Thursday, December 31, 2009

A hearfelt plea from Melanie...

With Melanie's permission I am posting an e-mail she had sent to me this morning. I did not post the family picture however if you'd like to see the Ritzman's and their beutiful family it can be sent to you privately. I told Melanie that there is a strong T18 community out here. I hope that you will raise your voice, share your strength with the Ritzman's. I only "met" Melanie a few days ago through a friend of a friend, but my heart goes right back to those beginning days with Alyssa Grace. My heart now aches for this family and the truama that they are being put through just to see the face of their MIRACLE BABY! How can this be? I don't have answers, but I do have a willingness to help in any practical way that can.~ Trish

A note from Melanie:

I know what I am about to ask is a leap of faith on all your parts. I am asking you to share a piece of your personal and private heart’s story with me, a total stranger, and a group of Doctors you don’t know. I promise I would not miss use this but a thought has occurred to me. These Doctors believe the medical statement “ that Trisomy18 is not compatible with life”. What would happen if they, as a group, were faced with your children’s pictures, medical list of complications that each of you have and are currently facing, and you child’s current ages ???? Then maybe they would see PROOF OF LIFE . Also they would clearly see a realistic view into a lifestyle of right to life.

Would you please help me?!?!?!?
Would you please network this out to anyone who has a Trisomy18 child.
Below I have attached an explanation of what is happening to our family right now.
And a current family photo of us. Melanie and Mike Ritzman of Lancaster County, PA

Well this is the latest
1st my husband sweet honey pill version
and then my right between the eyes Mother Bear version.....
same day, same stuff, & he is the better Christian than I !!!!!!

Mike's Thoughts...

Dear Prayer Partners,

Melanie and I would covet your prayers. We have some disturbing news to share with all of you. Earlier this week Melanie had an OB appointment with a doctor instead of a mid-wife. One of the questions we were to get nailed down before delivery was whether the doctors in our practice would perform an emergency c-section if Baby Joy was in distress. T18 babies typically go into distress during labor. The answer Melanie received as quite disturbing. The doctor basically told Melanie that there would be no need for a c-section because "IT" is going to die anyway.
Today, Melanie and I had an appointment with the NICU advocate and received further clarification... The OB doctors in our practice are "indecisive" as to whether they will perform an emergency c-section if Baby Joy is in distress. We will have a final decision next week when our advocate and midwife meets with the doctors to discuss our case... Please pray that the doctors will perform an emergency c-section if needed.

Melanie's midwife has been great and will do everything that she can to see that Baby Joy comes into this world. The NICU is on board and will do what they can to make sure she gets the care she needs. CHOP, DuPont, and John's Hopkins do work with T18 issues. The only problem is whether our delivery doctors will perform an emergency c-section if she is in distress.

On a positive note, we have been put in touch with 7 families that are raising T18 children ages ranging from 13 months to 23 years. This makes the above prayer request that much more distressing. We have a friend that works at Johns Hopkins and she is getting us contacts there with medical professionals that deal with genetic diseases. One of the families that we are in contact with is giving us contact information for doctors at Children’s Hospital of Philadelphia (CHOP).
Melanie and I are in a spiritual battle regarding the sanctity of life... The medical community is split on how to handle children diagnosed with T18. She has been labeled and is not even referred to as a person. She is an "IT". It appears to me that the sanctity of life only applies to healthy children.

Please pray that Melanie and I keep our "cool" and can maintain a witness through this entire process. Please pray that we will be able to find another OB practice that we can work with if these doctors will NOT agree to perform an emergency c-section. We have had a lot of emotional ups and downs.

Well, I think I have sufficiently overloaded all of you. Please feel free to ask us any questions that you might have..

Thanks for Praying


Tuesday, December 29, 2009

A pregnant mom whose baby has Trisomy 18 is looking for information

Alyssa looking very compatible with life, Christmas morning with some of her gifts.
Can you explain T18 in 20 words or less? Neither can I and so I need your help! I just came in contact with a lovely Christian mom, who is currently pregnant with a baby girl diagnosed as having Trisomy 18. We had a long talk and this mom is on the ball with getting informed and preparing for her future little one. Melanie is a well experienced mom but is new to the world of T18. She still has questions and would love some encouragement for this journey.

I didn't know that Alyssa would have Trisomy 18 prior to her birth, so I am at a loss for helping another mom prepare. If you would e--mail me or leave your contact information I will get you in contact with Melanie. They do not have a website/Facebook. Melanie and Micheal's baby girl is due March 19th! So this makes Melanie about seven and a half months pregnant.

Melanie was recently seen by an OB in her practice and she shared with me the following experience:" He was recommended because he had birthed two Trisomy18 babies already.
I soon realized that he had just let them die upon birth and his statements to me are following: We do not need to do a cesarean if "it" has distress during normal labor"it" is not compatible with life and should just be left to die I WAS AND STILL AM ILL TO MY CORE with that Doctor's thoughts..."

Alyssa is 17 months old, my heart is overfilled with the joy that she brings to our everyday lives. I am learning more and more that this T18 community is strong. If you have information that would benefit Melanie and Micheal in their situation, please leave a message here and send along your contact information to me so I can forward it to them.


Christmas Photo Ops..

Merry Christmas and Happy New Year ! Here are few pictures taken over the kids winter break:

The Girls

Alyssa's oldest brother and her older sister and I

So sweet!

Wonder if Jess tastes good?

Miles of Smiles

Cuteness coming and going...

One of my favorite pictures:

Definetly a Christmas to remember!

Wednesday, December 9, 2009

Admitted to and now home from the hospital

Alyssa was taken to the ER at Dupont on Friday due to her oxygen saturation level dipping down into the 70’s. We didn’t have oxygen at home, so off to the ER we went. This was her 1st stay at DuPont. All of her care has been at CHOP with the exception of her pulmonary care. Alyssa is home now and doing well with the support of oxygen. We hope within the week to have her Bi-PAP machine working fully to her benefit. So without further ado here are the excerpts:
Alyssa and Nurse Shirley (Day 2~ feeling okay)

December 5th-December 7th : I found a computer! They couldn't hide it from me. Friday night started with me out alone, doing some Christmas shopping only to follow up with a hospital visit later in the night. To recap the last month had been relatively boring. Most of our appointments were in home. Alyssa had a few routine doctor appointments but nothing too interesting. We spoke with Alyssa's pulmonologist last week and she was placing an order for us to have oxygen and a Bi-Pap machine at home for Alyssa. These last few weeks have been filled with catching up on/organizing paperwork, scheduling appointments, following up with doctors on the phone and managing the some other thing for the older kids.
Then as some of you know, last week the stomach virus hit our household. J and E got the worst of it but we all were affected. So from late Thursday night until Tuesday sleep was just an unmet dream, laundry was a nightmare, and I was a zombie. By Thursday I thought we were getting back on track but Alyssa seemed a little congested. She was also bringing up mucus. I attributed it to the Nebulizer treatments that we've been doing for the last 6 weeks or so (that it was working at getting gunk out of her lungs). Yet Thursday night her oxygen stats were dipping lower than usual and took longer to recover. By Friday she was coughing frequently and having a little difficulty managing the extra stretchy mucus. Friday night her Oxygen stats were in the 70’s or in the low to mid 80’s and was not bouncing back to a good level 95+or staying in the 90's for long. So the zeal from Christmas shopping was halted with a trip to DuPont. Ed stayed with the kids and Alyssa and I came down around 3am. Alyssa's pulmonary doctor is at Dupont which is why we are here vs. CHOP. This is her 1st experience being admitted here. She is on oxygen now and doing better. Off of oxygen she is still low. They are thinking lung infection..More information to come. I've got to run as this area is closing. I'll update more when I can. I don't expect to be here more than a day..We will see.

Alyssa receiving her Nebulizer treatment and Chest PT.
We'd appreciate prayers for affective treatment for this lung issue for Alyssa and comfort she is just cranky. That'd we'd seamlessly get supplies ordered and delivered home for management of Alyssa's sleep apnea prior or near the time of her discharge. Also a neat lady that works with Alyssa was recently diagnosed with and recovering from Cancer treatment please pray for her recovery. Hannah (CB Hannah317) is also recovering from a recent surgery. Not to mention several friends and supports recovering from the flu, stomach bug and other fickle colds prayers for them to heal and return to their activities would be welcomed too. I keep promising to update a few different events and I really want to/need to do this. Prayers for me to sleep better so I can get better organized in thought and action would be great. Aside from the recent setback over all we are okay. Hope you are too. Happy belated Thanksgiving.
Well we are still at DuPont. My understanding is that they want to wean Alyssa off of the supplemental oxygen and then watch her to see how she does. She has a non-specific lung infection... in other words they know what it's not: RSV, Flu, and Pneumonia~ which is great. Yet without a clear idea they are shooting in the dark on treatment. Alyssa is on both oral steroids and antibiotics to treat this infection. In addition nebulizer treatments w/Chest PT every 4 hours (I do it at home 1-2 times a day) along with the oxygen. Its working as she is bringing up lots of gunk. They use a Yankour (a suction tube for the mouth) to get out the secretions other wise she swallows it and then vomits some time later. Funny I was talking to Kim (Alyssa's Clinical Nurse at home) about the Yankour the other day. Three days ago I had never heard of it or seen one. Now I'm ready to take it home and use it! We know Alyssa has obstructive sleep apnea so I think there isn't a rush to get her out till we know when we will have oxygen and the Bi-PAP at home. She'll only need it at night thankfully. Thanks for the continued prayers. By the way Ed is doing a great job wrangling the older crew. Almost wonder if I'm needed! He got them to clean; they went out on the town, sounds like their having a blast with their dad. I'm glad that we are able to "tag" team like this that IS half the battle. Okay till later~
Alyssa loved her therapy and would often fall to sleep during the session.

Okay the what- if's are starting in my head...what if this is pulmonary hypertension? They are treating this as a infection because everything else came back what if this is PH? I am looking forward to the break of night with dawns light…Which means rounds will soon start. Then I can talk with the doctor and get some facts: asleep with O2 Alyssa is at 97% dropping occasionally to the mid/low 90"s. Without she is all over the place but not lower than 84% unlike at home Friday when she dropped to 71%
Now either b/c of less intake or I don't know why Alyssa isn't wetting her diapers but is having loose stools. So she may need to be this will all play out...You got me! I am trying to stay present in the grace and gifts from God. Even though I fall short he does not. Prayers that Alyssa will "bounce" back would be great that whatever is going on will be well managed and resolved allowing her to continue making strides...Sorry for the choppy nature of this entry on a strange hospital PC/TV and it isn't easy to type or see.. I hope this makes sense enough to read. More later
On this PC/TV again!! (I’m) feeling better now Alyssa and I both. We enjoyed a visit from Nancy and Tammy. What a nice way to pass an hour or two chatting' it up with friends. It definitely was refreshing. When I got back to Alyssa's bedside, she was just waking from a nap and ready for her lunch. I had an opportunity to talk with the Pulmonologist and Alyssa does not have pulmonary hypertension. However many issues that she is dealing with can lead to it if not well managed. Alyssa has a infection and it is clearing. She will come home with oxygen. We will find out the usage of it tomorrow and she also meets with her Pulmonologist tomorrow before we are discharged.

Marta I do suction Alyssa nasal suction but never done oral suction I was told today the way you had mentioned is good for kids that have a sensitive gag relax, which Alyssa does? I just have to get comfortable with it all.

Lord willing, we will be home sometime tomorrow. Thank you for staying updated and support. It's nice to have a place o spill my thoughts, reflect, get encouragement and get back on track. It's not easy, but this is how it is and I thank God for continual presence. To take a thought expressed by Elizabeth George: "..With a heart full of faith and hope, with God by your side and by his great grace" I can love him no matter what b/c he has seen and does oversee every detail of my life. At 2 or 3 am it's hard for me to stay focused on this fact, multiple sleepless nights make this promise feel distant, ongoing trials cause me to wonder but deep down I know it to be true.. I've got to trust and obey. Next time I hope to be updating you from home! Tammy and Nancy your visit meant so much thanks you for coming down!
We are home! Alyssa and I arrived safely home from the hospital yesterday afternoon. She was released with oxygen and as I am learning with hospital discharges once you come home there is still "stuff' to do to meet the doctor’s orders. After reaching home the DME (Durable Medical Equipment) Company came by with the oxygen tanks. We weren't totally overwhelmed with the idea of having this in the house as we had some when Alyssa was on Hospice service. The difference is this time we are using it, which is overwhelming at first. Prior to the hospital stay, we were I the midst of re-arranging Alyssa's room to better organize the equipment and supplies. She was also set to graduate from the bassinet to a crib. The crib arrived while she was in the hospital so she got to take her first test run in it last night~ she loves it. We love that we can see her without having peer over the sides or under a canopy.

So we had to make room for the air-room converting oxygen machine, the 2 medium size tanks, 3 small tanks, and the pending "M" tank a.k.a the BIG KAHUNA all of which are back up tanks and/or tanks for when we are out and about. Right now Alyssa needs oxygen (and the bi-pap machine) at night. During the day she only needs the oxygen if her saturation level drops below 93. So after getting a lesson or two on how to handle the oxygen, I was out again getting medication. Finally after her night routine of a Nebulizer treatment and Chest PT ... I was able to better relax and enjoy being back home.

We woke up this morning and headed out the door to fulfill some longstanding appointments the first was for her 6 month Ultrasound : a cancer screening for Whilms Tumor and the 2nd with her Orthopedic doctor. Both went well. For fun Alyssa threw in a visit with a GI we had never met prior b/c her G-tube was significantly leaking. Thankfully we happened to be in the same building as a GI clinic, so we were squeezed into the schedule. It turns out buttons often leak after/during illness. Too much to explain her suffice to say we added another cc of water and there is improvement. We got home about 3:30 and shortly thereafter the DME Company was back this time to bring and teach us about the Bi-PAP machine. Unfortunately miscommunication, and a petite baby = not being able to use the Bi-PAP. Yep we have it but can't use it till they can secure a properly fitting mask/head gear. The respiratory therapist from the DME was concerned that the hospital would release Alyssa without training and proper equipment. The hospital therapist put the oweness on the DME Company. In the middle lies Alyssa. Thankfully the oxygen is doing a wonderful job at keeping up her stats. We also have the support of the pulse ox, and if she should need it the apnea monitor.
Tomorrow we follow up with Alyssa's pediatrician. Hopefully she will be getting the H1N1 at this visit too. On the fence about it before but now seeing how easily her respiratory system can weaken, it's a faith filled leap to a needle prick. Our hope is that it will only benefit her. Okay I'm zonked and a few loose ends yet to tie up!!Alyssa at home w/oxygen resting.