cerebral palsy – Bump 2 Bab[y]ies

Homecoming

Published on September 7, 2013 by onesource4wellness3 Comments

The V-7 were reunited this past week. On Sunday, Theo and I landed in Madison after an uneventful flight. Theo was a champ and slept most of the way.

Theo is happy to be home sporting his new do!

It was quite emotional to walk into the Madison NICU and realize that we were all here, and here to stay. I just stood for a brief moment at the entry way and could see all of the entrances to their rooms and my husband standing right in the middle. My mind took me home to when some day soon I would be able to stand in the hallway and peer into their nursery and do this exact same thing. Needless to say, many happy tears followed.

WhatsAStuffedDisneyAnimalGottaDoToGetSomeGrubAroundHere — Our 6-seater table from the wonderful Tille family featuring new stuffed animals from Grandpa T

The following day, our family joined us for the reunion on Labor Day. We also were welcomed by NBC, ABC and Fox/CBS who helped to capture this exciting event for our family, but also for the city of Madison as we are the first quints to reside here. Our interviews with NBC and ABC are featured below:

NBC-15
ABC

The remainder of the week has truly flown by. The V-5 celebrated 1 month on Tuesday and in the NICU this celebration includes a battery of tests. All of our kiddos had repeat head ultrasounds and eye examinations to assess their eyes’ maturity, and to rule out retinopathy of prematurity (ROP). Also, Bella had an echocardiogram to investigate her persistent murmur. All of the quints have murmurs, but we now know that Bella does not have a PDA, Patent Ductus Arteriosis. Theo also had an examination of his intestines to see if they could begin refeeding and wake up his large intestine, just like his little sister, Ellie.

All of the tests brought reassuring news, except for one. Our little Lily Bug had minor PVL, which is Periventricular Leukomalacia. The good news is that her grade 2 brain bleed is resolving and healing, but this new finding of PVL was disheartening. PVL is an injury in the brain that affects the white-matter neurons. Infants with PVL most often display deficits related to motor control (movement), developmental delay and are at a greater risk of cerebral palsy and epilepsy later in life. Only time will tell if our little Lillian will face further challenges.

All of our little miracles are now a corrected gestational age of 34 weeks, which means we get to truly start focusing on feeding and growing. Enter this excited Mama who cannot wait to begin truly breastfeeding. No offense to my trusty pump, but nothing beats nuzzling with your babies. The next few weeks will help us to further assess Lily’s potential for feeding and motor issues, as well as, reveal our kiddos’ abilities to suck, swallow and breathe- a touch task for preemies.

It has been quite a busy week, but overall the Vanderwall family is over-joyed to be reunited. We are forever indebted and grateful for the all of the new and donated items that awaited ua at our home. I have had so much fun going through all of the items, organizing and partaking in some long-overdue nesting. So, thank you once again from the bottom of our hearts for all of the love, support, financial contributions and gifts that we have received. I can confidently say that the quints now have everything they need for when they arrive home. The only remaining item is a way to get them home. Next up on the to-do list…the V-7 mobile, or perhaps we’ll give new meaning to a VW bus!

Happy 3rd Trimester!

Published on July 4, 2013 by onesource4wellness11 Comments

We have reached yet another milestone in this pregnancy! In just a few days we begin our 3^rd trimester!

Although the third trimester often brings aches, pains, and discomfort from gaining half of your original body weight it also brings the joy of knowing that- for me- in 9 weeks or less, I will be holding each of these beautiful miracles!

24 weeks, or 6 months, is a critical milestone because it is the point in the pregnancy where doctors will consider your pregnancy viable, or in other words if you give birth after 24 weeks your doctor’s will help to save your babies. Therefore, from this point on the babies are coming, it’s just a matter of when.

The average gestation for quintuplets is 26-27 weeks, which for me would be in 1-2 weeks. However, my current perinatologist’s average for quint pregnancies is 33 weeks and 1 day, and of course my personal goal is 34 weeks! When it comes to high order multiples average just isn’t good enough.

So, how does this compare to a singleton pregnancy if we make it to 34 weeks? Well, being born at 34 weeks for 5 babies is about the same as being born at 30 weeks for 1 baby. According to all of the statistics, the risk of brain bleeds, respiratory distress, cerebral palsy, etc. all plummet at 28 weeks (you can read more about this in my previous post, entitled Visit to the High Risk Clinic).

Our outlook is pretty good. At my last doctor’s visit on Tuesday, I was informed that I might be able to stay out of the hospital for another 3-4 weeks. This was music to my ears because:

Most make it another 4+ weeks after admission to the hospital before giving birth.
Our pregnancy is stable enough for me to continue to enjoy the perks of living in a home.
Hospital food doesn’t even come close to my mom’s delicious and nutritious cooking!

We also learned at our previous visit that all of the babies are growing at a similar rate now; they are all between the 60^th-70^th percentiles. My side of the family is known for making big babies, so we’ll see how this plays out. The only difference was that Baby B’s legs were much, much longer than everyone else’s. It looks like she takes after her Daddy and will be the speedy queen of the bunch. We also learned that everyone’s hearts, brains, kidneys and circulation look great!

The only concern from the visit was that Baby E’s umbilical cord did not insert centrally into her placenta, which is correlated with causing distress later in pregnancy. Right now, baby E is as playful as the rest, so my prayer is that her circulation stays strong. She has been the doctor’s concern since day one, so I know she is going to be our little fighter.

Now, for those that have bared with me to the end of yet another lengthy post, I plan to present to you the names of our five little miracles…with a bit of explanation of course in the next post!

Visit to the High Risk Clinic

Published on March 16, 2013 by onesource4wellness3 Comments

Keep Calm and Choose Life

It has taken me over a week to process our first visit to the perinatal high-risk clinic. Frank and I went into the visit excited and prepared to askour long list of questions about how we can make this pregnancy the most successful it can be. We anticipated a thorough discussion on treatments, tests and procedures as well as detailed instructions for each trimester. Much to our dismay, this is not what occurred.

The visit started off wonderfully. We had our second ultrasound and had the opportunity to see all five of our blessings at appropriate lengths and with strong heartbeats. The ultrasound tech was amazing! She walked us through everything we were looking at for each of the fetuses. It was breath taking!

Frank and I were so encouraged after the ultrasound that we decided to launch our announcement and once again we were overwhelmed by the love and support from everyone! We don’t have words to describe how thankful we are!

We then headed over to the consultation room to meet our maternal and fetal medicine specialist and his fellow. Even within the first few minutes I sensed tension that you could have cut with a knife. The doctor also did not congratulate us, but hopped right into reviewing my medical history and highlighted each condition that put this pregnancy at risk. Then, he decided to transition to the stat list and read the probabilities for each of the chronic and acute disabilities and conditions. I made it halfway through the list and burst into tears. The fellow kindly stopped and was very apologetic. He just kept saying, “Oh no, Oh no… I’m so sorry.” I sensed his compassion at this point, but unfortunately the floodgates had already opened. The specialist quickly took over and the fellow excused himself; I’m fairly certain he went out into the hallway to cry because he came back with tear-stained cheeks.

I knew where this conversation was going. Our perinatologist then walked us through additional studies on the risks of quintuplets and the benefits of multi-fetal reduction. I must admit his approach was much softer than our first doc, but it was clear he was on a mission. He told us that there was a chance that all five of our children could be born with cerebral palsy. This really hit home; would I be able to mother 5 children with several disabilities? My immediate answer was yes, if that’s what I was called to do.

He also shared several studies that highlighted the importance of gestational age and birth weight. There is no doubt that I comprehend the risks we are facing of CP, compromised lung function, IVH, blindness, deafness and the list goes on and on. But, as a mother-to-be I cannot help but be optimistic and fight for these little ones. I have catalogued the research articles that were shared by the docs below, and would love others’ opinions. But, I have also found countless studies that demonstrate that medical technology today provides strategies to prolong gestation and decrease the risk of neurological abnormalities and respiratory complications. If any others have additional research studies that have been pivotal to their care, please do not hesitate to share. My hope now hinges on the fact that I could make it past 32 weeks. For quints, this would resemble a birth at 28 weeks, which continues to pose a risk, but according to the articles the risks tremendously decrease for (Condition, probability):

Cerebral Palsy (10-20%)
Respiratory Distress Syndrome, RDS (65%)
Intraventricular Hemorrhage, IVH (4%)
Sepsis (25%)
Necrotizing Enterocolitis, NEC (25%)
Survival (80%)
Handicap Free (84%)
Intact (80%)

If we can make it to 34 weeks, the probabilities of RDS decreases to 55%, IVH to 2%, Sepsis to 11% and NEC to 15%. So, our Doom and Gloom conversation, part II, finished up on a very sad note. Frank and I drove home in a haze of what if’s, statistics, and desperately sought some good news. Our next visit back to this clinic is not until our 2^nd trimester, or one month. Until then, we continue to take one day at a time doing all that we can to prepare mentally, physically, emotionally, spiritually and of course financially to parent five beautiful babies.

Research Articles:

Multiple Gestation associated with infertility therapy: an American Society for reproductive medicine practice committee opinion

Contemporary outcomes with the latest 1000 cases of multifetal pregnancy reduction (MPR)

Estimation of neonatal outcome and perinatal therapy use

Long-term Medical and Social Consequences of Preterm Birth

Long-term family outcomes for children with very low birth weights

Multi-fetal Pregnancy Reduction, Committee on Ethics

Management of High-Order Multiple Gestation

High-Order Multiple Gestations

The Case Against Multi-Fetal Reduction

Determinants of Gestational Weight Gain

Outcomes in Young Adulthood for Very-Low-Birth-Weight Infants