11.23.2008

Biophysical and Max's Birth Plan

Tomorrow Max will have yet another biophysical. Last week he passed again with a 10 out of 10. I will request tomorrow that they also measure him. His last measurements were taken in MN and he weighed then just under 3 pounds... So flash forward about 4 weeks and hopefully he has gained no less than 1 pound. I will post after we find out, so please pray!

I am trying to help his weight gain by enjoying fattening treats!! Yes, that is the only reason...well, okay I have a great sweet tooth as well!!

Today Dustin and I wrote out Max's birth plan this will be given to all the hospital staff taking part in his entrance into this world. I am going to post it below, as it may be useful to someone going through this in the future. And we had to really research and seek out exactly what we wanted to have in our plan for him. It was difficult to write but now that it is done I feel so much more prepared for that day. Please continue to pray for us and please pray that Max continues to grow and that his heart will heal. As the time draws near (about 3 weeks away) the need for your prayers increase. Thank you to all. Dustin and I can't express enough how much it means to have all you out there praying on our behalf. The fact that you are sharing this journey with us means you share in our love for Max, thank you.

We love you and give thanks for you.

Trish and Dustin


Maxson Linwood Hagen Birth Plan

At 20 weeks our son was diagnosed with Trisomy 18. As of now we know that he has a VSD, an overriding aorta, a kidney that is not functioning, two cyroid cysts on his brain, a cleft foot, clenched fists, and low set ears. This is our first pregnancy and our son was conceived using fertility, he was prayed and longed for long before this time. Considering the diagnosis we have made the decision to carry our son Maxson Linwood Hagen to term with the understanding that he may not have a long life. We firmly believe that Max is a gift from God and we will treasure every minute we have with him. He is deemed “Our Miracle Max”, we are praying for a healing miracle, but do understand we have already received our miracle in his life alone.

Below is a list of choices we have made in regard to Max’s delivery and life, we hope that the list will help in the experience we desire with our son.

Delivery
We are planning on inducing labor on December 19, 2008. Dr. Tong will be delivering Max. We wish to try a natural birth, but will revert to a c-section if Max shows any sign of distress, this will be under Dr. Tong’s discretion.

Trish does not wish to have an epidural because it may slow down the delivery process. However, she is open to other forms of pain management, including drugs that will not affect her experience. Hydrocodine is a drug she has taken in the past that has not given any side affects.

Dustin wish’s to cut the umbilical cord. He will also be by Max’s side at all times. Dustin will also be making any decisions that may come up regarding Max’s life.

We wish to keep our room open to family and friends up until otherwise requested by Trish or Dustin. We would appreciate a nurse or staff member to give updates to family and friends that are waiting.

We would like for Max to be monitored throughout the labor and delivery and to be immediately informed if Max is experiencing distress. If there becomes a point in time where it appears that Max could possibly die during labor, we want to have a C-Section to get him out and prevent that from happening. We would want to take the time to properly medicate Trish, via spinal block, so she does not have any pain during the procedure, but at the same time, we want to ensure that she is alert throughout the procedure and that Dustin is by her side at all possible times. We want Trish to have the best physical outcome possible, but our primary goal is to ensure that Max has every chance to meet us and that he is protected from unnecessary pain and suffering. We have come so far in our journey to meet him and then let him go, that we will want to do whatever we can to prevent missing out on that chance.



Following the birth, c-section or vaginal:
· If Max is not breathing immediately after birth, we ask that stimulation be used to initiate it. If oxygen is needed, we agree to its use and other forms of non-invasive methods. We do not want extraordinary measures taken to maintain his breathing.
· If Max’s heart is not beating at birth we wish to have him wiped, wrapped and handed to his mother and father.
· If Max passes during our hospital stay, please notify staff members as applicable, and please allow us space to grieve without abandoning us.
· Dr. Kemp will be assisting Max’s care and is working with us to set up hospice.
· Our goal is to have Max home with us on Christmas but until we can leave we wish that Max be kept in our room at all times.
· Trish wish’s to try to breastfeed Max if he shows interest.
· If Max cannot orally feed we request other measures be discussed with us at that time.
· Dustin would like a second bed put in Trish’s room if possible so he can stay with her and Max at all times.
· We would like to perform kangaroo care with our son along with other methods of comfort care.
· If Max needs any type of drugs that will relieve pain we are open to discussion.
· Please do not make visiting hours an issue, as time will be of the essence for us and we do not want to have any avoidable regrets or missed opportunities.
· If Max passes during our stay, we wish to keep Max with us until the funeral home comes to get him, also, please help us gather mementos. Here is a list of those things, if there are others that you think we may want, we would be grateful for your suggestions.
1. Bassinet card
2. Hats
3. Baby blanket
4. Photographs
5. Hand and foot prints
6. Hand and foot molds
7. Lock of hair
8. Hospital bracelets
9. We want to bathe and dress Max at an appropriate time
· There will be no autopsy done on Max.
· We have chosen Fulkerson Funeral Home to take care of funeral arrangements.
· There will also be a professional photographer that will be standing by to take photos when needed.

We may have only seconds or minutes with Max alive, but we may also be blessed with hours or days. Whatever we are given, we intend to make the most of it, and we ask for your help and support in accomplishing that. We ask that everyone refer to him as Max or Maxson. It is our wish that for his birth and during his short life; Max be surrounded by a loving and caring environment.

This is a very difficult time for all of us, including you, as you work to support us and care for us throughout this part of our journey. We truly appreciate your help and support, and ask that you understand if we seem indecisive or experience a variety of emotions at times. We also appreciate and find great comfort in your expressions of grief and joy, be it through tears or even through humor, so please do not hesitate to cry or be sad in front of us, if that is how you feel.
We have tried our best to prepare for this short time with our beloved Max, and we want to be able to spend as much time with him as possible. Thank you so much for helping us and supporting us through this celebration of our son’s short but precious and meaningful life.

THIS PLAN IS NOT WRITTEN IN STONE. WE CAN CHANGE OUR MINDS AT ANY TIME CONCERNING ANY ASPECT OF THIS PLAN, TO INCLUDE FULL LIFE SAVING MEASURES.

8 comments:

Taylor said...

I am praying so hard for you in these moments. Reading your blog brings back many memories for me. You are not alone in this. Christ is carrying you and I am here if you need to talk to someone who has walked your road... fertility treatment, an uncertain pregnancy, I know where you are.

Can I post a message and a link to your blog on mine?

Jess said...

Trish, Dustin & Max- I don't really know what to say; I just wanted you to know I'm still here.

Josh Bradley said...

Praying for you guys.

www.trisomy18hope.org

Kristin (kekis) said...

I found Max's Miracle blog through Taylor's blog. After following Taylor's story and Stacy's story (sgirl79.blogspot.com) of loss, I've only had a very tiny glimpse of the difficult times you are facing and blessings you will experience. Please know that you and your family will be in my thoughts and prayers.

montanadays said...

I cannot imagine how hard it must've been to prepare Max's birth plan. It is the most beautifully written plan I've ever seen - such love, care, and detail.
I'm praying for your family!

Anonymous said...

Hi-
You don't know me, but I found your blog through Taylor's as well. Although I have not experienced what you are going through, I am a Mom to 4 healthy children. I have also had 3 miscarriages, so I can understand your pain, even though it has to be so much harder to go through what you are. My cousin had a trisomy baby, which is how I heard of living with trisomy 13's website.
I am not in the medical field, but as someone who has been induced for labor 3 times, I would suggest talking to your doctor about having an epidural, and the possibility of using pitocin to keep the labor going. I was started with pitocin. I had a good experience with it, and took the epidural after I got into active labor. I liked that I never felt "drugged" or sleepy, as some medications can make you feel.
Not sure how they plan to induce you, but if it is with pitocin, you will most likely want to use some form of pain management, as it can be a sudden onset of contractions. Everyone has their own medical background and preferences, and you need to decide with the doctor what is best for you. If you have the epidural, and suddenly need the c- section- you would not need to wait for a spinal to take effect, or have to be unconcious for the birth. Since this is your first delivery, hopefully they will not have your labor get too hard too fast.
Like I said, I am not a medical person, and you are probably getting lots of unsolicited advice..
just felt the need to let you know
I'll be praying for you, and checking on your blog.
Best of luck to you.
Lynne

Susan said...

This is a beautiful birth plan....

Susan in Indiana

Carla Burlando said...

What a wonderfully written birth plan. You guys sound as prepared as anyone can be with all the uncertainties that surround Max's birth and life. The letter for the staff is a great idea and you have done your research well. And the fact that you are aware that the plans can change at anytime is great...keep all options on the table.
I read one comment about an epidural. I have delivered 4 babies and two have included partial induction (pitocin and one time cervigel) to keep the contractions going. I had an epi with my first son (who died of trisomy 18) but after I got it labor went so fast that I only had relief from the last 20 minutes of a 48 hour labor. Better than nothing at that point...but not much. The nurses always told me to hold off on the epidural because it might slow it down but for me it always sped things up because my body could relax. What always brought things on fast and furious was breaking the water (it was then I always begged for the epidural but was usually too late:) The thing that stopped the labor dead in its tracks for me was demerol. After having natural labor with my second son I wanted to have an epidural with my third and last ...so I could enjoy the experience and be there mentally ....instead of crazy pain land. It didn't work out like I had hoped and after having cervigel ,to get me over the 3 cm mark I had been at for days, I had horrible contractions on top of each other (definately not natural contractions). When they finally came for the epidural I was in transition and ready to push....a little too late to say the least.
Keep he epidural option on the table, induced labors are different than non induced labors. And you could get into a c section much faster if needed if the epi is already in. just a thought. see how it goes. Don't feel like a cop out if you opt for the epidural...you will still feel the labor and birth just less intensly. The benefit of the epi is that it doesn't go through to the baby like some drugs do. One more piece of advice is watch how much or what you eat during labor. With my daughter the lunch people brought me a tray complete with hashbrowns and chicken nuggets. I was hungry so in between contractions I ate. Well I puked and puked while I was giving birth to my daughter and for the first half hour of her life I was wretching over a bowl. Not exactly how I had pictured welcoming her into the world. :)
Max sounds strong and you guys are amazing. Trust your gut and give yourselves a lot of grace. I will be praying that you have many precious memories with your son.