos.  We are in a state of shock of what this means for our little family and our journey ahead.  Please keep us in your prayers.