Bryan and I often call each other “Debbie Downer” when one of us makes a depressing comment. This term is a reference to the skit of the same name on Saturday Night Live. This whole week has been a full of these “Debbie Downer” moments. But please read on…
On Monday, President’s Day, Bryan and I went to look at cemeteries around the area. If our unborn daughter doesn’t survive, we will most likely have her buried at the same cemetery as my great grandparents and great-great grandparents. In fact, as we were looking at my great-great grandparents headstones we started walking around the area a bit. Not too far away is a whole area designated just for baby graves. At the time it gave me peace knowing that she wouldn’t be too far away from relatives. Then I spent the next two days crying about the possibility of losing her.
Tuesday was the 18th anniversary of Bryan’s mom’s death from breast cancer. He was only 14 at the time. Even though it was so long ago, there are still moments when we feel her absence. I wish she could be here now as a cancer survivor, giving Bryan a hug, and telling him everything will turn out okay.
Shortly after Christmas, Bryan and I were in the mall when we happened to wander into a children’s department. I told him I wanted to buy a newborn dress at some point. Without telling him, he knew why. We looked for a few minutes, and then quickly gave up the search because it simply made us both too sad. On Wednesday, I found a newborn dress for our daughter. Of course, I hope it will be her dedication dress, but there is that hovering reality that she will wear it as a funeral dress. That is the crazy thing about right now: one moment, I’m thinking we should unpack the box in the garage with the bassinet and the next, I’m thinking we should be planning burial services.
Thursday, Friday, and Saturday were spent making trips to the hospital for different appointments. Thursday, I had my regular prenatal visit. Friday, was our ultrasound. The baby is growing at a good rate so that is positive. She is about 4 ½ pounds right now. The more weight she gains before birth the better. It was hard to view the lung tissue this time because of the way she was positioned. It looked like it had probably increased; but then the specialist informed us that even if the chest cavity contains 50% of the lung tissue there may be problems with the blood vessels and other items working correctly. Basically, there is no guarantee that she will be able to breathe at birth even with the help of a ventilator.
It looks like the date for inducing will probably be pushed back. The specialist thinks that I should probably wait until I’m about 39 weeks, thus, inducing around the first few days of April. I’m definitely in no hurry, so that is fine with me. My only concerns are about going into early labor. Katelyn was 11 days early and born at 4:37am. The specialist kept emphasizing how important it was that if I do go into labor early that everyone is immediately notified of my condition (i.e. NICU team, pediatric surgeon, etc.). I wish I could tell the pediatric surgeon to please not go out-of-town or be unavailable for any reason for the next six weeks. I guess there are two back-up surgeons, but when I’m thinking about my baby’s life I want the person with the most experience doing the operation.
On Saturday, we had the hospital tour. I expect ultrasound appointments to be difficult, but I wasn’t really expecting the hospital tour to be hard. After a few minutes of listening to the presentation, I thought, “why didn’t I bring Kleenex in case I start crying?” Bryan and I probably looked like the “Debbie Downer” couple in front of the group of happy parents-to-be. I managed not to cry. On the tour, we learned that my recovery room will be on the 8th floor of the hospital and the baby will be in the NICU on the 2nd floor. I guess I better bring a bathrobe so I can trek back and forth. It is hard to imagine her being so far away. When Katelyn was born, Bryan and I took turns holding her. We didn’t like to place her in the bassinet a few feet from the bed. I couldn’t even imagine letting her stay in the hospital nursery; I didn’t want her out of my sight.
Katelyn’s birthday is in two weeks. I’m starting to plan a birthday party for her. I definitely have an immense appreciation for the importance of birthdays right now. I hope our second daughter will also be able to experience the joy of birthday celebrations.
On a much lighter note, Katelyn continues to make us laugh. Check out this video:
2 comments:
Hi my name is MAtt and we have heard of your daughters condition thru mutual friends. We live in Bham. Our daughter Lily had CDH, discovered in utero and is now 2 years old! My wife and I would love to connect with you and encourage you guys. So many people came around us when we went thru this. We would be honored to speak truth and hope to you guys right now. If this is ok with you yo can email me and my wife Carla at mshaver@williamsform.com. Peace and hope is our prayer for you during this. I hope we can chat.
Ciao,
my name is Mataio Gillis, my wife Jessica and I live in Bellingham, WA. Our son Nico was born in June with Gastroschisis. This came as a shock to us, the local hospital was unprepared to deal with this emergency and we found ourselves wrapped up in something that enveloped us for the next 6 months. He is now 8 months old.
We often say to ourselves how fortunate we were "to not know" about his condition prior to birth, because our focus was on loving the growing infant inside Jessica and planning only for the best.
Once he was born, Jessica and I discovered how different we were in dealing with the gravity of the medical condition. I prepared for the worst, she remained steadfast in her hope and devotion.
I know that we are lucky he is alive today!
I feel guilty each and every day that I was not stronger, that I couldn't have more hope, more strength. I feel guilty that I was selfish in my inner preservation - I spent so much time in the moment, planning for the worst case scenario.
Matt and Carla have already contacted you - we live 6 houses away from them. The fact that our children were born so close togehter in time and proximity, with similar defects concerns me about the environment. The fact that you spent time in Bellingham, and your child has been diagnosed with this similar condition is alarming.
I ask you to be as proactive as possible... Ask Questions, Research, Reach out! The ronald McDonald House and Seattle Children's Hospital made our experience bearable! Matt and Carla owe their childs life to the swift work done by Shriner's hospital in Seattle.
Our Surgeons name is Dr. Adam Goldin. We owe him our life and our son's life.
Please reach out - please prepare for the best - and embrace this experience and the similar experiences of others to know that what they say is true "What ever does not kill you - makes you Stronger!" Coming from a man who does not embrace any one faith, I hope this does not sound hypocritical - however, "PLEASE HAVE FAITH!"
you can reach us at mmjag2000@gmail.com
We will be thinking of you!
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