First few months home with Liam

Besides the fact that we were First time parents with TWINS to take care of & lacked in sleep, Liam was anything but an "easy" baby.  He constantly needed to be held / bounced or he would not sleep & feedings were long & strenuous.  Because Liam was so small his medication for his diabetes insipidis needed to be given sub-que which meant we had to give him a shot twice a day.  That was very intimidating for a new mom & I struggled through much of his care & worried constantly about him.  But one thing was certain - he had the BIGGEST wide smile & his eyes were Contagious!!  Everyone who saw him instantly fell in love with him.  He would look into your eyes & stare into your soul.  I knew I had to try harder & be stronger for him...

                                      

Dec 16th - Liam & Logan were born (due date was Jan 12th, 2012)

The previous post gives you the idea of how I was feeling when I learned of Liam's condition but what really scared me was not knowing what to expect when he was born.  So far he was growing & besides the extra fluid in the sack he appeared to be doing very well.


35 wks pregnant - measuring at 52 weeks

The last few months of my pregnancy, I had been getting stress test done 2-3 times a week & on Dec 16th (36 weeks & 1 day pregnant) I had gone in for another stress test & to do some additional testing.  Other than that I felt great & was relieved I made it to 36 weeks (which is considered full term for twins).  After our appointment my husband & I did some shopping & went back to my office to gather some of my things.  While there I received the phone call that I was needed back to the hospital & was going to check into labor & delivery.  What?!?  I was having the babies???  Turns out I had preeclampsia & they needed me to deliver right away.  So many thoughts were racing through my head & all of a sudden I began to cry.  Unfortunately these were not the tears of Joy but the tears of fear.  Finally I would know if my Baby "A" would come home with us or not.  Would he be able to breathe on his own?  Would his heart know how to beat?  So many questions.

Right before C-Section

Luckily from that point everything went very quickly & at 8:25 pm @ the University of Utah Hospital, I gave birth to my Beautiful Baby Boys!!  Liam & Logan Purser.  They got Liam out quickly gave me a quick glance at him & took him straight to the NICU.  Logan was then extracted from my tummy & again I was just given a quick glance at him & then they started to clean him up & then all of a sudden he was gone as well.  I knew that I would not be able to hold Liam, but where did Logan go?  Why were we left in this sterile room without any crying babies?  It wasn't until later I was told that Logan had stopped breathing & needed to be incubated & was currently sedated but doing much better.  What?!?  Both babies weren't healthy???

 

Liam - 4 lbs 16 inches long

 

Logan - 6 lbs 3 ozs 20 1/2 inches long

 

I had my own "issues" to deal with so I was unable to see either of my babies until the next afternoon but my husband kept me updated with pictures & so I was able to love them from afar.  But the crazy part about all of this is that Liam was doing so well - He NEVER needed oxygen & all of his vitals were strong & best of all - Mike got to Hold him!!!  Unfortunately since Logan was sedated we were unable to hold him until the next day & so the experience we "expected" was the complete opposite!!  But both boys were Beautiful & things looked well!!

Mike holding Liam for the first time

Logan stayed in the NICU for 2 1/2 weeks due to troubles feeding & needing oxygen & Liam was able to come home after 3 weeks.  While he was in the NICU we learned how we would feed him with his special bottle (the Haberman) due to his cleft lip & palate.  We also learned how we would use the NG tube (feeding tube through nostril cavity) to help get him his full nourishment until he was strong enough to eat all of what he needed himself.  It was also discovered that he had diabetes insipidis & would need medication for that.  We were happy to find he did have his thyroid & pituitary gland although neither one of them were fully functioning so again more medication would be needed.  A MRI was also done & it was confirmed that he did have Semi-Lobar HPE vs's Lobar & that the back portion of his corpus callosum was not formed.  This just told us that he will have seizures & that development is unkown but one thing was sure - OUR BABY WAS COMING HOME!!  (with lots of extra help of course ;)

Liam being transported by life flight for MRI (had to move hospitals so they had to transport him)

We were definitely nervous but excited to get to be together as a family

 

(first family photo)

 

The first time I heard the word "Holoprosencephaly"

I felt that the best way to start this blog was to take you back to my original post I put on our family blog before I had Liam & Logan.  A lot has obviously happened since this time & a lot of these questions have been answered & his diagnosed changed back to Semi-Lobar HPE, but it really captures how I was feeling at this time.

You can also view the original post here

 

Oct 30^th, 2011

I think this post will explain why I haven't been the best "mother to be" with keeping you guys updated w/ all the wonderful changes that happen when you are expecting your First Set of Angels into your Home :) It was hard for me to post on the Blog and "pretend" like things were going wonderfully when Indeed we were being faced with some big Challenges but I wasn't quite ready to tell these things to the World (my Blogger world that is), well now I am ready... (this post will be long and I am putting it more into a journal format so I have it to remember by later)

Timeline: 20 wks of pregnancy – Aug 23rd

We had been going into the Dr every 4 weeks for Ultra sounds & at our 20 week UltraSound we were excited to see our Little Boys again and confirm that they were still boys (which we had discovered at our 16 week appt). Everything seemed to be going smoothly and the Ultrasound Tech was doing all the needed measurements as we Ooo'd and Aww'd at the little guys. After a little while she said that she needed to go get the Dr because there were some "concerns". I will never forget how I felt and of course fear came across me. What were these Concerns? and so of course I asked and all she said is that it appeared that Baby A had a Cleft Lip and there was something with the brain and with that she left. When she left Mike and I just looked at each other and were of course very confused and concerned. No one wants to hear that there is something wrong w/ their Baby and the thought that it dealt with the Brain made me even more nervous.

When the Dr came back with her he explained that Baby A had a Cleft Lip and they were not able to locate the Corpus Collosum in the brain. Of course I didn't quite understand everything that was being said right at that moment but all I did understand was that something was Wrong and even if the Dr hadn't said much all I needed was to hear the tone of his voice to understand the seriousness of the situation. After that we met with the Dr more and were advised that we needed to have another Ultrasound with a Specialist @ the Hospital and after they got the results it would be decided as to how my care would continue because this was not a common thing to see. Our Dr felt that we would need to transfer our care to the University of Utah but one thing was for certain - our Journey of starting our family continued to be a bumpy one & again my Strengths were tested...

The next day we did see a specialist and they confirmed what our Dr had seen. The baby had a Cleft Lip and he had a Cleft Palate and the section where the Corpus Collosum should be was not visible. We then were scheduled to see a Brain Specialist at the University of Utah to get a more detailed understanding of what this all meant.

Of course we did our Research and were comforted in the fact that this was not a matter of life or death and the Cleft lip and Palate were repairable, it would just take a series of Surgeries through the course of our baby's life. The condition of the Corpus Collosum is called Agenesis of the Corpus Collosum were there is no treatment you just have to treat the symptoms (The Corpus Collosum is the section of the brain that acts as the communication center between the left and right hemispheres of the brain).

Time Line – 21 weeks of pregnancy, Sept 1st

When we went to the University prepared to ask our Many Questions something else was discovered during the Ultrasound. Our baby was diagnosed with Holoprosencephaly (it took me a few weeks to even learn how to say this word). Great! ANOTHER new thing to learn and this is something that I was not Prepared for! I had no questions!! All I could do again was cry and try to comprehend the things that we were being told. We even had a Genetic Counselor come speak with us because in these types of "cases" it is common for there be a Chromosome Defect and if there was it was called Trisemy 13, where there is an extra Chromosome 13 and they consider that to be Lethal (meaning the child would not live much past birth if he made it to birth). Then we were told that if he did have this Chromosome Defect and if the babies were Indeed Identical then Baby B would have it as well and so far the thing that was keeping me somewhat optimistic was the fact that there was another Baby in there that appeared to be Totally Healthy and now that was being taken from me! Of course I felt Robbed!!!! There is a test we can do to see if they have this Chromosome defect but the risks outweighed the positives for us so we turned it down. It was even brought up the option of doing a "selective" birth, where we would abort our Baby A and that was of course OUT OF THE QUESTION! Why were these Dr's talking to me like I was an adult??? I felt like a little kid trapped in someone else's body expected to be Mature and know how to deal with these things.

Here is a definition of what Holoprosencephaly (HPE) is. At this point they had put our baby into the “SemiLobar” category

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HPE is a disorder characterized by the failure of the prosencephalon (the forebrain of the embryo) to develop. During normal development, the forebrain is formed and the face begins to develop in the fifth and sixth weeks of pregnancy. HPE is caused by a failure of the embryo's forebrain to divide to form bilateral cerebral hemispheres (the left and right halves of the brain), causing defects in the development of the face and in brain structure and function.
This brain malformation can range from mild to severe and is classified into four types:

(1) Alobar (severe) - where the brain is not divided and there are severe abnormalities.

(2) Semi-Lobar (moderate) - where the brain is partially divided and there are some moderate abnormalities; where there are two hemispheres in the rear but not the front of the brain.

(3) Lobar (mild) - where the brain is divided and there are some mild abnormalities.(4) Middle Interhemispheric Variant (MIHV) - where the middle of the brain (posterior frontal and parietal lobes) are not well separated.

HPE is a condition without a cure or a standard course of treatment. Treatment for HPE is symptomatic and supportive. Children with HPE can also have secondary conditions such as mental retardation, epilepsy, diabetes insipidus, pituitary and hormone disorders, movement disorders and spasticity, gastroesophageal reflux, respiratory disorders, and hydrocephalus.

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At this point the Dr's couldn’t tell us much as to whether or not they think our baby would live a long life they just said that children with Semi-Lobar live alot longer then children with Alobar (with this condition children have a 95% chance of not surviving past birth). So the answer to your question is "Yes I was Freaking out!"

After that Appointment our Medical Care was transferred to the University of Utah and that is where I will deliver. We were having appointments every 2 weeks to check on me and they continued to schedule ultrasounds for every 4 weeks w/ an MRI scheduled for Oct 20th so the Dr’s could get a much closer look at Baby A’s brain.

During these ultrasounds it was also found that the fluid in Baby A’s sack was on the High side which can cause Preterm labor as well as put pressure on my diaphragm making it hard for me to breath. This would continue to be watched closely, BUT Baby B was still looking Healthy and besides the already visible concerns w/ Baby A he was growing right on track as well and all of his organs appeared to be working well and he always had a Strong Heart Beat. We were happy/relieved to see this. Now the question was, does our Baby have the Chromosome Defect and what exactly is our baby going to struggle with in his life and the worst thought of all was “Will our Baby A ever come home with us?”

The Dr’s couldn’t answer this for us. Children in these cases are all so unique and different that until he is here we really won’t know how he, himself, will do.

Timeline – 28 weeks of Pregnancy, Oct 20th

This was the day of the MRI and where we were supposed to also meet with a Cranial Facial specialist to discuss the process for repairing the palate and lip and the chances of our baby being able to take a specialized bottle for his feedings or have to be fed through a feeding tube. Sadly, the specialist was in a car accident and was not able to meet with us.

We got our MRI results a week later and this is what we found out:

It was confirmed that our little Baby A does indeed have Holoprosencephaly BUT they moved him into the Lobar category. If you remember they thought he was in the SemiLobar category which is under Alobar (which is the most Severe) but luckily Lobar is even lower on the spectrum and is considered to be a more "milder" form of this condition. Here is the defination of this type:

Lobar (mild)--where the brain is divided and there are some mild abnormalities (there is a well developed interhemispheric fissure however there is some fusion of structures).

Although it says "mild" we still needed to acknowledge that there is a defect to the brain and so how our little baby will do is still unknown. Every baby is unique and the way they progress is completely dependent on them and their own abilities.

The Dr also confirmed that the Corpus Collosum has not formed correctly and is partially missing, but again we are glad that part of it is there so hopefully it can be strong enough to make up for the section that is not there. Also when they reviewed the MRI results they looked for signs of a condition called "Heterotopia". The way the Dr described this to me is that sometimes the brain's fibers can be somewhat "tangled up" and will also affect the functioning of the brain but again we were Blessed and they did not find signs of this. The Dr said that although this is good, it still cannot be ruled out because the brain continues to develop into the first few years of a child's life so this will need to be something that they will continue to check after he is born.

She also referred me to check out a website for The Carter Center - if you would like you can check it out at www.carterdatabase.org/hpe. There are some articles you can read and also links to other sites that work w/ HPE (Holoprosencesphaly).

So right now this is where we stand. I have an appt on Thursday & we can discuss even more what was found on the MRI but I do feel strong that our little baby A will come home with us & because of his brother, he will learn much from him and will impress the Dr’s & ourselves with everything that he will be able to do despite his disabilities.

Honestly through the course of all this I have experienced many different Emotions including Anger, Sadness, Jealousy, being inadequate, but most importantly Comfort!! And I really owe this Comfort to our Heavenly Father and for our Wonderful Friends and Family who have been praying for us. I know that this is helping us to Press Forward and is helping our babies to grow and be as strong as they can be.

I do find myself, once again, asking why?? Why are we going through this trial? But if there is something I am certain of it is that we will have a Little Angel amongst us and although it frightens me not knowing what will happen and of course doubting my own abilities, I also feel blessed to get to have him be a part of our lives. And we are so blessed that we have two babies coming because I KNOW his brother will help strengthen him and is probably helping now even though they are still inside of me.

I hope that this post doesn’t leave you having Pity for us or feeling any type of Sorrow because we are still early in all of this and honestly my pregnancy has been great! I feel great (although I am already measuring almost at full term) and we really have a great support group and are blessed to be so close to a hospital that is able to take care of our Baby the way he needs to be, I just felt ready to tell my Blogger Family what was going on. I will continue to keep you updated and I hope that the news continues to get better but I really appreciate you all and appreciate you continuing on this journey with me and my family :)

We Love You!!!

Why "Wings for Liam" was started

My son, Liam Purser, was born on Dec. 16, 2011 with a condition called Semi-Lobar Holoprosencephaly (HPE).  When we first heard this word I was overcome with emotion because for one I couldn't even pronounce it, let alone comprehend what it was.  Since that time we have learned much about this condition but the ultimate thing we have learned is that the Dr's can not tell us what to expect of our son.  Every case is so unique and so our Liam will have his own unique journey and so far that has been true.

 

With any condition that deals with the brain there are many "unknowns" and the expenses accumulated to help us care the best for our little fighter are, and will be, anything but small.  Anything that you are able to contribute to help us will ultimately allow us to give Liam the best life a child with his condition can have.  And with that it will allow Mom & Dad to get the necessary things we need to help care for him.  I hope you will read this blog and become a friend of Liam's and embark on his journey with us :)

 

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