Monday, February 26, 2007

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Toby's Blog Day 2-Part I

Well, I thought for a moment things were looking up today. First, I got the good news that Toby was doing so well that they were going to take his tube out. I was glad. They said that once they did that and he was stable, I could see him. Finally!!! I’ve waited nine months and then some for this moment. They said they would bring him by shortly and the neonatalogist would stop by to answer any of my questions and to explain what happened last night.

In the meantime, Tom called and said his flight was delayed. I gave him the good news that Toby was coming off the ventilator so he wouldn’t worry. All I have to do now, is to order the birth announcement cards. Fortunately, my mother is coming by today and she can place the order for me. I have the perfect ones all picked out; all they need are Toby’s stats. I’ll post it on the blog when they arrive!

I was so excited when they left the room. I was waiting and waiting to see Toby when Dr. M came in. He’s Toby’s neonatalogist. Apparently, when they when to extubate Toby, he started seizing and they had to give him some Phenobarbital to stop the seizures. Before they could do that, they had to put the tube back in him. He’s not even one day old yet and he’s already had a rough life. It’s just not fair. This is not what I imagined it would be like.

He said they’ll probably do a few more tests: an EEG, C.T. scan and possibly an MRI. I don’t know for sure yet. I asked if he was going to be o.k. and he said that they need to take it one day at a time for now. He said they were doing everything they could for him. I just don’t feel good about this. I really wish Tom were here. It’s so hard to concentrate on what they are telling me. I am on this painkiller and I can hear them but I feel like I keep asking the same questions again and again. I hope I am making sense to you guys. I can’t wait until my Mom gets here. Maybe she can see the baby and tell me all about him.

Please pray for Toby. I don’t feel very good about this.

Toby's Blog Day 2-Part II

Tom arrived at the hospital late this afternoon, several hours after Dr. M left. I was never so glad to see him, although I have to admit, I looked a little worse for the wear. It didn’t seem to matter much, because as soon as I saw his face, I immediately felt better. He arrived with the most beautiful roses I have ever seen. They were a silvery lavender rose, edged in crimson. He said it was the closest thing to a “blue” rose he could find. He was sweet like that, always knowing the right thing to say. He’s known for a long time that my two favorite things in the world are flowers and children, specifically little boys. I always told him how I’d love to have some little boys grow up just like him.

He gave me two dozen roses and said that somehow, after all I have been through, one dozen wasn’t enough. He made me laugh until my throat hurt so bad, like a steel Wusthof knife had just gone through my throat. I forgot for a moment, just how sore it was.

I regained my composure and filled him in on the bad news, that Toby had taken a turn for the worse. He had been under the impression, he was coming off the ventilator and we were out of woods so to speak. I filled him in on what Dr. M had told me just a few hours earlier. I began to cry. Tom hugged me and told me to read the card. The card was even better. I have long collected botanical prints, specifically roses, as well as being a member of our local rose society. He thinks it’s silly and yet, he never ceases to amaze me with some of the beautiful roses he sends me.

The card was attached to a gift, which he insisted that I open first, prior to reading the card. It looked to be a picture frame of sort, but of course, I needed to be surprised. And surprised I was.

He had printed off the Rose fact sheet for this rose, called Angel Face, which was the name of the roses he had just given me. On top of the picture was a note. It read,

“My Dearest Wife,

When I asked the nurses what our son looked like, they told me he had the face of an angel. I thought it was only appropriate to find a rose that fit Toby. I settled on this rose, “Angel Face” in honor of our new son. I thought it was especially appropriate, when I read the comments. It said, “Vigorous; good disease resistance; upright, bushy habit; free flowering; good cut flower; needs full sun; leathery, shiny dark green leaves.” I thought this captured his essence. Vigorous-He was definitely a fighter. Disease Resistance-He’s pulling through this stuff. Upright-Almost two feet tall. Bushy habit-At 11 pounds, I thought this fit! Needs full sun-With a loving mother like you, he will surely blossom.



I knew then that we had turned the corner.


Chris and Vic said...

When I compare the other account of what is happening with Toby to this mother's reality, I am astounded at the disconnect. What is meaningful to the docs is not what is meaningful to you.
You are speaking two vastly different languages.
You, as the mom, haven't yet been at Toby's bedside, and haven't seen with your own eyes what people are telling you.
For someone to say that Toby has the face of an angel and not describe to you the look of the seizures as he was taken off the vent . . . means that you were only told one side of the story.
I am, as I say, astounded at the disconnect. (You must remember, I have been part of this specialized branch, neonatology, for 17 years. It is stunning to me at this late date, how parents and professionals are NOT on the same page.)
Chris and Vic

Chris and Vic said...

Okay. How many hours have gone by, exactly?
Have you signed a consent for treatment?
Have you had any doc or NNP come to you since Toby has been delivered, to say what the issues are---to help you to understand hypoxia, blood pressures that are high and what that means, and what meds will be used?
The NNP/docs had warnings about this eventuality--that is, the implications of hypoxia--have they shared this with you?
Have you received a photo from the NICU? Have you visited yet? (Yes, you can be wheeled down there on a gurney or hospital bed.) Do you feel you have had a chance to "bond" with Toby yet? Have you seen his beautiful face yourself? Have you expressed your grief and fears to anyone? Nurses? on the post-partum floor or in the NICU? Has anyone helped you to anticipate any of the issues with yourself or with the baby?
(The only thing I see is at the other blogspot, where they are going to ask you to express breast milk, to help ward off another, different risk--to the intestines--related to hypoxia.)
Did the NNP, come to you before she went off duty? Did you get a chance to formulate questions and ask them of her? After all, she was there when all this happened, and she alone can answer first-hand. (It looks as if she was whisked away, reading the Ex Utero account.)

To me, it appears that you, the mom, have been left in the dust. The dad, even moreso. The professionals are off and running with Toby's care, and you are hours behind in receiving info and participating in his life and cares.

You cannot be comforted with roses, no matter their beauty. The rose-breeding has nothing to do with anything. You need to see and focus on Toby, and bonding with him is of paramount importance. Where is this bonding in anybody's list of priorities???!!!
Chris and Vic

Anonymous said...

Wow. Five years ago my daughter was born with Apgars of 2,4 and 5. For weeks we had no clue what was wrong with her until she was finally diagnosed with Congenital Myotonic Dystrophy.

This is such an accurate portrayl of what happens when a baby is born with unexpected problems.

My daughter died in the NICU when she was five months old. Five months is a long time to deal with the NICU. The disconnect between NICU staff and the parents is SO real.

Five years later I still have both horrible and wonderful memories of the NICU. For the most part the nurses were awesome and did everything they could to help us bond with our daughter. The docs were a different story, however.

I can't wait for tomorrow's installment.


Sarabeth said...

Chris and Vic, Your comment made me think back to when a friend of mine was emailing daily while her twins were in the NICU. I searched around and found the missives from the first few days. Not once did she mention consent forms or specific talks with one person. That came later when she was calmer.

In fact, the email from the second day related a story of a butterfly who was helped out of its cocoon instead of having to fight its way out.

So, based on my experience as a recipient of these types of accounts, this mom is writing exactly what I would expect.

Chris and Vic said...

So, maybe there are two different goals here:
1) Taking this mom where she is. She is where she is. Period.
2)Presenting an ideal, where the mom is taken from where she is (often enough she is still "taking in" a la Reva Rubin's developmental phases for the newly delivered mom, and focused on herself, needing to relive and retell the story of the labor/delivery) to where she needs to be, keeping up with her infant's rapidly changing condition and helping make the adjustments and participate in the decisions that are being made during this time by the medical team.

I vote for and hope for #2.

There is, to me, no #3. Being calmer is NOT #3. Being calmer is a luxury. It is not a static condition or even to be hoped-for. (Besides, this mom seems not to be upset---she has not been told enough to be upset!!) She states she has a feeling that things are not going well. ("I don't feel very good about this.")
Chris and Vic

Sarabeth said...

When I said calmer, I meant that my friend had dealt with her own emotional issues about delivering early and via c-section. She had heard everything that the docs and nurses had to say. She had time to process everything. That was when she was calmer and could make clear decisions for her children.

I had plenty of questions for my friend at that time regarding her care and the information she was getting about her babies. However, I waited until she was ready to share that with me and others.

If this mom was your friend would you pepper her with these questions? Would you say to her that last bit your wrote? You cannot be comforted with roses, no matter their beauty. The rose-breeding has nothing to do with anything. You need to see and focus on Toby, and bonding with him is of paramount importance. Where is this bonding in anybody's list of priorities???!!!

Chris and Vic said...

As her nurse, I, too, would listen and assess this mom's readiness to go forward.

If this mom was ME, I would say, "Yes, dear (to my husband), the roses are sweet and I will remember them always as symbolic of our situation, but let's go see how Toby is doing. I need to hold or at least touch him." (In case anybody still has any doubt, BONDING is my issue here.) I would want full disclosure. I wouldn't want to be babied or protected from hearing hard things. I would say, "I can hear anything you have to say. Tell me everything."
Chris and Vic

Sarabeth said...

You avoided my question.

I, too, would not be comforted by roses given by my husband, but I know plenty of women who would be. I was very grateful that my husband chose to stay beside me while I was going into shock after a stat c-section instead of worrying about our baby who was in capable hands.

Bonding with a baby can be very difficult after a c-section such as this mother had. That disconnect rings true to me. To this day, my husband is more bonded to our first child than I am.

neonataldoc said...

Just curious, DM. Why haven't you been to the NICU to see the baby? Are you too sick? Did they bring you a picture?

Cathy said...

I also am wondering why Mom hasn't been to visit the baby? Having an uncomplicated c-section would not keeps mom's from the NICU.

When my little grandson was just born a few months ago at 32 weeks, my DIL had a c-section. Just a few hours later she had my son take her in the wheelchair to the Level II nursery, where there after she spent almost all of her time. So unless something seriously went wrong here this doesn't seem likely.

Sarabeth said...

There are many reasons why she wouldn't be able to move.

1. Her c-section was under general anasthetic.
2. She had a classical c-section (one longitudinal to the torso).
3. She's afraid to move from fear of pain. (Trust me. I've been there.)

JSmith5780 said...

I have to agree with Sarabeth on the not moving part. My twins were born at 34 weeks. The first arrived vaginally, the cord for baby B prolapsed and I had a stat c-section, under general. It was probably 4-5 hours later before I was coherent enough to ask my husband what happened during those few hours. Although they did manage a transverse cut, the pain was excrutiating. They almost wouldn't release me because of the pain I was experiencing. I have never had an issue with general in the past and I brithed my nearly 10lb baby without an epidural so I have a pretty good threshold for pain. I physically, despite my mental desire, couldn't pick up my babies on my own for nearly 2 weeks.

Even if this were real, not being in that mother's shoes, not knowing her pain tolerance, you can't judge her actions. It is easy to say what you would do, for you know yourself and your limitations.

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